Confucian Conception of Genetic Privacy and Public Interest and Its Application to Biobank

1. Confucian Conception of Genetic Privacy and Public Interest and Its Application to Biobank Yen-Ling Kuo Graduate Institute of Philosophy National Central University Chungli, Taiwan ROC

2. Introduction • The rapid development of genetic research demands more and larger genetic information and thus the development of biobanks. The connection of personal information such as medical record, work and living environment, states of health and disease with genetic information leads to more complex dilemmas of privacy and public benefits.

3. This paper investigate the privacy problem related to biobanking and introduces the Confucian familism in privacy in comparison with the western individualistic point of view.

4. Definition of Privacy • Privacy: In 1890, Sammuel D. Warren and Louis D. Brandies adopting Judge Cooley’s proposal that privacy is “ the right to be let alone”[1] Graeme Laurie distinguishes privacy into: 1. Spatial Privacy 2. Information Privacy[2] [1] S.D. Warren & L.D. Brandeis, 4 Harvard Law Review ‘The right to privacy’, (1890), p. 193. [2] Graeme Laurie, Genetic Privacy：A Challenge to Medico-Legal Norms, (UK: Cambridge University Press, 2002), p. 6.

5. Definition of Genetic Privacy • Genetic Privacy: Not a wholly new concept but employing a similar concept of privacy to genetics. It is separated into four different categories as follows [1] : [1] Anita L. Allen，“Genetic Privacy: Emerging Concepts and Values”，in Mark A. Rothstein (ed.)，Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era，(CT: Yale University Press，1997)， p.33、p.41、pp.45-50。

6. 1.Informational genetic privacy: Genetic privacy frequently means informational genetic privacy－ confidentiality, secrecy, anonymity, and fair information practices. There is a limited access to personal information, and it also may require the patient or their health care providers to disclose information to the third parties.

7. 2. Physical genetic privacy: Genetic research has to have one’s informed consent, all genetics service, including screening, counseling, and testing, should be voluntary. 3.Decisional genetic privacy: It is one’s right to determine to have genetic screening or interference (or therapy) 4.Proprietary genetic privacy: Commercial deployment of genetic information (or DNA) must have personal authorization, and genetic property right be protected.

8. Genetic Privacy in Biobanking • Limits of Privacy: An analysis of Tarasoff Case[1] 1.In the conflict of privacy with vital public interest, the protection of other’s vital interest, right to life, is more important than privacy ; 2.The infringement of privacy achieved the purpose of the protection of a possible victim from assault; [1] This analysis is an employment of the balancing method proposed by Tom L.Beauchamp and James F.Childress in their justly famous book, Principles of Biomedical Ethics, (NY: Oxford University Press, 2001), 5th edition, pp. 19-20.

9. 3.The infringement of privacy in this case could not be avoided; 4.The infringement of privacy is minimum if only the possible victim were informed; 5.The negative effect would be minimized if only the possible victim were informed; 6.Such judgment is impartial to all parties.

10. In genetic privacy, since the genetic information is shared within a family, the right of privacy could not be exempted from its ethnic characteristics. • Though disclosure may bring risk to privacy, public interest could be obtained through informed consent.

11. Since genetic privacy is shared by family members, the family as a whole should be the subject of the right. • Members of the family should employ the right of privacy in respect of the autonomy of each other. • Biobank serves the important interests of the nation and ethnic group, we have to consider proper patterns of protection, prevent possible harm and risk.

12. Individualistic management of Biobank is unsatisfactory • Example: UK Biobank: It takes the individualistic model in obtaining samples and personal consent. But, this does not quite match the employment of the samples for research;

13. For biobank to fulfill its function for the public benefit, it means that the biobank could help to develop genetic medicine or provide information for cohort studies to discover the relation of genetic and environment, cures for genetic diseases. Such product could not be limited to the individual, and it must relate to ethnic groups.

14. The collection of personal data could not eliminate the ethnicity of genetic information and could not limit the use of such information and researchers could use it for ethnic studies, to tract the information of the family, the progeny, and brings the risk of disrupting the genetic privacy. • The individualistic model is not appropriate for the protection of the right of privacy of the family.

15. Confucian familism on the Privacy and Public Benefit of Biobank • Family is taken as the unit in genetic information collection. The information are transparent within the family. The participation of biobanking needs the respect for the other family member, and the kind of consent is a family consent. It is based upon Ruiping Fan’s idea of family autonomy.

16. Why we stay at the level of family consent without going all the way for ethnic consent: Though many of the genetic research need ethnic genetic information, but the group involved is often very vague and extenuative. And, if confidentiality is properly looked after, the privacy of the individuals of the group would not be affected too much. For intimate family members, the result would be much more direct and obvious. Confidentiality could not block the easy identification of the family members and their privacy. Thus family consent is needed.

17. Furthermore, family consent is much more easy to work than ethnic consent and it is one of the reason that Confucianism opts for family consent instead of the two extremes of individual or ethnic consent, so as to give a more reasonable and full protection for genetic privacy.

18. If there is no consensus in the family, would there be infringement of personal autonomy to limit a family member for participation?

19. The common property of genetic information reflects the intimacy of the family members and the reason that Confucianism lays great emphasis on family affinity.

20. Confucianism regards privacy as a shared privacy among the family members and each has the duty to protect this intimacy and privacy. The proper respect of each one’s autonomy is the best way to resolve the conflict of genetic privacy between family members[1]。 [1] Cf. Shui Chuen Lee, Confucian Bioethics (Taipei: Legion Month, 1999), pp.148-151.

21. Conclusion • The genetic information that a biobank collects is not a property owned by the donor alone, It must involve the private information of other family members. • Biobank is mainly a centre for the provision of personal bio-information to facilitate long-term research on the relation of genetic constitution and environment. Thus, it is easier to obtain result by concentration on specific ethnic groups.

22. Though privacy is a right, it may have to yield in conflict with vital public benefits. However, biobank needs to provide proper protection for such information and a reasonable authorization by the individual as well as his or her family.

23. Thank you for your Attention • End