Human Genetics Studies: The Case for Group Rights
34 Pages Posted: 24 Aug 2006
With the importance of genetic information has come bitter battles over its control. In these battles, some principles have emerged that are beyond dispute. The ability of individuals to control the disposition and genetic testing of their own biological materials is (as a matter of theory, at least) beyond question. No one would argue today that an individual could be subject to genetic testing for studies against her will, or that biological samples obtained from individuals under specified conditions could be simply deemed "free" of such conditions by researchers. Although difficult problems remain in the interpretation of research agreements, the circumstances under which "informed consent" was given, and so on, the general principle that individuals have a right to control the genetic testing of their own biological materials is assumed by ethicists, medical researchers, and others. It is also assumed (through contract, property, and privacy theories) by law.
Far more contested is the idea of group control over the collection, testing, and disposition of the biological materials of its members. When - for instance - isolated indigenous populations are chosen for genetic study in an effort to "grasp ... human origins, evolution, prehistory, and potential," or patented cell lines are made from blood samples collected from indigenous peoples, affected groups have demanded control of such projects citing an invasion of sovereignty, lack of informed consent, and moral grounds. However, group demands for effective control or "veto power" have been met with skepticism or outright rejection by many researchers, ethicists, and legal scholars. The stated reasons for this response are multifarious, and include representational conundrums (who is "the group"?), practical problems (how do we handle "dispersed communities"?), ethical questions, and resource issues. In addition, when the demanding groups are indigenous peoples, acknowledging group rights implicates larger debates and demands of indigenous peoples for rights to governance, territorial integrity, cultural autonomy, and other incidents of self-determination.
In this essay, I address the following question. To what extent are our responses to claims of group rights hampered by our bringing to the table (consciously or unconsciously) a model which is structured to acknowledge only individual concerns? Put another way, to what extent are our objections to group rights in this context a product of our inability (or refusal) to imagine the idea of group rights, rather than the product of truly substantive concerns? I argue that the notion that group control of genetic testing and use is incompatible with contemporary notions of legal rights is greatly exaggerated. Group control is, in fact, a natural implementation of many existing legal theories and is viewed in many contexts as an enforceable legal right. Although there may be valid objections to particular instances of group control of genetic testing and use, there is no generally valid objection, as a matter of theory, to the implementation of this right. Wholesale objections are, thus, more a product of unexamined bias than considered reasons for the rejection of this right.
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