Prohibiting Genetic Discrimination

Publication: New England Journal of Medicine

Author: Kathy L. Hudson, Ph.D.


05/17/2007 - Even before the sequencing of the human genome began in earnest, Americans started worrying about how information about their genetic makeup might be used in harmful ways, and policymakers began considering legislation to prevent misuses of genetic information. The Genetic Information Nondiscrimination Act, which would prohibit health insurers and employers from asking or requiring a person to take a genetic test and from using genetic information in setting insurance rates or making employment decisions, passed unanimously in the Senate in 2003 and again in 2005. The bill remained stalled in the House of Representatives, however, apparently because the House leadership was sympathetic to the few employer and business groups that oppose the bill. This year, with its new Democratic majority in place, Congress has taken up the bill once again.

Enactment of this law would substantially enhance the current, limited protections against the use of genetic information in health insurance and the workplace. The Health Insurance Portability and Accountability Act (HIPAA) of 1996 imposed some restrictions on the use of health-related information by group health insurers in determining eligibility for benefits and setting premiums. Congress specifically listed genetic information as protected health information and explicitly stated that a genetic risk factor for disease could not be considered a preexisting condition. Subsequently, in promulgating privacy regulations called for by HIPAA, the Department of Health and Human Services made clear that access to and disclosure of genetic information are protected. But though HIPAA restricted the ability of insurers to charge different premiums to persons within a group on the basis of genetic information, it did not limit their ability to use such information to raise the rates for the entire group. HIPAA also did not address the use of genetic information for underwriting in the individual-insurance market.

As for the workplace, the Equal Employment Opportunity Commission has interpreted the Americans with Disabilities Act (ADA) as providing some protections against the use of genetic information by employers, but the extent of those protections is unclear and largely untested. The ADA prevents workplace discrimination based on a disability, the history of a disability, or a perceived disability. However, legal experts have concluded that additional clarification is needed to ensure that genetic information cannot be used to discriminate in employment decisions such as hiring, firing, job assignments, and promotions.

Read the complete article, Prohibiting Genetic Discrimination. (PDF)

Pew is no longer active in this line of work, but for more information, visit the Genetics & Public Policy Center Web site or visit the Genetics and Public Policy Centeron PewHealth.org.

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