The genetic information nondiscrimination act (GINA): Public policy and medical practice in the age of personalized medicine

Journal of General Internal Medicine

Volumn 27, Issue 6, 2012, Pages 743-746

  Feldman, Eric A ^a  

^a UNIVERSITY OF PENNSYLVANIA LAW SCHOOL   (United States)

Author keywords

discrimination; genetics; law; personalized medicine; policy

Indexed keywords

ACT; GENETIC DISCRIMINATION; GENETIC INFORMATION NONDISCRIMINATION ACT OF 2008; GENETIC PARAMETERS; HEALTH CARE PERSONNEL; HEALTH CARE POLICY; HEALTH CARE QUALITY; HEALTH CENTER; HUMAN; INTERNATIONAL COOPERATION; INTERNIST; MEDICAL PRACTICE; PERSONALIZED MEDICINE; REVIEW; UNITED STATES;

GENETIC PRIVACY; GENETIC TESTING; HUMANS; INDIVIDUALIZED MEDICINE; LEGISLATION, MEDICAL; PREJUDICE; PUBLIC POLICY; UNITED STATES;

EID: 84862665348     PISSN: 08848734     EISSN: 15251497     Source Type: Journal    
DOI: 10.1007/s11606-012-1988-6     Document Type: Review

References (22)

1. Regulations Under the Genetic Information Nondiscrimination Act of 2008, 75 Fed. Reg. 68912 (2010).
2. SB Haga MM Carrig JM O'Daniel, et al. 2011 Genomic risk profiling: attitudes and use in personal and clinical care of primary care physicians who offer risk profiling J Gen Intern Med 26 834 40 21311998 10.1007/s11606-011- 1651-7
3. KL Hudson MK Holohan FS Collins 2008 Keeping pace with the times - The Genetic Information Nondiscrimination Act of 2008 N Engl J Med 358 2661 63 18565857 10.1056/NEJMp0803964 1:CAS:528:DC%2BD1cXns1Wmu7o%3D
4. st Sess. 33-35 (2007) (prepared statement of Dean Karen Rothenberg).
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).
8. R Korobkin R Rajkumar 2008 The Genetic Information Nondiscrimination Act - A half-step toward risk sharing N Engl J Med 359 335 37 18650511 10.1056/NEJMp0804352 1:CAS:528:DC%2BD1cXovFSqtLw%3D
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. JL Roberts 2010 Preempting discrimination: lessons from the Genetic Information Nondiscrimination Act Vanderbilt Law Rev 63 439 90
12. MB Kaufmann 1999 Genetic discrimination in the workplace: an overview of existing protections Loyola Univ Chicago Law J 30 393-438 402 03
13. 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.
14. S.Rep.No.110-48, 110th Cong., 1st Sess. 6 (2007).
15. S.Rep.No.110-48, 110th Cong., 1st Sess. 7 (2007).
16. 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 ).
17. 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).
18. 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.
19. 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).
20. R Klitzman 2010 Exclusion of genetic information from the medical record JAMA 304 1120 21 20823439 10.1001/jama.2010.1303 1:CAS:528:DC%2BC3cXhtFCmsrjN
21. 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.
22. See, for example: Regulations Under the Genetic Information Nondiscrimination Act of 2008, 75 Fed. Reg. 68912 (2010).