Genetic testing, insurance discrimination and medical research: what the United States can learn from peer countries
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...
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| Veröffentlicht in: | Nature medicine 2019-08, Vol.25 (8), p.1198-1204 |
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| creator | Bélisle-Pipon, Jean-Christophe Vayena, Effy Green, Robert C. Cohen, I. Glenn |
| description | 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. |
| doi_str_mv | 10.1038/s41591-019-0534-z |
| format | Article |
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| subjects | 631/208 706/689/179 706/689/280 Biomedical and Life Sciences Biomedical Research Biomedicine Cancer Research Civil rights Disclosure of information Ethical aspects Genetic screening Genetic Testing Genetics Humans Infectious Diseases Insurance Insurance Coverage Insurance industry Laws, regulations and rules Leadership Medical research Medicine Metabolic Diseases Molecular Medicine Neurosciences Perspective Precision Medicine United States Volunteer workers in medical care |
| title | Genetic testing, insurance discrimination and medical research: what the United States can learn from peer countries |
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