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Avoiding Liability and Other Legal Land Mines in the Evolving Genomics Landscape
Annual Review of Genomics and Human Genetics ( IF 8.7 ) Pub Date : 2023-01-11 , DOI: 10.1146/annurev-genom-100722-021725
Ellen Wright Clayton 1, 2 , Alex M Tritell 2 , Adrian M Thorogood 3
Affiliation  

This article reviews evolving legal implications for clinicians and researchers as genomics is used more widely in both the clinic and in translational research, reflecting rapid changes in scientific knowledge as well as the surrounding cultural and political environment. Professionals will face new and changing duties to make or act upon a genetic diagnosis, address direct-to-consumer genetic testing in patient care, consider the health implications of results for patients’ family members, and recontact patients when test results change over time. Professional duties in reproductive genetic testing will need to be recalibrated in response to disruptive changes to reproductive rights in the United States. We also review the debate over who controls the flow of genetic information and who is responsible for its protection, considering the globally influential European Union General Data Protection Regulation and the rapidly evolving data privacy law landscape of the United States.

中文翻译:

在不断发展的基因组学领域避免责任和其他合法地雷

本文回顾了随着基因组学在临床和转化研究中得到更广泛的应用,对临床医生和研究人员不断变化的法律影响,反映了科学知识以及周围文化和政治环境的快速变化。专业人员将面临新的和不断变化的职责,以进行基因诊断或采取行动,解决患者护理中直接面向消费者的基因检测问题,考虑结果对患者家庭成员的健康影响,并在检测结果随时间变化时重新联系患者。生殖基因检测的专业职责需要重新调整,以应对美国生殖权利的破坏性变化。考虑到具有全球影响力的欧盟《通用数据保护条例》和快速发展的美国数据隐私法格局,我们还回顾了关于谁控制遗传信息流动以及谁负责保护遗传信息的争论。
更新日期:2023-01-11
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