View Full Version : Tourette Syndrome Association Celebrates the Senate Passage

10-19-03, 12:06 PM
Tourette Syndrome Association Celebrates the Senate Passage of Genetic Nondiscrimination Legislation

Long-Awaited Legislation Will Protect Against Healthcare and
Employment Discrimination

BAYSIDE, NY -- (MARKET WIRE) -- 10/14/2003 -- The national Tourette Syndrome Association (TSA), a membership driven, non-profit organization dedicated to serving all people with Tourette Syndrome (TS), hails the vote in the United States Senate approving comprehensive legislation to ban genetic discrimination in health insurance and employment.

"For almost a decade, TSA has been vigorously advocating for this legislation," said Judit Ungar, TSA President. "Our members, and all those with inherited conditions, will benefit enormously in terms of discrimination in both healthcare coverage and privacy issues."

S. 1053, the Genetic Information Nondiscrimination Act, would prevent health insurers and employers from using an individual's genetic predisposition to a disease as a basis for denying them health coverage or a job. Health insurers would be prohibited from using predictive genetic information to deny, change, refuse or renew, or change the terms, premiums or conditions of coverage. Employers would be barred from using this genetic information in making employment-related decisions, such as those related to hiring, firing, promotions, or other job-related issues.

With Senate action completed, the focus now shifts to the House of Representatives. While two House committee held hearings on genetic discrimination in 2001, no action has occurred since that time.

"We are optimistic that the House will act swiftly now that the
Senate has realized the importance and necessity of this
legislation," said Ungar.

In the House, TSA has endorsed H.R. 1910, Genetic Information
Nondiscrimination in Health Insurance and Employment Act. Sponsored by Rep. Louise Slaughter (D-NY), this legislation has been endorsed by over 300 organizations. It also has strong bipartisan backing, with almost 50 Republican signing on and key GOP leaders, such as Committee on House Administration Chairman Bob Ney, signaling their support.

"Representative Slaughter and her staff are to be keenly appreciated by the public for their crucial role in championing this
legislation," Ungar said.

"Tourette Syndrome is a genetically based disorder and our members are concerned about being denied insurance or employment, without any reference to their actual condition, their ability to perform in a job, or the cost of their medical care, simply because there may be a history of TS in their family. Without protections on the disclosure and use of genetic information people will be reluctant to participate in critical research, undertake certain types of therapies, or give a full family medical history to treating physicians."

The Tourette Syndrome Association is joining dozens of others in
calling upon the House of Representatives leadership to schedule a vote on S. 1053 as quickly as possible. Passage of this initiative
is crucial to ensuring the future of genetic research and the
ability of all Americans to take advantage of genetic tests without
fearing the information they obtain will be used against them.

Marked by involuntary twitching and vocal tics, TS is an inherited,
neurobiological disorder frequently misunderstood and is diagnosed, affecting more than 200,000 Americans. TSA is a national voluntary organization that directs a network of 50 chapters and more than 300 support groups across the country.