21. mayo 2014 21:53
Six years ago today on May 21, 2008, then President Bush signed the Genetic Information Nondiscrimination Act (GINA) into law. Senator Ted Kennedy hailed GINA as the "first civil rights bill of the new century." GINA represents the first time that Congress has passed legislation before the discrimination it is meant to address has become seemingly permanently ingrained in the country's social fabric, and in that respect I think we should all be proud.
GINA provides strong new protections against access to genetic information and genetic discrimination in both the health insurance and employment settings. These protections apply to residents of all 50 US States and territories. ( for more information on GINA please visit our Genetic Privacy Network site at www.geneticprivacynetwork.org )
GINA is not a comprehensive genetic privacy law and it does not address all possible forms of genetic discrimination. For example, it does not address life insurance, disability insurance, or long-term care insurance. GINA does not protect symptomatic individuals as well.
GINA is a strong and essential first step in the fight against genetic discrimination and misuse of medical information more generally, but it is not our last battle. We must continue to seek out and address discrimination in every corner and ensure that strong protections are in place to address it. To this end, the Council for Responsible Genetics continues to work for progressive legislative reform at the state and federal level to prevent the access to and misuse of genetic information and ensure the right of privacy that is recognized in common law and the Fourth and Fifth Amendments of the Constitution.
But today we celebrate, knowing that the EEOC and other federal agencies have taken a vigorous role in enforcing GINA and that the precedent of GINA, as well as the improved level of education on Capitol Hill as the result of the process of enacting it, will allow us to build upon the foundation that GINA now provides.