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Article
Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination
Annual Review of Genomics and Human Genetics (2020)
  • Yann Joly, McGill University Faculty of Medicine
  • Charles Dupras, University of Montreal, School of Public Health
  • Miriam Pinkesz
  • Stacey A. Tovino, University of Oklahoma College of Law
  • Mark A. Rothstein, University of Louisville
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 the area.
Keywords
  • genetic discrimination,
  • comparative law,
  • equality,
  • genetic testing,
  • insurance,
  • Genetic Information Nondiscrimination Act,
  • GINA,
  • policy,
  • GD
Publication Date
2020
Citation Information
Yann Joly, Charles Dupras, Miriam Pinkesz, Stacey A. Tovino, et al.. "Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination" Annual Review of Genomics and Human Genetics Vol. 21 (2020) p. 491
Available at: http://works.bepress.com/stacey-tovino/23/