By: Chelsea Wagner, MS, CGC

Reviewed by: Sara Pirzadeh-Miller, MS, CGC on 3/2/2026

Thinking about at-home DNA testing and curious how genetic information fits into insurance decisions? This guide explores how different types of insurance may consider genetic information and what that means for consumers. One area that often surprises people is insurance, especially life, disability, and long-term care insurance. The rules that protect genetic information in healthcare and employment don’t always apply in these settings. Understanding what protections exist and where gaps remain can help you make informed decisions about genetic testing.

What protections exist for genetic information?

Federal laws do offer important safeguards. Two key laws—the Genetic Information Nondiscrimination Act of 2008 (GINA)¹ and the Health Insurance Portability and Accountability Act (HIPAA)²—were designed to allow genetic information to be used in medical care without fear of discrimination.

However, these laws have limits. They apply in specific contexts and do not cover every situation in which genetic information might be used.

Where protections are strongest

Under GINA and HIPAA, genetic information generally cannot be used to:

• Make employment decisions (such as hiring, firing, or promotion)
• Determine eligibility for health insurance
• Set health insurance premiums or coverage based on genetic risk

When genetic testing is ordered through a healthcare provider, HIPAA also limits who can access that information and how it can be shared.

Where protections are limited

GINA does not apply to all types of insurance. Federal law does not prohibit the use of genetic information in decisions related to:

• Life insurance
• Long-term care insurance
• Disability insurance

This doesn’t mean genetic testing is unsafe or unwise, but it does mean these insurers may legally consider health history and, in some cases, genetic test results, when underwriting a policy for an individual.

How might genetic information be used outside of healthcare?

Insurance companies rely on large data sets to estimate risk, much like how car insurance companies use age or driving history to predict the likelihood of an accident. In some cases, insurers may look at health history or genetic information associated with an increased likelihood of a condition. These estimates help insurers decide whether to offer a policy and how much it may cost.

When someone applies for life, long-term care, or disability insurance, the company uses a process called underwriting. Underwriting is how insurers assess risk to determine coverage and pricing. People who are considered higher risk for development of health conditions may be offered policies with higher premiums or, in some cases, may have more limited coverage options, while those considered lower risk often have lower costs.

In some cases, a person who has had genetic testing may learn they carry a genetic variant linked to an increased risk for a certain condition. An insurer may take this information into account alongside many other factors, even though genetic results reflect likelihood, not certainty, of a condition, to determine eligibility and cost of a policy.  This can be especially relevant for genetic information obtained from direct-to-consumer testing, where genetic data privacy protections aren’t as strong.

Not all insurance is regulated in the same way
Different insurance products follow different rules, and genetic protections vary as a result.

• Health insurance: Genetic information cannot be used to determine eligibility, coverage, or premiums.
• Disability insurance: May consider health history and, in some cases, genetic information when assessing risk.
• Long-term care insurance: Underwriting often includes health history and may include genetic information related to future care needs.
• Life insurance: Frequently considers family history and sometimes genetic test results to estimate long-term risk.

State laws can add additional protections, which is why rules may differ depending on where you live.*

What should you consider before genetic testing?
Before moving forward with genetic testing, especially testing done outside of a healthcare setting, it can be helpful to zoom out and think about the bigger picture. Genetic information can offer valuable insights, and taking a few practical considerations into account can help ensure those insights fit comfortably into your broader financial and life planning.

• Talk with a genetic counselor. Genetic counselors can help you understand testing options, results, and potential future implications.
• Understand how timing and disclosure can matter. Applications for life, long-term care, and disability insurance typically ask about known medical conditions, past genetic test results, and sometimes pending evaluations. Many policies include a contestability period—often the first two years after coverage begins—when insurers may review the application and can rescind coverage if they determine information was inaccurately reported. Being thoughtful about timing and answering questions honestly can help prevent surprises later.
• Consider the context of testing. Genetic tests ordered through healthcare providers are typically protected under GINA and HIPAA. Direct-to-consumer testing may follow different privacy policies, so it’s worth understanding how your data will be handled.
• Read the fine print. Before clicking “agree,” review how your genetic data may be stored, used, or shared—and whether you can opt in or opt out of certain uses.

Genetic information can be powerful—and like any powerful information, it’s worth pausing to consider how it fits into your bigger picture.

Find a genetic counselor who can help you understand genetic data privacy and insurance here.

*Insurance regulations and genetic privacy protections can vary by state and may change over time. This article provides general information, but specific rules and practices may differ depending on where you live and the type of insurance you are applying for.

Glossary

• Life insurance: provides money to your chosen beneficiaries (such as family members) if you die. It is often used to help cover expenses like funeral costs, debts, or living expenses for loved ones after your death.
• Long-term care insurance: helps pay for care if you need help with everyday activities—such as bathing, dressing, or eating—due to illness, disability, or aging. This care may be provided at home, in an assisted living facility, or in a nursing home.
• Disability insurance: provides income if you are unable to work because of an illness or injury.
• Underwriting: a process of risk assessment where an insurer evaluates a person’s health, lifestyle, and history to decide if they are eligible for coverage, and the type and price of a policy.

References

1. https://www.eeoc.gov/genetic-information-discrimination
2. https://www.cdc.gov/phlp/php/resources/health-insurance-portability-and-accountability-act-of-1996-hipaa.html

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