GINA, the federal Genetic Information and Nondiscrimination Act, became effective almost a year ago. After numerous delays, the EEOC has published final regulations that provide guidance in implementing the employment provisions of the Act.  GINA prohibits use of genetic information to make decisions about health insurance and employment, and restricts the acquisition and disclosure of genetic information.  The final regulations provide examples of genetic tests; more fully explain GINA’s prohibition against requesting, requiring, or purchasing genetic information; provide model language employers can use when requesting medical information from employees to avoid acquiring genetic information; and describe how GINA applies to genetic information obtained via electronic media, including websites and social networking sites.   The regulations can be found here.

On May 1^st,  by an overwhelming 414-1 vote, the House passed a bill that prohibits genetic discrimination by employers and health insurers. The same measure sailed through the Senate (95-0) in April.  President Bush has said he will sign the legislation.  The Genetic Information Nondiscrimination Act prohibits employers from using genetic information in making employment decisions (e.g., hiring, firing) and health insurance companies from using the data to deny coverage or raise costs.  Proponents of the law hope that its passage will encourage more individuals to use genetic testing and become involved in medical research, thus improving health care. Another result may be to allow patients to be more open with their doctors regarding prior genetic tests and permit results to become part of their medical records. Individuals with family histories of genetic disease who could benefit from certain tests (e.g., breast or colon cancer) may be encouraged.   Still, some observers believe that patients should be cautious in revealing medical information.  It remains uncertain when the bill will be signed into law, although the health insurance portion would be effective one year after it becomes law and the employment section in eighteen months.  Don’t forget state law.  Some states currently have protections against genetic discrimination so, if applicable, you may need to see how these relate to the new federal measures.