Abstract
Does genetic information warrant special legal protection, and if so how should it be protected? (See Feldman (2012), for a discussion of the implications of GINA for primary care providers). This question has taken on greater urgency in the United States as genetic testing has become more common and biobanks have developed repositories for large amounts of genetic information. One central concern raised by the collection and storage of genetic and biomedical information is that individuals will increasingly experience privacy violations and discrimination (Kaufman (2009), pp. 643–644). Biomedical researchers worry that public fear of discrimination and privacy violations will limit their ability to collect and analyze genetic information in biobanks. As genetic testing advances and biobanks grow, such concerns will be amplified. The possibility that fear of genetic discrimination would cause people to refrain from genetic testing, which would in turn inhibit scientific research and the discovery of potentially life-saving medical interventions, was in large part responsible for the passage of legislation that addresses the potential threat of genetic discrimination in the USA.
This essay examines the most recent (and indeed only) significant effort by the US government to prohibit genetic discrimination, the Genetic Information Nondiscrimination Act (GINA). Advocates worked for more than a decade to secure GINA’s passage. In the end, we argue that the legislation is unlikely to have the positive impact sought by advocates of genetic privacy. In part, GINA disappoints because it does too little. Hailed by its promoters as “the first civil rights act of the 21st century,” GINA’s reach is in fact quite modest and its grasp even more so. But GINA also fails by trying to do too much, tying the hands of insurers and employers in ways that may fail to serve the interests of individuals or society more generally. In short, if genetic discrimination is a problem that needs to be solved, GINA is not the solution. Instead, the Act creates a number of new and possibly intractable problems that may be more troublesome than what it originally set out to resolve.
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Notes
- 1.
“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. H 4083, 4096 (April 25, 2007) [statement of Judy Biggert (R-IL13)].
- 2.
Ironically, Senator Coburn’s official website press room reproduces a story critical of his hold-out period. See http://coburn.senate.gov/public/index.cfm?FuseAction=LatestNews.NewsStories&ContentRecord_id=9180ab87-802a-23ad-4e03-b65e171db230&Issue_id=.
- 3.
MacKenna (2008).
- 4.
S. Rep. No. 110-48, at 28.
- 5.
Existing legislation includes, for example, the Health Insurance Portability and Accountability Act, the Americans with Disabilities Act, Title VII of the Civil Rights Act, and a large number of state statues that prohibit genetic discrimination by insurers and employers in at least some contexts.
- 6.
S. Rep. No. 110-48, at 8 (citing Kaufmann 1999).
- 7.
S. Rep. No. 110-48, at 9 (citing 42 U.S.C. § 300(b)).
- 8.
Ibid.
- 9.
Id. at 4095.
- 10.
S. Rep. No. 110-48, at 6.
- 11.
Id. at 7.
- 12.
153 Cong. Rec. H 4083, 4095 (April 25, 2007) [statement of Louise Slaughter (D-NY28)].
- 13.
S. Rep. No. 110-48, at 5. See also Rothenberg (2007).
- 14.
S. Rep. No. 110-48, at 7. “Another study of insurance practices found there are almost no well-documented cases of health insurers either asking for or using presymptomatic genetic test results in their underwriting decisions. The same study found that ‘some insurers clearly do use family history information for important disease categories such as heart disease, cancer, and diabetes, but they do so only to look for or evaluate other signs of existing or prior disease, not to predict the onset of future health problems.’” Id. at 8.
- 15.
Id. at 8.
- 16.
It is not clear why GINA did not prohibit all insurers from using genetic information. One possibility is that the politically powerful life insurance industry would have effectively opposed such legislation.
- 17.
DeNavas-Walt et al. (2008).
- 18.
Because the insurance industry is heavily regulated by state governments, there is significant variation in how companies engage in community rating and experience rating when setting health insurance premiums.
- 19.
See Baker (2008), section re: “Topics in Substantive Insurance Regulation”, subsection “Insurance Risk Classification”, for a discussion of risk classification and fair discrimination: “As understood by many people in the insurance business, classifying people according to their risk is fair and gives them an incentive to arrange their affairs so that they pose a lower risk” (p. 748?). In other words, insurers believe that it is fair for people to pay more for insurance if they present higher risks, but unfair to charge people different premiums if they are of the same class and represent the same hazards.
- 20.
Van Hoyweghen and Horstman (2008).
- 21.
As the Patient Protection and Affordable Care Act of 2010 is implemented, some of these issues will lose their salience.
- 22.
Korobkin and Rajkumar (2008).
- 23.
Id. at 336.
- 24.
Id. at 337.
- 25.
Miyagawa (2008).
- 26.
National Center for Biotechnology Information, “Genes and Disease”, http://www.ncbi.nlm.nih.gov/books/NBK22237/.
- 27.
Norman-Bloodsaw v. Lawrence Berkeley Laboratory, 135 F.3d 1260, 1269 (9th Cir. 1998).
- 28.
Id.
- 29.
Id. at 1269.
- 30.
Id. Of course, the Constitution only protects persons from state action. The use of genetic information by health insurance companies, plans, researchers and private employers does not raise constitutional problems and was what prompted genetic information nondiscrimination legislation. S. Rep. No. 110-48, at 7.
- 31.
EEOC v Burlington N. Santa Fe Railway Company, Civ No 01-4013 MWB (N.D. Iowa, 8 February 2001). See Press Release, EEOC Settles ADA Suit against BNSF for Genetic Bias, http://www.eeoc.gov/eeoc/newsroom/release/4-18-01.cfm (last visited 20 February 2010) (announcing settlement).
- 32.
EEOC and BNSF Settle Genetic Testing Case under Americans with Disabilities Act, http://www.eeoc.gov/eeoc/newsroom/release/5-8-02.cfm (last visited February 20, 2010) (elaborating on settlement conditions).
- 33.
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. March 15, 2011); Citron v. Niche Media/Ocean Drive Magazine, No. 10-24014-CIV, 2011 WL 381939 (S.D. Fla. February 2, 2011); Benoit v. Pennsylvania Board of Probation and Parole-West Division, No. 094047, 2010 WL 481021 (E.D. Pa. February 9, 2010); Capulong v. Dep’t of Education of Guam, No. 10-00005, 2011 WL 1134986 (D. Guam March 24, 2011).
- 34.
Armes v. CSX Transportation, Inc., No. CCB-11-112, 2011 WL 2471476 (D. Md. June 20, 2011).
References
Baker T (2008) Insurance law and policy: cases and materials. Aspen Publishers, New York
DeNavas-Walt C, Proctor BD, Smith JC (2008) Income, poverty, and health insurance coverage in the United States: 2007. http://www.census.gov/prod/2008pubs/p60-235.pdf. Accessed 20 Feb 2010
Feldman EA (2012) The Genetic Information Nondiscrimination Act (GINA): public policy and medical practice in the age of personalized medicine. J Gen Intern Med 27:743
Kaufman DJ (2009) Public opinion about the importance of privacy in biobank research. Am J Hum Genet 85:643–654
Kaufmann MB (1999) Genetic discrimination in the workplace: an overview of existing protections. Loyola Univ Chicago Law J 30:393, 402–403
Korobkin R, Rajkumar R (2008) The genetic information nondiscrimination act—a half-step toward risk sharing. N Engl J Med 359:335–337
MacKenna R (2008) US Senate approves genetic anti-discrimination legislation. http://www.bionews.org.uk/page_13370.asp. Accessed 20 Feb 2010
Miyagawa T (2008) Variant between CPT1B and CHKB associated with susceptibility to narcolepsy. Nature Gen 40:1324–1328
Rothenberg K (2007) Protecting workers from genetic discrimination: hearing before the Subcomm.e on health, employment, labor and pensions of the H. Comm. on Education and Labor. U.S. Government Printing Office, Washington
Van Hoyweghen I, Horstman K (2008) European practices of genetic information and insurance: lessons for the genetic information nondiscrimination act. JAMA 300:326–327
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Feldman, E.A., Darnell, C. (2013). Health Insurance, Employment, and the Human Genome: Genetic Discrimination and Biobanks in the United States. In: Pascuzzi, G., Izzo, U., Macilotti, M. (eds) Comparative Issues in the Governance of Research Biobanks. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-33116-9_4
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