California bill seeks restrictions on genetic data
Some researchers concerned that broad provisions will impede genetic research
Seeking to protect the sensitive genetic information oftheir citizens, lawmakers in the Golden State are considering legislation thatwould guard against covert DNA testing by requiring written permission fromCalifornia citizens before collecting, analyzing, storing or sharing theirgenetic information. Any such data obtained—with the appropriatepermission—could only be used within the scope of the permission given by theDNA owner, after which the DNA samples would have to be destroyed.
"It's becoming easier and quicker and cheaper for people toobtain their genetic profile or genetic information. It's such sensitive andpersonal information that it ought to be protected," said state Sen. AlexPadilla, author of Senate Bill (SB) 1267, the so-called "Genetic InformationPrivacy Act." "We have laws to protect the privacy of our financialinformation, our medical records and even the books we check out from the locallibrary. We need genetic privacy protections because nothing is more personalthan our DNA."
Some of these issues recently came to light in a Minnesotacourt case, Bearder v. State of Minnesota,in which the Minnesota Department of Health was sued for collecting the bloodof infants, conducting genetic analysis and storing the information without theconsent or knowledge of their parents. The information was ultimately passed onto researchers. The court found that the department violated Minnesota'sGenetic Privacy Act, a 2006 law that requires informed, written consent for thecollection, storage, use and dissemination of any genetic information. TheMinnesota Department of Health now must destroy the thousands of samples thatthey collected and stored.
Last year, California Gov. Jerry Brown signed SB 559 (alsoauthored by Padilla), which expanded California civil rights laws byprohibiting discrimination based on genetic information in housing, employment,education, public accommodations, health insurance coverage, life insurancecoverage, mortgage lending and elections.
Currently, California law prohibits discrimination in theenrollment of health insurance plans on the basis of genetic information, aswell as the disclosure by a healthcare service plan of the results of a testfor a genetic characteristic contained in an applicant's or enrollee's medicalrecords.
The Genetic Information Privacy Act would prohibit any personfrom obtaining, analyzing or disclosing genetic information without the writtenauthorization of the individual and require a separate written authorizationfor each disclosure of an individual's genetic information. The bill would alsoestablish civil and criminal penalties for a violation of this prohibition.Certain individuals, such as law enforcement officials, hospitals, laboratoriesand physicians carrying out court-ordered tests would be exempt.
While some in the research community agree that protectingan individual's genetic information is important, they are voicing concernsthat the bill may negatively impact genetic research efforts in California, ormake it too expensive to conduct. Under SB 1267, researchers could not reusedatasets to study a different disease. Researchers would be required toeither to collect new data for each study, or track down former DNA donors toobtain consent.
"It's just an incredible proposition that the money andeffort that would be spent to obtain those large datasets would be just thrownaway. California would be shut out of doing that kind of genetic research,"wrote David Segal, associate director of genomics at the University ofCalifornia, in a letter to the California legislature.
Padilla responded to these concerns by stating, "My intentis not to impede research; my intent is to protect consumers."
SB 1267 was introduced Feb. 23 and is currently under reviewby the Senate Appropriations Committee.