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Genetic Privacy & Discrimination

President Bush signed the Genetic Information Nondiscrimination Act (GINA) of 2008 into law on May 21, 2008. The law makes it illegal for health insurers or employers to discriminate against individuals based on their genetic information. All provisions of the law will take effect within 18 months of the signing.

Genetic testing has grown dramatically in the past decade, and increasingly is becoming an integral part of health care. Genetic tests can help diagnose genetic conditions and guide treatment decisions, help predict risk of future disease, inform reproductive decision making, and assist medication selection or dosing.

For many years, patients who might have benefited from genetic testing avoided it – or obtained it anonymously or under assumed names – out of concern about possible repercussions. Until GINA takes effect, individuals’ genetic information is protected only by a patchwork of state and federal regulations. In a poll conducted in 2007 by the Genetics and Public Policy Center, 93 percent of Americans stated that health insurers and employers should not be able to use such information.

GINA’s passage should reassure individuals who have been hesitant to take advantage of genetic tests -- tests that are now available clinically for approximately 1200 diseases. Finally, Americans no longer have to make trade-offs between guarding their genetic privacy and benefiting from appropriate health care, such as monitoring and preventive care, based on their genetic susceptibility to disease.

GINA prevents health insurers from denying coverage, adjusting premiums on the basis of genetic information, or requesting that an individual undergo a genetic test. Similarly, employers are prohibited from using genetic information to make hiring, firing, or promotion decisions. The law also sharply limits an employer’s right to request, require, or purchase an employee’s genetic information.

Regulations to provide clear guidance on compliance with and enforcement of GINA will be developed and enforced by federal agencies with jurisdiction over GINA: the Department of Health and Human Services (including the Center for Medicare and Medicaid Services), the Department of Labor, the Equal Employment Opportunity Commission, and the Treasury Department (through the Internal Revenue Service). For more information on GINA and its implementation, see our Project GINA Web site.

Another privacy issue that has received some media attention is that of surreptitious DNA testing – that is, collection and analysis of DNA without consent, and disclosure of information derived from such analysis without the permission of the person tested. It is not known to what extent surreptitious DNA testing currently is taking place, and protections against the practice are limited and vary by state. More information on surreptitious testing, including links to analyses of the state laws that govern it, is available here.

Last updated March 2009