California Law Would Extend Genetic Non-Discrimination Protections

UPDATE (9/7/2011) California Governor Jerry Brown signed into law civil rights protections in the state to prevent discrimination against people based on their genetic information.

A new California law, awaiting Gov. Jerry Brown’s signature, would apply California’s broad anti-discriminatory protections to genetic information.

Authored by California State Senator Alex Padilla (D – Pacoima) the law, SB 559, extends the protections in the federal Genetic Information and Nondiscrimination Act (GINA). GINA currently prohibits the use of genetic information to discriminate against people in employment and insurance.

Gov. Brown hasn’t indicated whether he will sign the bill. He has until next week to decide.

Beyond the new California protections, the law and its history offer a lesson in the difficulty of drafting legislation for genetic testing.

Padilla’s legislation prohibits using genetic information to discriminate against people in housing, education, lending, elections, and other areas.

The proposed law essentially extends California’s existing civil rights legislation.

“Discrimination on the basis of genetic information is no less offensive than discrimination based on race, gender, or sexual orientation,” Padilla said. “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.”

Jeremy Gruber, the executive director of the Council for Responsible Genetics, applauded the law saying it would help both consumers and the industry. People will be more willing to use genetic testing knowing that the results of their tests can’t somehow be used against them.

But the legislation won’t change the regulatory framework under which direct-to-consumers genetic testing companies are currently operating.

Padilla, with the help of 23andMe, tried to do that two years ago, but that effort failed. Attorney Dan Vorhaus discussed those efforts and the nature of the new bill in a Genomics Law Report blog post in March.

But when Padilla’s previous bill failed, he attempted to bring all sides together for a meaningful policy discussion. 23andMe sponsored a daylong forum with Padilla, “Genomics and the Consumer: The Present and Future of Personalized Medicine,” last summer in San Francisco.

As 23andMe president and co-founder Anne Wojcicki said last summer, the forum was an attempt to shed light on an issue that had, up to that point, only seemed good at generating  “a lot of heat.” The forum was also an attempt to find some common ground.

Padilla noted that part of the friction surrounding the debate had to do with the speed at which genomic science has progressed. An MIT graduate, Padilla said his concern was that the inability to reach a consensus on proper oversight could hurt the development of an industry with great potential for scientific and therapeutic breakthroughs.

In many ways Padilla anticipated the current federal debate over how best to regulate the industry. In the year since that policy forum 23andMe has been in discussions with the FDA  regarding its own regulatory path, which it hopes will aid in the evolution of a rational regulatory framework for genetic testing services generally.

 

 


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