California bill seeks restrictions on genetic data
Seeking to protect the sensitive genetic information of their citizens, lawmakers in the Golden State are considering legislation that would guard against covert DNA testing by requiring written permission from California citizens before collecting, analyzing, storing or sharing their genetic information. Any such data obtained—with the appropriate permission—could only be used within the scope of the permission given by the DNA owner, after which the DNA samples would have to be destroyed.
“It’s becoming easier and quicker and cheaper for people to obtain their genetic profile or genetic information. It’s such sensitive and personal information that it ought to be protected,” said state Sen. Alex Padilla, author of Senate Bill (SB) 1267, the so-called “Genetic Information Privacy Act.” “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.”
Some of these issues recently came to light in a Minnesota court case, Bearder v. State of Minnesota, in which the Minnesota Department of Health 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 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, California Gov. Jerry Brown signed SB 559 (also authored by 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.
Currently, California law prohibits discrimination in the enrollment of health insurance plans on the basis of genetic information, as well as the disclosure by a healthcare service plan of the results of a test for a genetic characteristic contained in an applicant’s or enrollee’s medical records.
The Genetic Information Privacy Act would prohibit any person from obtaining, analyzing or disclosing genetic information without the written authorization of the individual and require a separate written authorization for each disclosure of an individual’s genetic information. The bill would also establish civil and criminal penalties for a violation of this prohibition. Certain individuals, such as law enforcement officials, hospitals, laboratories and physicians carrying out court-ordered tests would be exempt.
While some in the research community agree that protecting an individual’s genetic information is important, they are voicing concerns that the bill may negatively impact genetic research efforts in California, or make it too expensive to conduct. Under SB 1267, researchers could not reuse datasets to study a different disease. Researchers would be required to either to collect new data for each study, or track down former DNA donors to obtain consent.
“It’s just an incredible proposition that the money and effort that would be spent to obtain those large datasets would be just thrown away. California would be shut out of doing that kind of genetic research,” wrote David Segal, associate director of genomics at the University of California, in a letter to the California legislature.
Padilla responded to these concerns by stating, “My intent is not to impede research; my intent is to protect consumers.”
SB 1267 was introduced Feb. 23 and is currently under review by the Senate Appropriations Committee.