Genetic Testing FAQ — Insurance, Process & Privacy | Genetic Insights

Question 1

What factors determine whether insurance will pay for genetic testing?

Accepted Answer

Health insurance coverage for genetic testing is primarily determined by whether the test is deemed "medically necessary," the patient's personal or family medical history, and the specific rules of their insurance plan. While roughly 50% of commercial insurance plans cover advanced testing targeting single genes or evaluations involving small panel testing for genetically-related conditions, companies rarely make these guidelines clear to consumers upfront.

Core criteria include a documented history of hereditary conditions like BRCA1/BRCA2 breast cancer or Lynch syndrome. Private insurers cover screening if guidelines indicate high risk, but for cancer, Medicare strictly requires a personal history of cancer — not just family history. Targeted single-gene panels are approved more readily than massive whole-exome or whole-genome sequencing.

Importantly, Medicare provides no coverage for asymptomatic individuals regardless of family risk. Most genetic testing companies offer a self-pay option that may be significantly less expensive than using insurance — especially when a high deductible has not been met or when there is a high co-insurance (cost-sharing) requirement for genetic testing.

Question 2

How is genetic testing done?

Accepted Answer

DNA is typically collected using a cheek swab or a blood draw. Saliva tests can also be used, however blood draws are the most common method in clinical settings. A standard adult sample requires only 3 to 4 milliliters — roughly one small tube. For newborns or children, labs can work with as little as 2 milliliters.

If you have had a blood transfusion recently, labs typically ask you to wait at least two weeks (or four weeks after a whole blood transfusion) before collecting a sample, since donor blood can contaminate results. Chemotherapy within the last 120 days can also affect DNA quality.

Choosing the right collection method:
• Cheek swab — easiest, non-invasive, high accuracy for most consumer and legal DNA testing
• Saliva — good for many tests, but watch for contamination; sometimes better yield than swabs
• Blood — preferred for specialized medical or prenatal testing, or when maximum DNA quality is needed

Question 3

Can genetic testing results be used to discriminate against me?

Accepted Answer

The Genetic Information Nondiscrimination Act (GINA) protects you from health insurance and employment discrimination based on genetic information. However, GINA does not apply to life insurance, disability insurance, or long-term care insurance. Once a genetic result is placed in your electronic health record (EHR), these companies can legally use it to deny you coverage or raise your premiums.

If insurance pays for your testing, they have a legal right to view those results. If you pay for your testing out of pocket, they do not have this right — unless the results are shared with your doctor, entered into your medical record, and you subsequently consent to a request for those records.

A wise option for those interested in genetic testing is to obtain any desired life, disability, or long-term care insurance plans prior to pursuing genetic testing, so that results cannot be used against you in those underwriting decisions.

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