Consumers’ Own Interest at Stake with Genetic Privacy Bill

Jan 23, 2020
This op-ed originally appeared in the South Florida Sun Sentinel. Much more is at stake than advertised in a bill — HB 1189/SB 1564 — titled, “Genetic Information for Insurance Purposes,” sponsored by Florida House Speaker-designate Chris Sprowls and state Senator Kelli Stargel. It is not just about people being able to keep private genetic information gained from an entertaining or 23andMe at-home genetic testing kit. If that was the only issue at stake, we’d support the measure. It’s about denying the consideration of any and all genetic information in the life insurance policy application process, not just information generated by an at-home test. If adopted as written, this sweeping, most-intrusive-in-America measure would negatively disrupt Florida’s life insurance market and could harm consumers through higher prices and potentially limited product choices. For example: The bill would prohibit consumers from using their own data as they see fit, even if it could be used to improve their insurability or their rates. Genetic information that could show that a certain medical condition could be well managed would be prohibited. Second, and perhaps more importantly, insurance underwriters would not be able to consider genetic information in an applicant’s medical record, with one small exception related to DNA tests that are diagnoses — a relatively rare thing. This prohibition would be in place even when it is an integral part of a person’s medical record.  With advances in genetic science, doctors are routinely adding genetic information to patients’ medical records. If applicants’ complete medical records are off-limits, as the bill contemplates, higher prices and fewer consumer choices could follow. Fair pricing is based on certainty in the policy application process. Access to complete medical records with consumers’ consent is what makes coverage in Florida accessible and affordable today. There’s a better way and it achieves Representative Sprowls and Stargel’s stated purpose. Other states that have considered similar bills have found a way to protect consumer privacy and ensure insurance companies can continue to provide affordable coverage. Just last year, for example, legislators in both Maine and Illinois understood the consequences of a complete ban, and instead saw the wisdom in preventing direct-to-consumer testing companies from sharing genetic information without consumers’ consent. This year, Vermont is considering a similar approach. There is ample evidence that the objective of safeguarding the privacy of one’s personal data can be achieved without harming consumers. The Stargel-Sprowls bill kicks off an important and necessary conversation about privacy in the state. But let’s make sure it does good and not harm. With some fixes, their bill could truly help Florida consumers and establish the state as a smart leader in genetic privacy.

Susan K. Neely

Susan K. Neely is the President and CEO of the American Council of Life Insurers (ACLI), the nation’s leading trade association determined to help families live better lives by achieving financial security and certainty. As president and CEO, Neely drives public policy and advocacy on behalf of ACLI’s member companies that represent 93 percent of industry assets and serve 90 million families.