Last week, a bill was introduced by Florida Republican state Senator Aaron Bean with the goal of stopping genetic testing from being used by life insurance companies against clients.
Genetic testing has been embroiled in some controversy after the President of FamilyTreeDNA apologized to its users because the company has been sharing the DNA data with the FBI.
In turn, Jimmy Patronis, Florida’s Chief Financial Officer, is calling on companies that provide genetic testing to treat the information like medical records.
In a statement, Patronis reminded the companies that “before medical records can be released, explicit consent is required.” He further explained that “your DNA contains health data, regardless if that is specifically tested.” So, Patronis called “on DNA-testing companies to treat… DNA information as such and implement a transparent notification and release process prior to inking deals for profit and sharing data with government entities.”
Bean’s bill would stop genetic testing from being used by life insurance companies to deny coverage, lift coverage or pull coverage based on the test results, and Bean explained that “most people would shudder to think that type of information could be sold without their knowledge.”
So, in introducing the bill, it “protects Floridians’ private genetic information from companies seeking to sell their data for a profit.” Bean added that “No one should be denied life insurance simply because they took a DNA test without reading the fine print.” And, Bean also praised the Florida CFO for his support, saying that “Patronis’ support for this legislation is essential and shows his dedication to protecting Floridians’ personal information.”
Patronis pointed to a deal that 23andMe made with a big pharma company called GlaxoSmithKline for $300 million, saying that he has “serious questions about how customers are notified of such deals.”
The Florida CFO asserted that “while DNA testing companies defend their actions because customers ‘opt-in’ to blanket privacy policies, customers must be able to reevaluate their willingness to have their genome data shared outside the original intent.”