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基因全面公开:数据共享与基因组隐私的社会梯度

Genes wide open: Data sharing and the social gradient of genomic privacy.

作者信息

Haeusermann Tobias, Fadda Marta, Blasimme Alessandro, Tzovaras Bastian Greshake, Vayena Effy

机构信息

a University of California San Francisco Memory and Aging Center.

b Department of Health Sciences and Technology , ETH Zurich.

出版信息

AJOB Empir Bioeth. 2018 Oct-Dec;9(4):207-221. doi: 10.1080/23294515.2018.1550123. Epub 2018 Dec 31.

Abstract

This study reports on 13 semistructured in-depth interviews to qualitatively explore the experiences of individuals who publicly shared their direct-to-consumer genetic testing results on the platform openSNP. In particular, we focused on interviewees' understanding of privacy. Participants reported that the likelihood and the magnitude of privacy harms depend on gender, ethnicity, sexual orientation, the stigma associated with certain clinical conditions, the existence of adequate legislation, and the nature of national health care systems. Some participants expressed the view that those who enjoy higher socioeconomic status or are better protected by their country's legislation have a responsibility to share their genetic data. Our study shows that people who share their genetic data publicly online-far from being insensitive to privacy risks-have a complex understanding of the social, relational, and contextual nature of genetic privacy.

摘要

本研究报告了13次半结构化深度访谈,以定性探索在openSNP平台上公开分享其直接面向消费者的基因检测结果的个人经历。特别是,我们关注受访者对隐私的理解。参与者报告称,隐私损害的可能性和程度取决于性别、种族、性取向、与某些临床状况相关的污名、是否存在适当的立法以及国家医疗保健系统的性质。一些参与者认为,那些享有较高社会经济地位或受到本国法律更好保护的人有责任分享他们的基因数据。我们的研究表明,在网上公开分享基因数据的人——远非对隐私风险不敏感——对基因隐私的社会、关系和背景性质有着复杂的理解。

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