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Protection From Genetic Discrimination Is Almost Here
Genetic nondiscrimination legislation has been around since 1995 and has been introduced in both chambers of every Congress since then. In fact, the Genetic Information Nondiscrimination Act that passed in the House last year by a margin of 420 to 3 has already passed unanimously in the Senate during two previous sessions. GINA would prevent employers and insurance companies from using the results of genetic tests in making business decisions, or from requesting or requiring that individuals submit to tests. Supporters of the bill contend that it is only with such protections in place that patients will feel free to take genetic tests that could reveal a predisposition to certain diseases—tests that could enable them to reduce their risk through behavioral changes. A recent report in the New York Times highlighted the lengths some patients go to in order to protect the results of genetic testing from insurance companies and even health care providers. Scientists also worry that people are not participating in research involving such tests for fear that the information uncovered could be used against them by third parties.
Virtually all of the scientific and medical community support GINA–as do many advocacy groups representing patients and those with genetic conditions. A Feb. 14 editorial in Nature called on Democratic Senate Majority Leader Harry Reid to prioritize the legislation, declaring “it’s hard to imagine a more worthy cause…or a more important legacy for this Congress.” President Bush has also come out in favor of the bill, indicating the likelihood that it will become law if the Senate votes on it. And the public supports the issue, with research by the Genetics and Public Policy Center showing that more than three quarters of Americans believe that there should be a law barring employers and insurance companies from using the results of genetic tests to discriminate.
Despite widespread support and the growing need for protection from genetic discrimination, Tom Coburn (R-OK) placed a “hold” on the legislation—even though he voted in favor of GINA in 2005. Coburn has declared that he will not allow the bill to be taken up by the full Senate unless protections within the bill are weakened so that employers cannot be held accountable for certain actions. With the number of diseases for which genetic tests are available growing rapidly, and in light of the expectation that anyone will be able to obtain their entire genetic sequence for under $1,000 in the near future, passage of genetic nondiscrimination legislation should be a top priority.
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