Vernon professor of law at the University of Iowa, recently highlighted that legislative bodies in nine states are actively considering stricter rules regarding how life insurance companies use genetic-testing results in underwriting.
The Bottom Line
- Regulatory Shift: Nine state legislatures are weighing tighter restrictions on genetic data usage in life insurance underwriting, following an adopted model act from the National Conference of Insurance Legislators (NCOIL).
- The Medical Record Loophole: While direct-to-consumer tests like 23andMe are typically ignored by insurers, physician-ordered genetic tests enter medical records and remain accessible for underwriting in every state except Florida.
- Industry Friction: Insurers argue that restricting the use of genetic-testing information could ultimately raise insurance premiums.
Decoding the Genetic Underwriting Landscape
The regulatory framework governing genetic information remains fragmented across the United States. While the Genetic Information Nondiscrimination Act (GINA) blocks health insurers and employers from using genetic data to make decisions about coverage, pricing, hiring or firing, it does not apply to life, disability, and long-term care insurance. That leaves the door wide open for state-level oversight.
Bills introduced in nine state legislatures—California, Illinois, Maryland, Massachusetts, Minnesota, New Jersey, New York, Rhode Island, and West Virginia—aim to set stricter rules. However, the rigor of these proposed statutes varies. California and Illinois currently harbor the strongest language.
Here is the math on how data actually flows into an underwriting file. Direct-to-consumer genetic kits do not supply medical-grade data. John Shirkian, president and CEO of the Association of California Life & Health Insurance Companies, noted that insurers generally ignore direct-to-consumer results because they are not considered medical-grade tests.
But the balance sheet changes once a physician gets involved. If an applicant discusses a consumer test with a doctor who subsequently orders a medical-grade genetic test, those results land straight in the medical records.
Once logged in medical files, insurers can legally factor them into underwriting decisions everywhere outside of Florida.
The NCOIL Model Act and the Informed Consent Debate
To standardize state approaches, the National Conference of Insurance Legislators (NCOIL) adopted a model act in April 2026. The framework establishes three baseline protections:
- Insurers cannot cancel coverage based solely on genetic information of the individual or a family member.
- Companies cannot request or require genetic testing as a precondition for coverage or pricing.
- Insurers shall not access genetic data without the individual’s signed written consent.
Yet, legal scholars argue these safeguards carry structural loopholes. Anya Prince pointed out the fundamental flaw in requiring informed consent for data access.
“In theory that’s great—people should know if their genetic information is being used. But if you say you don’t consent, the insurer can say they don’t offer you insurance,” Prince explained.
| State / Body | Current Standing / Proposed Action | Primary Restriction Level |
|---|---|---|
| Florida | Existing State Law | Prohibits underwriting use of genetic data from medical records |
| California & Illinois | Pending 2026 Legislation | Proposes strict bans matching Florida’s standard |
| NCOIL Model Act | Adopted April 2026 | Requires written consent; bans mandatory testing and cancellation |
| Remaining 48 States | Varies by Jurisdiction | Permits medical-record genetic data in underwriting |
Economic Pressures and Corporate Pushback
As state lawmakers press forward, the insurance industry maintains that heavy restrictions create market distortions. In California, industry representatives argue that restricting the use of genetic-testing information could ultimately raise insurance premiums.
For now, applicants navigating the insurance market must weigh the immediate clinical benefits of physician-ordered genetic testing against the long-term underwriting consequences encoded in their medical files.
Disclaimer: The information provided in this article is for educational and informational purposes only and does not constitute financial advice.
