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遗传隐私与法律:遗传学例外论的终结

Genetic privacy and the law: an end to genetics exceptionalism.

作者信息

Gostin L O, Hodge J G

机构信息

Georgetown Univesity Law Center, Washington, DC, USA.

出版信息

Jurimetrics. 1999 Fall:21-58.

Abstract

While the proliferation of human genetic information promises to achieve many public benefits, the acquisition, use, retention, and disclosure of genetic data threatens individual liberties. States (and to a lesser degree, the federal government) have responded to the anticipated and actual threats of privacy invasion and discrimination by enacting several types of genetic-specific legislation. These laws emphasize the differences between genetic information and other health information. By articulating these differences, governments afford genetic data an "exceptional" status. The authors argue that genetic exceptionalism is flawed for two reasons: (1) strict protections of autonomy, privacy, and equal treatment of persons with genetic conditions threaten the accomplishment of public goods; and (2) there is no clear demarcation separating genetic data from other health data; other health data deserve protections in a national health information infrastructure. The authors present ideas for individual privacy protections that balance the societal need for genetic information and the claims for privacy by individuals and families.

摘要

虽然人类遗传信息的激增有望带来诸多公共利益,但遗传数据的获取、使用、保留和披露却威胁到个人自由。各州(以及程度稍轻的联邦政府)已通过制定几种特定类型的遗传相关立法,来应对隐私侵犯和歧视方面预期的及实际的威胁。这些法律强调了遗传信息与其他健康信息之间的差异。通过阐明这些差异,政府赋予了遗传数据一种“特殊”地位。作者认为,遗传例外论存在两个缺陷:(1)对自主权、隐私权以及对患有遗传疾病者的平等对待的严格保护,威胁到公共利益的实现;(2)在遗传数据与其他健康数据之间没有明确的界限划分;在国家健康信息基础设施中,其他健康数据也应受到保护。作者提出了关于个人隐私保护的观点,以平衡社会对遗传信息的需求以及个人和家庭对隐私的诉求。

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