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

660 Pennsylvania Avenue SE  Suite 302

Washington DC 20003

202-547-9359 x24

202-547-9429 fax

703-231-5956-cell

jhan...@icta.org