Centre of Genomics and Policy, McGill University, Montreal, Quebec H3A 0G1, Canada; email:
William S. Boyd School of Law, University of Nevada, Las Vegas, Nevada 89154, USA.
Annu Rev Genomics Hum Genet. 2020 Aug 31;21:491-507. doi: 10.1146/annurev-genom-111119-011436. Epub 2020 Jan 21.
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.
当讨论遗传学的研究和创新时，人们常常会对遗传歧视（GD）表示担忧。在过去几十年中，世界各国都试图通过各种政策措施来解决 GD 问题。本文对这些方法进行了调查，并对其优缺点进行了批判性的评价。我们的考察首先从政策制定活动广泛的地区（北美和欧洲）开始，然后是政策制定活动中等的地区（澳大利亚、亚洲和南美洲），最后是政策制定活动最少的地区（中东和非洲）。接着，我们分析了与基因检测和 GD 相关的新兴问题，包括多组学科学和健康背景之外的直接面向消费者的基因检测的扩展。我们还调查了目前解决 GD 的规范性方法的不足之处。最后，我们通过强调 GD 的不断变化的性质以及在这一领域需要更具创新性的政策制定，得出了结论。
