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Currents in Contemporary Ethics

Is GINA Worth the Wait?

Published online by Cambridge University Press:  01 January 2021

Mark A. Rothstein
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Extract

It has been pending in Congress for twelve years, despite the support of the last two presidential Administrations and the National Institutes of Health. It has been the subject of extensive affirmative lobbying by academic medical centers, pharmaceutical and biotech companies, genetic disease advocacy groups, and civil rights organizations. It has overcome vehement objections by employers and insurers. Its final passage, however, has been thwarted by a few Congressional leaders, who have prevented enactment despite overwhelming bipartisan support in both houses of Congress.

Based on this legislative history, one could not help but assume that the Genetic Information Nondiscrimination Act (GINA) is a revolutionary piece of legislation that, if finally enacted, would provide extensive, effective, and comprehensive protection against genetic discrimination in health insurance and employment Unfortunately, such an assessment would be incorrect. Indeed, GINA may be a case of too much ado about too little.

Type
JLME Column
Information
Journal of Law, Medicine & Ethics , Volume 36 , Issue 1 , Spring 2008 , pp. 174 - 178
Copyright
Copyright © American Society of Law, Medicine and Ethics 2008

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References

Genetic Information Nondiscrimination Act of 2007, S. 358, H.R. 493, 110th Cong., 1st Sess. (2007).Google Scholar
Task Force on Genetic Information and Insurance, NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research, Genetic Information and Health Insurance, 1993, at 2.Google Scholar
National Conference of State Legislatures, State Genetic Discrimination in Insurance Laws, available at <www.ncsl.org/programs/health/genetics/charts.htm> (last visited January 3, 2008).+(last+visited+January+3,+2008).>Google Scholar
29 U.S.C. §§ 1001–1461 (2000).Google Scholar
42 U.S.C. §§ 300gg-300gg-2 (2000).Google Scholar
Id. § 300gg-1(a)(1)(F).Google Scholar
Fla. Stat. Ann. § 448.075 (West 2005).CrossRefGoogle Scholar
La. Rev. Stat. Ann. §§ 23:1001–1005 (West 2005).CrossRefGoogle Scholar
N.C. Gen. Stat. Ann. § 95–28.1 (2002).CrossRefGoogle Scholar
N.J. Stat. Ann. § 10:5–5(x)-(cc) to: 5–12 (West 2006).Google Scholar
National Conference of State Legislatures, State Genetic Discrimination in Employment Laws, available at <www.ncsl.org/programshealth/genetics/ndiscrim.htm> (last visited January 3, 2008).+(last+visited+January+3,+2008).>Google Scholar
Executive Order 13145 (February 8, 2000), 65 Fed. Reg. 6877 (February 10, 2000).Google Scholar
42 U.S.C. §§ 12101–12113 (2000).Google Scholar
Sutton v. United Air Lines, Inc., 527 U.S. 471 (1999); Murphy v. United Parcel Serv., Inc., 527 U.S. 516 (1999); Albertson's Inc. v. Kirkingburg, 527 U.S. 555 (1999).Google Scholar
See generally Rothstein, M. A. Martinez, S. A. McKinney, W. P., “Using Established Medical Criteria to Define Disability: A Proposal to Amend the Americans with Disabilities Act,” Washington University Law Quarterly 80, no. 1 (2002): 243–297.Google Scholar
Annas, G. J. Glantz, L. H. Roche, P. A., The Genetic Privacy Act and Commentary, 1995, available at <www.ornl.gov/sci/techresources/Human_Genome/resource/privacy/privacy1.html> (last visited January 3, 2008); Rothenberg, K. H. et al., “Genetic Information and the Workplace: Legislative Approaches and Policy Challenges,” Science 275 (1997): 1755–1757.Google Scholar
Hall, M. A. Rich, S. S., “Laws Restricting Health Insurers' Use of Genetic Information: Impact on Genetic Discrimination,” American Journal of Human Genetics 66 (2000): 293–307.CrossRefGoogle Scholar
Uhlmann, W. R. Terry, S. F., “Perspectives of Consumers and Genetics Professionals,” in Rothstein, M. A., ed., Genetics and Life Insurance: Medical Underwriting and Social Policy (Cambridge: MIT Press, 2004): 147–172.Google Scholar
Rothstein, M. A., “Genetic Privacy and Confidentiality: Why They Are So Hard to Protect,” Journal of Law, Medicine & Ethics 26, no. 3 (1998): 198–204.CrossRefGoogle Scholar
42 U.S.C. § 12112(d)(3) (2000).Google Scholar
Rothstein, M. A. Talbott, M. K., “Compelled Authorizations for Disclosure of Health Records: Magnitude and Implications,” American Journal of Bioethics 7, no. 3 (2007): 35–45, at 40.CrossRefGoogle Scholar
Rothstein, M. A. Talbott, M. K., “Compelled Disclosure of Health Information: Protecting Against the Greatest Potential Threat to Privacy,” Journal of the American Medical Assocation 295 (2006): 2882–2885.CrossRefGoogle Scholar
Murray, T. H., “Genetic Exceptionalism and ‘Future Diaries’: Is Genetic Information Different from Other Medical Information,” in Rothstein, M. A., ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 60–73.Google Scholar
Hellman, D., “What Makes Genetic Discrimination Exceptional?” American Journal of Law & Medicine 29, no. 1 (2003): 77–116; Rothstein, M. A., “Policy Recommendations,” in Rothstein, M. A., ed., Genetics and Life Insurance: Medical Underwriting and Social Policy (Cambridge: MIT Press, 2004); Suter, S. M., “The Allure and Peril of Genetic Exceptionalism: Do We Need Special Genetics Legislation?” Washington University Law Quarterly 79, no. 3 (2001): 669–748.Google Scholar
Rothstein, M. A., “Genetic Exceptionalism and Legislative Pragmatism,” Hastings Center Report 35, no. 4 (2005): 27–33.Google Scholar