Genetic Information Nondiscrimination Act (GINA)

People with Tourette Syndrome and their families are concerned about being denied insurance or employment, 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 or H.R. 493), passed by Congress and signed into law, establishes strong protections against discrimination based on genetic information, both in health insurance and employment. Support for this legislation came from a wide range of organizations representing patients, medical professionals, families and employees. The new law will give all Americans the comprehensive protections against genetic discrimination in health insurance and employment they deserve.

With regard to health insurance discrimination, the law 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.
    • 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 law 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.

More recently, the Office of Civil Rights within the Department of Health and Human Services (HHS) issued a Proposed Rule that provides a new federal baseline level of protection against genetic discrimination in health care coverage and employment, attempts to implement new privacy and confidentiality protections, which deal with nondiscrimination in health care coverage, and makes changes to the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule. The Privacy Rule protects individuals’ health information by limiting how it can be used or disclosed by “covered entities,” which includes health insurers and plans.

First, the proposed rule clarifies that genetic information is protected health information and therefore subject to the Privacy Rule.

Second, GINA requires HHS to change the Privacy Rule to prohibit health plans from using or disclosing genetic information for underwriting purposes, including determining eligibility or benefits, calculating premiums or contribution amounts, and imposing pre-existing condition exclusions.

Third, The Office of Civil Rights proposes to require plans that use or disclose protected information for underwriting purposes to include a statement in their Notice of Privacy Practices that they are prohibited from using or disclosing genetic information for underwriting purposes.