“如果亲属遗传了基因,他们就应该继承数据。”把家人带进发生生物伦理的房间。

IF 1.3 4区 医学 Q4 BIOTECHNOLOGY & APPLIED MICROBIOLOGY
Deborah R Gordon, Barbara A Koenig
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引用次数: 4

摘要

生物亲属共享多达一半的遗传物质,包括对疾病的易感性。因此,在每个个体基因组中发现的具有临床意义的变异可能意味着具有潜在风险的亲属的指数数量。这重新引发了家庭获取研究参与者基因结果的困境,因为美国普遍的做法是将这些视为私人的,由个人控制。这些以个人为基础的伦理与以家庭为基础的伦理形成对比。在家庭为基础的伦理中,遗传信息、隐私和自主权被认为是家族性的,这在英国基因组医学中得到了认可,在一项针对美国研究参与者的多方法研究中也得到了认可。这一困境反映了美国法律和道德框架之间的冲突,即尊重“个人”而排斥“家庭”,而实际的人类基因则同时是个人和家族的。人类遗传学能否成功地挑战生命伦理学的霸权个人主义,承认并将家庭置于生命伦理学发生的中心位置?
本文章由计算机程序翻译,如有差异,请以英文原文为准。
"If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.

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 and 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?

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来源期刊
New Genetics and Society
New Genetics and Society 生物-生物工程与应用微生物
CiteScore
4.30
自引率
16.70%
发文量
19
审稿时长
>12 weeks
期刊介绍: New Genetics and Society: Critical Studies of Contemporary Biosciences is a world-leading journal which: -Provides a focus for interdisciplinary and multi-disciplinary, leading-edge social science research on the new genetics and related biosciences; -Publishes theoretical and empirical contributions reflecting its multi-faceted development; -Provides an international platform for critical reflection and debate; -Is an invaluable research resource for the many related professions, including health, medicine and the law, wishing to keep abreast of fast changing developments in contemporary biosciences. New Genetics and Society publishes papers on the social aspects of the new genetics (widely defined), including gene editing, genomics, proteomics, epigenetics and systems biology; and the rapidly developing biosciences such as biomedical and reproductive therapies and technologies, xenotransplantation, stem cell research and neuroscience. Our focus is on developing a better understanding of the social, legal, ethical and policy aspects, including their local and global management and organisation.
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