US HOUSE OF REPRESENTATIVES PASSES GENETIC NONDISCRIMATION ACT ON April 25, 2007
Jaydee Hanson
HOUSE PASSES GENETIC NONDISCRIMATION ACT ON April 25, 2007
Dear Colleagues:
For more than a decade, the staff at the International Center for Technology Assessment has worked to get Congress to pass comprehensive legislation to protect individuals from discrimination in health insurance or employment. On Wednesday, April 26, 2007, The US House of Representatives voted 420-3 to pass H.R. 493.
The bill makes it illegal for a health plan or insurer to deny coverage or charge higher premiums to a healthy person based solely on a genetic predisposition to a disease. Similarly, an employer could not use genetic information in making hiring, firing or promotion decisions.
Rep. Louise M. Slaughter, D-N.Y., the chief sponsor, is now in the leadership of the House of Representatives and worked to get the bill through all three House committees that it had to pass through. In previous years, the pro-business Energy and Commerce Committee Chair, Rep. Barton (R-TX) had blocked consideration of the bill despite strong Republican support in both the House and the Senate. Since Slaughter first introduced a genetic nondiscrimination bill 12 years ago, the Senate has twice passed a measure similar to the bill the House just passed. Many states have likewise passed bills, but there has been no comprehensive federal legislation baring genetic discrimination.
Rep. Judy Biggert, R-Ill., the lead Republican sponsor likewise worked hard to pass a bill that would have strong bi-partisan support.
For years studies have documented genetic discrimination. A 1989 study by Dr. Paul Billings, then at Harvard University, documented that even that early more than 1000 persons had already been discriminated against. Georgetown University sociologist, Virginia Lapham Oct 25, 1996 study in Science Magazine found that 25 percent of people believed that genetic information had been used to deny them or family members life insurance, 22 percent believed that their information had been used by health insurers to deny them insurance, and that 13 percent believed the information had resulted in job discrimination. In the debate on the bill, lawmakers noted that some people forgo genetic testing for fear of losing jobs or health benefits. They said there have been instances of discrimination against people with family histories of sickle cell anemia, Huntington's disease, certain cancers and other diseases.
The White House has said that President Bush will sign the bill when it passes the Senate. In a statement, the White House noted that "Concern about unwarranted use of genetic information threatens the utilization of existing genetic tests as well as the ability to conduct further research.”
The Senate Health, Education, Pensions and Labor Committee approved legislation by Sen. Olympia Snowe, R-Maine. (S 358), 19-2, on Jan. 31. It would forbid insurers and employers from requiring people to submit to genetic testing or from using genetic information to deny people insurance coverage, raise insurance premiums, or hire and fire workers. The bill awaits action by the full Senate.
The Senate bill does not include the House amendments related to discrimination against a family based on tests performed on their fetuses or embryos.
Senator Tom Coburn (R-OK) has placed a block on the bill preventing its being voted. According to the pro-life Religious Freedom Coalition, Senator Coburn is attempting to expand the bill to cover prenatal children as well, not just the prospective family members of the fetus.
Jaydee Hanson
Director for Human Genetics Policy
International Center For Technology Assessment
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Washington DC 20003
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