by Susan Brinkmann, OCDS
Staff Writer
(May 23, 2008) Imagine being denied a job because you have a predisposition to a certain disease, or losing your health insurance for refusing to abort a child that received a poor pre-natal diagnosis. These and other acts of “genetic discrimination” are now illegal, thanks to a new bill signed into law yesterday.
The Genetic Information and Nondiscrimination Act (GINA) will protect individuals from having to pay more for insurance or from being refused employment because they have a genetic disposition toward a certain disease. The bill also included important language protecting families from discrimination based upon genetic abnormalities found in their unborn children and from losing their health care benefits for refusing to abort a child found to have a genetic disorder during pre-natal screening.
“After a very long wait, Americans can now be confident that their genetic information cannot be used by health insurers or employers in harmful or hurtful ways,” said Kathy Hudson, director of the Genetics and Public Policy Center, established at Johns Hopkins University by The Pew Charitable Trusts.
“Our challenge now is to make sure that doctors and patients are aware of these new protections so that fear of discrimination never again stands in the way of a decision to take a genetic test that could save a life.”
Concerns about genetic discrimination have been emerging along with advances of the human genome project. The Council for Responsible Genetics issued a report detailing numerous cases of genetic discrimination that have already taken place.
In one case, genetic tests done on a seven year old boy in perfect health discovered found that he has a predisposition to a heart disorder. Even though he began taking medication to reduce the risk of a problem, his insurance company dropped his health coverage saying that because the gene was present since birth, it qualifies as a pre-existing medical condition.
A social worker who had been receiving outstanding performance reviews was abruptly fired just one week after revealing during a staff workshop that she had a 50 percent chance of developing Huntingdon’s disease.
The fear of discrimination can also prevent people from receiving the tests they need. The Council cites the case of a young woman with a family history of breast cancer who considered being tested for BRCA-1, the gene associated with some forms of hereditary breast cancer, but ultimately decided against the test, fearing it would jeopardize her chances for promotion.
Opponents of the new law fear that this legislation might spark a wave of frivolous lawsuits and force employers to offer health coverage for a host of genetically-related conditions.
However, none of these fears were enough to prevent bipartisan congressional support for the bill. The House version of the bill passed 420-3 and the Senate passed it on a unanimous 95-0 vote late last month.
“This bill protects our citizens from having genetic information misused,” said President Bush during a May 22 signing of the bill, “and does so without undermining the basic premise of the insurance industry.”
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