The Genetic Information Nondiscrimination Act (GINA) was signed into Federal law on May 21, 2008, a full 17 years after the legislation was introduced. When more than a year from now it is enforceable and finally trickles down to Huntington's people, GINA will help prevent discrimination by employers and medical insurers -- but only for those without symptoms, and within certain limitations. It is important to know what GINA does --and does not do.

Adapted from an article by Francis S. Collins, M.D., Ph.D.[Hudson KL 2008]

What GINA Does:

  • Prohibits group and individual health insurers from using a person's genetic information in determining eligibility or premiums. This does not apply to those already with a medical diagnosis of HD
  • Prohibits an insurer from requesting or requiring that a person undergo a genetic test.
  • Prohibits employers from using a person's genetic information in making employment decisions such as hiring, firing, job assignments, or any other terms of employment. But you will have to prove it.
  • Prohibits employers from requesting, requiring, or purchasing genetic information about persons or their family members.
  • Will be enforced by the Department of Health and Human Services, the Department of Labor, and the Department of Treasury, along with the Equal Opportunity Employment Commission; remedies for violations include corrective action and monetary penalties. However the penalties have a fairly low monetary value.

What GINA Does Not Do:

  • Does not prevent health care providers from recommending genetic tests to their patients.
  • Does not mandate coverage for any particular test or treatment.
  • Does not prohibit medical underwriting based on current health status. Or if you already have a diagnosis of HD.
  • Does not cover life, disability, or long-term-care insurance.
  • Does not apply to members of the military.

References

Hudson KL, Holohan MK, Collins FS. Keeping pace with the times--the Genetic Information Nondiscrimination Act of 2008. N Engl J Med. 2008 Jun 19;358(25):2661-3. doi: 10.1056/NEJMp0803964. PubMed abstract