President Bush signed the Genetic Information Nondiscrimination Act of 2008 (GINA) into law last week. This law prohibits discrimination of applicants and employees based on genetic information. Senator Ted Kennedy who worked on this legislation for over ten years, referred to it as the first major new civil rights bill of the new century. It passed in the House 414-1 and in the Senate 95-0.
Genetic information is defined as an individual’s own tests; the genetic tests of family members; and the manifestation of a disease or disorder in family members. Family member is defined as the spouse; a dependent child, including an adopted child; a parent, grandparent or great-grandparent of an individual.
The bill was first introduced in 1995 by Representative Louise Slaughter, D-NY. Opponents pointed to the lack of employment discrimination case law based on genetic information. Proponents argued the law was needed to eliminate fear of adverse action which caused people to decline clinical testing that may warn of or ameliorate a medical condition. Slaughter recently stated, Americans can finally take advantage of the tremendous potential of genetic research without fear that their own genetic information will be used against them.
There are two pieces to this legislation. This legislation prohibits genetic discrimination by employers or health insurers; Title II Employment Discrimination and Title I Health Insurance. The Equal Employment Opportunity Commission has a year to issue final regulations and the Employment Discrimination law will be effective 18 months after enactment. The Department of Health and Human Services will have nine months to issue final health insurance regulations under Title I, with those regulations becoming effective in one year.
GINA will forbid employers from taking any adverse action such as firing, refusing to hire, or otherwise discriminating with respect to conditions of employment based on genetic information. It will prohibit employers and health insurance companies from requesting, requiring, purchasing or disclosing genetic information. It also prohibits insurance companies from restricting enrollment or adjusting premiums for health insurance based on genetic information.
Health Insurance Portability and Accountability Act of 1996 (HIPAA) will be amended to include genetic information which now must be treated as health information restricting its use and disclosure. Title I will include significant penalties, especially for self-insured employer plans.
Though the law is bound to change as cases are challenged, currently disparate impact does not establish cause; meaning this law limits itself to intentional discrimination. GINA also includes a provision to prevent double-jeopardy between employer and health insurers.