By Anna C F Lewis and Anya E R Prince
On July 1, a law banning the use of genetic information by life, long-term care, and disability income insurers took effect in Florida.
Florida’s success marks a potential turning point of bipartisan appeal for this issue.
The passage of this law, which we explore in a recent article published in Genetics in Medicine, the official journal of the American College of Medical Genetics and Genomics (ACMG), was propelled by a campaign that argued that an individual’s DNA should not be weaponized against them, that affordable insurance shouldn’t just be for the genetic elite, and that an individual should be able to keep their genetic data private.
In the absence of robust protections about what can be done with genetic data, many hesitate to have their DNA sequenced.
In 2008 the U.S. federal government passed the Genetic Information Nondiscrimination Act (GINA), to help address these concerns. GINA bars, in most contexts, health insurers and employers from collecting and using an individual’s genetic data.
But GINA left some big gaps. In particular, the federal law did not regulate how life, long-term care, and disability income insurers could use an individual’s genetic information. Indeed, if you have a genetic test result, failing to share it with one of these insurers if they ask could amount to fraud.
Since GINA’s passage, there have been consistent bipartisan state legislative efforts to strengthen these protections (see Figure). Most enacted legislation has focused on life, long-term care, or disability income insurance, and has not barred insurers outright from using genetic information. Instead, these laws regulate the use of genetic information through informed consent or actuarial requirements. In particular, no legislation, until Florida’s law, had put more than the most inconsequential of limits on the nearly 1 trillion dollar life insurance industry’s use of genetic data.
In response to the Florida bill, the life insurance industry argued that it is only fair that individuals who are predicted to live less long because of their genetic makeup should pay more (or be denied) life insurance. We do this for other types of health related information, why not genetic information?
Life insurance lobbyist tactics in this fight over fairness initially appeared to be working. At first, one Florida legislative committee watered down the provisions of the act considerably, replicating an approach that had worked in Maine and in Illinois. But another committee substituted back the original language, which ultimately passed with only one member of congress and three senators opposing.
The Florida bill leaves several open questions, however, including the role of beneficial genetic information, the prospect of insurance tourism, and the scope of an exception carved out for medical diagnoses made on the basis of genetic information. These are points that other legislative or alternative strategies should address.
Florida’s recent legislation highlights that now, even twelve years after GINA’s passage, there is continued bipartisan interest in addressing concerns of genetic discrimination in insurance.
Progress could come in the form of many more state legislatures passing stronger protections against genetic discrimination, possibly through a model law. Alternatively, this could be the moment to bring the insurance industry to the table for a more flexible form of solution. Other countries have enacted a range of responses, including a moratorium on the use of genetic information by life insurers in Australia, and a Code jointly supported by the government and the insurance industry in the U.K.
For proponents of stronger protections against genetic discrimination, the time is ripe to push for legislative or regulatory efforts. This is no easy task, as federalism may require advocacy efforts across 50+ jurisdictions. And, as organized advocates in Illinois experienced, even when a bill has made it to the state legislature and appears to be moving along, this does not guarantee the result of a strong, comprehensive protection.
What is clear is that many voices are needed in the discussions, from actuaries to scientists, policymakers to genetic counselors. Recent technological advances, such as the growing development of polygenic risk scores, make the arguments for and against broader protections all the more salient.