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The Rights Design and Institution Arrangement of Genetic Testing Technology ――with Analysis on Legalization of Chinese Bioethics in Bioethics Globalization Panelist:JIAO, Hongtao; LUO, Min Institute of Science and Technology Law, Law School, Huazhong University of Science and Technology, China Introduction 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 Catalogue Ⅰ Ⅱ Ⅲ Ⅳ Ⅴ Ⅵ Ⅶ Ⅷ Ⅸ A Brief Introduction to Genetic Testing Technology The Value-Laden and Moral Reflection upon Genetic Testing Technology The Ethical Norms of Genetic Testing Technology The Ethics and Laws of Genetic Testing Technology The Ethical Legalization of Genetic Testing Technology The International Trend of Genetic Testing Technology Ethical Legalization The Ethical Legalization of Genetic Testing Technology in China The Problems Brought by Life Sciences Technology Revolution in China The Solvent of Problems: the Practical Reason of Law Ⅰ A Brief Introduction to Genetic 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 The Value-Laden and Moral Reflection upon Genetic Testing Technology 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 The Ethical Norms of Genetic Testing Technology • • The Necessity of Ethical Norms The Ethical Institution of Genetic Testing Technology Ⅳ The Ethics and Laws of Genetic Testing Technology • • Ethics and Laws are Mutually Related Ethics and Law Can’t be Divided from Each Other Ⅴ The Ethical Legalization of Genetic 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 The International Trend of Genetic Testing Technology Ethical Legalization The Rights Design and Institution Arrangement of Genetic Testing Technology Base of bio-ethics Three elements of right Autonomy and beneficence 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. Right to informed consent of genes 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. Base of bioethics Three elements of right Subject Right to genetic privacy Object Contents Beneficence Regulations of international documents 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. 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. 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 The Ethical Legalization of Genetic Testing Technology in China • • • Chinese Government National Research Institutions The Present Situation of Legislation in China Ⅷ The Problems Brought by Life Sciences Technology Revolution in China 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 The Solvent of Problems: the 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 Unveil and Cross-examine the Hidden Factors of Ethics and Value Establish a New Social Ethics and Value System Legalize Bioethics Norms Introduce a Flexible Ethics Restriction Institution (2) (3) (4) (5) 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 Our Aim Realize the terminal goodness of human beings ――benefit human beings and their living environment