Genetic testing and life insurance: what insurers can ask

The federal Genetic Information Nondiscrimination Act (GINA) does not protect you from genetic discrimination in life insurance. According to the National Human Genome Research Institute, GINA's health insurance protections do not cover long-term care insurance, life insurance or disability insurance. Whether a life insurer can ask about or use your genetic test results therefore depends mostly on your state, and most states leave it largely unrestricted. Florida is the clearest example of a state that has closed the gap.

What GINA does and does not do

GINA, enacted in 2008, bars health insurers from using genetic information to set eligibility or premiums, and it limits how employers can use it. It stops there. Life insurance, disability income insurance and long-term care insurance fall outside its health insurance protections. The same NHGRI page notes that some states have passed their own laws going beyond GINA to prohibit genetic discrimination in these other lines of insurance, and it points to the Genome Statute and Legislation Database for state-by-state searches.

The practical result: a predictive genetic test, such as one showing a variant linked to a higher risk of a disease you do not yet have, may be something a life insurer is legally allowed to ask about in many states.

What life insurers commonly ask

Practices vary by company and by state, so treat the following as common patterns, not rules:

• Diagnoses. The life insurance application asks about medical conditions you have been diagnosed with or treated for. A diagnosis is fair game in essentially every state, including where genetic testing is restricted.
• Family history. Questions about parents' and siblings' conditions are standard. See how family medical history affects life insurance. Family history questions are generally treated differently from genetic test results.
• Tests and results. Some applications ask whether a physician has ordered genetic testing, or ask for results of tests you have had. Others do not ask at all. Insurers may also see test results if they appear in medical records they request through an attending physician statement.
• Consumer DNA kits. Results from at-home kits are not typically part of your medical records unless you share them with a doctor or otherwise disclose them. What an insurer must be told, and whether you must volunteer anything beyond the questions asked, depends on the application wording and state law. Do not guess; read the questions carefully.

Insurers say they use this information because of adverse selection, the risk that people who know they carry a high-risk variant buy more coverage than average. Consumer advocates and many researchers respond that the fear of discrimination can deter people from beneficial testing. Both arguments are in the policy debate; the law, state by state, is where the balance is currently struck.

Florida's 2020 law

Florida amended its genetic information statute, section 627.4301, through House Bill 1189 (chapter 2020-159), effective July 1, 2020. Under the current text, as shown on the Florida Senate's statute page:

• In the absence of a diagnosis of a condition related to genetic information, life insurers (and long-term care and health insurers) may not cancel, limit or deny coverage, or set different premium rates, based on that information.
• These insurers may not require or solicit genetic information, use genetic test results, or consider a person's decisions or actions relating to genetic testing, for any insurance purpose.
• The law does not stop a life insurer from accessing your medical record as part of an application exam, and it does not stop an insurer from considering a medical diagnosis in your record, even if that diagnosis was made using a genetic test.
• The statute's definition of genetic information excludes questions about family history, so insurers can still ask about relatives' health.

In other words, Florida protects the person who has a variant but no diagnosis. Once a condition is diagnosed, the insurer can underwrite the diagnosis. See Florida for the state's other insurance rules.

Other states

Some other states restrict certain uses of genetic information in life or related insurance, and the strength of those laws varies widely: some are narrow, some address only certain tests, and some apply only to certain insurers or policy types. This guide has verified only Florida's text (above), and bills in this area are proposed in legislatures from time to time, so do not rely on a general summary for another state. Check your state insurance department's website, the Genome Statute and Legislation Database, or an attorney before a decision that turns on the answer.

Before you take a genetic test

If you are considering a test, and you do not already have all the life insurance you need, one practical sequence is:

1. Check your coverage first. If you want a policy, or a larger one, and are healthy now, apply before testing where that fits your situation. Coverage already in force generally cannot be cancelled or repriced because of a later test result, as long as premiums are paid.
2. Know your state's law. In Florida, a test result without a diagnosis cannot be used for life underwriting. Elsewhere, the result may be requested.
3. Understand what you are signing. Medical releases can authorize broad access to your records. See privacy and your life insurance data: who sees it and your rights for how application data is shared and what the MIB holds.
4. Do not delay medically useful testing for insurance reasons alone. Talk with your doctor or a genetic counselor. Insurance is one consideration, not the only one.
5. Consider disability and long-term care coverage too. The same gap in GINA applies to them.

If you already carry a variant or have a positive result and need coverage, many people still qualify. The result may affect your rate class, or insurers may ask for more information, and guaranteed issue life insurance: no health questions, with limits is a fallback with limits. Answer every question truthfully; misstatements can be grounds for contesting a claim, as described in what happens if you lie on a life insurance application.

Key takeaways

• GINA does not cover life, disability or long-term care insurance, according to the National Human Genome Research Institute.
• Whether a life insurer can use genetic test results depends on your state; Florida (effective July 1, 2020) bars it absent a diagnosis, while many states leave it unrestricted.
• Diagnoses and family history remain standard underwriting questions even where genetic tests are restricted.
• If you want coverage, know your state's rules and consider applying before testing, but do not skip medically valuable testing solely over insurance.