Predictive Genetic Testing: Congruence of Disability Insurers' Interests with the Public Interest

See, for example, Epstein R. , “The Legal Regulation of Genetic Discrimination: Old Responses to New Technology,” Boston University Law Review 74, no. 1 (1994) and Diver C. and Cohen J. M. , “Genophobia: What Is Wrong with Genetic Discrimination?” University of Pennsylvania Law Review 149 (2001): 1439–1482. Both articles argue that prohibiting insurers from having access to, or acting upon, genetic information about prospective insurance seekers illegitimately transfers wealth from the former in order to subsidize the latter. Both assume that advantage (and the material resources advantage procures) naturally will redound to insurers generally, but for the interference of legal regulation that curtails insurers' free access to genetic information and to action on that information. This assumption is driven by narrowly imagining that benefit and loss for insurers are determined solely or mainly by the insurers' power to keep unfavorable risks out of the insured pool.

Many scholars have argued forcefully that we should have moral qualms about placing certain limitations on individuals' employment and insurance-purchasing opportunities because of their genetic predispositions. Among those whose discussions explicitly address, or can be extrapolated to, disability insurance are Greely H. T. , “Genotype Discriminations: The Complex Case for Legislative Protection,” University of Pennsylvania Law Review 149 (2001): at 1500; Dolgin J. L. , “Personhood, Discrimination and the New Genetics,” Brooklyn Law Review 66 (2000–01): 786–87; Gostin L. , “The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers,” American Journal of Law & Medicine 17 (1992): 110–111.

For example, Collins Francis , Director of the Human Genome Project, has testified before Congress that even now citizens are declining to serve as subjects in genetic research out of fear that the results, preserved in their medical records, could limit their opportunities to be employed or insured. See Genetic Information in the Workplace: Hearing Before the Senate Comm. on Health, Education, Labor and Pensions, 106th Cong., 2000, (prepared testimony of Collins Francis S. M.D., Ph.D., Director of the National Human Genome Research Institute).

The Merriam-Webster Online available at <http://www.m-w.com/> (last visited March 20, 2007).

Available at <http://www.survivorsguide.org/>.

Garland R. , The Eye of the Beholder: Deformity and Disability in the Graeco-Roman World (Ithaca, NY: Cornell University Press, 1995): 36–37.

Obermann C. E. , A History of Vocational Rehabilitation in American 5th ed. (Minneapolis, MN: T.S. Dennison, 1968): at 137.

Silvers A. Wasserman D. and Mahowald M. , Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy (Lanham, Maryland: Rowman and Littlefield, 1998): 53–54.

Wallace B. , “‘Blind Massage’ Law in S. Korea Draws Protests,” Chicago Tribune, November 23, 2006, available at <http://www.chicagotribune.com/news/nationworld/chi-0611230249nov23,1,1326781.story?coll=chinewsnationworld-hed> (last visited April 10, 2007). See also “South Korea: Blind Massage Therapists Fight for Their Right to Work,” Blind World magazine, available at <http://www.home.earthlink.net/∼blindworld/NEWS/6-06-05-01.htm> (last visited March 20, 2007).

See Silvers , “Formal Justice” in Silvers, Wasserman, and Mahowald, supra note 8 for historical details and philosophical analysis of the development of our conception of disability and its linkage to occupational roles.

It is worth noting that the role of social practice in making health insurance benefit claims may be underestimated. To at least some extent, social practice determines what conditions count as diagnosable diseases that deserve the attention of physicians. An extensive literature establishes this point, but its implications for the economics of health insurance have been little studied. See such books as Kasper A. , Breast Cancer: Society Shapes an Epidemic: The Social Construction of an Illness (New York: St. Martin's Press, 2000); Hacking I. , Rewriting the Soul: Multiple Personality and the Sciences of Memory (Princeton, NJ: Princeton University Press, 1995); Mattingly C. and Garro L. C. , eds., Narrative and the Cultural Construction of Illness and Healing (Berkeley, CA: University of California Press, 2001); Thomas C. G. , Recovering Bodies: Illness, Disability, and Life Writing (Madison, WI: University of Wisconsin Press, 1997); Susan S. , No Longer Patient: Feminist Ethics and Health Care (Philadelphia, PA: Temple University Press, 1992).

For purposes of this discussion, to be asymptomatic is to manifest no health-related inability to perform the activities of work or of daily life. An individual who tests positive for the presence of an infectious agent or of an allele associated with an inherited disease can be asymptomatic in the sense used here. This is a somewhat more stringent account of being asymptomatic than is usually invoked by the concept. See Chevron U.S.A. v. Echazabal, 122 S. Ct. 2045 (2002).

Chevron U.S.A., Inc. v. Mario Echazabal, Brief of the American Public Health Association, the American Association for the Study of Liver Disease, the Hepatitis C Action and Advocacy Coalition, the Hepatitis C Association, the Hepatitis C Outreach Project, and LAMBDA Legal Defense and Education Fund, as Amici Curiae, available at <http://www.bazelon.org/publichealthbrief.html> (last visited March 20, 2007). Overdoses of Tylenol, or acetaminophen (the generic name), can cause liver damage. However, people with Hepatitis C infections, even those who already have sustained liver damage, do not appear to be at increased risk of liver damage from acetaminophen. See <http://hepcvets.com/drugs/tylenol.html> (last visited March 20, 2007). The APHA . amicus brief argues that hepatoxic chemicals such as those present at the Chevron refinery cause liver damage only if present in toxic amounts, in which case exposure threatens liver damage in all workers equally.

See APHA . amicus brief, supra note 13.

See Chevron , supra note 13, at 2052.

See Brief of APHA , supra note 13. See also supra note 10. This summary is drawn from Silvers A. and Stein M. A. , “Human Rights and Genetic Discrimination: Protecting Genomics' Promise for Public Health,” Journal of Law, Medicine & Ethics 31, no. 3 (2003): 377–389. For a detailed analysis of the Supreme Court decision, see this article.

Albertson's, Inc. v. Kirkingburg, 527 U.S. 555 (1999).

Casey Martin v. PGA Tour, 121 S. Ct. 1879 (2001)

Cleveland v. Policy Mgmt. Sys. Corp, 526 U.S. 795 (1999)

See news reports available at <http://slate.msn.com/id/2062604/> (last visited March 20, 2007); and <http://www.adaptenv.org/neada/ill_worker.php>.

Sarkar P. , “Chevron Refinery Fined $300,000: 52 Air Quality Violations from 1998 to May. Chevron Considers $300,000 as a Small Cost of Doing Business,” San Francisco Chronicle, July 10, 2001, available at <http://www.mindfully.org/Air/Chevron-Richmond-$300000.htm> (last visited March 20, 2007).

See Chevron , supra note 13.

See “Informed Consent” in the Encyclopedia of Everyday Law, available at <http://law.enotes.com/everyday-law-encyclopedia/informed-consent> (last visited March 20, 2007).

See news report available at <http://slate.msn.com/id/2062604/> (last visited March 20, 2007).

It is important to note the difference between rash action and risk-assuming action. The latter is responsibility-catering, while the former is irresponsible. To fail to make this kind of distinction in the context of Echazabal threatens our basic conception that responsibility for the future course of their health lies largely with asymptomatic and pre-symptomatic individuals.

See Chevron , supra note 13, at 2052.

Goffman E. , Stigma: Notes on the Management of Spoiled Identity (New York: Simon and Schuster Trade Paperbacks, 1986).