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.