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  • 标题:The law of genetic privacy: applications, implications, and limitations
  • 本地全文:下载
  • 作者:Clayton, Ellen Wright ; Evans, Barbara J ; Hazel, James W
  • 期刊名称:Journal of Law and the Biosciences
  • 电子版ISSN:2053-9711
  • 出版年度:2019
  • 卷号:6
  • 期号:1
  • 页码:1-36
  • DOI:10.1093/jlb/lsz007
  • 出版社:Oxford University Press
  • 摘要:Recent advances in technology have significantly improved the accuracy of genetic testing and analysis, and substantially reduced its cost, resulting in a dramatic increase in the amount of genetic information generated, analysed, shared, and stored by diverse individuals and entities. Given the diversity of actors and their interests, coupled with the wide variety of ways genetic data are held, it has been difficult to develop broadly applicable legal principles for genetic privacy. This article examines the current landscape of genetic privacy to identify the roles that the law does or should play, with a focus on federal statutes and regulations, including the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). After considering the many contexts in which issues of genetic privacy arise, the article concludes that few, if any, applicable legal doctrines or enactments provide adequate protection or meaningful control to individuals over disclosures that may affect them. The article describes why it may be time to shift attention from attempting to control access to genetic information to considering the more challenging question of how these data can be used and under what conditions, explicitly addressing trade-offs between individual and social goods in numerous applications.
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