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[1] U.S. Senate Approves Genetic Privacy Legislation
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The U.S. Senate passed the Genetic Information Nondiscrimination Act
(“GINA”) on April 24 with a vote of 95-0. The bill addresses the risk
that advances in genetics open new opportunities for medical progress
and will also give rise to the potential misuse of genetic data to
discriminate. The genetic privacy bill seeks to establish a national
standard to prohibit genetic discrimination by health insurance
providers and employers. Under the bill, these entities cannot require
genetic testing, cannot determine premiums or eligibility for insurance
or employment based on genetic information, and are limited in their
collection and use of genetic data.
“A person’s unique genetic code contains the most personal aspects of
their identity. As we begin to decipher this information, Americans
have legitimate fears about how this deeply private information will be
used,” said bill co-sponsor Sen. Edward Kennedy. The legislation “takes
a substantial step to preserve the value of new genetic technology and
protect the basic rights of every American,” said bill co-sponsor Sen.
Edward Kennedy.
However, experts caution against too much optimism over the legislation.
“Perhaps the greatest risk posed by enacting GINA would be that
lawmakers might become complacent and believe that the problem of
genetic discrimination in health insurance and employment has been
adequately addressed by the new federal law,” noted Mark Rothstein in a
recent analysis of the legislation in the Journal of Law, Ethics and
Medicine. He is Director of the Institute for Bioethics, Health Policy
and Law at the University of Louisville School of Medicine.
The bill, which passed the Senate in 2003 but died in the House, was
reintroduced on January 16. Now that it has passed the Senate, the bill
goes back to the House; President Bush has said he supports the
legislation.
Genetic Information Nondiscrimination Act, S. 358:
Institute for Bioethics, Health Policy and Law at the University of
Louisville School of Medicine:
EPIC page on Genetic Privacy:
