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Tourette Syndrome (TS) is a genetically based disorder, TSA 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 bipartisan Genetic Information Nondiscrimination Act (S. 358 and H.R. 493) will establish strong protections against discrimination based on genetic information both in health insurance and employment. Support for the bill has come from a wide range of organizations representing patients, medical professionals, families and employees. We should give all Americans the comprehensive protections against genetic discrimination in health insurance and employment they deserve by enacting this important legislation.
With regard to health insurance discrimination, the Act will:
PROHIBIT enrollment restriction and premium adjustment on the basis of genetic information or genetic services;
PREVENT health plans and insurers from requesting or requiring that an individual take a genetic test;
PREVENT health plans and insurers from pursuing or being provided information on predictive genetic information or genetic services prior to enrollment – the time when this information is most likely to be used in making enrollment decisions; and
COVER all health insurance programs, including those regulated by the federal government under ERISA, state-regulated plans, Medigap, and the individual market.
With regard to employment discrimination, the Act will:
PROHIBIT discrimination in hiring, compensation, and other personnel processes;
PROHIBIT the collection of genetic information, and allow genetic testing only to monitor the adverse effects of hazardous workplace exposures;
REQUIRE genetic information possessed by employers to be confidentially maintained and disclosed only to the employee or under other tightly controlled circumstances; and
COVER employers, employment agencies, labor organizations, and training programs.
©2007 Tourette Syndrome Association, Inc. 42-40 Bell Boulevard / Bayside NY 11361 / 718-224-2999