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Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination.
Annual Review of Genomics and Human Genetics ( IF 8.7 ) Pub Date : 2020-09-01 , DOI: 10.1146/annurev-genom-111119-011436
Yann Joly 1 , Charles Dupras 1 , Miriam Pinkesz 1 , Stacey A Tovino 2 , Mark A Rothstein 3
Affiliation  

Concerns about genetic discrimination (GD) often surface when discussing research and innovation in genetics. Over recent decades, countries around the world have attempted to address GD using various policy measures. In this article, we survey these approaches and provide a critical commentary on their advantages and disadvantages. Our examination begins with regions featuring extensive policy-making activities (North America and Europe), followed by regions with moderate policy-making activities (Australia, Asia, and South America) and regions with minimal policy-making activities (the Middle East and Africa). Our analysis then turns to emerging issues regarding genetic testing and GD, including the expansion of multiomics sciences and direct-to-consumer genetic tests outside the health context. We additionally survey the shortcomings of current normative approaches addressing GD. Finally, we conclude by highlighting the evolving nature of GD and the need for more innovative policy-making in this area.

中文翻译:


超越GINA:解决遗传歧视的政策方法。

在讨论遗传学的研究和创新时,经常会出现对遗传歧视(GD)的担忧。在最近的几十年中,世界各地的国家已尝试使用各种政策措施来解决GD。在本文中,我们对这些方法进行了概述,并对它们的优缺点提供了重要的评论。我们的考试首先从具有广泛决策活动的区域(北美和欧洲)开始,然后是具有中等决策活动的区域(澳大利亚,亚洲和南美)和仅具有很少决策活动的区域(中东和非洲) )。然后,我们的分析转向了有关基因检测和GD的新问题,包括在健康背景之外扩展了多组学和直接面向消费者的基因检测。我们还调查了解决GD的当前规范方法的缺点。最后,我们通过强调GD的不断发展的性质以及在这一领域进行更具创新性的政策制定的必要性来结束本文。

更新日期:2020-09-03
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