Congratulations!

On May 11th, 2008 President Bush signed GINA into law. Senator Ted Kennedy called it the "first major new civil rights bill of the new century"*.

The Genetic Information Nondiscrimination Act (GINA) a US law that prohibits the improper use of genetic information in health insurance and employment. It prohibits health insurers from denying coverage to a healthy (or pre-symptomatic) individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also prevents employers from using genetic information when making job-related hiring, firing, placement, or promotion decisions. GINA does not address life insurance decisions. The text of the final verison of the bill can be seen here.

Introduced originally in 1995, GINA passed the Senate 95 - 0 as H.R. 493 on April 24, 2008. The House of Representatives passed GINA 414 - 16 - 1 on May 1st (the lone dissenter was Congressman Ron Paul).

This has been a long battle. For our part in the battle, in addition to numerous calls and faxes, MLD Foundation spent a full day visiting eight western senators in Washington, DC in July of 2007. There were other foundations lobbying the other 42 senators. Our thanks to those who worked for over a dozen years before us to pave the way for GINA and to prevent the misuse of genetic information. Thank you for your calls, emails and faxes to your senators. [See press release here]

This is a victory for all of us with genetic conditions affecting our loved ones! Discrimination on the basis of genetic information had led individuals to shy away from genetic testing and to opt out of clinical trials for fear that their genetic information would be used against them. This lack of participation has slowed the research and development of treatments and beneficial drugs. GINA also protects against genetic discrimination for health insurance and in hiring/firing.

if you've been tested, that information cannot be used to deny you medical insurance or employment.

As technology has evolved we are now able to better understand our personal genetic make up and gene testing is becoming much more commonplace. Perhaps you or a family member were tested to determine your MLD gene mutation. This bill prevents you from being discriminated against just because you have a particular genetic status. As an example, scientists are getting to the point where they can identify a pre-dispostion to a condition that does not affect you now, but might in the future. This legislation prevents discrimination now based on a future possibility - such as adult MLD, or even breast cancer.

To follow up on GINA or any other issue you may contact your senators by phone, FAX, or by e-mail here:
http://www.senate.gov/general/contact_information/senators_cfm.cfm