Genetic Exceptionalism and Legislative Pragmatism

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, CT: Yale University Press, 1997).

See National Conference of State Legislatures, State Genetic Discrimination in Health Insurance Laws, available at <http://www.ncsl.org/programs/health/genetics/ndishlth.htm> (last visited March 20, 2007), and National Conference of State Legislatures, State Genetic Discrimination in Employment Laws, available at <http://www.ncsl.org/programs/health/genetics/ndiscrim.htm> (last visited March 20, 2007).

The Genetic Information Nondiscrimination Act of 2005, S.306, 109th Cong., 1st Sess., was passed by the Senate on February 17, 2005 by a vote of 98–0. A companion bill, H.R. 1227, 109th Cong. 1st Sess., was introduced into the House of Representatives on March 10, 2005. Given prior failed attempts, House passage of the bill remains doubtful.

See Hellman D. , “What Makes Genetic Discrimination Exceptional?” American Journal of Law & Medicine 29 (2003): 77–116.

See Rothstein M. A. , “Genetic Privacy and Confidentiality: Why They Are So Hard to Protect,” Journal of Law, Medicine & Ethics 26, no. 3 (1998): 198–203; Rothstein M. A. and Anderlik M. R. , “What Is Genetic Discrimination and When and How Can It Be Prevented?” Genetics in Medicine 3 (2001): 354–58; Suter S. M. , “The Allure and Peril of Genetic Exceptionalism: Do We Need Special Genetics Legislation?” Washington University Law Quarterly 79 (2001): 669–748; Wolf S. M. , “Beyond ‘Genetic Discrimination’: Toward the Broader Harm of Geneticism,” Journal of Law, Medicine & Ethics 23, no. 4 (1995): 345–53.

See Andrews L. B. Mehlman M. J. and Rothstein M. A. , Genetics: Ethics, Law and Policy (St. Paul, MN: West Group, 2002).

42 U.S.C. Secs. 12101–12213.

Hoffmann D. E. and Wulfsberg E. A. , “Testing Children for Genetic Predispositions: Is It in Their Best Interest?” Journal of Law, Medicine & Ethics 23, no. 4 (1995): 331–44.

Committee on Assessing Genetic Risks, Institute of Medicine, Assessing Genetic Risks: Implications for Health and Social Policy (Washington, D.C.: National Academy Press, 1994): at 105.

In 1999, 174 million of 240 million nonelderly Americans had private coverage, of whom more than 160 million received it as an employee or the dependent of an employee in an employer-sponsored group health plan. U.S. Bureau of the Census, Current Population Survey (CPS): Annual Demographic Survey, March 2000, Supplement: at Table HI05—Health Insurance Coverage Status and Type of Coverage by State: 1999 (2000), available at <http://pubdb3.census.gov/macro/032000/health/01_001.htm (last visited March 20, 2007).

42 U.S.C. Secs. 300gg-300gg-2.

42 U.S.C. Secs. 300gg(b)(1)(B), 300gg-1(a)(1)(F).

42 U.S.C. Secs. 300gg(b)(1)(B), 300gg-1(a)(F).

See Tex. Lab. Code Ann. Secs. 21.401–402 (enacted 1997) (defining genetic information as the results of a DNA-based test).

See N.J. Stat. Ann. Secs. 10:5–12 (enacted 1996) (defining genetic information to include “inherited characteristics that may derive from an individual or family member”).

Khoury M. J. Burke W. and Thomson E. J. , “Genetics and Public Health: A Framework for the Integration of Human Genetics into Public Health Practice,” in Khoury M. J. Burke W. and Thomson E. J. , eds., Genetics and Public Health in the 21st Century (New York: Oxford University Press, 2000): at 7.

Rothstein M. A. , “Genetics, Insurance, and the Ethics of Genetic Counseling,” in Friedmann T. , ed., Molecular Genetic Medicine vol. 3 (San Diego, CA: Academic Press, 1993).

Rothstein M. A. , “Genetics Secret: A Policy Framework,” in Rothstein M. A. , ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven, CT: Yale University Press, 1997): at 475–79.

See National Committee on Vital and Health Statistics, Shaping a Health Statistics Vision for the 21st Century, 2002; National Committee on Vital and Health Statistics, Information for Health: A Strategy for Building the National Health Information Infrastructure, 2001, available at <http://aspe.hhs.gov/sp/nhii/Documents/NHIIReport2001/default.htm (last visited March 29, 2007).

Rothstein M. A. , “Policy Recommendations,” in Rothstein M. A. , ed., Genetics and Life Insurance: Medical Underwriting and Social Policy (Cambridge, MA: MIT Press, 2004).

See Daniels N. , “The Functions of Insurance and the Fairness of Genetic Underwriting,” in Genetics and Life Insurance: Medical Underwriting and Social Policy, Rothstein M. A. , ed. (Cambridge, MA: MIT Press, 2004); Lemmens T. , “Selective Justice, Genetic Discrimination, and Insurance: Should We Single Out Genes in Our Laws?” McGill Law Review 45 (2000): 347–412.

See Rothstein , supra note 5.

Ostrager B. R. and Newman T. R. , Handbook on Insurance Coverage Disputes 10th ed. (New York: Aspen Law & Business, 2000): at Sec. 12–03 [b],[c].

See Hall M. A. , “Legal Rules and Industry Norms: The Impact of Laws Restricting Health Insurers' Use of Genetic Information,” Jurimetrics Journal 40 (1999): 93–125.

See Lapham E. V. , “Genetic Discrimination: Perspectives of Consumers,” Science 274 (1996): 621–24.

Cal. Gov't Code Secs. 12926, 12940; Minn. Stat. Ann. Secs. 363.01–02.

See Rothstein M. A. , “Protecting Genetic Privacy by Permitting Employer Access Only to Job-Related Employee Medical Information: Analysis of a Unique Minnesota Law,” American Journal of Law & Medicine 24 (1998): 399–417.

Or. Rev. Stat. Sec. 192.537 (2001).

See Rothstein M. A. and Carnahan S. , “Legal and Policy Issues in Expanding the Scope of Law Enforcement DNA Data Banks,” Brooklyn Law Review 67 (2001): 127–78.