Monash Bioethics Review Vol. 25 No.3 41 July 2006

Prenatal diagnosis: discrimination,medicalisation and eugenicsMALCOLM PARKERSchool of MedicineUniversity of Queensland

ABSTRACTPrenatal Diagnosis (PD) includes diagnostic procedures carried outduring the antenatal period, together with Preconception Screening(PS) of prospective parents, and prenatal genetic diagnosis (POD).The purpose of all these procedures is to provide prospectiveparents with opportunities to decide whether or not to have a childwho will be diseased or disabled. Selection decisions determinewhat kinds of children are brought into existence; the ability tomake these decisions is of huge ethical significance. It raisesconnected questions about discrimination, the social status ofdisabled people and the medicalisation of disability; patientvulnerability and the power of the medical and counsellingprofessions to influence decision-making; and the conceptualisationof selection as a public health measure and even as eugenic. Inthis paper, I outline the ethical issues raised by prenatal diagnosisand describe some of the arguments which have been elaboratedin relation to the permissibility of selecting against (andoccasionally for) diseases and disabilities. I conclude that there areno good arguments against the prevention of disability through PDbut that providing adequate information for decision-making andfacilitating uncoerced individual decisions requires furtherattention.

IntroductionPrenatal diagnosis (PO) usually refers to the diagnostic

procedures carried out during the antenatal period, includingradiography, ultrasound scanning, amniocentesis, chorionic villussampling and foetoscopy, all of which are aimed at excluding geneticand other abnormalities in the developing foetus. A broaderinterpretation would include these antenatal procedures together withupstream processes involved in preconception screening (PS) ofprospective parents, which seeks either genetic or non-geneticreproductive risk factors, and prenatal genetic diagnosis (PGO), whichtests embryos for genetic defects to facilitate implantation selectiondecisions. The purpose of all these procedures is to provide prospectiveparents with opportunities to decide whether or not to have a child whowill be diseased or disabled. Such selection decisions involve activitiesincluding:

1. intra-uterine surgical or other manipulations or termination ofan affected pregnancy (at the antenatal stage)2. exclusion from IVF of an affected embryo (at the PGO stage)

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3. reproductive advice aimed at reducing harmful prenatal /antenatal conditions or contraception/ sexual abstinence (at thePS stage) .

The ability to determine what kinds of children are brought intoexistence is of huge ethical significance. It raises connected questionsabout 1. discrimination and the social status of disabled people and themedicalisation of disability; 2. patient vulnerability and the power ofthe medical and counselling professions to influence decision-making;and 3. the conceptualisation of selection as eugenic. These areas areclosely connected. Medicine aims to correct or to prevent disease anddisability, but not everyone sees inherited disability as negative, soprenatal diagnostic interventions may be perceived as discriminatoryby people affected by the conditions to be prevented. More 'tra dition a l'ethical and social debates such as the moral status of the foetus , theconstitution and status of personhood and personal identity, and thesubstitutability and replaceability of children, are intertwined withthese questions posed by the ability to make selection decisions.

It has been said that the responses of bioethicists and disabilityactivists to each others' arguments concerning these issues has been akind of civil war: a polemical rather than a critically arguedinterchange.! I hope this article falls into the latter category.

Existing law and ethical guidelines in AustraliaAntenatal procedures such as fetoscopy and corrective

intrauterine surgery are the subject of standard ethical and legalgovernance , including the requirements for maternal consent, adequateinformation disclosure for decision-making, and clinico-legal standardsof care. These procedures are relatively uncontroversial in contrast toother prenatal diagnostic activities because they are analogous tostandard medical treatments, aimed at removing or alleviating disease .Nevertheless , they also prevent the birth of disabled infants, or reducethe measure of their disability, and so are also analogous in thisrespect to preconception and PGD decisions. The termination ofpregnancies of disabled fetuses is the subject of the highly variableabortion laws of the Australian states and territories- and of continuingethical debate, but this is not the focus of this article.

In relation to the areas to be considered here, there is little in theway of specific legislative governance. Australia is replete with anti­discrimination legislation designed to protect existing people, but thisdoes not encompass the perceived discrimination which some disabledpeople feel in response to the prevention of people like them being born.Nor does public health legislation contemplate these issues, as indeedits purpose is to prevent disease and disability. Likewise, geneticscreening and counselling are conventionally seen to be in service toaccepted values including health , choice and prevention, and so havenot been the subject of specific legal scrutiny.

Only three Australian states have enacted legislation governing

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artificial reproductive technclogy. s but the areas of concern of thisarticle are rarely mentioned in this legislation. Victoria's InfertilityTreatment Act 1995 makes sex selection a criminal offence, exceptwhere it is necessary to avoid the risk of transmission of a sex-linkedgenetic abnormality or a disease to the child." Western Australia'sHuman Reproductive Technology Act 1991 5 prohibited PGD until it wasamended in 2004. 6

The National Health and Medical Research Council's 'EthicalGuidelines on the Use of Assisted Reproductive Technology in ClinicalPractice and Research'7 state that admission to life should not beconditional upon a child being a particular sex, and that pendingfurther community discussion, sex selection must not be undertakenexcept to reduce the risk of transmission of a serious geneticcondition. 8 The guidelines proscribe the use of PGD to preventconditions which do not seriously harm the child or to positively selectfor a genetic defect or disability." They concede that what counts asserious is controversial, that there are different conceptions ofdisability, and that selecting against some forms of abnormality maythreaten the status and equality of opportunity of people who have thatform of abnormality. 10 These concessions, however, are made in thecontext of the statement that 'PGD is currently used to detect seriousgenetic conditions, to improve ART outcomes and, in rarecircumstances, to select an embryo with compatible tissue for asibling,' I I that is to say that PGD is one of the accepted means ofpreventing serious disability, or contributing to correcting one in anexisting person.

A similar assumption is made in the Prenatal Diagnosis Policy ofthe Human Genetics Society of Australia. Its first recommendationstates 'The increasing indications for prenatal diagnosis makes itnecessary to have a specialised team for prenatal diagnosis for birthdefects and genetic diseases. '1 2 The terminology employed here ispatently medical and preventive. The remainder of the policy isconcerned with technical standards, counselling and communicationwith patients.

In summary, the general thrust of existing legislation andguidelines is that PO is acceptable for the prevention of seriousdisabilities.

DiscriminationPO aims to prevent the birth of children with disabilities , so it is

not surprising that some disabled people infer from its availability thatsociety generally considers that they ought not to have been born. Theyconsider that the medical profession unreasonably considers disabilityas an unacceptable loss of quality of life , or even as a tragedy. 13 14 POis said to reinforce the message of the medical model that disability is aproblem. Selection against a disabled child is said to mistakenlyassume that the child will fail to fulfil the normal expectations of theparents. 15 It is alleged that there has been insufficient research of the

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disabled population concerning their attitudes. w and that consent toPO and subsequent procedures is insufficiently informed in theabsence of clear indications of the status of the lives of people withdisabilities and their families . PO, and particularly the newer geneticscreening technologies, are seen as exclusionary and discriminatory,because those with defective genes and resulting disabilities are denieda moral status equal to the able-bodied, evidenced by the fact thatthere exists an aim in society to eliminate disabled individuals ratherthan accommodate them.!? in part because the status of a person witha disability is considersed to be undesirable and burdensome. However,not all limitations are seen as losses, and not all disabled people believethat they would benefit from being treated. 18

This group of claims and considerations constitute an argumentknown as the expressivist objection, which states that PO and otherinterventions to prevent disability express negative judgments aboutthe disabled and the value of their lives and that such expression isdiscriminatory or unjust. This objection has been countered by anumber of bioethicists. Buchanan and colleagues point out thatpreventing disability through PO does not imply a belief that the lives ofthe disabled are not worth living,"? and the moral permissibility ofavoiding bringing into existence a disabled person does not imply theimpermissibility of so doing. Related to this is the fact that one mightthink that it is unduly burdensome to conceive and have a disabledchild does not imply that one thinks this is the case for everyone else .20

Moreover, the desire not to have a disabled child need not beexpressing any judgement about the value of the child 's life (to itselfand others), but rather expresses other contingent considerations. It isthe disability itself, not the person with it , that is disvalued.v' Gillamargues that, if we accept that the value of fetal life is significantly lowerthan that of children and adults, then we can escape the accusation ofdiscrimination against existing people. However, selection againstdisability still expresses a judgement about quality of life which will notaccord with the judgements of many disabled people. This means thatthe expressivist objection amounts to an objection to being offendedrather than to being discriminated against.v- Being offensive, of course,is at most marginally non-ethical.P but social models of disabilitystrongly suggest that disabled people are more than merely offended byPO , they are oppressed by it. 24

In the interests of depolemicising the debate, Silvers hassuggested that disability advocates should concede that preventivemedical interventions do not express bias against disabled people,because this would imply they advocate rejecting all treatment fordisabling conditions. However, this argument can be seen as flawedbecause of the difference between acquired conditions and disabilitieswhich are inherited or congenital. According to Edwards, the coherenceof the expressivist objection depends on accepting that disabilities canbe, at least partly, identity constituting. w This is to make a distinctionbetween being disabled, which many disabled people do not considerbad, and becoming disabled, having previously been able, which most

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people, including many or perhaps most disabled people, wouldconsider bad. 26 Nevertheless , Edwards also rejects the strengthenedobjection, on the basis of the reductio that would prevent existingpeople with disabilities from having the disabilities removed since both'removing' disabilities and preventing people with disabilities fromcoming into existence would express negative judgement about thedisabled. Conversely, if a distinction is to be made between beingdisabled and becoming disabled, such that the former is neutralwhereas the latter is bad, it follows that intentionally bringing adisabled child into existence is permissible.s?

Even if discrimination does occur as a result of, or in the form of,PO there is the view that this is outweighed by the advantages of PO, 2829 and the disadvantages of prohibiting it .3o The advantages involve thebenefits to families of avoiding the burdens that come with havingaffected children, that is to say, the value of reproductive autonomy.Another way of presenting this argument is to say that PO reflects ageneral social and medical consensus on the positive value ofpreventing disease and disability, and that while this does notconstitute an intentional or even unintentional disvaluing of peoplewith disabilities , it clearly does amount to a disvaluing of disabilities .3 1

However, the idea that disability is socially constructed may yetgive air to the expressivist objection. How robust is this idea? While themedical model sees disability as a restriction physically imposed by animpairment, such as a defective organ or system, some disabilityscholars see disability as caused by social oppression anddiscrimination against the impairment.P? According to Oliver, this isbased in the combination of the rise of capitalism (which required able­bodied people to provide labour, and so demarcated those unable toparticipate as dis-abled and dependent) and the increase in power ofthe medical profession (which exerted increasing social control throughits powers to define, label and prescribel. s- However, while the puresocial model appears to deny any significant link between impairmentand disability, disability would still remain in the absence ofoppression. As Wilkinson states,

Generally speaking, there is nothing wrong with assigning anegative value to functional impairment (and a positive value toits absence) and hence nothing wrong with assigning a negativevalue to the functional impairment aspects of disability.34

This allows that in many cases, discrimination occurs as a result ofdisability, but this is insufficient to support the expressivist objectionto PO as being discriminatory in principle. Moreover, rejecting the powerof society and the medical profession to define, label and prescribe, atleast to some extent, may result in another reductio. The rejection of allreference to normal and/or abnormal functioning, in service to the ideathat disability is not in the nature of things but is a social construct,would make the determination of support for those with disabilitieschaotic, and this is inconsistent with the practical aims of disabilityadvocacy groups.35 Furthermore, as Jeff McMahan points out, ifdisabilities were neutral traits rather than intrinsically bad things to

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have, then it should follow that the life of someone who had multipledisabilities would be no worse than that of anyone else, if they could beaccommodated by appropriate social responses .w But few would agreewith this.

A less than absolute social model would claim that it is wrong toassume that the only way, or the preferable way, to prevent disabilitiesis to prevent impairments, since changing the social environment canprevent an impairment from becoming a disability. F The issue here, ofcourse, is a contingent one. It is unrealistic to expect the completeaccommodation of disability through modification of the socialenvironment, no matter which culture's dominant cooperativeframework is being considered.w So the debate here turns to what isthe reasonable balance between the inclusion of the disabled in thedominant framework and the interests of those who are not disabledand are affected by this inclusion.

For those who regard the embryo and the fetus as no less morallyconsiderable than the child or adult human being, no kind of PO isacceptable, except PS. The implication of this position is that allchildren should be unconditionally accepted, whatever their geneticmake-up. PO allegedly gives mixed messages to parents , since they areexpected to show unconditional commitment to their children onceborn, but to take a different stance prenatally .e? But this is surely thepoint. We know in fact that most parents who wished their child to behealthy and not disabled, but who have a disabled child, do love thechild unconditionally. There is no confusion here, no incompatibility ofpositions . It depends on our ability to distinguish the general and theparticular. We usually have a hopeful view about what lies ahead ,including the health of our children, whoever they may be . When thingsdo not work out as we wished , the fact that we cherish the disabledchild and that our lives are enriched by her life has no implications forthe appropriateness of our prospective desire.

The counter to this , of course, is that there is no escaping thecrux of the expressivist objection which is that disabled people , just asa result of these prospective desires , constitute a class of people ofwhom it is considered that they 'shou ld never have lived'r'? However,this avoids the tremendous contingency of the existence of everyone,and the specific contingencies of the lives of many people who are notdisabled. For example, those who are aware that their parents hadhoped and planned for a child of the opposite sex (even knowing whatname they wou ld have given the prefe rred child) constitute anotherclass of those who 'should never have lived ', as do those who wereconceived by mistake. While all those who 'sh ou ld never have lived ' arenot now living lives which were considered not worth living prior tothem being lived , they are th e subjects of lives which were not the firstchoice of their parents . There is a significant difference betweenactually existing and being a potential individual. In fact , no one can bea potential individual in the sense employed here. Preferring a girl , orpreferring a healthy child to a disabled child, has nothing to do withthe treatment of children once they are born.

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MedicalisationAs stated earlier, a broad interpretation of PO includes antenatal

procedures such as amniocentesis together with upstream processessuch as PGD and PS. At the nineteenth International Congress ofGenetics in Melbourne in 2003, Australian researchers announced anon-invasive test which will allow faster, cheaper .and less riskyprenatal genetic screening which can be performed early in pregnancy,opening the way to screening for all pregnant women.e' The testanalyses fetal cells obtained through conventional pap smeartechniques, and so will overcome the need to employ IVF processes asoccurs with PGD. The test will remove the need for riskier proceduresin older patients, most of which have normal results, and potentiallyuncover many abnormalities (including in younger women) whichcurrently remain undetected. The researchers are currently validatingthe test.42

A screening test for fetal abnormalities which can be performednot only by specialist services but also general practitioners, in theprocess of a pap smear-type test, will be seen by some as a rapidacceleration in the medicalisation of the experiences and choices ofpotential parents, already a significant phenomenon. The same couldbe said for developments in PS,43 although avoiding the conception ofan affected fetus tends to attract less criticism than the termination ofexisting fetuses. 44

Those who are critical of this tendency to medicalise choicesabout selecting against affected embryos or terminating affectedpregnancies would agree with Hildt that the rhetoric of reproductiveautonomy helps conceal the fact that real autonomy is more than thepossibility to choose in a situation where one option is highly favoured,not only by the inner logic of the procedure but also by society.45

There is little doubt that the provision of information, and thetime and support for decision-making, are frequently inadequate inthese difficult situations.w There may be insufficient space afforded forreflection on the future or on considering the seriousness of thedisability which lies ahead and the implications for all who will beconcerned with the child's life and welfare. Particularly in situationssuch as this, it is crucial for those making decisions to be in possessionof detailed inforrnatiorr'? about what lies ahead. Since there is evidencethat the rate of termination of affected pregnancies in Down Syndromeis lower when detailed information about the condition is provided,together with discussion with parents and families with DownSyndrome children.v' it is clear that doctors must not assume thatwhat they take to be serious disabilities automatically implies that thepregnancy should be terminated.e? Prior to this , patients also need tobe informed that there are abnormalities which may be detected (onultrasound scans for example) which differ in their prognosticsignificance, and allowed to indicate how much they wish to know. 50

The reality revealed by empirical research into informed decision-

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making does not always accord with guidelines concerning non­directive counselling, which has been the gold-standard for PD formany years. 5 1 Disability advocates, who agree that directivecounselling is unethical, go further to suggest that even non-directivecounselling can be biased by clinicians ' own choices, oftenunconscious, in developing their practices. That is to say, there can bean inbuilt directiveness in non-directive counselling. For example, thelanguage which is employed in even the most supportive environmentsremains that of diagnosis, risk, abnormality, disability and so on.These are clearly medically negative terms, and, according to critics,this shapes the encounter from the outset, so that there is structuralpressure on women confronted by such decisions, even when thingsare presented to them as open choices. Descriptions in terms ofdiagnosis , risk, abnormality and the like, automatically inviteresponses similarly phrased such as, 'treatment' and 'p reven tion'.'''Major'' congenital malformations are often portrayed as "major"reasons for termination. ' 52 Empirical research shows that the offer of avoluntary test can easily and quickly change to the test being adoptedas the standard of care by providers , being institutionally supported,and finally being presented to patients in ways which obscure the needto make a conscious choice (for example by recommending the test)even in situations where there is no treatment apart from terminationfor the problem being tested for. 53

It appears that totally non-directive counselling is an ideal whichcan never be realised, even in the settings where deliberate attemptsare made to provide it. (Nor, arguably, should it always be provided-asWertz points out, not all patient decisions are necessarily worthy ofsupport for example, parental antenatal decisions which willunnecessarily result in mental disability in the child. 54) But to whatextent is this ineliminable medical influence a bad thing? Ifmedicalisation is sometimes about a covert directiveness or collusionbetween doctors and patients, and this concerns treatment andprevention, this might be depicted as a question about eugenics .

EugenicsIf there were such a thing as non-directive counselling, it would

contradict 'the general methods and goals of public health programs. ' 55

For example, as Wertz says , we are not non-directive when it comes tosmoking. While it is true that the medicalisation of PD can exaggeratethe magnitude of the burden of disability, full support for non-directiveprenatal counselling would have to include support for all decisionswhich resulted in the birth of what many people would agree to beseriously disabled children. The problem with 'eugenics' is that it is avariably interpreted term, with opponents of PD seeing it as directlybiased and discriminatory against the disabled, while others see it in apositive light, as being the science of improving the gene pool. 56

Opponents see a eugenic slippery slope rapidly developing with theadvent of new developments such as the widespread pap smear

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screening described above, and the broadening of indications for PGDsuch as for genes which pose only a risk of disease, rather thanindicate that disease and disability in the child are certain.57 But evenprior to these developments , the whole phenomenon of genetics andgenetic screening has been perceived as the misleadingly respectablesubstitute for the old eugenics of sterilisation and elimination, withnon-directive, non-coercive, autonomy-respecting and health-relatedrhetorics smoothing the way for the realisation of the same goals. Thecritical view is that eugenics continues apace as apparently neutral yetenforced by an invisible hand, and disguised as preventive health care.

Critics make the expressivist objection to these trends , but alsoclaim that the new eugenics is characteristic of twenty-first centuryconsumerism, and the growing inability of people to acceptimperfection and disability, with statistics indicating that terminationis occurring for non-serious and correctable problems such as a cleftlip . We can see clearly here the links between eugenics as improvementand perfectibility, perceived discrimination against the disabled , andthe medicalisation of reproduction. 58 The critical view appears to becoherent: eugenics is discrimination against the disabled, whom theable-bodied wish to eliminate , and this is now enabled throughmedicine and genetics posing as beneficent preventive health care,which affects the desired outcome through an apparent, though in factshaped, reproductive autonomy.

An absolutist critical position would admit no exceptions to aprohibition on selection against disability, but few disabilityspokespeople adhere to this line, and agree that potential lives withconditions which are incompatible with any kind of life of awareness orabsence of suffering (such as anencephaly, Tay Sachs disease) canlegitimately be terminated or prevented from coming into existence. 59

But is this where a line between legitimate and illegitimate selectionshould be drawn? There is a range of views about what should count asserious , or extreme, but even in cases where a child might have areasonable life , parental interests cannot be discounted. Scottdistinguishes between features which are central to parenting aims(such as instilling moral virtues, facilitating education, andencouragement of engagement in valuable activities) from those whichdo not affect the quality of the parenting experience. He classifiescentral features as serious and those which do not affec the qualtiy ofthe parenting experience as marginal, although there is nogeneralisable dernarcation. v? It is also argued that restricting selectiondecisions to the serious end of the scale minimises the potentialreduction in human diversity which would result from a more laissezfaire approach to PD. 61 Again, the problem here appears to be the need= to develop a defensible balance between the maintenance of diversityand the prevention of serious impediments to the quality of children'sand parents ' individual and family lives .

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ConclusionsIs there a more coherent counterview to the critical view? Here is

my attempt.

The functional impairment aspects of disability are facts ofnature, and depicting them as cultural artefacts, in an effort to avoidassigning a negative value to people with them, stretches our intuitionstoo far. Against a strong consensus, the critical view is committed tothe permissibility of bringing a seriously disabled child into existence,and to not supporting the correction of existing disabilities on pain ofmaking the expressive objection to existing people. The majority ofparents who have a disabled child love the child unconditionally butthis does not mean that they did not originally desire a healthy child.Nor does the desire for a healthy child, of itself, express anything aboutdisabled people. Saying that the world would be a better place if noneof the people in it were disabled is compatible with saying that theworld would not be a better place if a particular disabled person did notexist.

Nobody should be prevented from taking advantage ofdevelopments in medicine. There will always be disagreement over whatis considered the proper scope of medical care, but people ought not becriticised from an a-contextual position for making decisions about howmuch imperfection and disability they are prepared to accept. Normsvary according to what is available in a straightforward and non­relative way.

PD aims to prevent serious disability, and this aim is generallyaccepted across medicine. Taking certain vitamins during the antenatalperiod avoids the risk of the birth of a child with spina bifida, just asterminating a pregnancy does . The critical view should condemn bothequally, but usually remains silent about the former practice.

Using language such as risk, diagnosis, and so on which is saidto routinise and medicalise selection decisions, is no different from thatwhich describes the assumptions which medicine makes moregenerally. When patients consult doctors, a society-professionalunderstanding shapes responses as treatment alternatives. There is aprima facie, inbuilt directiveness in the direction of treatment of somekind. Just as over recent decades it has taken considerable effort toestablish legal rights to refuse medical treatment in the face ofperceived medical paternalism, it will need further effort to embed suchrights in the setting of genetic and other prenatal counselling, as aresult of providing sufficient information and support for decision­making. But satisfying this requirement will leave the general structureof PD and counselling intact, facilitating the prevention of disability.

ENDNOTES

Kuczewski M and Kirschner K, 'Bioeth ics an d disability' (Special Issue) , TheoreticalMedicine, vo l. 24 , 2003, pp. 455-458.

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2 de Crespigny Wand Savulescu J , 'Abortion: time to clarify Australia's confusing

laws', Medical Journal ofAustralia, vol. 181,2004, pp. 201-203.

3 Infertility Treatment Act , 1995 (Vic), available athttp://www.austlii.edu.au/au/legis/vic/consoLact/itaI995264/ [accessed on May9, 20061 ; Reproductive Technology (Clinical Practices) Act , 1988 (SA), available athttp://www.austlii.edu.au/au/legis/sa/consoLact/rtpaI988419/ [accessed onMay 9,2006] ; Human Reproductive Technology Act, 1991 (WA) , available athttp://www.austlii.edu.au/au/legis/wa/consol_act/hrtaI991331 / [accessed onMay 9,2006]

4 Infertility Treatment Act, 1995 (Vic), section 505 Human Reproductive Technology Act , 1991 (WA), section 146 Human Reproductive Technology Amendment Act 2004 (WA) , section 11 , available

athttp://www.slp.wa.gov.au/statutes/yrbyyr.nsf/2cO 1Ofb704a430a348256865002a4868/35814caI8b71087a48256ed7000649ae?OpenDocument [accessed on May 9 ,20061

7 'The National Health and Medical Research Council's 'Ethical Guidelines on the Useof Assisted Reproductive Technology in Clinical Practice and Research', Available athttp://www7.health.gov.au/nhmrc/publications/synopses/e56syn.htm [accessedon May 9, 2006J

8 ibid. sl19 ibid. s12.210 ibid. s12 .111 ibid.12 'Prenatal Diagnosis Policy of the Human Genetics Society of Australia', Available at

http://www.hgsa.com.au/PDF/ Prenatal%20diagnosis%20policy%20C­Obs%205%20Mar2004.pdf [accessed on May 9, 2006].

13 Turnbull D, 'Sources of value and power in disability bioethics', What is this thingcalled Bioethics? 6th National Conference of the Australian Bioethics Association,University of Tasmania, Hobart, October 2-4, 1998.

14 Bridle L, 'Stories of choice: mothers of children with Down syndrome and prenataldiagnosis', What is this thing called Bioethics? 6th National Conference of theAustralian Bioethics Association, University of Tasmania, Hobart, October 2-4,1998.

15 Parens E and Asch A, 'The disability rights critique of prenatal genetic testing',(Special Supplement) , Hastings Center Report, vol. 29, no . 5, 1999, S2 .

16 Bridle, 'Stories of choice', op . cit ., .17 Buchanan A, Brock D, Daniels N and Wikler D, From Chance to Choice: Genetics

and Justice, Cambridge: Cambridge University Press, 2000, pp. 258-303.18 Silvers A, 'On the possibility and desirability of constructing a neutral conception of

disability', Theoretical Medicine , vol. 24 , 2003, pp. 471-487.19 See also Bradfield 0, 'Prena tal diagnosis - discrimination, deliverance or

democracy', Monash Bioethics Review, vol. 22, 2003, pp. 28-38.20 McMahan J, 'Cau s ing disabled people to exist an d causing people to be disabled',

Ethics, vol. 116, no. 1,2005, pp. 77-99.21 Buchanan, Brock, Daniels and Wikler, From Chance to Choice, op. cit., pp. 258­

303.22 Gillam L, 'Pren a tal diagnosis and discrimination against the disabled ', Journal of

Medical Ethics, vol. 25 , 1999, pp. 163-171 ; Scott R, 'Choosing between possiblelives: legal and ethical issues in preimplantation diagnosis', Oxford Journal ofLegalStudies . vol. 26, no. 1, 2006, p . 173.

23 Smidz D, Rational Choice and Moral Agency, Princeton: Princeton University Press,1995, pp. 25-26.

24 Newell C, 'The social nature of disability, disease and genetics: a response toGillam, Persson, Holtung, Draper and Chadwick', Journal of Medical Ethics, vol 25 ,1999, pp. 172-175.

25 Edwards S, 'Disa bility, identity and the "expres sivist objection"', Journal of MedicalEthics, vol. 30, 2004, pp. 418-420.

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26 McMahan, 'Causing disabled people to exist', op. cit., pp. 77-99.27 ibid.28 Gillam, 'Prenatal diagnosis', op . cit., pp. 163-171 ; Scott, 'Choosing between possible

lives ', op . cit., p. 173.29 Petersen TS, 'Just diagnosis? Preimplantation genetic diagnosis and injustices to

disabled people', Journal ofMedical Ethics, vol. 31, 2005, pp. 231-234.30 McMahan, 'Causing disabled people to exist', op. cit., pp. 77-99.31 Wilkinson S, 'Eugenics, embryo selection, and the Equal Value Principle ', Clinical

Ethics, vol. 1,2006, pp. 46-51.32 Terzi L, 'The social model of disability: a philosophical critique', Journal of Applied

Philosophy, vol. 21, no. 4, 2004, pp. 141-157.33 Oliver M, The Politics ofDisablement, Basingstoke: MacMillan, 1990.34 Wilkinson, 'Eugenics', op . cit., pp. 46-51.35 Terzi, 'The Social Model of Disability', op . cit ., pp. 141-157.36 McMahan, 'Causing disabled people to exist ', op. cit., pp. 77-99.37 Buchanan, Brock, Daniels and Wikler, From Chance to Choice, op . cit., pp. 258-303.38 ibid.39 Watt H, 'Preimplantation genetic diagnosis : choosing the "good enough" child',

Health Care Analysis, vol. 12, no. 1,2004, pp. 51-60.40 Solberg B, 'The concept of selection: when are you selecting? Is it discriminatory?'

International Conference on Preimplantation Genetic Diagnosis and EmbryoSelection, Reykjavik, May 28-29, 2004. Available athttp:j jwww.norden.orgjpubjvelfaerdjsocial_helsejukjTN2005591.pdf [accessedMay 11,2006] .

41 Irwin D & Findlay, 'Using single cell DNA fingerprinting to identify fetal cells seriallyenriched from pap smears', Nineteenth International Congress of Genetics,Melbourne, July 6-11,2003. Available athttp:f jwww.geneticsmedia .orgjPap_smears.htm [accessed May 13,2006] .

42 Gribbles Molecular Science, 'Isolation of Fetal Cells from Paps Smear', available athttp:j jwww.gribblesmolecular.com.jresearch.htm [accessed May 13,2006] .

43 Massie RJ, Delatycki MB and Bankier A, 'Screen ing couples for cystic fibrosiscarrier status: why are we waiting?', Medical Journal ofAustralia, vol. 183,2005, pp501-502; Parker M, Forbes K and Findlay I, 'Screening gamete donors for cysticfibrosis status', Medical Journal ofAustralia, vol. 173,2000, pp. 380-381.

44 Parker M, Forbes K and Findlay I, 'Eugenics or empowered choice? Communityissues arising from prenatal testing', Australian and New Zealand Journal ofObstetrics and Gynaecology, vol. 42, no . 1,2002, pp. 10-14.

45 Hildt E, 'Autonomy and freedom of choice in prenatal genetic diagnosis ', Medicine,Health Care and Philosophy, vol. 5, 2002, pp . 65-71.

46 See, for example, Bridle, 'Prenatal diagnosis , choice and the moral character ofparenthood', Conference on Genetics and Disability: Exploring Different Spaces,Different Futures, Brisbane, October 7,2002. Available athttp:f jwww.qai.org.aujcontentjworkshop.cfm#4 [accessed May 16, May 2006] .

47 Savulescu J, 'Liberal rationalism and medical decision-making', Bioethics, vol. 11 ,no. 2,1997, pp . 115-129.

48 Parens E & Asch A, 'The disability rights critique', op . cit. , S9 .49 Turnbull D, 'Genetic counselling: ethical mediation of eugenic futures', Futures, vol.

32 , 2000, pp. 853-865.50 de Crespigny and Savulescu, 'Abortion ', op . cit., pp. 201-203.

51 See, for example, Human Genetics Society of Australia, 'Guidelines for the Practiceof Genetic Counselling', available at http:j jwww.hgsa.com.auj , [accessed May 14 ,2006].

52 Turnbull, 'Genetic counselling', op. cit., p . 856.53 Press N and Browner C, 'Why women say yestTo prenatal diagnosis ', Social Science

and Medicine, vol. 45, no. 7, 1997, pp. 979-989.54 Wertz D, 'Eth ical and Legal Implications of the New Genetics: Issues for discussion',

Social Science and Medicine , vol. 35, no. 4 , 1992, pp. 495-505'.55 ibid.

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56 Wilkinson , 'Eu gen ics, embryo selection', op . cit., p. 47 .57 For example, the UK's Hu man Fertility and Embryology Authority has recen tly

recomme n de d tha t so me breast and bowel cancer genes be the su bject of screeni ng,eve n tho ugh there is n o guarante e that someone with th e gene will de velop thedisea se in qu estion. See BBC News , 'Em bryo checks shoul d be wide ned' available athttp :j j newsvote.bbc .co .ukjmpappsjpagetoo lsjprintjnews.bbc.co.ukj Ijhijhealthj4750341.stm (accessed 12th May 2006); Tim esonline. 'Ru ling will all ow embryos tobe screened for 'cancer genes ', availa ble ath ttp:j j www .timeson lin e.co.ukjprintFriendly j O" 1-210-2170864-2 10, 00 .htm l[accessed May 12, 20061.

58 Chandler M a n d Smith A, 'Prenatal screeni ng an d wom en's perception of in fantdis ability : a 'Soph ie's Choice" for every mother ', Nursing Inquiry, vol. 5 , 1998 , pp.7 1-7 6.

59 Scott R, 'Choosing bet ween Possible Lives ', op . cit., pp. 153-178 .60 ibid . pp. 167-1 69 .6 1 Fitzpatrick T, 'Before the cradle: New Genetics , Biop olicy and Regulated Eugenics ',

Journal of Social Policy , vol. 30 , n o. 4 , 200 1, pp. 607-608.