For those with Jewish ancestry, it makes the 25-condition test panel for Ashkenazi genetic conditions even more advisable. Information is available at DNATraits. Every Jewish family can help eradicate these tragic diseases in the same way that Tay Sachs has been nearly eliminated since widespread community testing has become common.
Amy Harmon's New York Times story is here.
The legislation, which President Bush has indicated he will sign, speaks both to the mounting hope that genetic research may greatly improve health care and the fear of a dystopia in which people’s own DNA could be turned against them.
On the House floor on Thursday, Democrats and Republicans alike cited anecdotes and polls illustrating that people feel they should not be penalized because they happened to be born at higher risk for a given disease.
“People know we all have bad genes, and we are all potential victims of genetic discrimination,” said Representative Louise M. Slaughter, Democrat of New York, who first proposed the legislation. The measure passed the House on Thursday by a 414-to-1 vote, and the Senate by 95-to-0 a week earlier.
If the bill is signed into law, more people are expected to take advantage of genetic testing and to participate in genetic research. Still, some experts said people should think twice before revealing their genetic information.
The story mentions Senator Tom Coburn (R-OK) who had blocked the bill until wording was added to protect employers from lawsuits resulting from insurance company violations. The US Chamber of Commerce argued that fines were excessive (as much as $300,000 for each violation) and that the limits on collecting medical information would be complicated.
“This clears away what in many people’s mind had been a real cloud on the horizon,” said Dr. Francis S. Collins, director of the National Human Genome Research Institute at the National Institutes of Health. “Families with a strong history of genetic disease will have one less worry about the circumstances they find themselves in, and hooray for that.”
The Scientific American website carries an article, "Congress Passes Bill Barring Genetic Discrimination - Action culminates more than a dozen years of legislative haggling."
Since no one is born with perfect genes, we are all potential victims of genetic discrimination. This legislation marks the beginning of a new era in health care where a person's genetic information can no longer be used against them,'' bill sponsor Rep. Louise Slaughter (D-N.Y.) said after the legislation sailed through the House. "By prohibiting the improper use of genetic information, Americans will be encouraged to take advantage of the tremendous life-altering potential of genetic research."
The first anti-discrimination genetic legislation was introduced by Slaughter, who is is a microbiologist with a public health master's degree. Today, more than 1,000 genetic tests are available to diagnose or assess the risk of potentially life-threatening diseases.
Consumer groups said the GINA passage will close state law gaps and encourage Americans to take advantage of potentially lifesaving genetic testing without fear of being denied coverage.
American Society of Human Genetics executive vice president Joann Boughman said that "researchers and clinicians can now actively encourage Americans to participate in clinical trials without the fear of genetic discrimination," and protected by GINA, health care practitioners will be able to recommend appropriate genetic testing and screening without fear of discrimination based on results.