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
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
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.
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.
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.
updated March 2009