Enact the Genetic Information Non-Discrimination Act (GINA)

Current Status

The legislation was signed into law (P.L. 110-233) by President Bush on May 21, 2008.

The bill passed the U.S. Senate on April 24, 2008, by a vote of 95-0 and passed the U.S. House on May 1, 2008, by a vote of 414-1.

What Happens Now That GINA is Law?

While the PKD Foundation is pleased the long process (13 years) of getting GINA through Congress is over, there is still regulatory work on the bill that needs to be completed before the law takes full effect.

Regulations, or “regs,” will need to written by several agencies to implement GINA, and that process will take from 12 to 18 months. The PKD Foundation and other advocacy organizations will monitor this process to ensure the regs follow the intent of the law as passed.

PKD patients should be aware that until this process is finished, GINA will not be in effect. In the meantime, individuals may have questions about GINA or about getting tested for PKD or participating in clinical trials. The PKD Foundation is working on compiling information and FAQs to help individuals understand the protections offered by GINA. This information will be available soon.

The current PKD Foundation policy about obtaining a diagnosis of PKD can be found here.

Importance to PKD Patients

GINA will prohibit the use of genetic information in employment decisions, such as hiring, promotion, job assignments or termination. Genetic information would be categorized in the same manner as other forms of employment discrimination, such as race or disability. The legislation also would prohibit health plans and health insurance issuers from adjusting premiums or contribution amounts in group or individual markets and stop insurers from establishing enrollment restrictions for groups on the basis of genetic information. The legislation would protect the use and disclosure of all individually identifiable health information, including genetic information.

This law is vitally important to the current and future health, productivity, life expectancy and peace of mind for millions of Americans who have life-threatening genetic diseases like PKD or the potential to develop such diseases. There are thousands of rare and genetic conditions affecting millions of people in the United States.

The fear of genetic discrimination keeps many individuals at risk for PKD from testing for the presence of the disease, and it prevents many who know they have the disease from accessing the very treatments that could prolong their kidney function. In addition, current clinical trials have had problems recruiting volunteers because of the unwillingness to go public with their PKD status. These patients fear losing their health insurance or missing out on promotions, partnership opportunities, pay raises, increased work responsibilities and other employment enhancement options. The enactment of GINA may help in allaying some of these fears in the future. Regulatory clarification of the law will be closely monitored in order to determine the effectiveness of the law in this regard.

Document Downloads

Summary of GINA
FAQs About GINA as Law (coming soon!)