On Wednesday, May 21, 2008, President Bush signed the Genetic Information Nondiscrimination Act (GINA), historic legislation protecting Americans from discrimination based on the results of genetic testing. The bill was recently passed by Congress with strong bipartisan support after a 13-year struggle and dedicated efforts by a coalition of healthcare and other advocacy organizations, including the National Hemophilia Foundation (NHF).
 
"This is a tremendous victory for the hundreds of thousands of Americans affected by genetic disorders," said Val Bias, NHF CEO. "It was a long and hard effort to achieve this day."

The new law prevents employers and insurance companies from either requiring genetic test results or from using genetic information as the basis for decisions concerning employment or insurance coverage. The health insurance protections afforded by GINA are expected to roll out in one year. The employment protections will be in place within 18 months.

The legislation protects against genetic discrimination by health insurers or employers by prohibiting:

• Group health insurance plans and issuers offering coverage on the group or individual market from basing eligibility determinations or adjusting premiums or contributions on the basis of an individual's genetic information. Insurance companies cannot request, require or purchase the results of genetic tests, or disclose personal genetic information.
  
• Issuers of Medigap policies from adjusting pricing or conditioning eligibility on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose personal genetic information.
  
• Employers from firing, refusing to hire, or otherwise discriminating with respect to compensation, terms, conditions or privileges of employment. Employers may not request, require or purchase genetic information or disclose personal genetic information. Similar provisions apply to employment agencies and labor organizations.

In the bleeding disorders community, the law has particular significance for women who are considering genetic testing to determine whether they are carriers. In the past, some individuals have avoided such tests out of fear of possible discrimination. The law does not affect those who have been diagnosed with specific conditions.

NHF will continue to report on the legislation as the specific provisions are implemented. We will also provide the community with information as it becomes available on how an individual subjected to possible genetic discrimination may seek a redress of grievances.