论基因研究中的族群权利保护

The Protection of Group Rights in the Genetic Research on Human Subjects

在不断发展的人类基因研究中,由于基因的遗传相关性,对受试者个人基因信息的披露可能给整个族群带来影响,乃至导致族群的污名化,为此应加强族群权利的保护。族群的概念必须首先加以厘定,关键是在个案中甄别是否有应受保护而区别于个人权利的群体利益存在。在基因研究背景下,族群权利是一个包含基因隐私权、族群名誉权、自我决定权与惠益分享权等在内的权利束。对基因研究作出族群同意是族群权利的重要实现机制,族群同意的具体规则尚待探索。

With the continuous development of human genetic research,it is urgent to protect group rights as some genetic features are shared by all members in a group,and the disclosure of individual genetic information may have influences on the whole group,which may even lead to ethnic stigma.To strengthen the protection of ethnic group,the ethnic group as a concept must be defined clearly.The key is to find out if there is a clear boundary of group interests that are different from that of individuals and need to be protected collectively.In the context of genetic research,group rights are a bundle of rights,including the right of genetic privacy,ethnic reputation,self-determination and benefit-sharing.Group rights are realized mainly by group consent for genetic research,but the specific rules of group consent are yet to be explored.