Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination - PubMed

Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination - PubMed

Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination

Yann Joly 1, Charles Dupras 1, Miriam Pinkesz 1, Stacey A Tovino 2, Mark A Rothstein 3

Affiliations 

• PMID: 31961723
 
• DOI: 10.1146/annurev-genom-111119-011436

Abstract

Genetic discrimination (GD) is consistently associated with 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. Expected final online publication date for the Annual Review of Genomics and Human Genetics, Volume 21 is August 31, 2020. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

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