For over 25 years, the Council for Responsible Genetics has advocated for strong genetic nondiscrimination and privacy protections for all Americans. 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 I was a leader of the successful effort to enact the federal Genetic Information Nondiscrimination Act (GINA) and many of the state laws that preceded it.
Nevertheless, current law is limited in its coverage; there simply is no comprehensive genetic privacy law in this country. As strong as GINA is, it only covers genetic discrimination and privacy in the areas of health insurance and employment. Most state "GINA's" are similarly limited.
That is why the Council for Responsible Genetics worked closely with California State Senator Alex Padilla to introduce, support and pass SB 559, the California Genetic Information Nondiscrimination Act (CalGINA), historic legislation to protect against unfair genetic discrimination. By setting 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 represents an important step forward in ensuring that the genetic information of Californians is protected from misuse.
As Senator Padilla noted:
This law enhances the civil rights of every Californian ... Discrimination on the basis of genetic information is no less offensive than discrimination based on race, gender, or sexual orientation. California has a compelling interest in promoting and fostering the medical promise of genomics while relieving the fear of discrimination by strengthening laws to prevent 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. The public must be assured that undergoing genetic testing will not endanger their economic security. Consider the case of Lawrence-Berkeley Laboratories, which for almost three decades gave its employees medical examinations that included tests for syphilis, sickle cell genetic markers and pregnancy without their knowledge. Such systematic violations of the expectations of people whose personal health information is being used without their consent are just wrong. This is a violation of basic human rights. Indeed, a recent survey by Cogent Research found that 71% of all Americans are concerned about access to and use of their personal genetic information.
The effort to pass the federal Genetic Information Nondiscrimination Act began as a series of campaigns to pass state legislation. By the time GINA was signed into law most states had laws, however limited, protecting against genetic discrimination and upholding privacy principles. It was this pressure for a strong federal standard that helped shepherd GINA into law. Once again the Council for Responsible Genetics is going back to the state level, building on the strong foundation of GINA and working to ensure that genetic information is protected against misuse. California is an important first victory in this campaign.
Jeremy Gruber, JD, is President of the Council for Responsible Genetics.