Genetic testing information is often not as private as consumers think it is, writes Peter Pitts, president of the Center for Medicine in the Public Interest and former associate commissioner at the US Food and Drug Administration, at Forbes.
He says that while many people think that their data is tucked away in a secure spot, most direct-to-consumer genetic testing companies sell their users' data. He notes that under the 1996 Health Insurance Portability and Accountability Act, medical companies can share or sell anonymized patient data. For instance, 23andMe sold access to its database of people with Parkinson's disease to Genentech, while AncestryDNA has partnered with Calico. He further notes that genetic-testing companies often bury their privacy disclaimers deep in their contracts.
But genetic information being what it is, Pitts says that it can't really be fully anonymized. Researchers been able to unmask people whose genetic information was in public databases. This, he adds, opens up the possibility for such information to be abused by employers or others.
"Genetic testing has tremendous benefits," Pitts writes.
"But today, far too many donors are operating under a false sense of security, handling profoundly intimate data without appropriate protections," he adds.