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53 U. Louisville L. Rev. 597 (2015)
Contradiction in Terms: Genetic Nondiscrimination and Long-Term Care Insurance
Andrea Aikin*
Abstract
      On March 26, 2013, the final versions of the amendments to the Health Insurance Portability and Accountability Act (HIPAA) regulations went into effect, encompassing the mandates created by the Genetic Information Nondiscrimination Act (GINA) of 2008.1 GINA was heralded as the “first civil rights bill of the new century.” It offered protection against the threat of discrimination based on an individual’s genetic makeup. Although GINA possessed public and bi-partisan support, the Act took thirteen years from the time it was first proposed until it was eventually signed into law by President George W. Bush on May 21, 2008.
      While GINA languished in Congress, several states passed laws that addressed genetic discrimination in health insurance coverage and employment. Despite those protections, there were numerous accounts of individuals across the nation being denied health care coverage based on genetic testing and family history. Although reported instances of discrimination are relatively rare, it is impossible to know how many people have truly been affected. Regardless of the prevalence of discrimination, public opinion polls indicate that a large majority of the population fears improper use of genetic information. A 1996 study determined that 13% of those interviewed believed themselves or a family member to be a victim of employment discrimination due to a genetic condition. In 2006, 85% of survey respondents reported a belief that, without protection, employers would use genetic information to discriminate against workers. More than 80% of respondents to a 2004 survey were opposed to allowing insurers access to genetic information. Many would have agreed with the characterization of Senator Tomas A. Daschle: “We can’t afford to take one step forward in science but two steps backward in civil rights. Our laws must specify, clearly and unambiguously, how genetic information may be used and how it may not be used.”
* J.D. Candidate, May 2015, Brandeis School of Law, University of Louisville.