Genetic testing, insurance discrimination and medical research: what the United States can learn from peer countries

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Abstract

While genetic testing may be the gateway to the future of medicine, it also poses challenges for individuals, especially in terms of differentiated treatments on the basis of their genetic characteristics. The fear of unwanted disclosure to insurers and the possibility of genetic discrimination can hamper the recruitment of individuals for clinical research that involves genetic testing. Precision medicine initiatives, such as All of Us, are proliferating in the United States. In order to succeed, however, they must ensure that the millions of Americans recruited to share their genetic data are not penalized with regard to life, disability and long-term insurance coverage. In this Perspective, we discuss several initiatives adopted by countries around the world, such as the United Kingdom and France, that better balance the interests of insurers and research subjects, and explain how the United States might learn from them. We call for regulatory and industry leadership to come together to establish a voluntary moratorium on insurance pricing with the aim of protecting research participants.

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Acknowledgements

The authors would like to thank E. Baird for comments in revising the paper. J.C.B.P. is funded by postdoctoral fellowships from the Canadian Institutes of Health Research (CIHR), the Québec Health Research Fund (FRQS) and the Québec SPOR-SUPPORT Unit. R.C.G. is supported by grant funding from the National Institutes of Health and the Franca Sozzani Fund.

Author information

J.C.B.P. wrote the first draft under I.G.C.’s supervision. I.G.C., E.V. and R.C.G. commented on and revised the manuscript. All authors gave final approval of the version to be published.

Correspondence to I. Glenn Cohen.

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Competing interests

R.C.G. reports personal fees from AIA, Applied Therapeutics, Helix, Verily and Veritas, and is a cofounder with equity in Genome Medical.

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Peer review information: Hannah Stower and Joao Montiero were the primary editors on this Article and managed its editorial process and peer review in collaboration with the rest of the editorial team.

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