There's a regulatory gap surrounding direct-to-consumer genetic tests that should be addressed, according to Consumer Reports.
In the US, there is a patchwork of protections. Consumer Reports notes that the federal Genetic Information Nondiscrimination Act prevents employers from using genetic information in hiring or firing decisions and bars health insurance companies from using it in policy coverage decisions. However, Vanderbilt University Medical Center's Ellen Clayton tells it that the law does not provide protections once someone has symptoms of a genetic condition. But the Americans with Disabilities Act does step in with some protections, as do the Affordable Care Act and the Health Insurance Portability and Accountability Act.
Consumer Reports notes, though, that none of these protections really apply to direct-to-consumer genetic testing services. It says there are no regulations overseeing how DTC first should store or protect customers' data or what they can do with that data.
In a white paper, it calls on lawmakers to make genetic data "privileged and confidential."
"Lawmakers must step up and close the regulatory gap by making sure that genetic information remains confidential,with detailed requirements to allow for authorization to disclose the information to specific recipients but in a way crafted to protect the privacy of non-consenting related consumers," Consumer Reports adds.