The widespread availability of genetic testing is leading to a phenomenon which for many people is a troubling invasion of privacy. “As genetic testing becomes more accessible there is an increased risk of this information being used without consent,” said California State Sen. Alex Padilla, (D-Pacoima) in a news release.
The Minnesota Department of Health was recently sued for collecting blood from infants, conducting genetic testing and storing the results for research purposes, all without the knowledge and informed consent of the babies’ parents. Found to be in violation of the state’s Genetic Privacy Act, the agency must now destroy the genetic material. Retention policies for DNA samples varies state to state; a few states are thought to keep samples indefinitely.
A bill making its way through the California legislature aims to prevent that type of unauthorized collection, testing and sharing of genetic material and information. Authored by Padilla, the California Genetic Information Privacy Act passed the Senate Judiciary Committee on Tuesday, April 24, and is now headed for the Senate Appropriations Committee.
According to a news release from Padilla’s office, current California law does not guard against the unauthorized testing of genetic material, nor does it prevent any information obtained from the testing of that material from being analyzed and distributed. The California Genetic Information Privacy Act would impose civil and criminal penalties for obtaining and testing a person’s DNA without consent.
“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,” Padilla said.