Thinking About Genetic Testing? Here’s What To Know About Insurance

If someone in your family has a genetic condition like familial frontotemporal dementia (FTD), Huntington’s disease, or another inherited brain disease, you might be thinking about the future. One part of planning ahead includes understanding your insurance options - especially, life, disability, and long-term care insurance solutions.

These types of insurance can help protect you and your loved ones if you get sick or become unable to work. But if you are at genetic risk, it’s important to understand how and when to apply.

What Do These Insurance Types Cover?

• Life insurance pays your family money after you die. This can help cover your funeral costs, their living expenses, or other needs.
  
  
• Disability insurance pays you money if you can’t work due to illness or injury. It helps you replace some of your income.
  
  
• Long-term care insurance helps pay for support if you need help with daily activities, like bathing or dressing. This might include care at home, in assisted living, or in a nursing home.

Why Timing Matters

If you are thinking about genetic testing, experts usually recommend applying for these insurance policies before you get tested—especially if you are still healthy and not showing symptoms.

Here’s why:
Unlike health insurance companies, these insurance companies can use your genetic test results to decide if you qualify or how much you’ll pay. 

What Information Will I Need to Provide?

Every insurance application will ask slightly different questions about your health.  In some cases questions may be very broad like the ones below:

“Other than previously stated, have you within the past 5 years consulted a physician or any other practitioner, had a check-up, illness, surgery, or been hospitalized?”  

“Have you been advised to have, or schedule, any diagnostic test, hospitalization, or surgery which was not completed?”

Questions like this require you to disclose consultations with a genetic counselor or recommendations made related to a neurological evaluation even if you have not pursued testing.  Answering “yes” to questions like this may lead to follow up questions and requests for records.  

In addition, even if you haven’t had testing, insurers may ask about your family health history, which can also affect your chances of getting covered.

What the Law Says

Some people think there are laws that stop insurance companies from using genetic test results. That’s partly true, but the protections have limits.

• GINA (Genetic Information Nondiscrimination Act) is a federal law that protects you from genetic discrimination in health insurance and employment.

✅ Health insurance companies can’t raise your rates or deny coverage based on your genes.

✅ Employers can’t fire or treat you unfairly because of your genetic risk.

❌ But GINA does not protect you when applying for life, disability, or long-term care insurance.

❌  GINA also has some limitations on who is covered, for example, individuals in the military are not covered. 

Learn more about GINA protections here

• State laws: Some states have their own rules. A few offer more protections, but most do not stop insurers from using genetic test results for life, disability, or long-term care policies. 

You can learn more about your own state laws and what protection they offer from genetic discrimination here

Things to Keep in Mind

• Apply early: If you’re thinking about getting genetic testing, consider applying for insurance before pursuing testing or any other medical evaluations or consultations—especially if you’re healthy.
  
  
• Family history counts: Even without genetic testing, companies can ask about diseases in your family. This can still affect your application.
  
  
• Be truthful: Always give honest answers on insurance applications. If you leave something out and they find out later, your policy could be canceled.
  
  
• Group insurance through work: Some jobs offer group life or disability insurance, which may not ask health or genetic questions. These can be easier to get.
  
  
• Once you’re covered, you’re covered: After you buy a policy, most companies can’t cancel it just because you find out you have a gene mutation later.

Final Thoughts

If you have a family history of a neurodegenerative disease, it’s smart to plan ahead. Applying for life, disability, and long-term care insurance before genetic testing may help you get better coverage. While health insurance and jobs are protected by law from genetic discrimination, other types of insurance are not.

If you're unsure where to start, consider talking to a genetic counselor, financial planner, or insurance advisor who understands these issues. Planning now can help protect your future.