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Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination.

Authors :
Joly Y
Dupras C
Pinkesz M
Tovino SA
Rothstein MA
Source :
Annual review of genomics and human genetics [Annu Rev Genomics Hum Genet] 2020 Aug 31; Vol. 21, pp. 491-507. Date of Electronic Publication: 2020 Jan 21.
Publication Year :
2020

Abstract

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.

Details

Language :
English
ISSN :
1545-293X
Volume :
21
Database :
MEDLINE
Journal :
Annual review of genomics and human genetics
Publication Type :
Academic Journal
Accession number :
31961723
Full Text :
https://doi.org/10.1146/annurev-genom-111119-011436