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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 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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  1. Smart, A., Bolnick, D. A. & Tutton, R. Health and genetic ancestry testing: time to bridge the gap. BMC Med. Genomics 10, 3 (2017).

    Article  Google Scholar 

  2. Granados Moreno, P., Ngueng Feze, I. & Joly, Y. Does the end justify the means? A comparative study of the use of DNA testing in the context of family reunification. J. Law Biosci. 4, 250–281 (2017).

    Article  Google Scholar 

  3. Arenas, M. et al. Forensic genetics and genomics: Much more than just a human affair. PLoS Genet. 13, e1006960 (2017).

    Article  Google Scholar 

  4. Reich, D. Who We Are and How We Got Here: Ancient DNA and the New Science of the Human Past (Oxford University Press, 2018).

  5. Sabour, L., Sabour, M. & Ghorbian, S. Clinical applications of next-generation sequencing in cancer diagnosis. Pathol. Oncol. Res. 23, 225–234 (2017).

    Article  CAS  Google Scholar 

  6. Brennan, P. & Wild, C. P. Genomics of cancer and a new era for cancer prevention. PLoS Genet. 11, e1005522 (2015).

    Article  Google Scholar 

  7. Biesecker, L. G. & Green, R. C. Diagnostic clinical genome and exome sequencing. N. Engl. J. Med. 370, 2418–2425 (2014).

    Article  Google Scholar 

  8. Collins, F. S. & Varmus, H. A new initiative on precision medicine. N. Engl. J. Med. 372, 793–795 (2015).

    Article  CAS  Google Scholar 

  9. All of Us. Precision Medicine—Prevent Health Disparities (US Department of Health & Human Services; accessed 8 May 2018);

  10. Coalition for Genetic Fairness. Faces of Genetic Discrimination (Coalition for Genetic Fairness, 2004);

  11. Bombard, Y., King Wong, E. & Lemmens, T. Insurance and genetic information. in Encyclopedia of Life Sciences (John Wiley & Sons, 2017);

  12. Epstein, R. A. The legal regulation of genetic discrimination: old responses to new technology. BU L Rev. 74, 1–23 (1994).

    Google Scholar 

  13. Tiller, J. & Lacaze, P. Australians can be denied life insurance based on genetic test results, and there is little protection. The Conversation (2017);

  14. Green, R. C., Lautenbach, D. & McGuire, A. L. GINA, genetic discrimination, and genomic medicine. N. Engl. J. Med. 372, 397–399 (2015).

    Article  CAS  Google Scholar 

  15. Robinson, J. O. et al. Participants and study decliners’ perspectives about the risks of participating in a clinical trial of whole genome sequencing. J. Empir. Res. Hum. Res. Ethics 11, 21–30 (2016).

    Article  Google Scholar 

  16. Geelen, E., Horstman, K., Marcelis, C. L., Doevendans, P. A. & Van Hoyweghen, I. Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts. Eur. J. Hum. Genet. 20, 1018–1023 (2012).

    Article  Google Scholar 

  17. Genetics & Public Policy Center. U.S. Public Opinion on Uses of Genetic Information and Genetic Discrimination (2007);

  18. Genetti, C. A. et al. Parental interest in genomic sequencing of newborns: enrollment experience from the BabySeq Project. Genet. Med. 21, 622–630 (2019).

    Article  Google Scholar 

  19. Dalpé, G. et al. Breast cancer risk estimation and personal insurance: a qualitative study presenting perspectives from Canadian patients and decision makers. Front. Genet. 8, 128 (2017).

    Article  Google Scholar 

  20. Barlyn, S. Strap on the Fitbit: John Hancock to sell only interactive life insurance. Reuters (2018);

  21. John Hancock. Vitality Program (2018);

  22. Chen, A. What happens when life insurance companies track fitness data? The Verge (2018);

  23. Klein, R. Genetics and Life Insurance—A View Into the Microscope of Regulation (The Geneva Association, 2017);

  24. Otlowski, M., Taylor, S. & Bombard, Y. Genetic discrimination: international perspectives. Annu. Rev. Genom. Hum. Genet. 13, 433–454 (2012).

    Article  CAS  Google Scholar 

  25. Joly, Y., Ngueng Feze, I. & Simard, J. Genetic discrimination and life insurance: a systematic review of the evidence. BMC Med. 11, 25 (2013).

    Article  Google Scholar 

  26. Reuters. Bush signs genetics anti-discrimination law. Reuters (2008);

  27. Genetic Information Nondiscrimination Act of 2008, Pub. L. No. 110-233 (2008);

  28. 42 U.S.C. § 2000ff Definitions. in Genetic Information Nondiscrimination Act of 2008, Pub. L. No. 110-233 (2008).

  29. 29 CFR § 1635.3 - Definitions specific to GINA. in Genetic Information Nondiscrimination Act of 2008, Pub. L. No. 110-233.

  30. Rothstein, M. A. Putting the Genetic Information Nondiscrimination Act in context. Genet. Med. 10, 655–656 (2008).

    Article  Google Scholar 

  31. Rothstein, M. A. GINA at ten and the future of genetic nondiscrimination law. Hastings Cent. Rep. 48, 5–7 (2018).

    Article  Google Scholar 

  32. Nys, H., & European Commission, Directorate General for Research, Quality of Life and Management of Living Resources. Genetic Testing: Patient’s Rights, Insurance, and Employment: A Survey of regulations in the European Union (Office for Official Publications of the European Communities/Bernan Associates, 2002).

  33. France. Code pénal (1994).

  34. Federal Assembly of the Swiss Confederation. Federal Act on Human Genetic Testing (HGTA) (2004);

  35. The Swiss Parliament. Genetische Untersuchungen beim Menschen: Bundesgesetz—Analyse génétique humaine: Loi fédérale (The Swiss Parliament, 2018);

  36. Walker, J. Genetic Discrimination and Canadian Law (Canadian Library of Parliament, 2014);–90-e.pdf

  37. Gold, K. How genetic testing can be used against you—and how Bill S-201 could change that. The Globe and Mail (2016);

  38. Government of Canada. An Act to prohibit and prevent genetic discrimination (2017);–1/bill/S-201/royal-assent

  39. Government of the United Kingdom & Association of British Insurers. Concordat and Moratorium on Genetics and Insurance (2014);

  40. Government of the United Kingdom & Association of British Insurers. Code on Genetic Testing and Insurance (2018);

  41. Tiller, J., Otlowski, M. & Lacaze, P. Should Australia ban the use of genetic test results in life insurance? Front. Public Health 5, 330 (2017).

    Article  Google Scholar 

  42. Joly, Y., Feze, I. N., Song, L. & Knoppers, B. M. Comparative Approaches to Genetic Discrimination: Chasing Shadows? Trends Genet. 33, 299–302 (2017).

    Article  CAS  Google Scholar 

  43. Hudson, K. L., Rothenberg, K. H., Andrews, L. B., Kahn, M. J. E. & Collins, F. S. Genetic discrimination and health insurance: an urgent need for reform. Science 270, 391–393 (1995).

    Article  CAS  Google Scholar 

  44. UNESCO. Universal Declaration on the Human Genome and Human Rights (1997);

  45. Newson, A. J., Tiller, J., Keogh, L. A., Otlowski, M. & Lacaze, P. Genetics and insurance in Australia: concerns around a self-regulated industry. Public Health Genomics 20, 247–256 (2017).

    Article  Google Scholar 

  46. Minari, J., Brothers, K. B. & Morrison, M. Tensions in ethics and policy created by National Precision Medicine Programs. Hum. Genom. 12, 22 (2018).

    Article  Google Scholar 

  47. Torkamani, A., Wineinger, N. E. & Topol, E. J. The personal and clinical utility of polygenic risk scores. Nat. Rev. Genet. 19, 581–590 (2018).

    Article  CAS  Google Scholar 

  48. Vassy, J. L. et al. The impact of whole-genome sequencing on the primary care and outcomes of healthy adult patients: a pilot randomized trial. Ann. Intern. Med. 167, 159–169 (2017).

    Article  Google Scholar 

  49. Cooper, D. N., Krawczak, M., Polychronakos, C., Tyler-Smith, C. & Kehrer-Sawatzki, H. Where genotype is not predictive of phenotype: towards an understanding of the molecular basis of reduced penetrance in human inherited disease. Hum. Genet. 132, 1077–1130 (2013).

    Article  CAS  Google Scholar 

  50. Canadian Life and Health Insurance Association. CLHIA Opening Remarks to the Standing Senate Committee on Human Rights—Appearance on Bill S-201, Genetic Non-Discrimination Act (2016);

  51. Canadian Life and Health Insurance Association. Genetic Testing and Life Insurance—Our Industry’s Commitment to Canadians (2017);

  52. Bombard, Y. & Heim-Myers, B. The Genetic Non-Discrimination Act: critical for promoting health and science in Canada. CMAJ 190, E579–E580 (2018).

    Article  Google Scholar 

  53. Financial Services Council (Australia). FSC Standard No. 11 ‘Genetic Testing Policy’ (2016).

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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.

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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.

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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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Bélisle-Pipon, JC., Vayena, E., Green, R.C. et al. Genetic testing, insurance discrimination and medical research: what the United States can learn from peer countries. Nat Med 25, 1198–1204 (2019).

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