7. September 2011 22:33
The Council for Responsible Genetics applauds Governor Brown for signing and Senator Alex Padilla for championing SB 559, the California Genetic Information Nondiscrimination Act (CalGINA); historic legislation that sets clear limitations on the use of personal genetic information in a variety of contexts unforeseen just a short time ago, including housing, education, life insurance, mortgage lending and elections. This new law ensures that the genetic information of all Californians is protected from misuse.
The Council for Responsible Genetics, an original supporter of the legislation, has advocated for over 25 years for strong genetic nondiscrimination and privacy protections. CRG first coined the term "genetic discrimination" and collected hundreds of examples of and performed some of the first case studies on it. CRG helped develop the first model legislation on genetic discrimination and CRG President Jeremy Gruber was a leader of the successful effort to enact the federal Genetic Information Nondiscrimination Act and a number of the state laws that preceded it.
“Ten years after the mapping of the human genome was completed, the genetic revolution has led to a tsunami of DNA data created by genetics research and the commercialization of such research. As more and more of this personal information becomes public knowledge, it can be bought and sold by any commercial interests interested in predictive information about an individual's future health status. Such systematic violations of the expectations of people whose personal health information is being used without their consent is a violation of basic human rights. Yet we still have no comprehensive genetic privacy law in the United States. This new law is a crucial step in assuring the public that undergoing genetic testing will not endanger their economic security and places California once again in its role as a leader in addressing the social and ethical implications of biotechnology” declared CRG President Jeremy Gruber.
Since 1983, the Council for Responsible Genetics has represented the public interest and fostered public debate about the social, ethical and environmental implications of genetic technologies. CRG is a leader in the movement to steer biotechnology toward the advancement of public health, environmental protection, equal justice, and respect for human rights.