Newly passed legislation signed by President Bush late last month will
protect Americans from discrimination by insurers and employers due to their
genetic makeup or family history.
APA has advocated for the measure for many years while also being vocal
about ensuring patient confidentiality.
Specifically, the Genetic Information Nondiscrimination Act (GINA) of 2008
bars health insurers from canceling, denying, refusing to renew, or changing
the terms or premiums of coverage based solely on an individual's genetic
predisposition toward a specific disease. It also forbids employers from using
an individual's genetic information when making hiring, firing, promotion, and
other employment-related decisions.
The health insurance protections have up until 12 months of the law's
signing to go into effect, and the employment protections have 18 months. The
law directs the departments of Health and Human Services, Labor, and Treasury
to enforce its provisions.
The U.S. Congressional Budget Office reported that one result of the
measure is that more people will qualify for individual health insurance
plans, since some insurers that sell such plans are already using genetic test
results to deny coverage.
"Since no one is born with perfect genes, each one of us is a
potential victim of genetic discrimination," said Rep. Louise Slaughter
(D-N.Y.), the bill's sponsor, in a written statement. "By prohibiting
the improper use of genetic information, this bill encourages Americans to
undergo the testing necessary for early treatment and prevention of
The law addresses a number of widely held concerns.
Some supporters of the legislation said it was a necessary follow-up to the
federal government's $3.7 billion Human Genome Project, completed in 2003,
because it would ensure that genetic information derived as a result of that
research would not be used against individuals.
"The concern is that once we become more sophisticated with genetic
profiles, we will be able to eliminate the potentially sick from health
insurance" plans, said Steven Sharfstein, M.D., a former APA president
and president and CEO of Sheppard Pratt Health System, at APA's 2008 annual
meeting in May. "But that's not how it should work."
Genetic testing offers tremendous promise in identifying existing and
potential health concerns, according to APA Medical Director James H. Scully
Jr., M.D. However, patients may be reluctant to participate in clinical
studies that require such testing, and others may forego screening and
potentially lifesaving treatment due to concerns about potential misuse of the
Indeed, a 1997 Department of Labor report documented that 63 percent of
individuals surveyed said they would refuse to take genetic tests if insurers
or employers could access their private results.
Thus, GINA also establishes a Genetic Nondiscrimination Study Commission to
review the developing science of genetics and advise Congress on the need for
This is the same measure that Sen. Tom Coburn (R-Okla.) had placed a hold
on in 2007 over his concerns and those of some business leaders that it could
have unintended consequences for claims processing, medical records, and
information sharing with law enforcement (Psychiatric News, May 18,
2007). Supporters eventually negotiated a compromise version that addressed
these issues satisfactorily for the senator and others.
The Genetic Information Nondiscrimination Act can be accessed at<http://thomas.loc.gov>
by searching on the bill number, HR 493. ▪