与亲属分享基因组研究结果的国际政策：平衡隐私与获取的方法。
International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with Access.
作者信息
Branum Rebecca, Wolf Susan M
机构信息
Policy director at the Minnesota State College Student Association and previously served as a Research Associate at the University of Minnesota's Consortium on Law and Values in Health, Environment & the Life Sciences.
McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; Faculty member, Center for Bioethics; and Chair, Consortium on Law and Values in Health, Environment & the Life Sciences at the University of Minnesota. She is one of three Principal Investigators on NIH/NCI/NHGRI grant 1-R01-CA154517 on return of genomic results to family members, including after the death of the proband.
出版信息
J Law Med Ethics. 2015 Fall;43(3):576-93. doi: 10.1111/jlme.12301.
Returning genetic research results to relatives raises complex issues. In order to inform the U.S. debate, this paper analyzes international law and policies governing the sharing of genetic research results with relatives and identifies key themes and lessons. The laws and policies from other countries demonstrate a range of approaches to balancing individual privacy and autonomy with family access for health benefit, offering important lessons for further development of approaches in the United States.
将基因研究结果反馈给亲属会引发复杂的问题。为了为美国的相关辩论提供信息依据，本文分析了关于与亲属分享基因研究结果的国际法和政策，并确定了关键主题和经验教训。其他国家的法律和政策展示了一系列在个人隐私与自主权和亲属获取健康益处之间取得平衡的方法，为美国进一步发展相关方法提供了重要经验。
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