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GINA is now the law of the land

I wasn't able to get wireless access the last few days I was away at the American Thoracic Society meeting. I did some blogging on the plane on the way home, but I fell asleep as soon as I walked into my apartment. I didn't even eat dinner! So, needless to say, I'll have to post those entries this evening. In the meantime, thought I'd pass along some of the coverage associated with President Bush signing the Genetic Information Non Discrimination Act or GINA. I, personally, am happy to see this pass, although since I already have an active diagnosis, it might not help me. But, I think it will be a great help to those who suspect they might have HPS, or any other genetic condition (even though the diagnostic test for HPS is a blood test) but don't yet have symptoms. Early diagnosis just isn't a bad thing. Here's a story from the Chicago Tribune. If you go to the story its self, you can leave comments.

Genetic information now protected, but watch out

President Bush this afternoon signed the Genetic Information Nondiscrimination Act, a landmark piece of legislation for the dawning age of genetic medicine.

The act makes it illegal for insurers to require people to take genetic tests or use information about an individual’s DNA to deny insurance coverage or set rates.

Employers can’t ask workers about their genetic profiles, inquire about family members’ genetic status, or use information about workers’ DNA in hiring, firing, promotions or job assignments.

Experts hope the new law will encourage consumers to seek out genetic testing, when advised by physicians, without fearing that they’ll lose their jobs or insurance if the results suggest a genetic vulnerability.
Tests are currently available for about 1,500 diseases.


People who may learn they’re susceptible to illnesses such as breast cancer or colon cancer can then make lifestyle changes that can help reduce their risks. They also can arrange to get screened more often, which can help detect disease early when treatment is most likely to be successful.

Watch for a new wave of companies marketing genetic tests to consumers in the wake of the law’s passage. Consumers, know what you’re getting into before taking these tests and think carefully about what you’d do with the information before signing up. Many of the tests available give results that are difficult to interpret and of questionable value.

It’s important to note the limitations of the Genetic Nondiscrimination Act. For instance, it doesn’t prevent insurers from declining to offer coverage, based on an individual’s current health status. Nor does it require that insurers cover any genetic tests or treatments.
For a good summary of what the act does and doesn’t do, consult this
chart prepared by the Genetics & Public Policy Center at Johns Hopkins University.

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