Does Huntington's Genetic Testing Affect Life Insurance?

If you are considering predictive genetic testing for Huntington’s disease (HD), it is essential to understand how the results could impact your financial planning. While federal law protects you when applying for health insurance, these same protections do not apply to life, long-term care, or disability insurance.

Health Insurance Protections

In the United States, a federal law known as the Genetic Information Nondiscrimination Act (GINA) protects you from genetic discrimination in certain areas. Under GINA, health insurance companies cannot use predictive genetic test results to deny you health coverage, cancel your policy, or increase your premiums ^[1][2]. This means a positive test for the Huntington’s gene will not prevent you from getting medical care coverage. Additionally, if you eventually develop symptoms, the Affordable Care Act (ACA) prevents health insurers from denying you coverage for a pre-existing condition.

GINA also prohibits employers with 15 or more employees from using genetic information in hiring, firing, or promotion decisions ^[3].

The Insurance “Protection Gap”

It is crucial to know that GINA’s protections have significant limitations. The law does not cover individual life insurance, disability insurance, or long-term care insurance ^[1][2].

When you apply for individual policies, companies use a process called medical underwriting to assess your risk. During this process, they can legally ask if you have undergone genetic testing and request access to your medical records ^[4]. If your records indicate that you carry the gene expansion for Huntington’s disease, these companies can legally use that information to deny you coverage entirely or charge you significantly higher rates.

The Role of Family History: Even if you have not been tested, underwriters routinely ask about your family medical history. Because HD is an inherited condition, having a parent with the disease can already lead to coverage denial or increased premiums. In these cases, a negative predictive test result can sometimes help you secure better rates by proving you did not inherit the mutation.

While a few states have enacted their own laws to provide extra protections—for instance, Florida prohibits life insurers from using predictive genetic test results in underwriting ^[5]—most states do not offer these safeguards. You can check the specific laws in your state through resources like the Huntington’s Disease Society of America (HDSA).

Strategies for Protecting Your Financial Future

Because Huntington’s disease is a progressive condition that often requires significant support over time, protecting your financial future is critical. There are practical ways to navigate this system:

• Secure Insurance Before Testing: Genetic counselors strongly recommend that you secure life, disability, and long-term care insurance policies before you proceed with predictive genetic testing. Allow several weeks to a few months for your insurance applications to be fully approved and active before scheduling your genetic test. An insurance company cannot retroactively cancel your coverage or raise your rates if you later test positive—provided you answered all application questions truthfully at the time you applied.
• Explore Group Insurance: Many employers offer group life and disability policies that do not require medical underwriting up to a certain coverage limit. This is a highly practical way for individuals at risk of HD to secure coverage regardless of their testing status or family history.
• Consider Anonymous Testing: Many people in the HD community choose to test anonymously. By paying out-of-pocket and using a pseudonym at certain clinics, you can keep the test results out of your official medical records. Discuss this strategy with your genetic counselor to see if it is available and appropriate for you.