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23
UvA-DARE is a service provided by the library of the University of Amsterdam (http://dare.uva.nl) UvA-DARE (Digital Academic Repository) Vulnerable populations and genetic disorders: a socio-science approach to the application of genetic technology in China Sui, S. Link to publication Citation for published version (APA): Sui, S. (2010). Vulnerable populations and genetic disorders: a socio-science approach to the application of genetic technology in China. General rights It is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), other than for strictly personal, individual use, unless the work is under an open content license (like Creative Commons). Disclaimer/Complaints regulations If you believe that digital publication of certain material infringes any of your rights or (privacy) interests, please let the Library know, stating your reasons. In case of a legitimate complaint, the Library will make the material inaccessible and/or remove it from the website. Please Ask the Library: https://uba.uva.nl/en/contact, or a letter to: Library of the University of Amsterdam, Secretariat, Singel 425, 1012 WP Amsterdam, The Netherlands. You will be contacted as soon as possible. Download date: 18 Jan 2020
Transcript of Vulnerable populations and genetic disorders · VULNERABLE POPULATIONS AND GENETIC DISORDERS Legal...
UvA-DARE is a service provided by the library of the University of Amsterdam (httpdareuvanl)
UvA-DARE (Digital Academic Repository)
Vulnerable populations and genetic disorders a socio-science approach to the application ofgenetic technology in China
Sui S
Link to publication
Citation for published version (APA)Sui S (2010) Vulnerable populations and genetic disorders a socio-science approach to the application ofgenetic technology in China
General rightsIt is not permitted to download or to forwarddistribute the text or part of it without the consent of the author(s) andor copyright holder(s)other than for strictly personal individual use unless the work is under an open content license (like Creative Commons)
DisclaimerComplaints regulationsIf you believe that digital publication of certain material infringes any of your rights or (privacy) interests please let the Library know statingyour reasons In case of a legitimate complaint the Library will make the material inaccessible andor remove it from the website Please Askthe Library httpsubauvanlencontact or a letter to Library of the University of Amsterdam Secretariat Singel 425 1012 WP AmsterdamThe Netherlands You will be contacted as soon as possible
Download date 18 Jan 2020
BIBLIOGRAPHY
BIBLIOGRAPHY
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Human Genetics American Journal for Human Genetics 272 240ndash242
AGNC (Association of Genetic Nurses and Counsellors) 2008a Code of Ethics
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March 2010]
AGNC (Association of Genetic Nurses and Counsellors) 2008b Training to be a
genetic counsellor Online httpwwwagncorgukhowtobecomeaGChtm
[Accessed date March 2010]
Andanda P 2005 Module two informed consent Developing World Bioethics 51
14-29
Baker D L Schuette JL amp Uhlmann WR1998 A guide to genetic counseling
New York Wiley-Liss 2-4
Beijing Daily 2006 Be Cautious about Genetic Testing (jiyin jiance yao jinshen)
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2006-2-16]
Berg J W Appelbaum P S Lidz C W amp Parker L S 1987 Informed Consent
163
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Legal Theory and Clinical Practice New York Oxford University Press
Biesecker B B 2001 Goals of genetic counseling Clinical Genetics 60323ndash330
Billings P R Kohn M A De Cuevas M Beckwith J Alper J S amp Natowicz M
1992 Discrimination As a Consequence of Genetic Testing American Journal
for Human Genetics 50476-482
Binkert F Mutter M amp Scbinzel A 2002 Impact of prenatal diagnosis on the
prevalence of live birth with Down syndrome in the eastern half of
Switzerland 1980ndash1996 Swiss Medical Weekly132 478ndash484
Brandt-Rauf S 2006 Ashkenazi Jews and Breast Cancer The Consequences of
Linking Ethnic Identity to Genetic Disease The American Journal of Public
Health 96111979-1988
CDPF (China Disabled Personsrsquo Federation) 2008 The situation of mental
retardation in China (zhongguo zhili chidun zhe de xianzhuang) [中国残联
《中国智力迟钝者的现状》] Online httpwwwcdpforgcnsytjcontent
2008-0407content_84131htm[ Accessed date March 2010 ]
CDPF (China Disabled Personsrsquo Federation) 1989 A letter to suggest speed up the
healthy birth legislature for preventing congenital disability (guanyu jiasu
jianshe yufang xiantian quexian de jianyi) The Second Session of the First
Presidium 15 March [中国残联《关于加速预防先天缺陷的建议》 残联
第一次常务委员会第二次会议 1989 3 15]
Chan T Y amp Critchley J A 1996 lsquoUsage and adverse effects of Chinese herbal
medicinersquo Human amp Experimental Toxicology 15 5ndash12
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Chen L 2004 Analysis on the current situation of sexual proportion of infant in China
and the countermeasure (Zhongguo xingbie bi de xianzhuang ji dui ce fenxi)
Population Journal (Renkou zazhi) 2 46ndash49 [陈俐 中国性别比现状与对策
分析《人口杂志》2004246-49]
Chen J Y amp Clark M J 2007 lsquoFamily function in families of children with
Duchenne muscular dystrophyrsquo Family Community Health 304 296ndash304
Chen M G 1992 Health law（Weisheng faxue） Shanghai Medical University Press
（Shaihai yike daxue chubanshe） 200ndash205 [陈明光《卫生法学》 上海
医科大学出版社1992 200-205]
Chen X 2005 Beijing punish medical exaggerated advertisement (Beijing cheng zhi
xujia yiliao guanggao ) Chinese Industry and Commerce Daily (Zhonghua
gongshang bao) 10 August [陈新 北京惩治虚假医疗广告《中国工商报》
2005-8-10 ]
Chen Z Chen R B Qiu R Z Du R F amp Lo WH 1999 Chinese geneticists are
far from eugenics movement American Journal for Human Genetics 1064
1199
CIOMS (Council of International Organizations of Medical Sciences) 2002
International ethical guidelines for biomedical research involving human
subjects guidelines 4 5 and 6
Online httpwwwciomschframe_guidelines_nov_2002 [Accessed date
March 2010]
Clarke A 1991 Is nondirective counselling possible Lancet3351145-1147
165
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Clarke A 1997 The process of genetic counselling In Harper PS Clarke A eds
Genetics society and clinical practice Oxford Bios Scientific Publishers
Clarke A eds 1994 Genetic Counseling Practice and Principles London and New
York Routledge
CRCF (Chinese Red Cross Foundation) 2005 lsquoTianshi zhi enrsquo Fund Help 650
Thousands Children with DMD (tianshi zhi en jiuzhu 65wan ji weisuo huan er)
17 November [ 中国红十字会《lsquo天使之恩rsquo基金帮助 65 万肌萎缩患儿》
2005-11-17 ]
Onlinehttpwwwcrcforgcnsyshtmllm_42007-09-12113730htm
[Accessed date March 2010]
CRCF (Chinese Red Cross Foundation) 2007 Another beneficiary of lsquoTianshi zhi
enrsquo (tainshi zhi en zaici xingdong) [中国红十字会《天使之恩再次行动》] Online
httpwwwcrcforgcnsyshtmllm_12007-08-23104035htm [Accessed date
March 2010]
Critchley J A Zhang Y Suthisisang C C Chan TY amp Tomlinson B 2000
lsquoAlternative therapies and medical science designing clinical trials of
alternativecomplementary medicines ndash is evidence-based traditional Chinese
medicine attainable Journal of Clinical Pharmacology 40 462ndash467
Cuekle H 1995 Improved parameters for risk estimation in Down syndrome
screening Prenatal Diagnosis 15111057ndash1065
Cwik V amp Brooke M 1996 lsquoDisorders of muscle ndash dystrophies and myopathiesrsquo In
Berg B eds Principles of child neurology 1665ndash1671 New York
McGraw-Hill
166
BIBLIOGRAPHY
Davin D1985 The single-child family policy in the countryside In Croll E Davin
D amp Kane P eds Chinarsquos one-child family policy New York St Martinrsquos
Press
Deng J Peng W L Li J Fang C Liang X Y Zeng Y H Sun H Y Zhou C
Q amp Zhuang G L 2006 Successful preimplantation genetic diagnosis for
alpha- and beta-thalassemia in China Prenatal Diagnosis 26111021-1028
Dice LR 1952 Heredity clinics their value for public service and for research
American Journal of Human genetics41 1ndash13
Dickson D 1994 Concern grows over Chinarsquos plans to reduce number of lsquoinferior
birthsrsquo Nature 366458 3
Dikotter F 1998 Imperfect conceptions medical knowledge birth defects and
eugenics in China London Turst amp Company145
Ding W amp Hu X M 2000 Controlling population quantity and improving quality
is still the inevitable choice for China（Kongzhi renkou shuliang tigao renkou
zhiliang reng shi wo guo biran xuanze） Guangming Daily(guangming ribao)
20 December [丁伟胡晓梦控制人口数量提高人口质量 仍是我国必然
选择光明日报2000-12-20]
DMD Forum 2001 Guides for Parents-Parenting Online httpwwwdmdforumorg
guidesparentinghtml [Accessed date March 2010]
Duncan R E 2004 Predictive genetic testing in young people when is it
appropriate Child Health 40593-595
167
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Emery A E H 1991 Population frequency of inherited neuromuscular disease ndash a
world survey Neuromuscular Disorders 1 19-29
Encyclopedia of Chinese (zhongguo baike quanshu)1994 v Medicine Beijing Press
of Chinese Encyclopedia(zhongguo baike quanshu
chubanshe)1727ndash1730[中国百科全书第四卷医学北京中国百科
全书出版社 1994]
Fang L amp Wen H L 2009 12 years prenatal screening of Provincial Maternity and
Child Care Hospitals of Hubei province (Hubei fuyou 12 nian chanqian
shaicha )Onlinehttpnewscnhubeicomctdsbctdsbsgkctdsb15200904t6297
23shtml [Accessed March 2010 ][方琳温红蕾湖北省妇幼 12 年筛查]
Fine B A 1993 The evolution of non-directiveness in genetic counselling and
implications of the human genome project In Bartels D M Leroy B S amp
Caplan A L eds Prescribing our future ethical challenges in genetic
counselling 97-119 New York Aldine de Gruyter
Friedrich M J 2002 Preserving privacy preventing disclosure becomes the
province expert The Journal of the American Medical Association 21815-821
Frosst P amp Wattendore D 2006 At-home genetic test American Family Physician
733540-541
Fulda LG amp Lyken K 2006 Ethical issues in predictive genetic testing a public
health perspective Journal of Medical Ethics 32143-147
Galton F1883 Inquiries into human faculty and its development 2nd ed London
Dent (reprinted 1951) 24ndash25
Galton F1909 The possible improvement of the human breed under the existing
168
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condition of law and sentiment In Essays in Eugenics London Eugenics
Education Society 24
Gardner-Medwin D amp Sharples P 1989 Some studies of the Duchenne and
autosomal recessive types of muscular dystrophy Brain Development 11
91ndash97
Goffman E 1986 Stigma notes on the management of spoiled identity First
Touchstone Edition New York Simon amp Schuster 2-5
GPPC (Genetics and Public Policy Centre) 2004 Reproductive genetic testing What
America thinks Online
httpwwwdnapolicyorgimagesreportpdfsReproGenTestAmericaThinkspdf
[Accessed date March 2010]
Gray E J amp Clarke A 2000 Shared decision making and non-directiveness in
genetic counselling Journal of Medical Genetics 37135ndash138
Greenhalgh S 2003 Science Modernity and the Making of Chinarsquos One-Child policy
Population and Development Review 292163-196
Greenhalgh S amp Winckler E A 2005 Governing Chinarsquos population Stanford CA
Stanford University Press 95
Hansson M G 2005 Building on relationships of trust in bi-bank research Journal
of Medical Ethics 31 415418
Harper P S 1988 Genetic councelling in Mendelian disorders In PS Harper eds
Practical genetic councelling London Wright 18-41
169
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Harper P S 2004 Practical genetic counselling 6th eds Oxford Oxford University
Press
Harris M Winship I amp Spriggs M 2005 Controversies and Ethical Issues in
Cancer-genetic Clinics The Lancet Oncology 65 301-310
Harris R 1998 Genetic counselling and testing in Europe Journal of the Royal
College of Physicians of London 32 335ndash338
He L amp Shi W X eds 1989 Modern medical ethics Zhejiang Education
Press139ndash146 [何伦施卫星现代医学伦理学浙江教育出版社1989]
He X amp Xiao Q 2008 Umbilical Cord Blood Bank should be standardized
(qixueku yingdang guifan hua) Keji ribao 25 February [何新肖青脐血库应
当规范化科技日报 2008-2-25]
Herndon C N 1955 Heredity counselling Eugenics Quarterly22 83ndash89
Hsia Y E 1977 Approaches to the appraisal of genetic counseling In Lubs H A
De la Cruz F F eds Genetic Counseling 53ndash82 New York Raven Press
Huang Q 2006 Test gene does it like check-up (jiance jiyin he tijian yiyang ma)
Xinming weekly (Xinming Zhoukan) 13 Aprial [黄祺 检测基因和体检一样
吗新民周刊2006-4-13]
Huang S Z 2007 The consideration about the current situation of antenatal
diagnose in China[Guanyu zhongguo chuanqian zhenduan xianzhuang de
sikao]Chinese Journal of Healthy Birth amp Child Care[zhongguo yousheng
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youyu zazhi] 13266-69 [黄尚志关于我国产前诊断现状的思考《中
国优生优育杂志》 2007-2]
Huang S Z amp Gao Z Y 2006 History of medical genetics in China Journal of
Peking UniversityHeath Science (English) 381 9-13
Hui Y 2004 New century Chinese-English dictionary(xin shiji hanying cidian)
Beijing Foreign Language Teaching and Research Press1964ndash1965 [惠宇
《新世纪汉英辞典》 北京外语教学与研究出版社2004]
Jiao Z X Zhuang G L Zhou C Q Shu Y M Li J amp Liang X Y 2004
Birth of healthy children after preimplantation diagnosis of beta-thalassemia
Chinese medical Journal (English) 1174483-487
Jorde L B Carey J C Bamshad M J amp White R L 1999 Medical Genetics 2nd
eds St Louis Mo Mosby Inc
Kaufman J amp Fang J 2002 Privatization of health services and the reproductive
health of rural Chinese women Reproductive Health matters 1020108-116
Kent G Howie H Fletcher M Newbury-Ecob R amp Hosie K 2000 The
relationship between perceived risk thought intrusiveness and emotional
well-being in women receiving counselling for breast cancer risk in a family
history clinic Brtish Journal of Health Psychol 515-26
Kerr A amp Shakespeare T 2002 Genetic politics from eugenics to genome
Cheltenham UK New Clarion Press 125ndash127
Kohrman M 1999 Grooming Quezi marriage exclusion and identity formation
among disabled men in contemporary China American Ethnologist 264
171
VULNERABLE POPULATIONS AND GENETIC DISORDERS
890ndash909
Konrad M 2003 Predictive genetic testing and the making of the pre-symptomatic
person prognostic moralities amongst Huntingtons-affected families
Anthropology amp Medicine10123-49
Konrad M 2005 Narrating the New Predictive GeneticsCambridge Cambridge
University Press
Knoppers J Y amp Godard B 2003 Genetic information and life insurance a real
risk European Journal of Human Genetics11561-564
Latz I 1981 Stigma a social psychological analysis2ndHillsdale New Jersey
Lawrence Erlbaum Associates
Lei Z H eds 1991 Handbook of Family Planning Administration[jihua shengyu
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[雷卓汉《计划生育实施手册》甘肃计划生育委员会]
Lemmens T 2000 Selective Justice Genetic Discrimination and Insurance Should
We Single Out Genes in Our Laws McGill Law Review 45 2 347-412
Li C amp Zhou J 2005 Hubei asks for permission for prenatal genetic testing (Hubei
chanqian yichuan jiance yaoqiu zhunruzhi) Xinhua News 9 December [李才周
杰湖北产前遗传检测要求准入制《新华通讯》 2005-12-9]
Li D Z Liao C Li J amp Xie X 2006 Prenatal diagnosis of b-thalassemia in
Southern China European Journal of Obstetrics amp Gynecology and
Reproductive Biology 12881ndash85
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Li J 2006 Free testing for Thalessemia in Nanning (Nanning mianfei jiance dizhong
hai pinxue) Chinese Population（Zhongguo Renkou） 19 June [李杰南宁免
费检测地中海贫血 《中国人口》 2006-6-19]
Lin T Y amp Lin M C 1980 Love denial and rejection-responses of Chinese
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Abnormal Behavior in Chinese Culture Boston MA D Reidel
Liu MF 2007 Five hospitals got permission for prenatal genetic testing in Beijing
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口研究》 2005-3]
Liu Z Y 2006 Cultural conception as demonstrated in the choice of medical
treatment of Tibetan (zangmin jiuyi xingwei xuanze de wenhua guannian)
Opening Era (kaifang shidai) 4 111-123 [刘志扬 西藏农民就医选择的文化
观念《开放时代》2006-4]
Lock M 2005 The Eclipse of the Gene and the Return of Divination Current
Anthropology 4647-70
Lu HY 2005 Does genetic testing predict 47 diseases [jiyin jiance keyi yuce 47
zhong jibing ma] Jingbao Daily 29 November [鲁华源 基因检测可以预测 47
173
VULNERABLE POPULATIONS AND GENETIC DISORDERS
种疾病《竞报》 2005-11-29]
Luo J Y 2005 The present status and future trend of birth defect intervention in
China （woguo chusheng quexian ganyu de xianzhuang yu fazan qushi）
Practical Preventive Medicine (shijian yifang yixue) 122458-460 [罗家友我
国出生缺陷干预的现状与发展趋势《实践预防医学》 200512]
Macleod P M 1993 Implication of the child with malformations for the family and
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malformations and related anomalies Vol I Oxford Monographs on Medical
Genetics No 27 187ndash196 Oxford Oxford University Press
Mao X 1998 Chinese geneticistsrsquo view of ethical issues in genetic testing and
screening evidence for eugenics in China American Journal of Human
Genetics 63688-695
Marteau T amp Richards M eds 1996 The troubled helix social and psychological
implications of the new human genetics Cambridge Cambridge University
Press
Martin P 2001 Genetic governance the risks oversight and regulation of genetic
databases in the UK New Genetics and Society 202 157ndash183
Mavis J amp Brian S 2003 The governance of human genetics policy discourse and
constructions of public trust New Genetics and Society 221 21-41
Mc Carrick P M 1993 Genetic testing and genetic screening Kennedy
Institute of Ethics Journal Sep 33333-354
Meng K L 2004 Chinarsquos evolving health care market how doctors feel and what
174
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they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
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banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
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shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
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Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
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地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
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Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
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of children and adult with thalassemia in the UK London UKTS
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date March 2010]
UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
March 2010]
180
BIBLIOGRAPHY
Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
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Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
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Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
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183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
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AGNC (Association of Genetic Nurses and Counsellors) 2008a Code of Ethics
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March 2010]
AGNC (Association of Genetic Nurses and Counsellors) 2008b Training to be a
genetic counsellor Online httpwwwagncorgukhowtobecomeaGChtm
[Accessed date March 2010]
Andanda P 2005 Module two informed consent Developing World Bioethics 51
14-29
Baker D L Schuette JL amp Uhlmann WR1998 A guide to genetic counseling
New York Wiley-Liss 2-4
Beijing Daily 2006 Be Cautious about Genetic Testing (jiyin jiance yao jinshen)
Beijing Daily(Beijing ribao) 16 February [基因检测要谨慎北京日报
2006-2-16]
Berg J W Appelbaum P S Lidz C W amp Parker L S 1987 Informed Consent
163
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Legal Theory and Clinical Practice New York Oxford University Press
Biesecker B B 2001 Goals of genetic counseling Clinical Genetics 60323ndash330
Billings P R Kohn M A De Cuevas M Beckwith J Alper J S amp Natowicz M
1992 Discrimination As a Consequence of Genetic Testing American Journal
for Human Genetics 50476-482
Binkert F Mutter M amp Scbinzel A 2002 Impact of prenatal diagnosis on the
prevalence of live birth with Down syndrome in the eastern half of
Switzerland 1980ndash1996 Swiss Medical Weekly132 478ndash484
Brandt-Rauf S 2006 Ashkenazi Jews and Breast Cancer The Consequences of
Linking Ethnic Identity to Genetic Disease The American Journal of Public
Health 96111979-1988
CDPF (China Disabled Personsrsquo Federation) 2008 The situation of mental
retardation in China (zhongguo zhili chidun zhe de xianzhuang) [中国残联
《中国智力迟钝者的现状》] Online httpwwwcdpforgcnsytjcontent
2008-0407content_84131htm[ Accessed date March 2010 ]
CDPF (China Disabled Personsrsquo Federation) 1989 A letter to suggest speed up the
healthy birth legislature for preventing congenital disability (guanyu jiasu
jianshe yufang xiantian quexian de jianyi) The Second Session of the First
Presidium 15 March [中国残联《关于加速预防先天缺陷的建议》 残联
第一次常务委员会第二次会议 1989 3 15]
Chan T Y amp Critchley J A 1996 lsquoUsage and adverse effects of Chinese herbal
medicinersquo Human amp Experimental Toxicology 15 5ndash12
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Chen L 2004 Analysis on the current situation of sexual proportion of infant in China
and the countermeasure (Zhongguo xingbie bi de xianzhuang ji dui ce fenxi)
Population Journal (Renkou zazhi) 2 46ndash49 [陈俐 中国性别比现状与对策
分析《人口杂志》2004246-49]
Chen J Y amp Clark M J 2007 lsquoFamily function in families of children with
Duchenne muscular dystrophyrsquo Family Community Health 304 296ndash304
Chen M G 1992 Health law（Weisheng faxue） Shanghai Medical University Press
（Shaihai yike daxue chubanshe） 200ndash205 [陈明光《卫生法学》 上海
医科大学出版社1992 200-205]
Chen X 2005 Beijing punish medical exaggerated advertisement (Beijing cheng zhi
xujia yiliao guanggao ) Chinese Industry and Commerce Daily (Zhonghua
gongshang bao) 10 August [陈新 北京惩治虚假医疗广告《中国工商报》
2005-8-10 ]
Chen Z Chen R B Qiu R Z Du R F amp Lo WH 1999 Chinese geneticists are
far from eugenics movement American Journal for Human Genetics 1064
1199
CIOMS (Council of International Organizations of Medical Sciences) 2002
International ethical guidelines for biomedical research involving human
subjects guidelines 4 5 and 6
Online httpwwwciomschframe_guidelines_nov_2002 [Accessed date
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Clarke A 1991 Is nondirective counselling possible Lancet3351145-1147
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VULNERABLE POPULATIONS AND GENETIC DISORDERS
Clarke A 1997 The process of genetic counselling In Harper PS Clarke A eds
Genetics society and clinical practice Oxford Bios Scientific Publishers
Clarke A eds 1994 Genetic Counseling Practice and Principles London and New
York Routledge
CRCF (Chinese Red Cross Foundation) 2005 lsquoTianshi zhi enrsquo Fund Help 650
Thousands Children with DMD (tianshi zhi en jiuzhu 65wan ji weisuo huan er)
17 November [ 中国红十字会《lsquo天使之恩rsquo基金帮助 65 万肌萎缩患儿》
2005-11-17 ]
Onlinehttpwwwcrcforgcnsyshtmllm_42007-09-12113730htm
[Accessed date March 2010]
CRCF (Chinese Red Cross Foundation) 2007 Another beneficiary of lsquoTianshi zhi
enrsquo (tainshi zhi en zaici xingdong) [中国红十字会《天使之恩再次行动》] Online
httpwwwcrcforgcnsyshtmllm_12007-08-23104035htm [Accessed date
March 2010]
Critchley J A Zhang Y Suthisisang C C Chan TY amp Tomlinson B 2000
lsquoAlternative therapies and medical science designing clinical trials of
alternativecomplementary medicines ndash is evidence-based traditional Chinese
medicine attainable Journal of Clinical Pharmacology 40 462ndash467
Cuekle H 1995 Improved parameters for risk estimation in Down syndrome
screening Prenatal Diagnosis 15111057ndash1065
Cwik V amp Brooke M 1996 lsquoDisorders of muscle ndash dystrophies and myopathiesrsquo In
Berg B eds Principles of child neurology 1665ndash1671 New York
McGraw-Hill
166
BIBLIOGRAPHY
Davin D1985 The single-child family policy in the countryside In Croll E Davin
D amp Kane P eds Chinarsquos one-child family policy New York St Martinrsquos
Press
Deng J Peng W L Li J Fang C Liang X Y Zeng Y H Sun H Y Zhou C
Q amp Zhuang G L 2006 Successful preimplantation genetic diagnosis for
alpha- and beta-thalassemia in China Prenatal Diagnosis 26111021-1028
Dice LR 1952 Heredity clinics their value for public service and for research
American Journal of Human genetics41 1ndash13
Dickson D 1994 Concern grows over Chinarsquos plans to reduce number of lsquoinferior
birthsrsquo Nature 366458 3
Dikotter F 1998 Imperfect conceptions medical knowledge birth defects and
eugenics in China London Turst amp Company145
Ding W amp Hu X M 2000 Controlling population quantity and improving quality
is still the inevitable choice for China（Kongzhi renkou shuliang tigao renkou
zhiliang reng shi wo guo biran xuanze） Guangming Daily(guangming ribao)
20 December [丁伟胡晓梦控制人口数量提高人口质量 仍是我国必然
选择光明日报2000-12-20]
DMD Forum 2001 Guides for Parents-Parenting Online httpwwwdmdforumorg
guidesparentinghtml [Accessed date March 2010]
Duncan R E 2004 Predictive genetic testing in young people when is it
appropriate Child Health 40593-595
167
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Emery A E H 1991 Population frequency of inherited neuromuscular disease ndash a
world survey Neuromuscular Disorders 1 19-29
Encyclopedia of Chinese (zhongguo baike quanshu)1994 v Medicine Beijing Press
of Chinese Encyclopedia(zhongguo baike quanshu
chubanshe)1727ndash1730[中国百科全书第四卷医学北京中国百科
全书出版社 1994]
Fang L amp Wen H L 2009 12 years prenatal screening of Provincial Maternity and
Child Care Hospitals of Hubei province (Hubei fuyou 12 nian chanqian
shaicha )Onlinehttpnewscnhubeicomctdsbctdsbsgkctdsb15200904t6297
23shtml [Accessed March 2010 ][方琳温红蕾湖北省妇幼 12 年筛查]
Fine B A 1993 The evolution of non-directiveness in genetic counselling and
implications of the human genome project In Bartels D M Leroy B S amp
Caplan A L eds Prescribing our future ethical challenges in genetic
counselling 97-119 New York Aldine de Gruyter
Friedrich M J 2002 Preserving privacy preventing disclosure becomes the
province expert The Journal of the American Medical Association 21815-821
Frosst P amp Wattendore D 2006 At-home genetic test American Family Physician
733540-541
Fulda LG amp Lyken K 2006 Ethical issues in predictive genetic testing a public
health perspective Journal of Medical Ethics 32143-147
Galton F1883 Inquiries into human faculty and its development 2nd ed London
Dent (reprinted 1951) 24ndash25
Galton F1909 The possible improvement of the human breed under the existing
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condition of law and sentiment In Essays in Eugenics London Eugenics
Education Society 24
Gardner-Medwin D amp Sharples P 1989 Some studies of the Duchenne and
autosomal recessive types of muscular dystrophy Brain Development 11
91ndash97
Goffman E 1986 Stigma notes on the management of spoiled identity First
Touchstone Edition New York Simon amp Schuster 2-5
GPPC (Genetics and Public Policy Centre) 2004 Reproductive genetic testing What
America thinks Online
httpwwwdnapolicyorgimagesreportpdfsReproGenTestAmericaThinkspdf
[Accessed date March 2010]
Gray E J amp Clarke A 2000 Shared decision making and non-directiveness in
genetic counselling Journal of Medical Genetics 37135ndash138
Greenhalgh S 2003 Science Modernity and the Making of Chinarsquos One-Child policy
Population and Development Review 292163-196
Greenhalgh S amp Winckler E A 2005 Governing Chinarsquos population Stanford CA
Stanford University Press 95
Hansson M G 2005 Building on relationships of trust in bi-bank research Journal
of Medical Ethics 31 415418
Harper P S 1988 Genetic councelling in Mendelian disorders In PS Harper eds
Practical genetic councelling London Wright 18-41
169
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Harper P S 2004 Practical genetic counselling 6th eds Oxford Oxford University
Press
Harris M Winship I amp Spriggs M 2005 Controversies and Ethical Issues in
Cancer-genetic Clinics The Lancet Oncology 65 301-310
Harris R 1998 Genetic counselling and testing in Europe Journal of the Royal
College of Physicians of London 32 335ndash338
He L amp Shi W X eds 1989 Modern medical ethics Zhejiang Education
Press139ndash146 [何伦施卫星现代医学伦理学浙江教育出版社1989]
He X amp Xiao Q 2008 Umbilical Cord Blood Bank should be standardized
(qixueku yingdang guifan hua) Keji ribao 25 February [何新肖青脐血库应
当规范化科技日报 2008-2-25]
Herndon C N 1955 Heredity counselling Eugenics Quarterly22 83ndash89
Hsia Y E 1977 Approaches to the appraisal of genetic counseling In Lubs H A
De la Cruz F F eds Genetic Counseling 53ndash82 New York Raven Press
Huang Q 2006 Test gene does it like check-up (jiance jiyin he tijian yiyang ma)
Xinming weekly (Xinming Zhoukan) 13 Aprial [黄祺 检测基因和体检一样
吗新民周刊2006-4-13]
Huang S Z 2007 The consideration about the current situation of antenatal
diagnose in China[Guanyu zhongguo chuanqian zhenduan xianzhuang de
sikao]Chinese Journal of Healthy Birth amp Child Care[zhongguo yousheng
170
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youyu zazhi] 13266-69 [黄尚志关于我国产前诊断现状的思考《中
国优生优育杂志》 2007-2]
Huang S Z amp Gao Z Y 2006 History of medical genetics in China Journal of
Peking UniversityHeath Science (English) 381 9-13
Hui Y 2004 New century Chinese-English dictionary(xin shiji hanying cidian)
Beijing Foreign Language Teaching and Research Press1964ndash1965 [惠宇
《新世纪汉英辞典》 北京外语教学与研究出版社2004]
Jiao Z X Zhuang G L Zhou C Q Shu Y M Li J amp Liang X Y 2004
Birth of healthy children after preimplantation diagnosis of beta-thalassemia
Chinese medical Journal (English) 1174483-487
Jorde L B Carey J C Bamshad M J amp White R L 1999 Medical Genetics 2nd
eds St Louis Mo Mosby Inc
Kaufman J amp Fang J 2002 Privatization of health services and the reproductive
health of rural Chinese women Reproductive Health matters 1020108-116
Kent G Howie H Fletcher M Newbury-Ecob R amp Hosie K 2000 The
relationship between perceived risk thought intrusiveness and emotional
well-being in women receiving counselling for breast cancer risk in a family
history clinic Brtish Journal of Health Psychol 515-26
Kerr A amp Shakespeare T 2002 Genetic politics from eugenics to genome
Cheltenham UK New Clarion Press 125ndash127
Kohrman M 1999 Grooming Quezi marriage exclusion and identity formation
among disabled men in contemporary China American Ethnologist 264
171
VULNERABLE POPULATIONS AND GENETIC DISORDERS
890ndash909
Konrad M 2003 Predictive genetic testing and the making of the pre-symptomatic
person prognostic moralities amongst Huntingtons-affected families
Anthropology amp Medicine10123-49
Konrad M 2005 Narrating the New Predictive GeneticsCambridge Cambridge
University Press
Knoppers J Y amp Godard B 2003 Genetic information and life insurance a real
risk European Journal of Human Genetics11561-564
Latz I 1981 Stigma a social psychological analysis2ndHillsdale New Jersey
Lawrence Erlbaum Associates
Lei Z H eds 1991 Handbook of Family Planning Administration[jihua shengyu
shishi shouce] Printed by Gansu Commission on Family Planning131ndash132
[雷卓汉《计划生育实施手册》甘肃计划生育委员会]
Lemmens T 2000 Selective Justice Genetic Discrimination and Insurance Should
We Single Out Genes in Our Laws McGill Law Review 45 2 347-412
Li C amp Zhou J 2005 Hubei asks for permission for prenatal genetic testing (Hubei
chanqian yichuan jiance yaoqiu zhunruzhi) Xinhua News 9 December [李才周
杰湖北产前遗传检测要求准入制《新华通讯》 2005-12-9]
Li D Z Liao C Li J amp Xie X 2006 Prenatal diagnosis of b-thalassemia in
Southern China European Journal of Obstetrics amp Gynecology and
Reproductive Biology 12881ndash85
172
BIBLIOGRAPHY
Li J 2006 Free testing for Thalessemia in Nanning (Nanning mianfei jiance dizhong
hai pinxue) Chinese Population（Zhongguo Renkou） 19 June [李杰南宁免
费检测地中海贫血 《中国人口》 2006-6-19]
Lin T Y amp Lin M C 1980 Love denial and rejection-responses of Chinese
families to mental illness In Kleinman A amp Lin T Y eds Normal and
Abnormal Behavior in Chinese Culture Boston MA D Reidel
Liu MF 2007 Five hospitals got permission for prenatal genetic testing in Beijing
（Beijng wu jia yiyuan huoxu shishi chanqian yichuan jiance） Beijing Morning
Daily (Beijing Chen bao) 10 July [刘墨非 北京五家医院获许实施产前遗传
检测北京晨报 2007-7-10]Online
httplifepeoplecomcnBIG510895967176html [Accessed date March
2010]
Liu S 2005 Gender fondness of Chinese couple [Zhongguo fufu de xingbie pianhao]
Population Research [Renkou yanjiu ]31-11 [刘爽中国夫妇的性别偏好《人
口研究》 2005-3]
Liu Z Y 2006 Cultural conception as demonstrated in the choice of medical
treatment of Tibetan (zangmin jiuyi xingwei xuanze de wenhua guannian)
Opening Era (kaifang shidai) 4 111-123 [刘志扬 西藏农民就医选择的文化
观念《开放时代》2006-4]
Lock M 2005 The Eclipse of the Gene and the Return of Divination Current
Anthropology 4647-70
Lu HY 2005 Does genetic testing predict 47 diseases [jiyin jiance keyi yuce 47
zhong jibing ma] Jingbao Daily 29 November [鲁华源 基因检测可以预测 47
173
VULNERABLE POPULATIONS AND GENETIC DISORDERS
种疾病《竞报》 2005-11-29]
Luo J Y 2005 The present status and future trend of birth defect intervention in
China （woguo chusheng quexian ganyu de xianzhuang yu fazan qushi）
Practical Preventive Medicine (shijian yifang yixue) 122458-460 [罗家友我
国出生缺陷干预的现状与发展趋势《实践预防医学》 200512]
Macleod P M 1993 Implication of the child with malformations for the family and
society In Stevenson R E Hall J G amp Goodman RM eds Human
malformations and related anomalies Vol I Oxford Monographs on Medical
Genetics No 27 187ndash196 Oxford Oxford University Press
Mao X 1998 Chinese geneticistsrsquo view of ethical issues in genetic testing and
screening evidence for eugenics in China American Journal of Human
Genetics 63688-695
Marteau T amp Richards M eds 1996 The troubled helix social and psychological
implications of the new human genetics Cambridge Cambridge University
Press
Martin P 2001 Genetic governance the risks oversight and regulation of genetic
databases in the UK New Genetics and Society 202 157ndash183
Mavis J amp Brian S 2003 The governance of human genetics policy discourse and
constructions of public trust New Genetics and Society 221 21-41
Mc Carrick P M 1993 Genetic testing and genetic screening Kennedy
Institute of Ethics Journal Sep 33333-354
Meng K L 2004 Chinarsquos evolving health care market how doctors feel and what
174
BIBLIOGRAPHY
they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
Prenatal Diagnosis Technology（chuanqian zhenduan jishu guanli guanli
banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
permission of MOH （weishengbu shenhe pizhun de kaizhang renlei fuzhu
shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
176
BIBLIOGRAPHY
Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
certificate in different cities [Gedi banli zhunshegzheng de chengxu] [邵沛 各
地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
BIBLIOGRAPHY
Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
Online httpwwwuktsorgpdfsawarenessukts-standards-2008pdf [Accessed
date March 2010]
UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
March 2010]
180
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Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
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Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
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2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
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Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
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自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
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183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Legal Theory and Clinical Practice New York Oxford University Press
Biesecker B B 2001 Goals of genetic counseling Clinical Genetics 60323ndash330
Billings P R Kohn M A De Cuevas M Beckwith J Alper J S amp Natowicz M
1992 Discrimination As a Consequence of Genetic Testing American Journal
for Human Genetics 50476-482
Binkert F Mutter M amp Scbinzel A 2002 Impact of prenatal diagnosis on the
prevalence of live birth with Down syndrome in the eastern half of
Switzerland 1980ndash1996 Swiss Medical Weekly132 478ndash484
Brandt-Rauf S 2006 Ashkenazi Jews and Breast Cancer The Consequences of
Linking Ethnic Identity to Genetic Disease The American Journal of Public
Health 96111979-1988
CDPF (China Disabled Personsrsquo Federation) 2008 The situation of mental
retardation in China (zhongguo zhili chidun zhe de xianzhuang) [中国残联
《中国智力迟钝者的现状》] Online httpwwwcdpforgcnsytjcontent
2008-0407content_84131htm[ Accessed date March 2010 ]
CDPF (China Disabled Personsrsquo Federation) 1989 A letter to suggest speed up the
healthy birth legislature for preventing congenital disability (guanyu jiasu
jianshe yufang xiantian quexian de jianyi) The Second Session of the First
Presidium 15 March [中国残联《关于加速预防先天缺陷的建议》 残联
第一次常务委员会第二次会议 1989 3 15]
Chan T Y amp Critchley J A 1996 lsquoUsage and adverse effects of Chinese herbal
medicinersquo Human amp Experimental Toxicology 15 5ndash12
164
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Chen L 2004 Analysis on the current situation of sexual proportion of infant in China
and the countermeasure (Zhongguo xingbie bi de xianzhuang ji dui ce fenxi)
Population Journal (Renkou zazhi) 2 46ndash49 [陈俐 中国性别比现状与对策
分析《人口杂志》2004246-49]
Chen J Y amp Clark M J 2007 lsquoFamily function in families of children with
Duchenne muscular dystrophyrsquo Family Community Health 304 296ndash304
Chen M G 1992 Health law（Weisheng faxue） Shanghai Medical University Press
（Shaihai yike daxue chubanshe） 200ndash205 [陈明光《卫生法学》 上海
医科大学出版社1992 200-205]
Chen X 2005 Beijing punish medical exaggerated advertisement (Beijing cheng zhi
xujia yiliao guanggao ) Chinese Industry and Commerce Daily (Zhonghua
gongshang bao) 10 August [陈新 北京惩治虚假医疗广告《中国工商报》
2005-8-10 ]
Chen Z Chen R B Qiu R Z Du R F amp Lo WH 1999 Chinese geneticists are
far from eugenics movement American Journal for Human Genetics 1064
1199
CIOMS (Council of International Organizations of Medical Sciences) 2002
International ethical guidelines for biomedical research involving human
subjects guidelines 4 5 and 6
Online httpwwwciomschframe_guidelines_nov_2002 [Accessed date
March 2010]
Clarke A 1991 Is nondirective counselling possible Lancet3351145-1147
165
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Clarke A 1997 The process of genetic counselling In Harper PS Clarke A eds
Genetics society and clinical practice Oxford Bios Scientific Publishers
Clarke A eds 1994 Genetic Counseling Practice and Principles London and New
York Routledge
CRCF (Chinese Red Cross Foundation) 2005 lsquoTianshi zhi enrsquo Fund Help 650
Thousands Children with DMD (tianshi zhi en jiuzhu 65wan ji weisuo huan er)
17 November [ 中国红十字会《lsquo天使之恩rsquo基金帮助 65 万肌萎缩患儿》
2005-11-17 ]
Onlinehttpwwwcrcforgcnsyshtmllm_42007-09-12113730htm
[Accessed date March 2010]
CRCF (Chinese Red Cross Foundation) 2007 Another beneficiary of lsquoTianshi zhi
enrsquo (tainshi zhi en zaici xingdong) [中国红十字会《天使之恩再次行动》] Online
httpwwwcrcforgcnsyshtmllm_12007-08-23104035htm [Accessed date
March 2010]
Critchley J A Zhang Y Suthisisang C C Chan TY amp Tomlinson B 2000
lsquoAlternative therapies and medical science designing clinical trials of
alternativecomplementary medicines ndash is evidence-based traditional Chinese
medicine attainable Journal of Clinical Pharmacology 40 462ndash467
Cuekle H 1995 Improved parameters for risk estimation in Down syndrome
screening Prenatal Diagnosis 15111057ndash1065
Cwik V amp Brooke M 1996 lsquoDisorders of muscle ndash dystrophies and myopathiesrsquo In
Berg B eds Principles of child neurology 1665ndash1671 New York
McGraw-Hill
166
BIBLIOGRAPHY
Davin D1985 The single-child family policy in the countryside In Croll E Davin
D amp Kane P eds Chinarsquos one-child family policy New York St Martinrsquos
Press
Deng J Peng W L Li J Fang C Liang X Y Zeng Y H Sun H Y Zhou C
Q amp Zhuang G L 2006 Successful preimplantation genetic diagnosis for
alpha- and beta-thalassemia in China Prenatal Diagnosis 26111021-1028
Dice LR 1952 Heredity clinics their value for public service and for research
American Journal of Human genetics41 1ndash13
Dickson D 1994 Concern grows over Chinarsquos plans to reduce number of lsquoinferior
birthsrsquo Nature 366458 3
Dikotter F 1998 Imperfect conceptions medical knowledge birth defects and
eugenics in China London Turst amp Company145
Ding W amp Hu X M 2000 Controlling population quantity and improving quality
is still the inevitable choice for China（Kongzhi renkou shuliang tigao renkou
zhiliang reng shi wo guo biran xuanze） Guangming Daily(guangming ribao)
20 December [丁伟胡晓梦控制人口数量提高人口质量 仍是我国必然
选择光明日报2000-12-20]
DMD Forum 2001 Guides for Parents-Parenting Online httpwwwdmdforumorg
guidesparentinghtml [Accessed date March 2010]
Duncan R E 2004 Predictive genetic testing in young people when is it
appropriate Child Health 40593-595
167
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Emery A E H 1991 Population frequency of inherited neuromuscular disease ndash a
world survey Neuromuscular Disorders 1 19-29
Encyclopedia of Chinese (zhongguo baike quanshu)1994 v Medicine Beijing Press
of Chinese Encyclopedia(zhongguo baike quanshu
chubanshe)1727ndash1730[中国百科全书第四卷医学北京中国百科
全书出版社 1994]
Fang L amp Wen H L 2009 12 years prenatal screening of Provincial Maternity and
Child Care Hospitals of Hubei province (Hubei fuyou 12 nian chanqian
shaicha )Onlinehttpnewscnhubeicomctdsbctdsbsgkctdsb15200904t6297
23shtml [Accessed March 2010 ][方琳温红蕾湖北省妇幼 12 年筛查]
Fine B A 1993 The evolution of non-directiveness in genetic counselling and
implications of the human genome project In Bartels D M Leroy B S amp
Caplan A L eds Prescribing our future ethical challenges in genetic
counselling 97-119 New York Aldine de Gruyter
Friedrich M J 2002 Preserving privacy preventing disclosure becomes the
province expert The Journal of the American Medical Association 21815-821
Frosst P amp Wattendore D 2006 At-home genetic test American Family Physician
733540-541
Fulda LG amp Lyken K 2006 Ethical issues in predictive genetic testing a public
health perspective Journal of Medical Ethics 32143-147
Galton F1883 Inquiries into human faculty and its development 2nd ed London
Dent (reprinted 1951) 24ndash25
Galton F1909 The possible improvement of the human breed under the existing
168
BIBLIOGRAPHY
condition of law and sentiment In Essays in Eugenics London Eugenics
Education Society 24
Gardner-Medwin D amp Sharples P 1989 Some studies of the Duchenne and
autosomal recessive types of muscular dystrophy Brain Development 11
91ndash97
Goffman E 1986 Stigma notes on the management of spoiled identity First
Touchstone Edition New York Simon amp Schuster 2-5
GPPC (Genetics and Public Policy Centre) 2004 Reproductive genetic testing What
America thinks Online
httpwwwdnapolicyorgimagesreportpdfsReproGenTestAmericaThinkspdf
[Accessed date March 2010]
Gray E J amp Clarke A 2000 Shared decision making and non-directiveness in
genetic counselling Journal of Medical Genetics 37135ndash138
Greenhalgh S 2003 Science Modernity and the Making of Chinarsquos One-Child policy
Population and Development Review 292163-196
Greenhalgh S amp Winckler E A 2005 Governing Chinarsquos population Stanford CA
Stanford University Press 95
Hansson M G 2005 Building on relationships of trust in bi-bank research Journal
of Medical Ethics 31 415418
Harper P S 1988 Genetic councelling in Mendelian disorders In PS Harper eds
Practical genetic councelling London Wright 18-41
169
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Harper P S 2004 Practical genetic counselling 6th eds Oxford Oxford University
Press
Harris M Winship I amp Spriggs M 2005 Controversies and Ethical Issues in
Cancer-genetic Clinics The Lancet Oncology 65 301-310
Harris R 1998 Genetic counselling and testing in Europe Journal of the Royal
College of Physicians of London 32 335ndash338
He L amp Shi W X eds 1989 Modern medical ethics Zhejiang Education
Press139ndash146 [何伦施卫星现代医学伦理学浙江教育出版社1989]
He X amp Xiao Q 2008 Umbilical Cord Blood Bank should be standardized
(qixueku yingdang guifan hua) Keji ribao 25 February [何新肖青脐血库应
当规范化科技日报 2008-2-25]
Herndon C N 1955 Heredity counselling Eugenics Quarterly22 83ndash89
Hsia Y E 1977 Approaches to the appraisal of genetic counseling In Lubs H A
De la Cruz F F eds Genetic Counseling 53ndash82 New York Raven Press
Huang Q 2006 Test gene does it like check-up (jiance jiyin he tijian yiyang ma)
Xinming weekly (Xinming Zhoukan) 13 Aprial [黄祺 检测基因和体检一样
吗新民周刊2006-4-13]
Huang S Z 2007 The consideration about the current situation of antenatal
diagnose in China[Guanyu zhongguo chuanqian zhenduan xianzhuang de
sikao]Chinese Journal of Healthy Birth amp Child Care[zhongguo yousheng
170
BIBLIOGRAPHY
youyu zazhi] 13266-69 [黄尚志关于我国产前诊断现状的思考《中
国优生优育杂志》 2007-2]
Huang S Z amp Gao Z Y 2006 History of medical genetics in China Journal of
Peking UniversityHeath Science (English) 381 9-13
Hui Y 2004 New century Chinese-English dictionary(xin shiji hanying cidian)
Beijing Foreign Language Teaching and Research Press1964ndash1965 [惠宇
《新世纪汉英辞典》 北京外语教学与研究出版社2004]
Jiao Z X Zhuang G L Zhou C Q Shu Y M Li J amp Liang X Y 2004
Birth of healthy children after preimplantation diagnosis of beta-thalassemia
Chinese medical Journal (English) 1174483-487
Jorde L B Carey J C Bamshad M J amp White R L 1999 Medical Genetics 2nd
eds St Louis Mo Mosby Inc
Kaufman J amp Fang J 2002 Privatization of health services and the reproductive
health of rural Chinese women Reproductive Health matters 1020108-116
Kent G Howie H Fletcher M Newbury-Ecob R amp Hosie K 2000 The
relationship between perceived risk thought intrusiveness and emotional
well-being in women receiving counselling for breast cancer risk in a family
history clinic Brtish Journal of Health Psychol 515-26
Kerr A amp Shakespeare T 2002 Genetic politics from eugenics to genome
Cheltenham UK New Clarion Press 125ndash127
Kohrman M 1999 Grooming Quezi marriage exclusion and identity formation
among disabled men in contemporary China American Ethnologist 264
171
VULNERABLE POPULATIONS AND GENETIC DISORDERS
890ndash909
Konrad M 2003 Predictive genetic testing and the making of the pre-symptomatic
person prognostic moralities amongst Huntingtons-affected families
Anthropology amp Medicine10123-49
Konrad M 2005 Narrating the New Predictive GeneticsCambridge Cambridge
University Press
Knoppers J Y amp Godard B 2003 Genetic information and life insurance a real
risk European Journal of Human Genetics11561-564
Latz I 1981 Stigma a social psychological analysis2ndHillsdale New Jersey
Lawrence Erlbaum Associates
Lei Z H eds 1991 Handbook of Family Planning Administration[jihua shengyu
shishi shouce] Printed by Gansu Commission on Family Planning131ndash132
[雷卓汉《计划生育实施手册》甘肃计划生育委员会]
Lemmens T 2000 Selective Justice Genetic Discrimination and Insurance Should
We Single Out Genes in Our Laws McGill Law Review 45 2 347-412
Li C amp Zhou J 2005 Hubei asks for permission for prenatal genetic testing (Hubei
chanqian yichuan jiance yaoqiu zhunruzhi) Xinhua News 9 December [李才周
杰湖北产前遗传检测要求准入制《新华通讯》 2005-12-9]
Li D Z Liao C Li J amp Xie X 2006 Prenatal diagnosis of b-thalassemia in
Southern China European Journal of Obstetrics amp Gynecology and
Reproductive Biology 12881ndash85
172
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Li J 2006 Free testing for Thalessemia in Nanning (Nanning mianfei jiance dizhong
hai pinxue) Chinese Population（Zhongguo Renkou） 19 June [李杰南宁免
费检测地中海贫血 《中国人口》 2006-6-19]
Lin T Y amp Lin M C 1980 Love denial and rejection-responses of Chinese
families to mental illness In Kleinman A amp Lin T Y eds Normal and
Abnormal Behavior in Chinese Culture Boston MA D Reidel
Liu MF 2007 Five hospitals got permission for prenatal genetic testing in Beijing
（Beijng wu jia yiyuan huoxu shishi chanqian yichuan jiance） Beijing Morning
Daily (Beijing Chen bao) 10 July [刘墨非 北京五家医院获许实施产前遗传
检测北京晨报 2007-7-10]Online
httplifepeoplecomcnBIG510895967176html [Accessed date March
2010]
Liu S 2005 Gender fondness of Chinese couple [Zhongguo fufu de xingbie pianhao]
Population Research [Renkou yanjiu ]31-11 [刘爽中国夫妇的性别偏好《人
口研究》 2005-3]
Liu Z Y 2006 Cultural conception as demonstrated in the choice of medical
treatment of Tibetan (zangmin jiuyi xingwei xuanze de wenhua guannian)
Opening Era (kaifang shidai) 4 111-123 [刘志扬 西藏农民就医选择的文化
观念《开放时代》2006-4]
Lock M 2005 The Eclipse of the Gene and the Return of Divination Current
Anthropology 4647-70
Lu HY 2005 Does genetic testing predict 47 diseases [jiyin jiance keyi yuce 47
zhong jibing ma] Jingbao Daily 29 November [鲁华源 基因检测可以预测 47
173
VULNERABLE POPULATIONS AND GENETIC DISORDERS
种疾病《竞报》 2005-11-29]
Luo J Y 2005 The present status and future trend of birth defect intervention in
China （woguo chusheng quexian ganyu de xianzhuang yu fazan qushi）
Practical Preventive Medicine (shijian yifang yixue) 122458-460 [罗家友我
国出生缺陷干预的现状与发展趋势《实践预防医学》 200512]
Macleod P M 1993 Implication of the child with malformations for the family and
society In Stevenson R E Hall J G amp Goodman RM eds Human
malformations and related anomalies Vol I Oxford Monographs on Medical
Genetics No 27 187ndash196 Oxford Oxford University Press
Mao X 1998 Chinese geneticistsrsquo view of ethical issues in genetic testing and
screening evidence for eugenics in China American Journal of Human
Genetics 63688-695
Marteau T amp Richards M eds 1996 The troubled helix social and psychological
implications of the new human genetics Cambridge Cambridge University
Press
Martin P 2001 Genetic governance the risks oversight and regulation of genetic
databases in the UK New Genetics and Society 202 157ndash183
Mavis J amp Brian S 2003 The governance of human genetics policy discourse and
constructions of public trust New Genetics and Society 221 21-41
Mc Carrick P M 1993 Genetic testing and genetic screening Kennedy
Institute of Ethics Journal Sep 33333-354
Meng K L 2004 Chinarsquos evolving health care market how doctors feel and what
174
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they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
Prenatal Diagnosis Technology（chuanqian zhenduan jishu guanli guanli
banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
permission of MOH （weishengbu shenhe pizhun de kaizhang renlei fuzhu
shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
176
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Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
certificate in different cities [Gedi banli zhunshegzheng de chengxu] [邵沛 各
地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
BIBLIOGRAPHY
Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
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UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
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Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
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WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
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的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
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Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
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Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
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183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
BIBLIOGRAPHY
Chen L 2004 Analysis on the current situation of sexual proportion of infant in China
and the countermeasure (Zhongguo xingbie bi de xianzhuang ji dui ce fenxi)
Population Journal (Renkou zazhi) 2 46ndash49 [陈俐 中国性别比现状与对策
分析《人口杂志》2004246-49]
Chen J Y amp Clark M J 2007 lsquoFamily function in families of children with
Duchenne muscular dystrophyrsquo Family Community Health 304 296ndash304
Chen M G 1992 Health law（Weisheng faxue） Shanghai Medical University Press
（Shaihai yike daxue chubanshe） 200ndash205 [陈明光《卫生法学》 上海
医科大学出版社1992 200-205]
Chen X 2005 Beijing punish medical exaggerated advertisement (Beijing cheng zhi
xujia yiliao guanggao ) Chinese Industry and Commerce Daily (Zhonghua
gongshang bao) 10 August [陈新 北京惩治虚假医疗广告《中国工商报》
2005-8-10 ]
Chen Z Chen R B Qiu R Z Du R F amp Lo WH 1999 Chinese geneticists are
far from eugenics movement American Journal for Human Genetics 1064
1199
CIOMS (Council of International Organizations of Medical Sciences) 2002
International ethical guidelines for biomedical research involving human
subjects guidelines 4 5 and 6
Online httpwwwciomschframe_guidelines_nov_2002 [Accessed date
March 2010]
Clarke A 1991 Is nondirective counselling possible Lancet3351145-1147
165
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Clarke A 1997 The process of genetic counselling In Harper PS Clarke A eds
Genetics society and clinical practice Oxford Bios Scientific Publishers
Clarke A eds 1994 Genetic Counseling Practice and Principles London and New
York Routledge
CRCF (Chinese Red Cross Foundation) 2005 lsquoTianshi zhi enrsquo Fund Help 650
Thousands Children with DMD (tianshi zhi en jiuzhu 65wan ji weisuo huan er)
17 November [ 中国红十字会《lsquo天使之恩rsquo基金帮助 65 万肌萎缩患儿》
2005-11-17 ]
Onlinehttpwwwcrcforgcnsyshtmllm_42007-09-12113730htm
[Accessed date March 2010]
CRCF (Chinese Red Cross Foundation) 2007 Another beneficiary of lsquoTianshi zhi
enrsquo (tainshi zhi en zaici xingdong) [中国红十字会《天使之恩再次行动》] Online
httpwwwcrcforgcnsyshtmllm_12007-08-23104035htm [Accessed date
March 2010]
Critchley J A Zhang Y Suthisisang C C Chan TY amp Tomlinson B 2000
lsquoAlternative therapies and medical science designing clinical trials of
alternativecomplementary medicines ndash is evidence-based traditional Chinese
medicine attainable Journal of Clinical Pharmacology 40 462ndash467
Cuekle H 1995 Improved parameters for risk estimation in Down syndrome
screening Prenatal Diagnosis 15111057ndash1065
Cwik V amp Brooke M 1996 lsquoDisorders of muscle ndash dystrophies and myopathiesrsquo In
Berg B eds Principles of child neurology 1665ndash1671 New York
McGraw-Hill
166
BIBLIOGRAPHY
Davin D1985 The single-child family policy in the countryside In Croll E Davin
D amp Kane P eds Chinarsquos one-child family policy New York St Martinrsquos
Press
Deng J Peng W L Li J Fang C Liang X Y Zeng Y H Sun H Y Zhou C
Q amp Zhuang G L 2006 Successful preimplantation genetic diagnosis for
alpha- and beta-thalassemia in China Prenatal Diagnosis 26111021-1028
Dice LR 1952 Heredity clinics their value for public service and for research
American Journal of Human genetics41 1ndash13
Dickson D 1994 Concern grows over Chinarsquos plans to reduce number of lsquoinferior
birthsrsquo Nature 366458 3
Dikotter F 1998 Imperfect conceptions medical knowledge birth defects and
eugenics in China London Turst amp Company145
Ding W amp Hu X M 2000 Controlling population quantity and improving quality
is still the inevitable choice for China（Kongzhi renkou shuliang tigao renkou
zhiliang reng shi wo guo biran xuanze） Guangming Daily(guangming ribao)
20 December [丁伟胡晓梦控制人口数量提高人口质量 仍是我国必然
选择光明日报2000-12-20]
DMD Forum 2001 Guides for Parents-Parenting Online httpwwwdmdforumorg
guidesparentinghtml [Accessed date March 2010]
Duncan R E 2004 Predictive genetic testing in young people when is it
appropriate Child Health 40593-595
167
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Emery A E H 1991 Population frequency of inherited neuromuscular disease ndash a
world survey Neuromuscular Disorders 1 19-29
Encyclopedia of Chinese (zhongguo baike quanshu)1994 v Medicine Beijing Press
of Chinese Encyclopedia(zhongguo baike quanshu
chubanshe)1727ndash1730[中国百科全书第四卷医学北京中国百科
全书出版社 1994]
Fang L amp Wen H L 2009 12 years prenatal screening of Provincial Maternity and
Child Care Hospitals of Hubei province (Hubei fuyou 12 nian chanqian
shaicha )Onlinehttpnewscnhubeicomctdsbctdsbsgkctdsb15200904t6297
23shtml [Accessed March 2010 ][方琳温红蕾湖北省妇幼 12 年筛查]
Fine B A 1993 The evolution of non-directiveness in genetic counselling and
implications of the human genome project In Bartels D M Leroy B S amp
Caplan A L eds Prescribing our future ethical challenges in genetic
counselling 97-119 New York Aldine de Gruyter
Friedrich M J 2002 Preserving privacy preventing disclosure becomes the
province expert The Journal of the American Medical Association 21815-821
Frosst P amp Wattendore D 2006 At-home genetic test American Family Physician
733540-541
Fulda LG amp Lyken K 2006 Ethical issues in predictive genetic testing a public
health perspective Journal of Medical Ethics 32143-147
Galton F1883 Inquiries into human faculty and its development 2nd ed London
Dent (reprinted 1951) 24ndash25
Galton F1909 The possible improvement of the human breed under the existing
168
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condition of law and sentiment In Essays in Eugenics London Eugenics
Education Society 24
Gardner-Medwin D amp Sharples P 1989 Some studies of the Duchenne and
autosomal recessive types of muscular dystrophy Brain Development 11
91ndash97
Goffman E 1986 Stigma notes on the management of spoiled identity First
Touchstone Edition New York Simon amp Schuster 2-5
GPPC (Genetics and Public Policy Centre) 2004 Reproductive genetic testing What
America thinks Online
httpwwwdnapolicyorgimagesreportpdfsReproGenTestAmericaThinkspdf
[Accessed date March 2010]
Gray E J amp Clarke A 2000 Shared decision making and non-directiveness in
genetic counselling Journal of Medical Genetics 37135ndash138
Greenhalgh S 2003 Science Modernity and the Making of Chinarsquos One-Child policy
Population and Development Review 292163-196
Greenhalgh S amp Winckler E A 2005 Governing Chinarsquos population Stanford CA
Stanford University Press 95
Hansson M G 2005 Building on relationships of trust in bi-bank research Journal
of Medical Ethics 31 415418
Harper P S 1988 Genetic councelling in Mendelian disorders In PS Harper eds
Practical genetic councelling London Wright 18-41
169
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Harper P S 2004 Practical genetic counselling 6th eds Oxford Oxford University
Press
Harris M Winship I amp Spriggs M 2005 Controversies and Ethical Issues in
Cancer-genetic Clinics The Lancet Oncology 65 301-310
Harris R 1998 Genetic counselling and testing in Europe Journal of the Royal
College of Physicians of London 32 335ndash338
He L amp Shi W X eds 1989 Modern medical ethics Zhejiang Education
Press139ndash146 [何伦施卫星现代医学伦理学浙江教育出版社1989]
He X amp Xiao Q 2008 Umbilical Cord Blood Bank should be standardized
(qixueku yingdang guifan hua) Keji ribao 25 February [何新肖青脐血库应
当规范化科技日报 2008-2-25]
Herndon C N 1955 Heredity counselling Eugenics Quarterly22 83ndash89
Hsia Y E 1977 Approaches to the appraisal of genetic counseling In Lubs H A
De la Cruz F F eds Genetic Counseling 53ndash82 New York Raven Press
Huang Q 2006 Test gene does it like check-up (jiance jiyin he tijian yiyang ma)
Xinming weekly (Xinming Zhoukan) 13 Aprial [黄祺 检测基因和体检一样
吗新民周刊2006-4-13]
Huang S Z 2007 The consideration about the current situation of antenatal
diagnose in China[Guanyu zhongguo chuanqian zhenduan xianzhuang de
sikao]Chinese Journal of Healthy Birth amp Child Care[zhongguo yousheng
170
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youyu zazhi] 13266-69 [黄尚志关于我国产前诊断现状的思考《中
国优生优育杂志》 2007-2]
Huang S Z amp Gao Z Y 2006 History of medical genetics in China Journal of
Peking UniversityHeath Science (English) 381 9-13
Hui Y 2004 New century Chinese-English dictionary(xin shiji hanying cidian)
Beijing Foreign Language Teaching and Research Press1964ndash1965 [惠宇
《新世纪汉英辞典》 北京外语教学与研究出版社2004]
Jiao Z X Zhuang G L Zhou C Q Shu Y M Li J amp Liang X Y 2004
Birth of healthy children after preimplantation diagnosis of beta-thalassemia
Chinese medical Journal (English) 1174483-487
Jorde L B Carey J C Bamshad M J amp White R L 1999 Medical Genetics 2nd
eds St Louis Mo Mosby Inc
Kaufman J amp Fang J 2002 Privatization of health services and the reproductive
health of rural Chinese women Reproductive Health matters 1020108-116
Kent G Howie H Fletcher M Newbury-Ecob R amp Hosie K 2000 The
relationship between perceived risk thought intrusiveness and emotional
well-being in women receiving counselling for breast cancer risk in a family
history clinic Brtish Journal of Health Psychol 515-26
Kerr A amp Shakespeare T 2002 Genetic politics from eugenics to genome
Cheltenham UK New Clarion Press 125ndash127
Kohrman M 1999 Grooming Quezi marriage exclusion and identity formation
among disabled men in contemporary China American Ethnologist 264
171
VULNERABLE POPULATIONS AND GENETIC DISORDERS
890ndash909
Konrad M 2003 Predictive genetic testing and the making of the pre-symptomatic
person prognostic moralities amongst Huntingtons-affected families
Anthropology amp Medicine10123-49
Konrad M 2005 Narrating the New Predictive GeneticsCambridge Cambridge
University Press
Knoppers J Y amp Godard B 2003 Genetic information and life insurance a real
risk European Journal of Human Genetics11561-564
Latz I 1981 Stigma a social psychological analysis2ndHillsdale New Jersey
Lawrence Erlbaum Associates
Lei Z H eds 1991 Handbook of Family Planning Administration[jihua shengyu
shishi shouce] Printed by Gansu Commission on Family Planning131ndash132
[雷卓汉《计划生育实施手册》甘肃计划生育委员会]
Lemmens T 2000 Selective Justice Genetic Discrimination and Insurance Should
We Single Out Genes in Our Laws McGill Law Review 45 2 347-412
Li C amp Zhou J 2005 Hubei asks for permission for prenatal genetic testing (Hubei
chanqian yichuan jiance yaoqiu zhunruzhi) Xinhua News 9 December [李才周
杰湖北产前遗传检测要求准入制《新华通讯》 2005-12-9]
Li D Z Liao C Li J amp Xie X 2006 Prenatal diagnosis of b-thalassemia in
Southern China European Journal of Obstetrics amp Gynecology and
Reproductive Biology 12881ndash85
172
BIBLIOGRAPHY
Li J 2006 Free testing for Thalessemia in Nanning (Nanning mianfei jiance dizhong
hai pinxue) Chinese Population（Zhongguo Renkou） 19 June [李杰南宁免
费检测地中海贫血 《中国人口》 2006-6-19]
Lin T Y amp Lin M C 1980 Love denial and rejection-responses of Chinese
families to mental illness In Kleinman A amp Lin T Y eds Normal and
Abnormal Behavior in Chinese Culture Boston MA D Reidel
Liu MF 2007 Five hospitals got permission for prenatal genetic testing in Beijing
（Beijng wu jia yiyuan huoxu shishi chanqian yichuan jiance） Beijing Morning
Daily (Beijing Chen bao) 10 July [刘墨非 北京五家医院获许实施产前遗传
检测北京晨报 2007-7-10]Online
httplifepeoplecomcnBIG510895967176html [Accessed date March
2010]
Liu S 2005 Gender fondness of Chinese couple [Zhongguo fufu de xingbie pianhao]
Population Research [Renkou yanjiu ]31-11 [刘爽中国夫妇的性别偏好《人
口研究》 2005-3]
Liu Z Y 2006 Cultural conception as demonstrated in the choice of medical
treatment of Tibetan (zangmin jiuyi xingwei xuanze de wenhua guannian)
Opening Era (kaifang shidai) 4 111-123 [刘志扬 西藏农民就医选择的文化
观念《开放时代》2006-4]
Lock M 2005 The Eclipse of the Gene and the Return of Divination Current
Anthropology 4647-70
Lu HY 2005 Does genetic testing predict 47 diseases [jiyin jiance keyi yuce 47
zhong jibing ma] Jingbao Daily 29 November [鲁华源 基因检测可以预测 47
173
VULNERABLE POPULATIONS AND GENETIC DISORDERS
种疾病《竞报》 2005-11-29]
Luo J Y 2005 The present status and future trend of birth defect intervention in
China （woguo chusheng quexian ganyu de xianzhuang yu fazan qushi）
Practical Preventive Medicine (shijian yifang yixue) 122458-460 [罗家友我
国出生缺陷干预的现状与发展趋势《实践预防医学》 200512]
Macleod P M 1993 Implication of the child with malformations for the family and
society In Stevenson R E Hall J G amp Goodman RM eds Human
malformations and related anomalies Vol I Oxford Monographs on Medical
Genetics No 27 187ndash196 Oxford Oxford University Press
Mao X 1998 Chinese geneticistsrsquo view of ethical issues in genetic testing and
screening evidence for eugenics in China American Journal of Human
Genetics 63688-695
Marteau T amp Richards M eds 1996 The troubled helix social and psychological
implications of the new human genetics Cambridge Cambridge University
Press
Martin P 2001 Genetic governance the risks oversight and regulation of genetic
databases in the UK New Genetics and Society 202 157ndash183
Mavis J amp Brian S 2003 The governance of human genetics policy discourse and
constructions of public trust New Genetics and Society 221 21-41
Mc Carrick P M 1993 Genetic testing and genetic screening Kennedy
Institute of Ethics Journal Sep 33333-354
Meng K L 2004 Chinarsquos evolving health care market how doctors feel and what
174
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they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
Prenatal Diagnosis Technology（chuanqian zhenduan jishu guanli guanli
banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
permission of MOH （weishengbu shenhe pizhun de kaizhang renlei fuzhu
shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
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Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
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地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
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Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
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UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
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Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
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WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
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的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
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医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
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2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Clarke A 1997 The process of genetic counselling In Harper PS Clarke A eds
Genetics society and clinical practice Oxford Bios Scientific Publishers
Clarke A eds 1994 Genetic Counseling Practice and Principles London and New
York Routledge
CRCF (Chinese Red Cross Foundation) 2005 lsquoTianshi zhi enrsquo Fund Help 650
Thousands Children with DMD (tianshi zhi en jiuzhu 65wan ji weisuo huan er)
17 November [ 中国红十字会《lsquo天使之恩rsquo基金帮助 65 万肌萎缩患儿》
2005-11-17 ]
Onlinehttpwwwcrcforgcnsyshtmllm_42007-09-12113730htm
[Accessed date March 2010]
CRCF (Chinese Red Cross Foundation) 2007 Another beneficiary of lsquoTianshi zhi
enrsquo (tainshi zhi en zaici xingdong) [中国红十字会《天使之恩再次行动》] Online
httpwwwcrcforgcnsyshtmllm_12007-08-23104035htm [Accessed date
March 2010]
Critchley J A Zhang Y Suthisisang C C Chan TY amp Tomlinson B 2000
lsquoAlternative therapies and medical science designing clinical trials of
alternativecomplementary medicines ndash is evidence-based traditional Chinese
medicine attainable Journal of Clinical Pharmacology 40 462ndash467
Cuekle H 1995 Improved parameters for risk estimation in Down syndrome
screening Prenatal Diagnosis 15111057ndash1065
Cwik V amp Brooke M 1996 lsquoDisorders of muscle ndash dystrophies and myopathiesrsquo In
Berg B eds Principles of child neurology 1665ndash1671 New York
McGraw-Hill
166
BIBLIOGRAPHY
Davin D1985 The single-child family policy in the countryside In Croll E Davin
D amp Kane P eds Chinarsquos one-child family policy New York St Martinrsquos
Press
Deng J Peng W L Li J Fang C Liang X Y Zeng Y H Sun H Y Zhou C
Q amp Zhuang G L 2006 Successful preimplantation genetic diagnosis for
alpha- and beta-thalassemia in China Prenatal Diagnosis 26111021-1028
Dice LR 1952 Heredity clinics their value for public service and for research
American Journal of Human genetics41 1ndash13
Dickson D 1994 Concern grows over Chinarsquos plans to reduce number of lsquoinferior
birthsrsquo Nature 366458 3
Dikotter F 1998 Imperfect conceptions medical knowledge birth defects and
eugenics in China London Turst amp Company145
Ding W amp Hu X M 2000 Controlling population quantity and improving quality
is still the inevitable choice for China（Kongzhi renkou shuliang tigao renkou
zhiliang reng shi wo guo biran xuanze） Guangming Daily(guangming ribao)
20 December [丁伟胡晓梦控制人口数量提高人口质量 仍是我国必然
选择光明日报2000-12-20]
DMD Forum 2001 Guides for Parents-Parenting Online httpwwwdmdforumorg
guidesparentinghtml [Accessed date March 2010]
Duncan R E 2004 Predictive genetic testing in young people when is it
appropriate Child Health 40593-595
167
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Emery A E H 1991 Population frequency of inherited neuromuscular disease ndash a
world survey Neuromuscular Disorders 1 19-29
Encyclopedia of Chinese (zhongguo baike quanshu)1994 v Medicine Beijing Press
of Chinese Encyclopedia(zhongguo baike quanshu
chubanshe)1727ndash1730[中国百科全书第四卷医学北京中国百科
全书出版社 1994]
Fang L amp Wen H L 2009 12 years prenatal screening of Provincial Maternity and
Child Care Hospitals of Hubei province (Hubei fuyou 12 nian chanqian
shaicha )Onlinehttpnewscnhubeicomctdsbctdsbsgkctdsb15200904t6297
23shtml [Accessed March 2010 ][方琳温红蕾湖北省妇幼 12 年筛查]
Fine B A 1993 The evolution of non-directiveness in genetic counselling and
implications of the human genome project In Bartels D M Leroy B S amp
Caplan A L eds Prescribing our future ethical challenges in genetic
counselling 97-119 New York Aldine de Gruyter
Friedrich M J 2002 Preserving privacy preventing disclosure becomes the
province expert The Journal of the American Medical Association 21815-821
Frosst P amp Wattendore D 2006 At-home genetic test American Family Physician
733540-541
Fulda LG amp Lyken K 2006 Ethical issues in predictive genetic testing a public
health perspective Journal of Medical Ethics 32143-147
Galton F1883 Inquiries into human faculty and its development 2nd ed London
Dent (reprinted 1951) 24ndash25
Galton F1909 The possible improvement of the human breed under the existing
168
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condition of law and sentiment In Essays in Eugenics London Eugenics
Education Society 24
Gardner-Medwin D amp Sharples P 1989 Some studies of the Duchenne and
autosomal recessive types of muscular dystrophy Brain Development 11
91ndash97
Goffman E 1986 Stigma notes on the management of spoiled identity First
Touchstone Edition New York Simon amp Schuster 2-5
GPPC (Genetics and Public Policy Centre) 2004 Reproductive genetic testing What
America thinks Online
httpwwwdnapolicyorgimagesreportpdfsReproGenTestAmericaThinkspdf
[Accessed date March 2010]
Gray E J amp Clarke A 2000 Shared decision making and non-directiveness in
genetic counselling Journal of Medical Genetics 37135ndash138
Greenhalgh S 2003 Science Modernity and the Making of Chinarsquos One-Child policy
Population and Development Review 292163-196
Greenhalgh S amp Winckler E A 2005 Governing Chinarsquos population Stanford CA
Stanford University Press 95
Hansson M G 2005 Building on relationships of trust in bi-bank research Journal
of Medical Ethics 31 415418
Harper P S 1988 Genetic councelling in Mendelian disorders In PS Harper eds
Practical genetic councelling London Wright 18-41
169
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Harper P S 2004 Practical genetic counselling 6th eds Oxford Oxford University
Press
Harris M Winship I amp Spriggs M 2005 Controversies and Ethical Issues in
Cancer-genetic Clinics The Lancet Oncology 65 301-310
Harris R 1998 Genetic counselling and testing in Europe Journal of the Royal
College of Physicians of London 32 335ndash338
He L amp Shi W X eds 1989 Modern medical ethics Zhejiang Education
Press139ndash146 [何伦施卫星现代医学伦理学浙江教育出版社1989]
He X amp Xiao Q 2008 Umbilical Cord Blood Bank should be standardized
(qixueku yingdang guifan hua) Keji ribao 25 February [何新肖青脐血库应
当规范化科技日报 2008-2-25]
Herndon C N 1955 Heredity counselling Eugenics Quarterly22 83ndash89
Hsia Y E 1977 Approaches to the appraisal of genetic counseling In Lubs H A
De la Cruz F F eds Genetic Counseling 53ndash82 New York Raven Press
Huang Q 2006 Test gene does it like check-up (jiance jiyin he tijian yiyang ma)
Xinming weekly (Xinming Zhoukan) 13 Aprial [黄祺 检测基因和体检一样
吗新民周刊2006-4-13]
Huang S Z 2007 The consideration about the current situation of antenatal
diagnose in China[Guanyu zhongguo chuanqian zhenduan xianzhuang de
sikao]Chinese Journal of Healthy Birth amp Child Care[zhongguo yousheng
170
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youyu zazhi] 13266-69 [黄尚志关于我国产前诊断现状的思考《中
国优生优育杂志》 2007-2]
Huang S Z amp Gao Z Y 2006 History of medical genetics in China Journal of
Peking UniversityHeath Science (English) 381 9-13
Hui Y 2004 New century Chinese-English dictionary(xin shiji hanying cidian)
Beijing Foreign Language Teaching and Research Press1964ndash1965 [惠宇
《新世纪汉英辞典》 北京外语教学与研究出版社2004]
Jiao Z X Zhuang G L Zhou C Q Shu Y M Li J amp Liang X Y 2004
Birth of healthy children after preimplantation diagnosis of beta-thalassemia
Chinese medical Journal (English) 1174483-487
Jorde L B Carey J C Bamshad M J amp White R L 1999 Medical Genetics 2nd
eds St Louis Mo Mosby Inc
Kaufman J amp Fang J 2002 Privatization of health services and the reproductive
health of rural Chinese women Reproductive Health matters 1020108-116
Kent G Howie H Fletcher M Newbury-Ecob R amp Hosie K 2000 The
relationship between perceived risk thought intrusiveness and emotional
well-being in women receiving counselling for breast cancer risk in a family
history clinic Brtish Journal of Health Psychol 515-26
Kerr A amp Shakespeare T 2002 Genetic politics from eugenics to genome
Cheltenham UK New Clarion Press 125ndash127
Kohrman M 1999 Grooming Quezi marriage exclusion and identity formation
among disabled men in contemporary China American Ethnologist 264
171
VULNERABLE POPULATIONS AND GENETIC DISORDERS
890ndash909
Konrad M 2003 Predictive genetic testing and the making of the pre-symptomatic
person prognostic moralities amongst Huntingtons-affected families
Anthropology amp Medicine10123-49
Konrad M 2005 Narrating the New Predictive GeneticsCambridge Cambridge
University Press
Knoppers J Y amp Godard B 2003 Genetic information and life insurance a real
risk European Journal of Human Genetics11561-564
Latz I 1981 Stigma a social psychological analysis2ndHillsdale New Jersey
Lawrence Erlbaum Associates
Lei Z H eds 1991 Handbook of Family Planning Administration[jihua shengyu
shishi shouce] Printed by Gansu Commission on Family Planning131ndash132
[雷卓汉《计划生育实施手册》甘肃计划生育委员会]
Lemmens T 2000 Selective Justice Genetic Discrimination and Insurance Should
We Single Out Genes in Our Laws McGill Law Review 45 2 347-412
Li C amp Zhou J 2005 Hubei asks for permission for prenatal genetic testing (Hubei
chanqian yichuan jiance yaoqiu zhunruzhi) Xinhua News 9 December [李才周
杰湖北产前遗传检测要求准入制《新华通讯》 2005-12-9]
Li D Z Liao C Li J amp Xie X 2006 Prenatal diagnosis of b-thalassemia in
Southern China European Journal of Obstetrics amp Gynecology and
Reproductive Biology 12881ndash85
172
BIBLIOGRAPHY
Li J 2006 Free testing for Thalessemia in Nanning (Nanning mianfei jiance dizhong
hai pinxue) Chinese Population（Zhongguo Renkou） 19 June [李杰南宁免
费检测地中海贫血 《中国人口》 2006-6-19]
Lin T Y amp Lin M C 1980 Love denial and rejection-responses of Chinese
families to mental illness In Kleinman A amp Lin T Y eds Normal and
Abnormal Behavior in Chinese Culture Boston MA D Reidel
Liu MF 2007 Five hospitals got permission for prenatal genetic testing in Beijing
（Beijng wu jia yiyuan huoxu shishi chanqian yichuan jiance） Beijing Morning
Daily (Beijing Chen bao) 10 July [刘墨非 北京五家医院获许实施产前遗传
检测北京晨报 2007-7-10]Online
httplifepeoplecomcnBIG510895967176html [Accessed date March
2010]
Liu S 2005 Gender fondness of Chinese couple [Zhongguo fufu de xingbie pianhao]
Population Research [Renkou yanjiu ]31-11 [刘爽中国夫妇的性别偏好《人
口研究》 2005-3]
Liu Z Y 2006 Cultural conception as demonstrated in the choice of medical
treatment of Tibetan (zangmin jiuyi xingwei xuanze de wenhua guannian)
Opening Era (kaifang shidai) 4 111-123 [刘志扬 西藏农民就医选择的文化
观念《开放时代》2006-4]
Lock M 2005 The Eclipse of the Gene and the Return of Divination Current
Anthropology 4647-70
Lu HY 2005 Does genetic testing predict 47 diseases [jiyin jiance keyi yuce 47
zhong jibing ma] Jingbao Daily 29 November [鲁华源 基因检测可以预测 47
173
VULNERABLE POPULATIONS AND GENETIC DISORDERS
种疾病《竞报》 2005-11-29]
Luo J Y 2005 The present status and future trend of birth defect intervention in
China （woguo chusheng quexian ganyu de xianzhuang yu fazan qushi）
Practical Preventive Medicine (shijian yifang yixue) 122458-460 [罗家友我
国出生缺陷干预的现状与发展趋势《实践预防医学》 200512]
Macleod P M 1993 Implication of the child with malformations for the family and
society In Stevenson R E Hall J G amp Goodman RM eds Human
malformations and related anomalies Vol I Oxford Monographs on Medical
Genetics No 27 187ndash196 Oxford Oxford University Press
Mao X 1998 Chinese geneticistsrsquo view of ethical issues in genetic testing and
screening evidence for eugenics in China American Journal of Human
Genetics 63688-695
Marteau T amp Richards M eds 1996 The troubled helix social and psychological
implications of the new human genetics Cambridge Cambridge University
Press
Martin P 2001 Genetic governance the risks oversight and regulation of genetic
databases in the UK New Genetics and Society 202 157ndash183
Mavis J amp Brian S 2003 The governance of human genetics policy discourse and
constructions of public trust New Genetics and Society 221 21-41
Mc Carrick P M 1993 Genetic testing and genetic screening Kennedy
Institute of Ethics Journal Sep 33333-354
Meng K L 2004 Chinarsquos evolving health care market how doctors feel and what
174
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they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
Prenatal Diagnosis Technology（chuanqian zhenduan jishu guanli guanli
banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
permission of MOH （weishengbu shenhe pizhun de kaizhang renlei fuzhu
shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
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Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
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地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
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Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
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UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
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Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
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Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
BIBLIOGRAPHY
Davin D1985 The single-child family policy in the countryside In Croll E Davin
D amp Kane P eds Chinarsquos one-child family policy New York St Martinrsquos
Press
Deng J Peng W L Li J Fang C Liang X Y Zeng Y H Sun H Y Zhou C
Q amp Zhuang G L 2006 Successful preimplantation genetic diagnosis for
alpha- and beta-thalassemia in China Prenatal Diagnosis 26111021-1028
Dice LR 1952 Heredity clinics their value for public service and for research
American Journal of Human genetics41 1ndash13
Dickson D 1994 Concern grows over Chinarsquos plans to reduce number of lsquoinferior
birthsrsquo Nature 366458 3
Dikotter F 1998 Imperfect conceptions medical knowledge birth defects and
eugenics in China London Turst amp Company145
Ding W amp Hu X M 2000 Controlling population quantity and improving quality
is still the inevitable choice for China（Kongzhi renkou shuliang tigao renkou
zhiliang reng shi wo guo biran xuanze） Guangming Daily(guangming ribao)
20 December [丁伟胡晓梦控制人口数量提高人口质量 仍是我国必然
选择光明日报2000-12-20]
DMD Forum 2001 Guides for Parents-Parenting Online httpwwwdmdforumorg
guidesparentinghtml [Accessed date March 2010]
Duncan R E 2004 Predictive genetic testing in young people when is it
appropriate Child Health 40593-595
167
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Emery A E H 1991 Population frequency of inherited neuromuscular disease ndash a
world survey Neuromuscular Disorders 1 19-29
Encyclopedia of Chinese (zhongguo baike quanshu)1994 v Medicine Beijing Press
of Chinese Encyclopedia(zhongguo baike quanshu
chubanshe)1727ndash1730[中国百科全书第四卷医学北京中国百科
全书出版社 1994]
Fang L amp Wen H L 2009 12 years prenatal screening of Provincial Maternity and
Child Care Hospitals of Hubei province (Hubei fuyou 12 nian chanqian
shaicha )Onlinehttpnewscnhubeicomctdsbctdsbsgkctdsb15200904t6297
23shtml [Accessed March 2010 ][方琳温红蕾湖北省妇幼 12 年筛查]
Fine B A 1993 The evolution of non-directiveness in genetic counselling and
implications of the human genome project In Bartels D M Leroy B S amp
Caplan A L eds Prescribing our future ethical challenges in genetic
counselling 97-119 New York Aldine de Gruyter
Friedrich M J 2002 Preserving privacy preventing disclosure becomes the
province expert The Journal of the American Medical Association 21815-821
Frosst P amp Wattendore D 2006 At-home genetic test American Family Physician
733540-541
Fulda LG amp Lyken K 2006 Ethical issues in predictive genetic testing a public
health perspective Journal of Medical Ethics 32143-147
Galton F1883 Inquiries into human faculty and its development 2nd ed London
Dent (reprinted 1951) 24ndash25
Galton F1909 The possible improvement of the human breed under the existing
168
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condition of law and sentiment In Essays in Eugenics London Eugenics
Education Society 24
Gardner-Medwin D amp Sharples P 1989 Some studies of the Duchenne and
autosomal recessive types of muscular dystrophy Brain Development 11
91ndash97
Goffman E 1986 Stigma notes on the management of spoiled identity First
Touchstone Edition New York Simon amp Schuster 2-5
GPPC (Genetics and Public Policy Centre) 2004 Reproductive genetic testing What
America thinks Online
httpwwwdnapolicyorgimagesreportpdfsReproGenTestAmericaThinkspdf
[Accessed date March 2010]
Gray E J amp Clarke A 2000 Shared decision making and non-directiveness in
genetic counselling Journal of Medical Genetics 37135ndash138
Greenhalgh S 2003 Science Modernity and the Making of Chinarsquos One-Child policy
Population and Development Review 292163-196
Greenhalgh S amp Winckler E A 2005 Governing Chinarsquos population Stanford CA
Stanford University Press 95
Hansson M G 2005 Building on relationships of trust in bi-bank research Journal
of Medical Ethics 31 415418
Harper P S 1988 Genetic councelling in Mendelian disorders In PS Harper eds
Practical genetic councelling London Wright 18-41
169
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Harper P S 2004 Practical genetic counselling 6th eds Oxford Oxford University
Press
Harris M Winship I amp Spriggs M 2005 Controversies and Ethical Issues in
Cancer-genetic Clinics The Lancet Oncology 65 301-310
Harris R 1998 Genetic counselling and testing in Europe Journal of the Royal
College of Physicians of London 32 335ndash338
He L amp Shi W X eds 1989 Modern medical ethics Zhejiang Education
Press139ndash146 [何伦施卫星现代医学伦理学浙江教育出版社1989]
He X amp Xiao Q 2008 Umbilical Cord Blood Bank should be standardized
(qixueku yingdang guifan hua) Keji ribao 25 February [何新肖青脐血库应
当规范化科技日报 2008-2-25]
Herndon C N 1955 Heredity counselling Eugenics Quarterly22 83ndash89
Hsia Y E 1977 Approaches to the appraisal of genetic counseling In Lubs H A
De la Cruz F F eds Genetic Counseling 53ndash82 New York Raven Press
Huang Q 2006 Test gene does it like check-up (jiance jiyin he tijian yiyang ma)
Xinming weekly (Xinming Zhoukan) 13 Aprial [黄祺 检测基因和体检一样
吗新民周刊2006-4-13]
Huang S Z 2007 The consideration about the current situation of antenatal
diagnose in China[Guanyu zhongguo chuanqian zhenduan xianzhuang de
sikao]Chinese Journal of Healthy Birth amp Child Care[zhongguo yousheng
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youyu zazhi] 13266-69 [黄尚志关于我国产前诊断现状的思考《中
国优生优育杂志》 2007-2]
Huang S Z amp Gao Z Y 2006 History of medical genetics in China Journal of
Peking UniversityHeath Science (English) 381 9-13
Hui Y 2004 New century Chinese-English dictionary(xin shiji hanying cidian)
Beijing Foreign Language Teaching and Research Press1964ndash1965 [惠宇
《新世纪汉英辞典》 北京外语教学与研究出版社2004]
Jiao Z X Zhuang G L Zhou C Q Shu Y M Li J amp Liang X Y 2004
Birth of healthy children after preimplantation diagnosis of beta-thalassemia
Chinese medical Journal (English) 1174483-487
Jorde L B Carey J C Bamshad M J amp White R L 1999 Medical Genetics 2nd
eds St Louis Mo Mosby Inc
Kaufman J amp Fang J 2002 Privatization of health services and the reproductive
health of rural Chinese women Reproductive Health matters 1020108-116
Kent G Howie H Fletcher M Newbury-Ecob R amp Hosie K 2000 The
relationship between perceived risk thought intrusiveness and emotional
well-being in women receiving counselling for breast cancer risk in a family
history clinic Brtish Journal of Health Psychol 515-26
Kerr A amp Shakespeare T 2002 Genetic politics from eugenics to genome
Cheltenham UK New Clarion Press 125ndash127
Kohrman M 1999 Grooming Quezi marriage exclusion and identity formation
among disabled men in contemporary China American Ethnologist 264
171
VULNERABLE POPULATIONS AND GENETIC DISORDERS
890ndash909
Konrad M 2003 Predictive genetic testing and the making of the pre-symptomatic
person prognostic moralities amongst Huntingtons-affected families
Anthropology amp Medicine10123-49
Konrad M 2005 Narrating the New Predictive GeneticsCambridge Cambridge
University Press
Knoppers J Y amp Godard B 2003 Genetic information and life insurance a real
risk European Journal of Human Genetics11561-564
Latz I 1981 Stigma a social psychological analysis2ndHillsdale New Jersey
Lawrence Erlbaum Associates
Lei Z H eds 1991 Handbook of Family Planning Administration[jihua shengyu
shishi shouce] Printed by Gansu Commission on Family Planning131ndash132
[雷卓汉《计划生育实施手册》甘肃计划生育委员会]
Lemmens T 2000 Selective Justice Genetic Discrimination and Insurance Should
We Single Out Genes in Our Laws McGill Law Review 45 2 347-412
Li C amp Zhou J 2005 Hubei asks for permission for prenatal genetic testing (Hubei
chanqian yichuan jiance yaoqiu zhunruzhi) Xinhua News 9 December [李才周
杰湖北产前遗传检测要求准入制《新华通讯》 2005-12-9]
Li D Z Liao C Li J amp Xie X 2006 Prenatal diagnosis of b-thalassemia in
Southern China European Journal of Obstetrics amp Gynecology and
Reproductive Biology 12881ndash85
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Li J 2006 Free testing for Thalessemia in Nanning (Nanning mianfei jiance dizhong
hai pinxue) Chinese Population（Zhongguo Renkou） 19 June [李杰南宁免
费检测地中海贫血 《中国人口》 2006-6-19]
Lin T Y amp Lin M C 1980 Love denial and rejection-responses of Chinese
families to mental illness In Kleinman A amp Lin T Y eds Normal and
Abnormal Behavior in Chinese Culture Boston MA D Reidel
Liu MF 2007 Five hospitals got permission for prenatal genetic testing in Beijing
（Beijng wu jia yiyuan huoxu shishi chanqian yichuan jiance） Beijing Morning
Daily (Beijing Chen bao) 10 July [刘墨非 北京五家医院获许实施产前遗传
检测北京晨报 2007-7-10]Online
httplifepeoplecomcnBIG510895967176html [Accessed date March
2010]
Liu S 2005 Gender fondness of Chinese couple [Zhongguo fufu de xingbie pianhao]
Population Research [Renkou yanjiu ]31-11 [刘爽中国夫妇的性别偏好《人
口研究》 2005-3]
Liu Z Y 2006 Cultural conception as demonstrated in the choice of medical
treatment of Tibetan (zangmin jiuyi xingwei xuanze de wenhua guannian)
Opening Era (kaifang shidai) 4 111-123 [刘志扬 西藏农民就医选择的文化
观念《开放时代》2006-4]
Lock M 2005 The Eclipse of the Gene and the Return of Divination Current
Anthropology 4647-70
Lu HY 2005 Does genetic testing predict 47 diseases [jiyin jiance keyi yuce 47
zhong jibing ma] Jingbao Daily 29 November [鲁华源 基因检测可以预测 47
173
VULNERABLE POPULATIONS AND GENETIC DISORDERS
种疾病《竞报》 2005-11-29]
Luo J Y 2005 The present status and future trend of birth defect intervention in
China （woguo chusheng quexian ganyu de xianzhuang yu fazan qushi）
Practical Preventive Medicine (shijian yifang yixue) 122458-460 [罗家友我
国出生缺陷干预的现状与发展趋势《实践预防医学》 200512]
Macleod P M 1993 Implication of the child with malformations for the family and
society In Stevenson R E Hall J G amp Goodman RM eds Human
malformations and related anomalies Vol I Oxford Monographs on Medical
Genetics No 27 187ndash196 Oxford Oxford University Press
Mao X 1998 Chinese geneticistsrsquo view of ethical issues in genetic testing and
screening evidence for eugenics in China American Journal of Human
Genetics 63688-695
Marteau T amp Richards M eds 1996 The troubled helix social and psychological
implications of the new human genetics Cambridge Cambridge University
Press
Martin P 2001 Genetic governance the risks oversight and regulation of genetic
databases in the UK New Genetics and Society 202 157ndash183
Mavis J amp Brian S 2003 The governance of human genetics policy discourse and
constructions of public trust New Genetics and Society 221 21-41
Mc Carrick P M 1993 Genetic testing and genetic screening Kennedy
Institute of Ethics Journal Sep 33333-354
Meng K L 2004 Chinarsquos evolving health care market how doctors feel and what
174
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they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
Prenatal Diagnosis Technology（chuanqian zhenduan jishu guanli guanli
banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
permission of MOH （weishengbu shenhe pizhun de kaizhang renlei fuzhu
shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
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Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
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SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
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[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
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Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
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UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
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UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
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Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
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Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Emery A E H 1991 Population frequency of inherited neuromuscular disease ndash a
world survey Neuromuscular Disorders 1 19-29
Encyclopedia of Chinese (zhongguo baike quanshu)1994 v Medicine Beijing Press
of Chinese Encyclopedia(zhongguo baike quanshu
chubanshe)1727ndash1730[中国百科全书第四卷医学北京中国百科
全书出版社 1994]
Fang L amp Wen H L 2009 12 years prenatal screening of Provincial Maternity and
Child Care Hospitals of Hubei province (Hubei fuyou 12 nian chanqian
shaicha )Onlinehttpnewscnhubeicomctdsbctdsbsgkctdsb15200904t6297
23shtml [Accessed March 2010 ][方琳温红蕾湖北省妇幼 12 年筛查]
Fine B A 1993 The evolution of non-directiveness in genetic counselling and
implications of the human genome project In Bartels D M Leroy B S amp
Caplan A L eds Prescribing our future ethical challenges in genetic
counselling 97-119 New York Aldine de Gruyter
Friedrich M J 2002 Preserving privacy preventing disclosure becomes the
province expert The Journal of the American Medical Association 21815-821
Frosst P amp Wattendore D 2006 At-home genetic test American Family Physician
733540-541
Fulda LG amp Lyken K 2006 Ethical issues in predictive genetic testing a public
health perspective Journal of Medical Ethics 32143-147
Galton F1883 Inquiries into human faculty and its development 2nd ed London
Dent (reprinted 1951) 24ndash25
Galton F1909 The possible improvement of the human breed under the existing
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condition of law and sentiment In Essays in Eugenics London Eugenics
Education Society 24
Gardner-Medwin D amp Sharples P 1989 Some studies of the Duchenne and
autosomal recessive types of muscular dystrophy Brain Development 11
91ndash97
Goffman E 1986 Stigma notes on the management of spoiled identity First
Touchstone Edition New York Simon amp Schuster 2-5
GPPC (Genetics and Public Policy Centre) 2004 Reproductive genetic testing What
America thinks Online
httpwwwdnapolicyorgimagesreportpdfsReproGenTestAmericaThinkspdf
[Accessed date March 2010]
Gray E J amp Clarke A 2000 Shared decision making and non-directiveness in
genetic counselling Journal of Medical Genetics 37135ndash138
Greenhalgh S 2003 Science Modernity and the Making of Chinarsquos One-Child policy
Population and Development Review 292163-196
Greenhalgh S amp Winckler E A 2005 Governing Chinarsquos population Stanford CA
Stanford University Press 95
Hansson M G 2005 Building on relationships of trust in bi-bank research Journal
of Medical Ethics 31 415418
Harper P S 1988 Genetic councelling in Mendelian disorders In PS Harper eds
Practical genetic councelling London Wright 18-41
169
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Harper P S 2004 Practical genetic counselling 6th eds Oxford Oxford University
Press
Harris M Winship I amp Spriggs M 2005 Controversies and Ethical Issues in
Cancer-genetic Clinics The Lancet Oncology 65 301-310
Harris R 1998 Genetic counselling and testing in Europe Journal of the Royal
College of Physicians of London 32 335ndash338
He L amp Shi W X eds 1989 Modern medical ethics Zhejiang Education
Press139ndash146 [何伦施卫星现代医学伦理学浙江教育出版社1989]
He X amp Xiao Q 2008 Umbilical Cord Blood Bank should be standardized
(qixueku yingdang guifan hua) Keji ribao 25 February [何新肖青脐血库应
当规范化科技日报 2008-2-25]
Herndon C N 1955 Heredity counselling Eugenics Quarterly22 83ndash89
Hsia Y E 1977 Approaches to the appraisal of genetic counseling In Lubs H A
De la Cruz F F eds Genetic Counseling 53ndash82 New York Raven Press
Huang Q 2006 Test gene does it like check-up (jiance jiyin he tijian yiyang ma)
Xinming weekly (Xinming Zhoukan) 13 Aprial [黄祺 检测基因和体检一样
吗新民周刊2006-4-13]
Huang S Z 2007 The consideration about the current situation of antenatal
diagnose in China[Guanyu zhongguo chuanqian zhenduan xianzhuang de
sikao]Chinese Journal of Healthy Birth amp Child Care[zhongguo yousheng
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youyu zazhi] 13266-69 [黄尚志关于我国产前诊断现状的思考《中
国优生优育杂志》 2007-2]
Huang S Z amp Gao Z Y 2006 History of medical genetics in China Journal of
Peking UniversityHeath Science (English) 381 9-13
Hui Y 2004 New century Chinese-English dictionary(xin shiji hanying cidian)
Beijing Foreign Language Teaching and Research Press1964ndash1965 [惠宇
《新世纪汉英辞典》 北京外语教学与研究出版社2004]
Jiao Z X Zhuang G L Zhou C Q Shu Y M Li J amp Liang X Y 2004
Birth of healthy children after preimplantation diagnosis of beta-thalassemia
Chinese medical Journal (English) 1174483-487
Jorde L B Carey J C Bamshad M J amp White R L 1999 Medical Genetics 2nd
eds St Louis Mo Mosby Inc
Kaufman J amp Fang J 2002 Privatization of health services and the reproductive
health of rural Chinese women Reproductive Health matters 1020108-116
Kent G Howie H Fletcher M Newbury-Ecob R amp Hosie K 2000 The
relationship between perceived risk thought intrusiveness and emotional
well-being in women receiving counselling for breast cancer risk in a family
history clinic Brtish Journal of Health Psychol 515-26
Kerr A amp Shakespeare T 2002 Genetic politics from eugenics to genome
Cheltenham UK New Clarion Press 125ndash127
Kohrman M 1999 Grooming Quezi marriage exclusion and identity formation
among disabled men in contemporary China American Ethnologist 264
171
VULNERABLE POPULATIONS AND GENETIC DISORDERS
890ndash909
Konrad M 2003 Predictive genetic testing and the making of the pre-symptomatic
person prognostic moralities amongst Huntingtons-affected families
Anthropology amp Medicine10123-49
Konrad M 2005 Narrating the New Predictive GeneticsCambridge Cambridge
University Press
Knoppers J Y amp Godard B 2003 Genetic information and life insurance a real
risk European Journal of Human Genetics11561-564
Latz I 1981 Stigma a social psychological analysis2ndHillsdale New Jersey
Lawrence Erlbaum Associates
Lei Z H eds 1991 Handbook of Family Planning Administration[jihua shengyu
shishi shouce] Printed by Gansu Commission on Family Planning131ndash132
[雷卓汉《计划生育实施手册》甘肃计划生育委员会]
Lemmens T 2000 Selective Justice Genetic Discrimination and Insurance Should
We Single Out Genes in Our Laws McGill Law Review 45 2 347-412
Li C amp Zhou J 2005 Hubei asks for permission for prenatal genetic testing (Hubei
chanqian yichuan jiance yaoqiu zhunruzhi) Xinhua News 9 December [李才周
杰湖北产前遗传检测要求准入制《新华通讯》 2005-12-9]
Li D Z Liao C Li J amp Xie X 2006 Prenatal diagnosis of b-thalassemia in
Southern China European Journal of Obstetrics amp Gynecology and
Reproductive Biology 12881ndash85
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Li J 2006 Free testing for Thalessemia in Nanning (Nanning mianfei jiance dizhong
hai pinxue) Chinese Population（Zhongguo Renkou） 19 June [李杰南宁免
费检测地中海贫血 《中国人口》 2006-6-19]
Lin T Y amp Lin M C 1980 Love denial and rejection-responses of Chinese
families to mental illness In Kleinman A amp Lin T Y eds Normal and
Abnormal Behavior in Chinese Culture Boston MA D Reidel
Liu MF 2007 Five hospitals got permission for prenatal genetic testing in Beijing
（Beijng wu jia yiyuan huoxu shishi chanqian yichuan jiance） Beijing Morning
Daily (Beijing Chen bao) 10 July [刘墨非 北京五家医院获许实施产前遗传
检测北京晨报 2007-7-10]Online
httplifepeoplecomcnBIG510895967176html [Accessed date March
2010]
Liu S 2005 Gender fondness of Chinese couple [Zhongguo fufu de xingbie pianhao]
Population Research [Renkou yanjiu ]31-11 [刘爽中国夫妇的性别偏好《人
口研究》 2005-3]
Liu Z Y 2006 Cultural conception as demonstrated in the choice of medical
treatment of Tibetan (zangmin jiuyi xingwei xuanze de wenhua guannian)
Opening Era (kaifang shidai) 4 111-123 [刘志扬 西藏农民就医选择的文化
观念《开放时代》2006-4]
Lock M 2005 The Eclipse of the Gene and the Return of Divination Current
Anthropology 4647-70
Lu HY 2005 Does genetic testing predict 47 diseases [jiyin jiance keyi yuce 47
zhong jibing ma] Jingbao Daily 29 November [鲁华源 基因检测可以预测 47
173
VULNERABLE POPULATIONS AND GENETIC DISORDERS
种疾病《竞报》 2005-11-29]
Luo J Y 2005 The present status and future trend of birth defect intervention in
China （woguo chusheng quexian ganyu de xianzhuang yu fazan qushi）
Practical Preventive Medicine (shijian yifang yixue) 122458-460 [罗家友我
国出生缺陷干预的现状与发展趋势《实践预防医学》 200512]
Macleod P M 1993 Implication of the child with malformations for the family and
society In Stevenson R E Hall J G amp Goodman RM eds Human
malformations and related anomalies Vol I Oxford Monographs on Medical
Genetics No 27 187ndash196 Oxford Oxford University Press
Mao X 1998 Chinese geneticistsrsquo view of ethical issues in genetic testing and
screening evidence for eugenics in China American Journal of Human
Genetics 63688-695
Marteau T amp Richards M eds 1996 The troubled helix social and psychological
implications of the new human genetics Cambridge Cambridge University
Press
Martin P 2001 Genetic governance the risks oversight and regulation of genetic
databases in the UK New Genetics and Society 202 157ndash183
Mavis J amp Brian S 2003 The governance of human genetics policy discourse and
constructions of public trust New Genetics and Society 221 21-41
Mc Carrick P M 1993 Genetic testing and genetic screening Kennedy
Institute of Ethics Journal Sep 33333-354
Meng K L 2004 Chinarsquos evolving health care market how doctors feel and what
174
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they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
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banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
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shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
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Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
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SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
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地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
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Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
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UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
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UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
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Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
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WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
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Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
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Education Society 24
Gardner-Medwin D amp Sharples P 1989 Some studies of the Duchenne and
autosomal recessive types of muscular dystrophy Brain Development 11
91ndash97
Goffman E 1986 Stigma notes on the management of spoiled identity First
Touchstone Edition New York Simon amp Schuster 2-5
GPPC (Genetics and Public Policy Centre) 2004 Reproductive genetic testing What
America thinks Online
httpwwwdnapolicyorgimagesreportpdfsReproGenTestAmericaThinkspdf
[Accessed date March 2010]
Gray E J amp Clarke A 2000 Shared decision making and non-directiveness in
genetic counselling Journal of Medical Genetics 37135ndash138
Greenhalgh S 2003 Science Modernity and the Making of Chinarsquos One-Child policy
Population and Development Review 292163-196
Greenhalgh S amp Winckler E A 2005 Governing Chinarsquos population Stanford CA
Stanford University Press 95
Hansson M G 2005 Building on relationships of trust in bi-bank research Journal
of Medical Ethics 31 415418
Harper P S 1988 Genetic councelling in Mendelian disorders In PS Harper eds
Practical genetic councelling London Wright 18-41
169
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Harper P S 2004 Practical genetic counselling 6th eds Oxford Oxford University
Press
Harris M Winship I amp Spriggs M 2005 Controversies and Ethical Issues in
Cancer-genetic Clinics The Lancet Oncology 65 301-310
Harris R 1998 Genetic counselling and testing in Europe Journal of the Royal
College of Physicians of London 32 335ndash338
He L amp Shi W X eds 1989 Modern medical ethics Zhejiang Education
Press139ndash146 [何伦施卫星现代医学伦理学浙江教育出版社1989]
He X amp Xiao Q 2008 Umbilical Cord Blood Bank should be standardized
(qixueku yingdang guifan hua) Keji ribao 25 February [何新肖青脐血库应
当规范化科技日报 2008-2-25]
Herndon C N 1955 Heredity counselling Eugenics Quarterly22 83ndash89
Hsia Y E 1977 Approaches to the appraisal of genetic counseling In Lubs H A
De la Cruz F F eds Genetic Counseling 53ndash82 New York Raven Press
Huang Q 2006 Test gene does it like check-up (jiance jiyin he tijian yiyang ma)
Xinming weekly (Xinming Zhoukan) 13 Aprial [黄祺 检测基因和体检一样
吗新民周刊2006-4-13]
Huang S Z 2007 The consideration about the current situation of antenatal
diagnose in China[Guanyu zhongguo chuanqian zhenduan xianzhuang de
sikao]Chinese Journal of Healthy Birth amp Child Care[zhongguo yousheng
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国优生优育杂志》 2007-2]
Huang S Z amp Gao Z Y 2006 History of medical genetics in China Journal of
Peking UniversityHeath Science (English) 381 9-13
Hui Y 2004 New century Chinese-English dictionary(xin shiji hanying cidian)
Beijing Foreign Language Teaching and Research Press1964ndash1965 [惠宇
《新世纪汉英辞典》 北京外语教学与研究出版社2004]
Jiao Z X Zhuang G L Zhou C Q Shu Y M Li J amp Liang X Y 2004
Birth of healthy children after preimplantation diagnosis of beta-thalassemia
Chinese medical Journal (English) 1174483-487
Jorde L B Carey J C Bamshad M J amp White R L 1999 Medical Genetics 2nd
eds St Louis Mo Mosby Inc
Kaufman J amp Fang J 2002 Privatization of health services and the reproductive
health of rural Chinese women Reproductive Health matters 1020108-116
Kent G Howie H Fletcher M Newbury-Ecob R amp Hosie K 2000 The
relationship between perceived risk thought intrusiveness and emotional
well-being in women receiving counselling for breast cancer risk in a family
history clinic Brtish Journal of Health Psychol 515-26
Kerr A amp Shakespeare T 2002 Genetic politics from eugenics to genome
Cheltenham UK New Clarion Press 125ndash127
Kohrman M 1999 Grooming Quezi marriage exclusion and identity formation
among disabled men in contemporary China American Ethnologist 264
171
VULNERABLE POPULATIONS AND GENETIC DISORDERS
890ndash909
Konrad M 2003 Predictive genetic testing and the making of the pre-symptomatic
person prognostic moralities amongst Huntingtons-affected families
Anthropology amp Medicine10123-49
Konrad M 2005 Narrating the New Predictive GeneticsCambridge Cambridge
University Press
Knoppers J Y amp Godard B 2003 Genetic information and life insurance a real
risk European Journal of Human Genetics11561-564
Latz I 1981 Stigma a social psychological analysis2ndHillsdale New Jersey
Lawrence Erlbaum Associates
Lei Z H eds 1991 Handbook of Family Planning Administration[jihua shengyu
shishi shouce] Printed by Gansu Commission on Family Planning131ndash132
[雷卓汉《计划生育实施手册》甘肃计划生育委员会]
Lemmens T 2000 Selective Justice Genetic Discrimination and Insurance Should
We Single Out Genes in Our Laws McGill Law Review 45 2 347-412
Li C amp Zhou J 2005 Hubei asks for permission for prenatal genetic testing (Hubei
chanqian yichuan jiance yaoqiu zhunruzhi) Xinhua News 9 December [李才周
杰湖北产前遗传检测要求准入制《新华通讯》 2005-12-9]
Li D Z Liao C Li J amp Xie X 2006 Prenatal diagnosis of b-thalassemia in
Southern China European Journal of Obstetrics amp Gynecology and
Reproductive Biology 12881ndash85
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Li J 2006 Free testing for Thalessemia in Nanning (Nanning mianfei jiance dizhong
hai pinxue) Chinese Population（Zhongguo Renkou） 19 June [李杰南宁免
费检测地中海贫血 《中国人口》 2006-6-19]
Lin T Y amp Lin M C 1980 Love denial and rejection-responses of Chinese
families to mental illness In Kleinman A amp Lin T Y eds Normal and
Abnormal Behavior in Chinese Culture Boston MA D Reidel
Liu MF 2007 Five hospitals got permission for prenatal genetic testing in Beijing
（Beijng wu jia yiyuan huoxu shishi chanqian yichuan jiance） Beijing Morning
Daily (Beijing Chen bao) 10 July [刘墨非 北京五家医院获许实施产前遗传
检测北京晨报 2007-7-10]Online
httplifepeoplecomcnBIG510895967176html [Accessed date March
2010]
Liu S 2005 Gender fondness of Chinese couple [Zhongguo fufu de xingbie pianhao]
Population Research [Renkou yanjiu ]31-11 [刘爽中国夫妇的性别偏好《人
口研究》 2005-3]
Liu Z Y 2006 Cultural conception as demonstrated in the choice of medical
treatment of Tibetan (zangmin jiuyi xingwei xuanze de wenhua guannian)
Opening Era (kaifang shidai) 4 111-123 [刘志扬 西藏农民就医选择的文化
观念《开放时代》2006-4]
Lock M 2005 The Eclipse of the Gene and the Return of Divination Current
Anthropology 4647-70
Lu HY 2005 Does genetic testing predict 47 diseases [jiyin jiance keyi yuce 47
zhong jibing ma] Jingbao Daily 29 November [鲁华源 基因检测可以预测 47
173
VULNERABLE POPULATIONS AND GENETIC DISORDERS
种疾病《竞报》 2005-11-29]
Luo J Y 2005 The present status and future trend of birth defect intervention in
China （woguo chusheng quexian ganyu de xianzhuang yu fazan qushi）
Practical Preventive Medicine (shijian yifang yixue) 122458-460 [罗家友我
国出生缺陷干预的现状与发展趋势《实践预防医学》 200512]
Macleod P M 1993 Implication of the child with malformations for the family and
society In Stevenson R E Hall J G amp Goodman RM eds Human
malformations and related anomalies Vol I Oxford Monographs on Medical
Genetics No 27 187ndash196 Oxford Oxford University Press
Mao X 1998 Chinese geneticistsrsquo view of ethical issues in genetic testing and
screening evidence for eugenics in China American Journal of Human
Genetics 63688-695
Marteau T amp Richards M eds 1996 The troubled helix social and psychological
implications of the new human genetics Cambridge Cambridge University
Press
Martin P 2001 Genetic governance the risks oversight and regulation of genetic
databases in the UK New Genetics and Society 202 157ndash183
Mavis J amp Brian S 2003 The governance of human genetics policy discourse and
constructions of public trust New Genetics and Society 221 21-41
Mc Carrick P M 1993 Genetic testing and genetic screening Kennedy
Institute of Ethics Journal Sep 33333-354
Meng K L 2004 Chinarsquos evolving health care market how doctors feel and what
174
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they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
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banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
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shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
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March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
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[Accessed date March 2010]
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Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
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Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
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（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
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2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
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Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
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177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
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科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
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SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
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2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
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[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
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Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
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UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
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Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
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WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
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Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
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[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
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Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
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Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Harper P S 2004 Practical genetic counselling 6th eds Oxford Oxford University
Press
Harris M Winship I amp Spriggs M 2005 Controversies and Ethical Issues in
Cancer-genetic Clinics The Lancet Oncology 65 301-310
Harris R 1998 Genetic counselling and testing in Europe Journal of the Royal
College of Physicians of London 32 335ndash338
He L amp Shi W X eds 1989 Modern medical ethics Zhejiang Education
Press139ndash146 [何伦施卫星现代医学伦理学浙江教育出版社1989]
He X amp Xiao Q 2008 Umbilical Cord Blood Bank should be standardized
(qixueku yingdang guifan hua) Keji ribao 25 February [何新肖青脐血库应
当规范化科技日报 2008-2-25]
Herndon C N 1955 Heredity counselling Eugenics Quarterly22 83ndash89
Hsia Y E 1977 Approaches to the appraisal of genetic counseling In Lubs H A
De la Cruz F F eds Genetic Counseling 53ndash82 New York Raven Press
Huang Q 2006 Test gene does it like check-up (jiance jiyin he tijian yiyang ma)
Xinming weekly (Xinming Zhoukan) 13 Aprial [黄祺 检测基因和体检一样
吗新民周刊2006-4-13]
Huang S Z 2007 The consideration about the current situation of antenatal
diagnose in China[Guanyu zhongguo chuanqian zhenduan xianzhuang de
sikao]Chinese Journal of Healthy Birth amp Child Care[zhongguo yousheng
170
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youyu zazhi] 13266-69 [黄尚志关于我国产前诊断现状的思考《中
国优生优育杂志》 2007-2]
Huang S Z amp Gao Z Y 2006 History of medical genetics in China Journal of
Peking UniversityHeath Science (English) 381 9-13
Hui Y 2004 New century Chinese-English dictionary(xin shiji hanying cidian)
Beijing Foreign Language Teaching and Research Press1964ndash1965 [惠宇
《新世纪汉英辞典》 北京外语教学与研究出版社2004]
Jiao Z X Zhuang G L Zhou C Q Shu Y M Li J amp Liang X Y 2004
Birth of healthy children after preimplantation diagnosis of beta-thalassemia
Chinese medical Journal (English) 1174483-487
Jorde L B Carey J C Bamshad M J amp White R L 1999 Medical Genetics 2nd
eds St Louis Mo Mosby Inc
Kaufman J amp Fang J 2002 Privatization of health services and the reproductive
health of rural Chinese women Reproductive Health matters 1020108-116
Kent G Howie H Fletcher M Newbury-Ecob R amp Hosie K 2000 The
relationship between perceived risk thought intrusiveness and emotional
well-being in women receiving counselling for breast cancer risk in a family
history clinic Brtish Journal of Health Psychol 515-26
Kerr A amp Shakespeare T 2002 Genetic politics from eugenics to genome
Cheltenham UK New Clarion Press 125ndash127
Kohrman M 1999 Grooming Quezi marriage exclusion and identity formation
among disabled men in contemporary China American Ethnologist 264
171
VULNERABLE POPULATIONS AND GENETIC DISORDERS
890ndash909
Konrad M 2003 Predictive genetic testing and the making of the pre-symptomatic
person prognostic moralities amongst Huntingtons-affected families
Anthropology amp Medicine10123-49
Konrad M 2005 Narrating the New Predictive GeneticsCambridge Cambridge
University Press
Knoppers J Y amp Godard B 2003 Genetic information and life insurance a real
risk European Journal of Human Genetics11561-564
Latz I 1981 Stigma a social psychological analysis2ndHillsdale New Jersey
Lawrence Erlbaum Associates
Lei Z H eds 1991 Handbook of Family Planning Administration[jihua shengyu
shishi shouce] Printed by Gansu Commission on Family Planning131ndash132
[雷卓汉《计划生育实施手册》甘肃计划生育委员会]
Lemmens T 2000 Selective Justice Genetic Discrimination and Insurance Should
We Single Out Genes in Our Laws McGill Law Review 45 2 347-412
Li C amp Zhou J 2005 Hubei asks for permission for prenatal genetic testing (Hubei
chanqian yichuan jiance yaoqiu zhunruzhi) Xinhua News 9 December [李才周
杰湖北产前遗传检测要求准入制《新华通讯》 2005-12-9]
Li D Z Liao C Li J amp Xie X 2006 Prenatal diagnosis of b-thalassemia in
Southern China European Journal of Obstetrics amp Gynecology and
Reproductive Biology 12881ndash85
172
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Li J 2006 Free testing for Thalessemia in Nanning (Nanning mianfei jiance dizhong
hai pinxue) Chinese Population（Zhongguo Renkou） 19 June [李杰南宁免
费检测地中海贫血 《中国人口》 2006-6-19]
Lin T Y amp Lin M C 1980 Love denial and rejection-responses of Chinese
families to mental illness In Kleinman A amp Lin T Y eds Normal and
Abnormal Behavior in Chinese Culture Boston MA D Reidel
Liu MF 2007 Five hospitals got permission for prenatal genetic testing in Beijing
（Beijng wu jia yiyuan huoxu shishi chanqian yichuan jiance） Beijing Morning
Daily (Beijing Chen bao) 10 July [刘墨非 北京五家医院获许实施产前遗传
检测北京晨报 2007-7-10]Online
httplifepeoplecomcnBIG510895967176html [Accessed date March
2010]
Liu S 2005 Gender fondness of Chinese couple [Zhongguo fufu de xingbie pianhao]
Population Research [Renkou yanjiu ]31-11 [刘爽中国夫妇的性别偏好《人
口研究》 2005-3]
Liu Z Y 2006 Cultural conception as demonstrated in the choice of medical
treatment of Tibetan (zangmin jiuyi xingwei xuanze de wenhua guannian)
Opening Era (kaifang shidai) 4 111-123 [刘志扬 西藏农民就医选择的文化
观念《开放时代》2006-4]
Lock M 2005 The Eclipse of the Gene and the Return of Divination Current
Anthropology 4647-70
Lu HY 2005 Does genetic testing predict 47 diseases [jiyin jiance keyi yuce 47
zhong jibing ma] Jingbao Daily 29 November [鲁华源 基因检测可以预测 47
173
VULNERABLE POPULATIONS AND GENETIC DISORDERS
种疾病《竞报》 2005-11-29]
Luo J Y 2005 The present status and future trend of birth defect intervention in
China （woguo chusheng quexian ganyu de xianzhuang yu fazan qushi）
Practical Preventive Medicine (shijian yifang yixue) 122458-460 [罗家友我
国出生缺陷干预的现状与发展趋势《实践预防医学》 200512]
Macleod P M 1993 Implication of the child with malformations for the family and
society In Stevenson R E Hall J G amp Goodman RM eds Human
malformations and related anomalies Vol I Oxford Monographs on Medical
Genetics No 27 187ndash196 Oxford Oxford University Press
Mao X 1998 Chinese geneticistsrsquo view of ethical issues in genetic testing and
screening evidence for eugenics in China American Journal of Human
Genetics 63688-695
Marteau T amp Richards M eds 1996 The troubled helix social and psychological
implications of the new human genetics Cambridge Cambridge University
Press
Martin P 2001 Genetic governance the risks oversight and regulation of genetic
databases in the UK New Genetics and Society 202 157ndash183
Mavis J amp Brian S 2003 The governance of human genetics policy discourse and
constructions of public trust New Genetics and Society 221 21-41
Mc Carrick P M 1993 Genetic testing and genetic screening Kennedy
Institute of Ethics Journal Sep 33333-354
Meng K L 2004 Chinarsquos evolving health care market how doctors feel and what
174
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they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
Prenatal Diagnosis Technology（chuanqian zhenduan jishu guanli guanli
banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
permission of MOH （weishengbu shenhe pizhun de kaizhang renlei fuzhu
shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
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Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
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地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
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Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
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UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
March 2010]
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Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
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医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
BIBLIOGRAPHY
youyu zazhi] 13266-69 [黄尚志关于我国产前诊断现状的思考《中
国优生优育杂志》 2007-2]
Huang S Z amp Gao Z Y 2006 History of medical genetics in China Journal of
Peking UniversityHeath Science (English) 381 9-13
Hui Y 2004 New century Chinese-English dictionary(xin shiji hanying cidian)
Beijing Foreign Language Teaching and Research Press1964ndash1965 [惠宇
《新世纪汉英辞典》 北京外语教学与研究出版社2004]
Jiao Z X Zhuang G L Zhou C Q Shu Y M Li J amp Liang X Y 2004
Birth of healthy children after preimplantation diagnosis of beta-thalassemia
Chinese medical Journal (English) 1174483-487
Jorde L B Carey J C Bamshad M J amp White R L 1999 Medical Genetics 2nd
eds St Louis Mo Mosby Inc
Kaufman J amp Fang J 2002 Privatization of health services and the reproductive
health of rural Chinese women Reproductive Health matters 1020108-116
Kent G Howie H Fletcher M Newbury-Ecob R amp Hosie K 2000 The
relationship between perceived risk thought intrusiveness and emotional
well-being in women receiving counselling for breast cancer risk in a family
history clinic Brtish Journal of Health Psychol 515-26
Kerr A amp Shakespeare T 2002 Genetic politics from eugenics to genome
Cheltenham UK New Clarion Press 125ndash127
Kohrman M 1999 Grooming Quezi marriage exclusion and identity formation
among disabled men in contemporary China American Ethnologist 264
171
VULNERABLE POPULATIONS AND GENETIC DISORDERS
890ndash909
Konrad M 2003 Predictive genetic testing and the making of the pre-symptomatic
person prognostic moralities amongst Huntingtons-affected families
Anthropology amp Medicine10123-49
Konrad M 2005 Narrating the New Predictive GeneticsCambridge Cambridge
University Press
Knoppers J Y amp Godard B 2003 Genetic information and life insurance a real
risk European Journal of Human Genetics11561-564
Latz I 1981 Stigma a social psychological analysis2ndHillsdale New Jersey
Lawrence Erlbaum Associates
Lei Z H eds 1991 Handbook of Family Planning Administration[jihua shengyu
shishi shouce] Printed by Gansu Commission on Family Planning131ndash132
[雷卓汉《计划生育实施手册》甘肃计划生育委员会]
Lemmens T 2000 Selective Justice Genetic Discrimination and Insurance Should
We Single Out Genes in Our Laws McGill Law Review 45 2 347-412
Li C amp Zhou J 2005 Hubei asks for permission for prenatal genetic testing (Hubei
chanqian yichuan jiance yaoqiu zhunruzhi) Xinhua News 9 December [李才周
杰湖北产前遗传检测要求准入制《新华通讯》 2005-12-9]
Li D Z Liao C Li J amp Xie X 2006 Prenatal diagnosis of b-thalassemia in
Southern China European Journal of Obstetrics amp Gynecology and
Reproductive Biology 12881ndash85
172
BIBLIOGRAPHY
Li J 2006 Free testing for Thalessemia in Nanning (Nanning mianfei jiance dizhong
hai pinxue) Chinese Population（Zhongguo Renkou） 19 June [李杰南宁免
费检测地中海贫血 《中国人口》 2006-6-19]
Lin T Y amp Lin M C 1980 Love denial and rejection-responses of Chinese
families to mental illness In Kleinman A amp Lin T Y eds Normal and
Abnormal Behavior in Chinese Culture Boston MA D Reidel
Liu MF 2007 Five hospitals got permission for prenatal genetic testing in Beijing
（Beijng wu jia yiyuan huoxu shishi chanqian yichuan jiance） Beijing Morning
Daily (Beijing Chen bao) 10 July [刘墨非 北京五家医院获许实施产前遗传
检测北京晨报 2007-7-10]Online
httplifepeoplecomcnBIG510895967176html [Accessed date March
2010]
Liu S 2005 Gender fondness of Chinese couple [Zhongguo fufu de xingbie pianhao]
Population Research [Renkou yanjiu ]31-11 [刘爽中国夫妇的性别偏好《人
口研究》 2005-3]
Liu Z Y 2006 Cultural conception as demonstrated in the choice of medical
treatment of Tibetan (zangmin jiuyi xingwei xuanze de wenhua guannian)
Opening Era (kaifang shidai) 4 111-123 [刘志扬 西藏农民就医选择的文化
观念《开放时代》2006-4]
Lock M 2005 The Eclipse of the Gene and the Return of Divination Current
Anthropology 4647-70
Lu HY 2005 Does genetic testing predict 47 diseases [jiyin jiance keyi yuce 47
zhong jibing ma] Jingbao Daily 29 November [鲁华源 基因检测可以预测 47
173
VULNERABLE POPULATIONS AND GENETIC DISORDERS
种疾病《竞报》 2005-11-29]
Luo J Y 2005 The present status and future trend of birth defect intervention in
China （woguo chusheng quexian ganyu de xianzhuang yu fazan qushi）
Practical Preventive Medicine (shijian yifang yixue) 122458-460 [罗家友我
国出生缺陷干预的现状与发展趋势《实践预防医学》 200512]
Macleod P M 1993 Implication of the child with malformations for the family and
society In Stevenson R E Hall J G amp Goodman RM eds Human
malformations and related anomalies Vol I Oxford Monographs on Medical
Genetics No 27 187ndash196 Oxford Oxford University Press
Mao X 1998 Chinese geneticistsrsquo view of ethical issues in genetic testing and
screening evidence for eugenics in China American Journal of Human
Genetics 63688-695
Marteau T amp Richards M eds 1996 The troubled helix social and psychological
implications of the new human genetics Cambridge Cambridge University
Press
Martin P 2001 Genetic governance the risks oversight and regulation of genetic
databases in the UK New Genetics and Society 202 157ndash183
Mavis J amp Brian S 2003 The governance of human genetics policy discourse and
constructions of public trust New Genetics and Society 221 21-41
Mc Carrick P M 1993 Genetic testing and genetic screening Kennedy
Institute of Ethics Journal Sep 33333-354
Meng K L 2004 Chinarsquos evolving health care market how doctors feel and what
174
BIBLIOGRAPHY
they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
Prenatal Diagnosis Technology（chuanqian zhenduan jishu guanli guanli
banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
permission of MOH （weishengbu shenhe pizhun de kaizhang renlei fuzhu
shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
176
BIBLIOGRAPHY
Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
certificate in different cities [Gedi banli zhunshegzheng de chengxu] [邵沛 各
地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
BIBLIOGRAPHY
Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
Online httpwwwuktsorgpdfsawarenessukts-standards-2008pdf [Accessed
date March 2010]
UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
March 2010]
180
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Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
BIBLIOGRAPHY
医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
VULNERABLE POPULATIONS AND GENETIC DISORDERS
890ndash909
Konrad M 2003 Predictive genetic testing and the making of the pre-symptomatic
person prognostic moralities amongst Huntingtons-affected families
Anthropology amp Medicine10123-49
Konrad M 2005 Narrating the New Predictive GeneticsCambridge Cambridge
University Press
Knoppers J Y amp Godard B 2003 Genetic information and life insurance a real
risk European Journal of Human Genetics11561-564
Latz I 1981 Stigma a social psychological analysis2ndHillsdale New Jersey
Lawrence Erlbaum Associates
Lei Z H eds 1991 Handbook of Family Planning Administration[jihua shengyu
shishi shouce] Printed by Gansu Commission on Family Planning131ndash132
[雷卓汉《计划生育实施手册》甘肃计划生育委员会]
Lemmens T 2000 Selective Justice Genetic Discrimination and Insurance Should
We Single Out Genes in Our Laws McGill Law Review 45 2 347-412
Li C amp Zhou J 2005 Hubei asks for permission for prenatal genetic testing (Hubei
chanqian yichuan jiance yaoqiu zhunruzhi) Xinhua News 9 December [李才周
杰湖北产前遗传检测要求准入制《新华通讯》 2005-12-9]
Li D Z Liao C Li J amp Xie X 2006 Prenatal diagnosis of b-thalassemia in
Southern China European Journal of Obstetrics amp Gynecology and
Reproductive Biology 12881ndash85
172
BIBLIOGRAPHY
Li J 2006 Free testing for Thalessemia in Nanning (Nanning mianfei jiance dizhong
hai pinxue) Chinese Population（Zhongguo Renkou） 19 June [李杰南宁免
费检测地中海贫血 《中国人口》 2006-6-19]
Lin T Y amp Lin M C 1980 Love denial and rejection-responses of Chinese
families to mental illness In Kleinman A amp Lin T Y eds Normal and
Abnormal Behavior in Chinese Culture Boston MA D Reidel
Liu MF 2007 Five hospitals got permission for prenatal genetic testing in Beijing
（Beijng wu jia yiyuan huoxu shishi chanqian yichuan jiance） Beijing Morning
Daily (Beijing Chen bao) 10 July [刘墨非 北京五家医院获许实施产前遗传
检测北京晨报 2007-7-10]Online
httplifepeoplecomcnBIG510895967176html [Accessed date March
2010]
Liu S 2005 Gender fondness of Chinese couple [Zhongguo fufu de xingbie pianhao]
Population Research [Renkou yanjiu ]31-11 [刘爽中国夫妇的性别偏好《人
口研究》 2005-3]
Liu Z Y 2006 Cultural conception as demonstrated in the choice of medical
treatment of Tibetan (zangmin jiuyi xingwei xuanze de wenhua guannian)
Opening Era (kaifang shidai) 4 111-123 [刘志扬 西藏农民就医选择的文化
观念《开放时代》2006-4]
Lock M 2005 The Eclipse of the Gene and the Return of Divination Current
Anthropology 4647-70
Lu HY 2005 Does genetic testing predict 47 diseases [jiyin jiance keyi yuce 47
zhong jibing ma] Jingbao Daily 29 November [鲁华源 基因检测可以预测 47
173
VULNERABLE POPULATIONS AND GENETIC DISORDERS
种疾病《竞报》 2005-11-29]
Luo J Y 2005 The present status and future trend of birth defect intervention in
China （woguo chusheng quexian ganyu de xianzhuang yu fazan qushi）
Practical Preventive Medicine (shijian yifang yixue) 122458-460 [罗家友我
国出生缺陷干预的现状与发展趋势《实践预防医学》 200512]
Macleod P M 1993 Implication of the child with malformations for the family and
society In Stevenson R E Hall J G amp Goodman RM eds Human
malformations and related anomalies Vol I Oxford Monographs on Medical
Genetics No 27 187ndash196 Oxford Oxford University Press
Mao X 1998 Chinese geneticistsrsquo view of ethical issues in genetic testing and
screening evidence for eugenics in China American Journal of Human
Genetics 63688-695
Marteau T amp Richards M eds 1996 The troubled helix social and psychological
implications of the new human genetics Cambridge Cambridge University
Press
Martin P 2001 Genetic governance the risks oversight and regulation of genetic
databases in the UK New Genetics and Society 202 157ndash183
Mavis J amp Brian S 2003 The governance of human genetics policy discourse and
constructions of public trust New Genetics and Society 221 21-41
Mc Carrick P M 1993 Genetic testing and genetic screening Kennedy
Institute of Ethics Journal Sep 33333-354
Meng K L 2004 Chinarsquos evolving health care market how doctors feel and what
174
BIBLIOGRAPHY
they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
Prenatal Diagnosis Technology（chuanqian zhenduan jishu guanli guanli
banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
permission of MOH （weishengbu shenhe pizhun de kaizhang renlei fuzhu
shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
176
BIBLIOGRAPHY
Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
certificate in different cities [Gedi banli zhunshegzheng de chengxu] [邵沛 各
地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
BIBLIOGRAPHY
Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
Online httpwwwuktsorgpdfsawarenessukts-standards-2008pdf [Accessed
date March 2010]
UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
March 2010]
180
BIBLIOGRAPHY
Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
BIBLIOGRAPHY
医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
BIBLIOGRAPHY
Li J 2006 Free testing for Thalessemia in Nanning (Nanning mianfei jiance dizhong
hai pinxue) Chinese Population（Zhongguo Renkou） 19 June [李杰南宁免
费检测地中海贫血 《中国人口》 2006-6-19]
Lin T Y amp Lin M C 1980 Love denial and rejection-responses of Chinese
families to mental illness In Kleinman A amp Lin T Y eds Normal and
Abnormal Behavior in Chinese Culture Boston MA D Reidel
Liu MF 2007 Five hospitals got permission for prenatal genetic testing in Beijing
（Beijng wu jia yiyuan huoxu shishi chanqian yichuan jiance） Beijing Morning
Daily (Beijing Chen bao) 10 July [刘墨非 北京五家医院获许实施产前遗传
检测北京晨报 2007-7-10]Online
httplifepeoplecomcnBIG510895967176html [Accessed date March
2010]
Liu S 2005 Gender fondness of Chinese couple [Zhongguo fufu de xingbie pianhao]
Population Research [Renkou yanjiu ]31-11 [刘爽中国夫妇的性别偏好《人
口研究》 2005-3]
Liu Z Y 2006 Cultural conception as demonstrated in the choice of medical
treatment of Tibetan (zangmin jiuyi xingwei xuanze de wenhua guannian)
Opening Era (kaifang shidai) 4 111-123 [刘志扬 西藏农民就医选择的文化
观念《开放时代》2006-4]
Lock M 2005 The Eclipse of the Gene and the Return of Divination Current
Anthropology 4647-70
Lu HY 2005 Does genetic testing predict 47 diseases [jiyin jiance keyi yuce 47
zhong jibing ma] Jingbao Daily 29 November [鲁华源 基因检测可以预测 47
173
VULNERABLE POPULATIONS AND GENETIC DISORDERS
种疾病《竞报》 2005-11-29]
Luo J Y 2005 The present status and future trend of birth defect intervention in
China （woguo chusheng quexian ganyu de xianzhuang yu fazan qushi）
Practical Preventive Medicine (shijian yifang yixue) 122458-460 [罗家友我
国出生缺陷干预的现状与发展趋势《实践预防医学》 200512]
Macleod P M 1993 Implication of the child with malformations for the family and
society In Stevenson R E Hall J G amp Goodman RM eds Human
malformations and related anomalies Vol I Oxford Monographs on Medical
Genetics No 27 187ndash196 Oxford Oxford University Press
Mao X 1998 Chinese geneticistsrsquo view of ethical issues in genetic testing and
screening evidence for eugenics in China American Journal of Human
Genetics 63688-695
Marteau T amp Richards M eds 1996 The troubled helix social and psychological
implications of the new human genetics Cambridge Cambridge University
Press
Martin P 2001 Genetic governance the risks oversight and regulation of genetic
databases in the UK New Genetics and Society 202 157ndash183
Mavis J amp Brian S 2003 The governance of human genetics policy discourse and
constructions of public trust New Genetics and Society 221 21-41
Mc Carrick P M 1993 Genetic testing and genetic screening Kennedy
Institute of Ethics Journal Sep 33333-354
Meng K L 2004 Chinarsquos evolving health care market how doctors feel and what
174
BIBLIOGRAPHY
they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
Prenatal Diagnosis Technology（chuanqian zhenduan jishu guanli guanli
banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
permission of MOH （weishengbu shenhe pizhun de kaizhang renlei fuzhu
shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
176
BIBLIOGRAPHY
Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
certificate in different cities [Gedi banli zhunshegzheng de chengxu] [邵沛 各
地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
BIBLIOGRAPHY
Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
Online httpwwwuktsorgpdfsawarenessukts-standards-2008pdf [Accessed
date March 2010]
UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
March 2010]
180
BIBLIOGRAPHY
Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
BIBLIOGRAPHY
医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
VULNERABLE POPULATIONS AND GENETIC DISORDERS
种疾病《竞报》 2005-11-29]
Luo J Y 2005 The present status and future trend of birth defect intervention in
China （woguo chusheng quexian ganyu de xianzhuang yu fazan qushi）
Practical Preventive Medicine (shijian yifang yixue) 122458-460 [罗家友我
国出生缺陷干预的现状与发展趋势《实践预防医学》 200512]
Macleod P M 1993 Implication of the child with malformations for the family and
society In Stevenson R E Hall J G amp Goodman RM eds Human
malformations and related anomalies Vol I Oxford Monographs on Medical
Genetics No 27 187ndash196 Oxford Oxford University Press
Mao X 1998 Chinese geneticistsrsquo view of ethical issues in genetic testing and
screening evidence for eugenics in China American Journal of Human
Genetics 63688-695
Marteau T amp Richards M eds 1996 The troubled helix social and psychological
implications of the new human genetics Cambridge Cambridge University
Press
Martin P 2001 Genetic governance the risks oversight and regulation of genetic
databases in the UK New Genetics and Society 202 157ndash183
Mavis J amp Brian S 2003 The governance of human genetics policy discourse and
constructions of public trust New Genetics and Society 221 21-41
Mc Carrick P M 1993 Genetic testing and genetic screening Kennedy
Institute of Ethics Journal Sep 33333-354
Meng K L 2004 Chinarsquos evolving health care market how doctors feel and what
174
BIBLIOGRAPHY
they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
Prenatal Diagnosis Technology（chuanqian zhenduan jishu guanli guanli
banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
permission of MOH （weishengbu shenhe pizhun de kaizhang renlei fuzhu
shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
176
BIBLIOGRAPHY
Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
certificate in different cities [Gedi banli zhunshegzheng de chengxu] [邵沛 各
地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
BIBLIOGRAPHY
Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
Online httpwwwuktsorgpdfsawarenessukts-standards-2008pdf [Accessed
date March 2010]
UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
March 2010]
180
BIBLIOGRAPHY
Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
BIBLIOGRAPHY
医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
BIBLIOGRAPHY
they think Health Policy 69329-337
Michie S Smith J A Heaversedge J amp Read S 1999 Genetic counselling
clinical geneticistsrsquo views Journal of Genetic Counselling 8275-287
MOH (Chinese Ministry of Health) 2003a Guidelines of Genetic Counselling
( zixuan zixun jishu guifan) [卫生部 《遗传咨询技术规范》2003]
MOH (Chinese Ministry of Health) 2003b Measures for the Administration of
Prenatal Diagnosis Technology（chuanqian zhenduan jishu guanli guanli
banfa）[卫生部 《产前诊断技术管理办法》2003]
MOH (Chinese Ministry of Health) 2006 List of the institutions apply ART with
permission of MOH （weishengbu shenhe pizhun de kaizhang renlei fuzhu
shengzhi jishu jigou mimgdan） [ 中国卫生部《卫生部审核批准的开展人
类辅助生殖技术的机构名单》 2006 ]
MOH (Chinese Ministry of Health) amp CDPF (China Disabled Personsrsquo Federation)
2002 Action plans of improving birth quality and reduce birth defect
(2002-2010) (zhongguo tigao chusheng renkou sushi jianshao chusheng quexian
xingdong jihua (2002-2010)) Chinese Journal of Reproductive
Health (zhongguo shengyu jiangkang zazhi) 1332-4 [中国卫生部中国残
联中国提高出生人口素质减少出生缺陷行动计划(2002-2010)《中国生育
健康杂志》2002-3]
Murray T H 1996 The worth of a child Berkeley University of California Press
Nie J B 2005 Behind the Silence Chinese Voices on Abortion Rowman amp
Littlefield Publisher INC
175
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
176
BIBLIOGRAPHY
Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
certificate in different cities [Gedi banli zhunshegzheng de chengxu] [邵沛 各
地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
BIBLIOGRAPHY
Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
Online httpwwwuktsorgpdfsawarenessukts-standards-2008pdf [Accessed
date March 2010]
UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
March 2010]
180
BIBLIOGRAPHY
Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
BIBLIOGRAPHY
医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
VULNERABLE POPULATIONS AND GENETIC DISORDERS
NPFPC (National Population and Family Planning Commission) 2001 Project of
Intervention with Birth Defects （chuansheng quexian ganyu gongcheng） [国家
人口与计划生育委员会出生缺陷干预工程]
Online httprkjswxhshcnWebShowShowArticle367htm [Accessed date
March 2010]
Pearson V 1995 Population policy and eugenics in China British Journal of
Psychiatry1671-4
Petersen A 1999 Counselling the genetically lsquoat riskrsquo the poetics and politics of
lsquonon-directivenessrsquo Health Risk amp Society13 253ndash265
Prainsack B amp Siegal G 2006 The rise of genetic couple-hood A comparative
view of premarital genetic testing BioSocieties1 17ndash36
Qiu RZ 1993 Chinese medical ethics and euthanasia Cambridge Quarterly of
Healthcare Ethics 2 69-76
Qiu R Z 1999 Is Chinarsquos law eugenic A concern for collective good Online
httpwwwunescoorgcourier1999_09ukdossiertxt07htm[Accessed date
March 2010]
Qiu R Z eds 2004 Bioethics-Asian perspectives a quest for moral diversity
London Kluwer Academic Publishers
Qiu Y amp Xu L 2009 Free prenatal screening for lsquoDown syndromersquo in Shanghai
( Shanghai mianfei shaicha lsquotangshi zonghezheng rsquo) [仇逸徐亮上海免费
筛查lsquo唐氏综合症rsquo]
Online httpwwwcmdaorgcnnewscontent_c0112_x7127__html
[Accessed date March 2010]
176
BIBLIOGRAPHY
Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
certificate in different cities [Gedi banli zhunshegzheng de chengxu] [邵沛 各
地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
BIBLIOGRAPHY
Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
Online httpwwwuktsorgpdfsawarenessukts-standards-2008pdf [Accessed
date March 2010]
UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
March 2010]
180
BIBLIOGRAPHY
Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
BIBLIOGRAPHY
医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
BIBLIOGRAPHY
Reed S 1955 Counselling in medical genetics Philadelphia Saunders
Reed S 1975 A short history of genetic counselling Journal de la Societe de
Biologie 21 332ndash339
Reilly P R 1975 Genetic screening legislation In Harris H H amp Hirschhorn K
eds Advance in human genetics New York Plenum Press 319-376
Ren AG Wang LN Zhao P amp Li Z 2002 Current status of genetic counselling
in some maternal and child health care institutions（ bufen fuyou baojian
jigou jichuanzixun xianzhuang diaocha） Journal of China Productive Health
（zhongguo shengyu jiankang zazhi） 133131-134 [任安国王丽娜赵
平李竹部分妇幼保健机构遗传咨询现状调查《中国生育健康杂志》
2002-3]
Rosano A Botto L D Botting B amp Mastroiacovo P 2000 Infant mortality and
congenital anomalies from 1950 to 1994 an international perspective
Journal of Epidemiology Community Health 54 660ndash666
Rose N 2007 The political of life itself Oxfordshire Princeton University Press
Rose N amp Novas C 2003 Biological Citizenship In Ong A Collier S Global
Anthropology London Blackwell
Rogers C R 1951 Client-centered therapy Boston Houghton-Mifflin
Ruan F F 1980 Discussion on eugenics (tan tan yousheng xue) Health (jian
kang)114ndash17[阮芳赋谈谈优生学《健康》1980-1]
Ruan F F 2002 A short history on the reconstruction of eugenics in contemporary
China (zhongguo dangdai yousheng kexue congjian de shishi lueshu) China
177
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
certificate in different cities [Gedi banli zhunshegzheng de chengxu] [邵沛 各
地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
BIBLIOGRAPHY
Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
Online httpwwwuktsorgpdfsawarenessukts-standards-2008pdf [Accessed
date March 2010]
UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
March 2010]
180
BIBLIOGRAPHY
Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
BIBLIOGRAPHY
医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Historical Materials of Science and Technology (zhongguo keji
shiliao)234308-313[阮芳赋中国当代优生科学重建的史实略述《中国
科技史料》 20024]
Rubin S 1987 The psychological impact of genetic disease In Charash L Lovelace
R Wolf S Kutscher A Roye D amp Leach C eds Realities in coping with
progressive neuromuscular diseases 209-215 Philadelphia The Charles Press
Sartorius N 1997 Fighting schizophrenia and its stigma a new world psychiatric
association educational programme British Journal of Psychiatry1704297
Schneider CE 1998 The practice of autonomy patients doctors and medical
decisions New York Oxford University Press
SCNPC (Standing Committee of the National Peoples Congress) 2002 Chinese
Population and Family Planning Law (Zhongguo renkou yu jihua shengyu
fa)Articles 2 and 30 [中国全国人大常委会《中国人口和计划生育法》
2002]
Shakespeare T 1995 Back to the future New genetics and disabled people Critical
Social Policy 1523 22-35
Shao P 2007 The procedures of application for the reproductive permission
certificate in different cities [Gedi banli zhunshegzheng de chengxu] [邵沛 各
地办理准生证的程序] Online httphealthsohucom20070316n248773929shtml
[Accessed date March 2010]
Sleeboom F M 2005 The socio-genetic marginalization in Asia programme IIAS
Newsletter September 38
178
BIBLIOGRAPHY
Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
Online httpwwwuktsorgpdfsawarenessukts-standards-2008pdf [Accessed
date March 2010]
UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
March 2010]
180
BIBLIOGRAPHY
Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
BIBLIOGRAPHY
医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
BIBLIOGRAPHY
Stratford B amp Ng H 2000 People with Disabilities in China changing
outlookmdashnew solutionsmdashgrowing problems International Journal of Disability
Development and Education 47 1 7 -14
Tan J Z amp Zhao G M 2002 Chinese genetics history[zhongguo yichuan xue shi]
Shanghai Technology and Education Press [shjanhai kexue yu jiaoyu chubanshe]
[谈家桢赵功民中国遗传学历上海科技与教育出版社2002]
Tang K L 2002 Ethical dimensions of Yousheng New Zealand Bioethics Journal
33 9-14
Tibben A amp Duivebvoorden H J 1994 Psychological effects of pre-symptomatic
testing for Huntingtonrsquos disease Psychosomatic Medicine 56526ndash532
Tong G L 2005 The price of genetic fortune-telling in Beijing is lower than abroad
(Beijing jiyin suanming jiage diyu guowai) Beijing Technology Daily 5 October
[童光来 北京基因算命价格低于国外《北京科技报》 2005-10-5] Online
httpbkbynetcomarticlejspoid=6508058 [Accessed date March 2010]
UKTS (United Kingdom Thalassemia Society) 2008 Standards for the clinical care
of children and adult with thalassemia in the UK London UKTS
Online httpwwwuktsorgpdfsawarenessukts-standards-2008pdf [Accessed
date March 2010]
UNESCO (United Nations Educational Scientific and Cultural Organization) 2003
International Declaration on Human Genetic Data Article 11 Adopted
unanimously and by acclamation on 16 October 2003 by the 32nd session of the
General Conference of UNESCO
179
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
March 2010]
180
BIBLIOGRAPHY
Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
BIBLIOGRAPHY
医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
VULNERABLE POPULATIONS AND GENETIC DISORDERS
Urtizberea J A Fanb Q S Vroom E Rersquocan D amp Kaplan J C 2003 Looking
under every rock Duchenne muscular dystrophy and traditional Chinese medicine
Neuromuscular Disorders13 705-707
Wang KW amp Barnard A 2004 Technology-dependent children and their families a
review Journal of Advanced Nursing 45 36-46
Wang S G amp Zhang S K 2002 An approach of philosophical critical interpretation
in medical anthropology for cultural metaphor of disease and illness (Jibing de
wenhua yinyue yu yixue renleixue de zhexue jianbie jiexi) Medicine and
Philosophy (Yixue yu zhexue) 239 22-25 [王曙光张胜康疾病的文化隐喻
与医学人类学的哲学鉴别解析《医学与哲学》 2002-9]
Wang Y G 1999 A call for a new definition of eugenics Eubios Journal of Asian
and International Bioethics 9 73ndash74
Wang Y G 2004 Chinese lsquoeugenicsrsquo definition practice and cultural values In
Sleeboom F M eds 281-299 Genomics in Asia A Clash of Bioethical Interests
London Kegan Paul
Wapner R J 2005 Invasive prenatal diagnostic techniques Seminars in
Perinatology 296 401-404
Wei M Y 2008 Beijing and Tianjin Umbilical Cord Blood Bank opens to public
(Jing jin qixueku shouci xiang gongzong kaifang) Xin Jing Bao 27 February [魏
铭 言 京 津 脐 血 库 首 次 向 公 众 开 放 《 新 京 报 》 2008-2-18] Online
httpwwwgmwcnCONTENT2008-0227content_739811htm [Accessed date
March 2010]
180
BIBLIOGRAPHY
Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
BIBLIOGRAPHY
医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
BIBLIOGRAPHY
Weil J 2003 Psychological genetic counselling in the post-nondirective era a point
of view Journal of Genetic Counseling123 199-211
WHO (World Health Organization) 2006 Joint WHO-March of Dimes Meeting on
the Management of Birth Defects and Haemoglobin Disorders Geneva
WHO
Wikler D 1999 Can we learn from eugenics Journal of Medical Ethics
25183ndash194
Wu J R amp Cheng SQ 2005 New age Chinese-English dictionary (xin shidai
hanying da cidian) Beijing The Commercial Press 1871-1872 [吴景荣程镇
球 《新时代汉英大词典》 北京商务印书馆 2005]
Wu X Z amp Wen K Q eds 1990 Modern clinical medical ethics (xiandai
linchuang yixue lunlixue) Tianjin Peoplersquo Press [吴咸中温克勤 《现代
临床医学伦理学》 天津人民出版社1990]
Xia J H amp Wu L Q 2003 Genetic counselling and prenatal genetic diagnosis
(yichuan zixun yu chanqian zhenduan) Chinese Journal of Obstetrics and
Gynecology (zhonghua fuchanke zazhi) 838 474-477 [夏家辉邬玲仟 遗
传咨询与产前诊断《中华妇产科杂志》2003-8]
Xiangya Hospital Prenatal Diagnosis Centre 2008 The plan of national prenatal
diagnosis Training Course (guanyu juban quanguo chuanqian zhenduan peixun
ban de tongzhi) [湘雅医院产前诊断中心《关于举办全国产前诊断培训班
的通知》2008] Online httpwwwcnlmgcomcnyanxianniaspid=102
[Accessed date March 2010 ]
Xu XM Zhou YQ Luo GX Liao C Zhou M Chen PY LuJP Jia S Q
Xiao GF Shen X Li J Chen HP Xia Y Y Wen Y X Mo Q H Li W
181
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
BIBLIOGRAPHY
医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
VULNERABLE POPULATIONS AND GENETIC DISORDERS
D Li Y Y Zhuo L W Wang Z Q Chen Y J Qin C H amp Zhong M
2004 The prevalence and spectrum of α and β thalassemia in Guangdong
Province implications for the future health burden and population screening
Journal of Clinical Pathology 575 517-522
Yang D amp Xie L 2007 Couple with two Thalassemia children give birth of the
third child for saviour sibling (fuqi linsheng liangge dipin huaner wei jiu
erzi sheng disan tai) Tianfu Zaobao 14 March [杨丹谢璐夫妇连生两
个 地 贫 患 儿 为 救 儿 命 生 三 胎 《 天 府 早 报 》 2007-3-14] Online
httpsocietydbwcnsystem20070320050741941shtml [Accessed date
March 2010]
Yang H M 2002 The Human genome project and its social impact to educate the
educators In Doumlring O eds Ethics in Medical Education in China
Distinguishing Education of Ethics from Moral Preaching358Hamburg
Mitteilungen des Instituts fur Asienkunde
Yoon P W Olney R S Khoury M J Sappenfield W M Chavez G F amp Taylor
D 1997 Contribution of birth defects and genetic diseases to pediatric
hospitalizations A population-based study Archives of Pediatrics amp
Adolescent Medicine 1511096-1103
Zhang S Z 2008 Develop clinic genetic service establish medical genetic services
system with Chinese characteristics (Jianli zhongguo tese de yichuan fuwu)
Chinese Journal of Medical Genetics (Zhongguo yichuan yixue zazh)
253249-25 [张思仲开展临床遗传服务建立中国特色的遗传服务体系
《中国遗传医学杂志》 2008-3]
Zhang W F 2001 Comments on development of eugenics [yousheng xue fazan
shuping] Acta Universitatis Medicinalis Nanjing (Social Science) [Nanjing
yida xuebaoshehui kexue ban]1 54-58 [张慰丰优生学发展述评《南京
182
BIBLIOGRAPHY
医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
BIBLIOGRAPHY
医科大学学报 》（社会科学版） 2001-1]
Zhang X X 2005 Kindness from angelrsquo fund was established [Tianshi zhi en Jijin
jianli] Guangming Daili [Guangming ribao] 18 November [张忻忻 天使
之恩专项基金建立《光明日报》 2005-11-18] Online httpwwwcrcforg
cnnewsfindnewsshownewsaspnewsid=2092 [Accessed date March
2010]
Zhang Y 2006 Characteristic and subsisting condition of mentally retarded
population ndash based on a survey in Nanjing on 216 mentally retarded people
（zhizang renkou tezheng ji qi chengcun fazanndash dui Nanjing 216 ming
zhizang renkde diaocha） Journal of Nanjing College for Population
Programme Management（nanjing renkou guanli ganbu xueyuan xuebao）
220141-45 [张媛智障人口特征及其生存发展-对南京市 216 名智障人
口的调查《南京人口管理干部学院学报》 2006-22-1]
Zhang R S 1990 Healthy birth should be taken as moral concept and norm of
human beings In Wu X Z eds Medical morality theory and practice
200-205 Tianjin Peoplersquo Press [张仁思优生的道德概念和行为模式 选
自吴咸中主编 《医学的道德-理论与实践》天津人民出版社 1990]
Zheng Z 2004 Fertility desire of married women in China (Zhongguo yuling funv de
hengyu yiyuan yanjiu) Chinese Journal of Population Science (Zhongguo
renkou kexue)5 73-78 [郑直直中国育龄妇女的生育意愿研究《中国
人口科学》 2004-5]
Zhou W T 2006 Fuda Company Genetic Testing is doubtful [Fuda gongsi yichuan
jiance yi yun chongchong] Dongfang zaobao Daily 27 March [周闻天复大
公司基因检测疑云重重《东方早报》 2006 -3-27]Online
httpwwwbiooncombiologynews174976shtml [Accessed date March
2010]
183
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
VULNERABLE POPULATIONS AND GENETIC DISORDERS
184
Zhu B S Jiao CX Zhu S Dong XD Hu YY Liu YX Feng HY 2005 A
study on the incidence of Downrsquos syndrome and the interference by prenatal
screening (Tang shi zonghezheng de fasheng lv jiqi shou chanqian shaicha
ganyu de yanjiu) Chin Journal of Obstetrics amp Gynecology and Pediatrics
(zhonghua fuyou linchuang yixue zazhi)1 20-22 [朱宝生焦存仙朱姝
董旭东胡云英刘云霞冯怀英刘娟唐新华张云霞王瑞红
祝杏珍章晓梅唐氏综合症的发生概率及其受产前筛查干预的研究
《中华妇幼临床医学杂志》 2005-1]
Zhu H 1990 The scope of marriage and population quality (Lianyin fanwei yu
renkou sushi) Demographic Studies (Renkou xue ) 5 96-100 [ 朱 宏 联
姻范围与人口素质《人口学》 1990-5]
Zhu H J 2006 Thalassemia children who should not be born [bu gai chusheng de
dipin haizi] Nanfang Zhoumo 12 January [ 朱红军不该出生的地贫患儿
《南方周末》2006-1-12]
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