California lawmakers are weighing a bill aimed at protecting their state’s citizens from surreptitious genetic testing but scientists are voicing their growing concerns that, if passed, such a law would have a costly and damaging effect on research.
The bill, dubbed the Genetic Information Privacy Act, would require an individual’s written consent for the collection, analysis, retention, and sharing of his or her genetic information—including DNA, genetic test results, and even family disease history.
“It’s becoming easier and quicker and cheaper for people to obtain their genetic profile or genetic information,” says the bill’s author, California state Senator Alex Padilla. “It’s such sensitive and personal information that it ought to be protected,” he says. Padilla also authored an earlier bill, enacted in January, which extended federal protections against genetic discrimination.
Under the newly proposed bill, a person’s genetic information may only be accessed by individuals specifically named on a consent form, and only for purposes written on the form. Genetic information along with the original samples must be destroyed once their specified purposes are fulfilled.
Such requirements could seriously hinder genomic research, says geneticist David Segal, associate director of genomics at the University of California, Davis. He points out that scientists typically sequence DNA from thousands of people to discover genes associated with particular diseases. Under the proposed legislation, a large genomic dataset could not be re-used to study a different disease. Researchers would either need to destroy the data after each study, or track down thousands of former subjects for new authorizations—an infeasible task, he says.
“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,” Segal adds. “California would be shut out of doing that kind of genetic research.”
The University of California has submitted a formal letter objecting to the bill, estimating that the measure could increase administrative costs by up to $594,000 annually—money which would come out of the cash-strapped state’s General Fund. The university has also expressed concern that its researchers would suffer competitive losses in obtaining research grants.
Advocates for genetic privacy are not entirely sympathetic.
“If researchers are worried about not being able to do research with inadequate consent, then maybe they should be worried,” says Jeremy Gruber, president of the Council for Responsible Genetics based in Cambridge, Massachusetts, which supports the bill. “Nothing in this bill prevents anybody from doing research, it simply adds a level of consent,” Gruber says. …