In response to the news that FamilyTreeDNA shared genetic data with the FBI and that 23andMe will profit off genetic data by inking a deal with pharmaceutical giant GlaxoSmithKline, Florida Chief Financial Officer (CFO) Jimmy Patronis called on DNA-testing companies like 23andMe, FamilyTreeDNA, and Ancestry to treat DNA as a medical record before sharing genetic data.
CFO Jimmy Patronis said, “The decision by FamilyTreeDNA to willingly hand over sensitive genetic data to the FBI raises the question of transparency at popular DNA-testing companies. Sharing DNA data with the government sounds more like ‘Westworld’ and is a dangerous precedent. This is not the first time these companies have shared data, preying on the customer’s trust.
“In July 2018, 23andMe inked a $300 million deal with big pharma company GlaxoSmithKline and I have serious questions about how customers are notified of such deals. 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.
“Before medical records can be released, explicit consent is required. Your DNA contains health data regardless if that is specifically tested. I’m calling on DNA-testing companies to treat your DNA information as such and implement a transparent notification and release process prior to inking deals for profit and sharing data with government entities. In the age of digital hacks, it is vital that DNA-testing companies allow ample opportunity for customers to protect their data.”
Legislation (Senate Bill 258 and House Bill 879) has been filed this year that prevents life insurance companies from considering genetic information when setting rates or denying policies. These bills further protect citizens by preventing insurers from requiring or soliciting genetic test results in any manner for any insurance purpose. Senate Bill 258 passed the Banking and Insurance Committee on Monday, and House Bill 879 passed the Health Market Reform Subcommittee yesterday. CFO Patronis fully supports this effort to protect Floridians from their genetic data being used by insurance companies.
Senator Aaron Bean, sponsor of the Senate bill, said, “This bill protects Floridians’ private genetic information from companies seeking to sell their data for a profit. No one should be denied life insurance simply because they took a DNA test without reading the fine print. CFO Patronis’ support for this legislation is essential and shows his dedication to protecting Floridians’ personal information.”
Representative Jayer Williamson, sponsor of the House bill, said, “Misleading customers and profiting off uninformed Floridians must stop. We must do everything possible to secure Floridians’ DNA data. It’s a shocking reality that this sensitive information could be used to increase life insurance rates or even deny someone a policy. Thank you to CFO Patronis for making this issue a priority.”
About CFO Jimmy Patronis
Chief Financial Officer and State Fire Marshal Jimmy Patronis is a statewide elected official and a member of Florida’s Cabinet, who oversees the Department of Financial Services. CFO Patronis works each day to fight insurance fraud, support Florida’s firefighters, and ensure the state’s finances are stable to support economic growth in the state. Follow the activities of the Department on Facebook (FLDFS) and Twitter (@FLDFS).