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The Genetic Information Nondiscrimination Act (GINA): Public Policy and Medical Practice in the Age of Personalized Medicine

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Abstract

Survey data suggest that many people fear genetic discrimination by health insurers or employers. In fact, such discrimination has not yet been a significant problem. This article examines the fear and reality of genetic discrimination in the United States, describes how Congress sought to prohibit such discrimination by passing the Genetic Information Nondiscrimination Act of 2008 (GINA), and explores the implications of GINA for general internists and their institutions. It concludes that medical providers and health care institutions must be familiar with the general intent and specific terms of GINA, and should continue to collect genetic information that can contribute to the high quality provision of medical treatment. Not doing so violates their medical mission and diminishes the quality of care patients deserve.

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Notes

  1. Regulations Under the Genetic Information Nondiscrimination Act of 2008, 75 Fed. Reg. 68912 (2010).

  2. Haga SB, Carrig MM, O'Daniel JM, et al. Genomic risk profiling: attitudes and use in personal and clinical care of primary care physicians who offer risk profiling. J Gen Intern Med. 2011;26:834–40.

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  5. S.Rep.No.110-48, 110th Cong., 1st Sess. 6 (2007).

  6. They appear to have had significant public support. “Besides the more than 200 health advocacy and business organizations that support this bill, recent surveys show 93 percent of Americans believe that employers and insurers should not be able to use genetic information to discriminate.” 153 Cong. Rec. 10310, 10323 (permanent ed. Apr. 25 2007) (statement of Rep. Biggert).

  7. Genetic Information Nondiscrimination Act of 2008 , Pub.L. 110–233, 122 Stat. 881 (2008).

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  9. For a European example, see Hoyweghen IV, Horstman K. European practices of genetic information and insurance: Lessons for the Genetic Information Nondiscrimination Act. JAMA. 2008; 300:326–27.

  10. Patient Protection and Affordable Care Act, Pub.L. 111–148, 124 Stat. 119 (2010).

  11. 42 U.S.C.A. §300gg-3(b)(1)(B) (2010) (“Genetic information shall not be treated as a condition described in subsection (a)(1) of this section in the absence of a diagnosis of the condition related to such information”). Like many parts of PPACA, the preexisting condition exclusion is undergoing legal review.

  12. Roberts JL. Preempting discrimination: lessons from the Genetic Information Nondiscrimination Act. Vanderbilt Law Rev. 2010;63:439–90.

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  13. This view is strongly stated by Senator Kennedy in S.Rep.No.110-48, 110th Cong., 1st Sess. 7 (2007): “Although surveys and polls demonstrate a fairly widespread fear of discrimination, there is little evidence or documentation of actual discrimination in health insurance.”

  14. Kaufmann MB. Genetic discrimination in the workplace: an overview of existing protections. Loyola Univ Chicago Law J. 1999;30(393–438):402–03.

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  15. Ibid.

  16. The Genetic Information Nondiscriminiation Act: Hearing Before the Subcommittee on Health of the Committee on Energy and Commerce, U.S. House of Representatives, 110th Cong., 1st Sess. 33 (2007) (prepared statement of Sharon Terry, Chair, Coalition for Genetic Fairness, and President, Chief Executive Officer, Genetic Alliance, Washington, DC). Id. at 4095.

  17. S.Rep.No.110-48, 110th Cong., 1st Sess. 6 (2007).

  18. S.Rep.No.110-48, 110th Cong., 1st Sess. 7 (2007).

  19. S.Rep.No.110-48, 110th Cong., 1st Sess. 6–8 (2007). According to the report, 63% of respondents to a national telephone survey indicated that they would refuse genetic tests if health insurers or employers could gain access to the results, and 68% of patients answering a questionnaire said that fear of discrimination would keep them from billing their health insurance companies for genetic tests. For similar reasons, the AMA welcomed the passage of GINA, stating that “This new law will allow patients to take advantage of scientific advances in genetics, such as screenings and therapies, without worrying that their personal health information could be used against them by insurers or employers” (statement by Edward Langston, AMA Board Chair: AMA applauds passage of new law to protect patients from genetic discrimination [Internet]. Sussex: UK: Medical News Today; c2011 [posted 2008 May 23; cited 2011 Sep 16]. Available from: 2008 http://www.medicalnewstoday.com/releases/108633.php). It also appears that many people are unaware of the existence of genetic testing (Baer HJ, Brawarsky P, Murray MF, Haas JS. Familial risk of cancer and knowledge and use of genetic testing. J Gen Intern Med. 2010; 25:717–24).

  20. Genetics and health insurance state anti-discrimination laws [Internet]. Washington: Denver (CO): National Conference of State Legislatures; c2011 [updated 2008 Jan; cited 2011 Sep 16 ]. Available from: http://www.ncsl.org/default.aspx?tabid=14374. Genetic employment laws [Internet]. Washington: Denver (CO): National Conference of State Legislatures; c2011 [updated 2008 Jan; cited 2011 Sep 16]. Available from: http://www.ncsl.org/default.aspx?tabid=14280.

  21. See Bullock v. Spherion, No. 3:10-cv-465, 2011 WL 1869933 (W.D.N.C. May 16, 2011); Robinson v. Starplex/CMS Event Security, No. CV-10-723-HU, 2011 WL 1541290 (D. Or. Mar. 15, 2011); Citron v. Niche Media/Ocean Drive Magazine, No. 10-24014-CIV, 2011 WL 381939 (S.D. Fla. Feb. 2, 2011); Benoit v. Pennsylvania Board of Probation and Parole-West Division, No. 094047, 2010 WL 481021 (E.D. Pa. Feb. 9, 2010); Capulong v. Dep’t of Education of Guam, No. 10–00005, 2011 WL 1134986 (D. Guam Mar. 24, 2011); Armes v. CSX Transportation, Inc., No. CCB-11-112, 2011 WL 2471476 (D. Md. June 20, 2011).

  22. Klitzman R. Exclusion of genetic information from the medical record. JAMA. 2010;304:1120–21.

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  23. AMA code of ethics: Opinion 2.135 - insurance companies and genetic information [Internet]. Chicago (IL): American Medical Association; c2011 [updated 1996 June; cited 2011 Sep 16]. Available at: http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion2135.page.

  24. Ibid.

  25. See, for example: Regulations Under the Genetic Information Nondiscrimination Act of 2008, 75 Fed. Reg. 68912 (2010).

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Acknowledgements

I would like to thank the library staff of the University of Pennsylvania Law School, especially Timothy Von Dulm and Benjamin Meltzer, for assistance with research and citations; Professor Umberto Izzo of the University of Trento Faculty of Law for encouraging me to write this paper; and Chelsea Darnell for research assistance. This article is based in part on a presentation at a conference titled “International Issues in the Governance of Research Biobanks,” Trento, Italy, May 2010. Financial assistance was provided by the University of Pennsylvania Law School Faculty Research Fund.

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The author declares that he does not have a conflict of interest.

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  1. University of Pennsylvania Law School, 3400 Chestnut Street, Philadelphia, PA, 19104, USA

    Eric A. Feldman JD, PhD

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Correspondence to Eric A. Feldman JD, PhD.

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Feldman, E.A. The Genetic Information Nondiscrimination Act (GINA): Public Policy and Medical Practice in the Age of Personalized Medicine. J GEN INTERN MED 27, 743–746 (2012). https://doi.org/10.1007/s11606-012-1988-6

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  • DOI: https://doi.org/10.1007/s11606-012-1988-6

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