“如果亲属继承了基因，他们就应该继承相关数据。” 将家庭纳入生物伦理学讨论的范畴。
"If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.
作者信息
Gordon Deborah R, Koenig Barbara A
机构信息
Department of Humanities and Social Sciences, University of California, San Francisco, California, USA.
Program in Bioethics, University of California, San Francisco, California, USA.
出版信息
New Genet Soc. 2022;41(1):23-46. doi: 10.1080/14636778.2021.2007065. Epub 2021 Dec 13.
Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual's genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant's genetic results, since prevailing U.S. practices treat these as private, controlled by the individual. These individual-based ethics contrast with the family-based ethics- in which genetic information, privacy, and autonomy are considered to be familial- endorsed in UK genomic medicine and by participants in a multi-method study of U.S. research participants presented here. The dilemma reflects a conflict between U.S. legal and ethical frameworks that privilege "the individual" and exclude "the family" versus actual human genetics that are simultaneously individual familial. Can human genetics succeed in challenging bioethics' hegemonic individualism to recognize and place the family at the center of the room where bioethics happens?
有血缘关系的亲属共享多达一半的遗传物质，包括对疾病的易感性。因此，在每个人的基因组中鉴定出的具有临床意义的变异可能会涉及数量呈指数级增长的有潜在风险的亲属。这再次引发了关于家族获取研究参与者基因结果的困境，因为美国目前的做法将这些结果视为个人隐私，由个人控制。这些基于个人的伦理观念与基于家族的伦理观念形成对比——在英国基因组医学以及本文所呈现的一项针对美国研究参与者的多方法研究中，参与者所认可的基于家族的伦理观念认为，基因信息、隐私和自主权是家族性的。这种困境反映了美国法律和伦理框架之间的冲突，前者赋予“个人”特权并排除“家族”，而实际的人类遗传学则同时涉及个人和家族。人类遗传学能否成功挑战生物伦理学的霸权个人主义，从而认识到家族并将其置于生物伦理学发生的核心位置呢？
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