| Summary: | 碩士 === 國立陽明大學 === 公共衛生研究所 === 99 === Following the development of Human Genome Project, genomic medicine has become the new paradigm of biomedical research. Some researchers believe that, with their more remote habitation and more frequent inter-marriage, indigenous people may have more unique genes that makes them valuable subjects for research. However, genetic research may also lead to more risk of social stigma and discrimination for indigenous peoples as a group. This will aggravate their already vulnerable position in the economy, employment, health, and lack of medical resources, which in turn make them more vulnerable against intivation to participate in biomedical researches. In the event of genetic research revealing group harm, however, this discovery may further set indigenous peoples in an even more vulnearble situation. Thus, it is critical to examine whether indeginous people has collective rights and what form of protection is adequate.
Nevertheless, because bioethics originate from the protection for individual rights, groups or population has not enjoyed enough attention and protection in the past. More specifically, when the principle of Respect of Autonomy is emphasized, do indigenous peoples also have a right of self-determination in genetic study? Furthermore, which model of participating will provide the better mechanism to facilitate indigenous peoples’ self-determination? Moreover, if there happened to be a conflict between community determination and individual autonomy, which should prevail? Does our legal system provide enough protection? These are the core issues in this thesis.
Briefly summarized, this paper first argues that indigenous peoples should have a right to self-determination in genetic research. Secondly, it argues that in the mechanism for group consent or participation in biomedical research, although community consent limits the researchers and also restricts individuals from participating in genetic research, it is nonetheless necessary to protect indegenous from group harm. However, to reconcile the conflict between collective will and individual autonomy, group consent should be subjected to limitations. If a group member is facing illness that threatens life and health, or the restrictions could seriously jeopardize one’s Fundamental Rights, then the group consent should not veto the individual’s right to participate in a research. Finally, according to the foregoing analysis, this paper makes policy suggestion against current laws to better protect indigenous people when they consider to participate in genetic research.
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