When it comes to sensitive data, nothing is more personal than genes,media reported. Healthcare companies and consumer genetic testing companies now store vast amounts of genetic records, raising concerns that a Cambridge Analytica-style privacy breach is at risk.
Patients have abandoned genetic tests that could benefit their health, experts said Wednesday at the RSA conference in San Francisco, fearing that genetic information could be used in unexpected ways. They also say it is impossible to fully identify patient information, including genomic data, which further raises concerns about the field.
Patrick Courneya, Kaiser Permanente’s chief medical officer, said genetic testing had begun to be abandoned because of privacy concerns. He did not specify what specific problems caused patients to avoid some tests, but some of them may stem from concerns about the genetic genealogy. Genetic genealogy is a crime-solving technique that combines genetics with family history. Bioethicists and civil liberties watchdogs have raised concerns about the potential problems of the practice, since anyone who shares their DNA in a database will make decisions about those who share their genetic makeup.
Kathy Hibbs, 23andMe’s chief legal and regulatory officer, says patients need to understand that gene lineage is not just dependent on genetic records. But Mr Courneya said he did not believe consumers would be pleased.
Meanwhile, Michael Wilson, chief security officer at Molina Healthcare, points out that genetic data is difficult to use safely for research. While de-identification of genetic data is standard practice, he says, it is too easy to reverse the process and find out who the specific data belongs to. He added that it was impossible to accurately assess the value of genetic information after 50 to 100 years, and that it must be protected as long as researchers have it.
Wilson further points out that the stolen genetic data may not be valuable in itself, but it may be valuable if combined with other data.
Ultimately, says Sharon Terry, CEO of Alliance Genetics, people need to have ultimate control over their data and the power to block data sharing. “We can’t identify it, but we can restrict access and give people control of themselves. “