Updated On Feb 25, 2022
This information is meant to be used for educational purposes to inform providers, patients, and genetic service delivery stakeholders about genetics policy topics. Sharing of information, resources, or policy statements is no way an endorsement of stated positions by NCC.
Health insurance companies decide what their policies cover. For example, many health insurance policies do not cover infertility services, and certain dental care may only be covered in rare circumstances. Likewise, insurance companies decide whether or not they cover genetic testing, and if they do cover genetic testing, what types of genetic testing qualify for insurance coverage and when.
About 10-20 years ago, it was common for health insurance companies to refuse to provide coverage for genetic tests. However, it became clear that many genetic tests make health care more efficient and less costly. It was financially beneficial for health insurance companies to cover the cost of genetic testing in these situations.
Health insurance companies make policies to clarify when they will cover the cost of genetic testing. Some insurance companies have policies that genetic tests must change medical management. Using this rule, they can deny requests for paternity tests, as these do not affect health, while approving tests that help doctors choose medications or other therapies.
However, some tests may fall into a gray area for whether insurance coverage should occur. For example:
- Sam is a 72 year old man who is dying of colon cancer. He is currently on hospice, meaning his doctors are providing comfort care, but are no longer attempting to cure the cancer. His providers request genetic testing.
- Argument for coverage: While testing won’t change Sam’s treatment, it could change the treatment of his relatives if he is found to have a genetic mutation that caused his cancer. Health insurance should cover the cost if it will affect the health of a family member.
- Argument against coverage: Sam is already dying and no longer receiving therapeutic treatment. Genetic testing will not change his medical management at all. Health insurance companies are not responsible for paying for testing for the benefit of people who aren’t covered by their insurance.
For more information on this topic, please visit the National Human Genome Research Institute (NHGRI) webpage: “Coverage and Reimbursement of Genetic Tests.”
Legislation and Regulation
There are many state and federal laws that regulate health insurance. Some general resources on insurance coverage can be found at Kaiser Family Foundation (general coverage), Catalyst Center (children with special health care needs), HealthCare.gov (rights and protections).
Are you interested in learning what your state’s government or the federal government are currently proposing for either legislation or regulation? Check out Legislative/Tracking system for up-to-date information and subscribe to our Twitter channel to get the latest updates in your pocket.
Organizations working within the genetics community (national genetic organizations, advocacy organizations, etc.) have published positions on insurance. Explore these position statements below.