California’s Senate Judiciary Committee today passed Senate Bill 1267, authored by Senator Alex Padilla (D-Pacoima). The bill would establish the California Genetic Information Privacy Act. The measure now goes to the Senate Appropriations Committee for consideration.
Presently, there are no laws that prevent surreptitious taking, testing and disseminating an individual’s genetic material and information. Specifically, SB 1267 would provide that no genetic material can be collected, analyzed, shared and stored without a person’s written consent. The bill would impose civil and criminal penalties and fines for taking and testing a person’s genetic material.
“SB 1267 would extend California privacy protections to a person’s genetic material and information,” said Senator Alex Padilla. “We have laws to protect the privacy of our financial information, our medical records, and even the books we check out from the local library. We need genetic privacy protections because nothing is more personal than our DNA,” added Senator Padilla.
Genomic sequencing and testing is fast approaching the point where it will be widely affordable to the general public and an integral part of health care. What took years of international effort to produce in the mid-1980’s can now be completed in days. Analysis of genetic material can allow for early detection of disease long before symptoms become apparent. Genetic markers can also suggest propensity for diseases that may or may not ever develop.
“No one should be able to take another person’s DNA without consent and mine it for information. We look forward to working with Senator Padilla to pass strong legislation to protect every Californian from unauthorized testing of their DNA,” said Jeremy Gruber, President, Council for Responsible Genetics.
“As genetic testing becomes more accessible there is an increased risk of this information being used without consent. No person should have their genetic material taken, tested and given to others without written consent. All Californians should have these basic protections,” added Senator Padilla.
Recently, the Minnesota Department of Health, in Bearder v. State of Minnesota, was sued for collecting the blood of infants, conducting genetic analysis and storing the information without the consent or knowledge of their parents. The information was ultimately passed on to researchers. The court found that the Department had violated Minnesota’s Genetic Privacy Act, a 2006 law that requires informed, written consent for the collection, storage, use and dissemination of any genetic information. The Minnesota Department of Health now must destroy the thousands of samples that they collected and stored.
Last year the Governor signed Senate Bill 559 (Padilla), which expanded California civil rights laws by prohibiting discrimination based on genetic information in housing, employment, education, public accommodations, health insurance coverage, life insurance coverage, mortgage lending, and elections.
Senator Alex Padilla, 39, graduated from MIT with a degree in Mechanical Engineering. He currently serves on the MIT Board. He is Chair of the Senate Energy, Utilities and Communications Committee and represents the more than 900,000 residents of the 20th State Senate District which includes most of the San Fernando Valley in Los Angeles.
Valerie Gotten, California Newswire