The Rights Design and Institution The Rights Design and Institution

ArrangementArrangement of Genetic Testing Technologyof Genetic Testing Technology

――with Analysis on Legalization of Chinese ――with Analysis on Legalization of Chinese BioethicsBioethics in Bioethics Globalization in Bioethics Globalization

Panelist： JIAO, Hongtao; LUO, Min Institute of Science and Technology Law, Law

School, Huazhong University of Science and Technology,

China

Only understanding applied science is insufficient by itself. Care for people itself , ought to be main goal that all technologies struggle all the time.

――Einstein

IntroductionIntroduction

CatalogueCatalogue Ⅰ A Brief Introduction to Genetic Testing TechnologyⅡ The Value-Laden and Moral Reflection upon Genetic

Testing TechnologyⅢ The Ethical Norms of Genetic Testing TechnologyⅣ The Ethics and Laws of Genetic Testing TechnologyⅤ The Ethical Legalization of Genetic Testing TechnologyⅥ The International Trend of Genetic Testing Technology

Ethical LegalizationⅦ The Ethical Legalization of Genetic Testing

Technology in ChinaⅧ The Problems Brought by Life Sciences Technology

Revolution in ChinaⅨ The Solvent of Problems: the Practical Reason of Law

Ⅰ Ⅰ A Brief Introduction to A Brief Introduction to Genetic Testing TechnologyGenetic Testing Technology

Genetic testing technology is defined as “the test to discover the existence, lack and change process of some specific gene or chromosome, including the indirect test of gene products or other specific metabolites which can display the variation of some gene.

――In Clause 12, Article 2 of

The International Declaration on Human Genetic Data

Pluralistic genetic testing is one of the most important tools of genetic medical science in the 21st century, which is promoting the reinvigoration and rebirth of medical diagnosis, and it will play a decisive role in individualized medical treatment.

Ⅱ Ⅱ The Value-Laden and Moral The Value-Laden and Moral Reflection upon Genetic Testing Reflection upon Genetic Testing

TechnologyTechnology As a biotechnology, genetic testing technology

should be also laden with values. Now that technology is not neutral in value but laden with value, we can no longer consider technology just as a tool, but should give it a further moral reflection.

The chaos of social order may be caused by genetic testing technology :

• The Mental Serenity of Human cannot be Guaranteed

• Common Ethics will be Violated• Individual Dignity will be Contemned • Follow with Genetic Discrimination

Ⅲ Ⅲ The Ethical Norms of The Ethical Norms of Genetic Testing TechnologyGenetic Testing Technology

• The Necessity of Ethical Norms• The Ethical Institution of Genetic

Testing Technology

Ⅳ Ⅳ The Ethics and Laws of The Ethics and Laws of Genetic Testing TechnologyGenetic Testing Technology

• Ethics and Laws are Mutually Related

• Ethics and Law Can’t be Divided from Each Other

Ⅴ Ⅴ The Ethical Legalization of The Ethical Legalization of Genetic Testing TechnologyGenetic Testing Technology

• The Ethics of Genetic Testing Technology ――Bioethics Principles of Biomedical Ethics written by Tom L. Beauchamp and James F. Childress four fundamental principles of bioethics: autonomy beneficence non-maleficence justice

• Bioethics and Human Rights• The Legalization of Bioethics

Ⅵ Ⅵ The International Trend of Genetic Testing The International Trend of Genetic Testing Technology Ethical LegalizationTechnology Ethical Legalization

The Rights Design and Institution Arrangement of Genetic Testing The Rights Design and Institution Arrangement of Genetic Testing

TechnologyTechnology

Right to informed consent of genes

Base ofbio-ethics

Autonomy and beneficence

Three elements of right Regulations of international documents

Subject

Accord with HUGO Ethics Committee: Statement on the Principled Conduct of Genetic Research, Section 2 Article 8 of The International Declaration on Human Genetic Data and Section3 Article 6 of Universe Declaration on Bioethical Norms: the subject of right to informed consent can be at the individual level, family level and community level. Based on individual’s informed consent, act for consenting is allowed.

Object

Accord with Article 1 of The International Declaration on Human Genetic Data: the object of right to informed consent include the action collect, dispose, use and save human genetic information, human protein group information and pick-up the biology sample from which such information is obtained.

Contents Includes right to informed beforehand, right to consent,

right to decide whether to know research result or not, right to withdraw consent, right to inquire genes and right to request for compensation.

Right togenetic privacy

Base of bioethics

Beneficence

Threeelements of right

Regulations of international documents

Subject Accord with article 6 of The Universal Declaration on the Human

Genome and Human rights, Section 1, Article 14 of The International Declaration on Human Genetic Data and Article 9 of Universe Declaration on Bioethical Norms ： the subjects of right to genetic privacy include: testee, consanguine relatives and other relevant groups.

Object

Accord with Article 14 of The International Declaration on Human Genetic Data ： the objects of right to genetic privacy include: the individual privacy that take part in using genetic information, human protein group information and biologic sample research, recognizable human genetic information of individuals, families and relevant groups, the secrecy of biologic sample.

Contents

Article 14 of The International Declaration on Human Genetic Data and Article 9 of Universe Declaration on Bioethical Norms regulated the contents of right to genetic privacy. Article 9 of The Universal Declaration on the Human Genome and Human rights and Section 2, Article 14 of The International Declaration on Human Genetic Data regulated the exceptional circumstance of right to genetic privacy. Article 8 of The Universal Declaration on the Human Genome and Human rights regulated right to request compensation of trespassing genetic privacy.

Ⅶ Ⅶ The Ethical Legalization of The Ethical Legalization of Genetic Testing Technology in Genetic Testing Technology in

ChinaChina

• Chinese Government• National Research Institutions• The Present Situation of Legislation

in China

Ⅷ Ⅷ The Problems Brought by Life The Problems Brought by Life Sciences Technology Revolution in Sciences Technology Revolution in

ChinaChina ⑴ The Contradiction between Industrial Chain Globalization of Biological industries and the Interests of China ⑵ The Contradiction between Unification of Bioethics Views and Cultural Diversity

⑶ The Contradiction between Unity and Diversity of Fundamental Human Rights ⑷ The Contradiction between Human Rights and Scientific Research Freedom ⑸ The Contradiction between Localization and Globalization of Laws ⑹ The Contradiction between a Good Developing Prospect of Biological Industries and Lagged Effect of Bioethics and Laws

Ⅸ Ⅸ The Solvent of Problems: The Solvent of Problems: the Practical Reason of Lawthe Practical Reason of Law

• The Interpretation of Legal Practical Reason

• The Solvent of Bioethics Problem(1) Strengthen the Independent R.N.D. Capacity of

Biological Industries (2) Unveil and Cross-examine the Hidden Factors of

Ethics and Value (3) Establish a New Social Ethics and Value System(4) Legalize Bioethics Norms(5) Introduce a Flexible Ethics Restriction Institution

Conclusion Conclusion

Without morality, even animals lack the means to live on. But nowadays, human beings don’t know should what morality to abide by.

――Robert Musil

Realize the terminal goodness of human beings

――benefit human beings and their living

environment

Our AimOur Aim