Do I need genetic counseling before a genetic test?

Generally, yes. The National Cancer Institute states that "genetic counseling is generally recommended before any genetic testing for inherited cancer risk." NCI adds that it "may also be performed after the test, especially if a positive result is found."

The reason is not gatekeeping. It is that the results are much harder to read than most people expect.

Three answers, not two

Most medical tests come back positive or negative. Genetic tests have a third outcome, and it causes the most trouble.

A positive result means the laboratory found "a genetic change that is associated with an increased cancer risk."

A negative result means "the laboratory did not find any harmful genetic changes in the genes tested." Note the last four words. NCI describes a true negative more narrowly. It applies when a variant is already known to run in your family and you did not inherit it. Without that, a negative may just mean the right gene was never tested.

The third is a variant of uncertain significance, usually shortened to VUS. NCI defines it as "a genetic change for which there is not enough data available to know whether it increases the cancer risk or not." NCI adds that "a VUS may be reclassified in the future as researchers learn more about these genetic changes," and that most often it is reclassified as benign.

A VUS is not a positive result. On its own it should not lead to surgery or a change in screening. People have made big, permanent decisions on the strength of one. Counseling before and after a test is meant to stop that.

It is not only your result

NCI points out something true of almost no other test: "unlike most other medical tests, genetic tests can reveal information not only about the person being tested but also about that person's blood relatives."

A positive result hands your siblings, children, and parents a question they did not ask for. Counseling covers how and when to tell them. It also covers what testing they could then choose.

What the appointment actually involves

A counselor works out how likely an inherited cancer is in your family. They discuss whether testing is right for you at all. They explain "the specific test(s) that might be used and the technical accuracy of the test(s)." They also go through the emotional risks and benefits, and what could be done with each result.

NCI notes that "written informed consent is obtained before a genetic test is ordered." Meeting a counselor is not a commitment to test. Plenty of people leave having decided not to.

Two things worth knowing beforehand

First, the tests you can buy yourself. As of January 2024, NCI reports just one FDA-approved direct-to-consumer test for inherited cancer risk. It "tests for three different BRCA gene variants that are common in people of Ashkenazi Jewish descent." NCI says about 80% of cancer-causing BRCA variants are missed by that approach. So a clear result from it is not the all-clear it looks like.

Second, privacy. The Genetic Information Nondiscrimination Act, known as GINA, became law in 2008. It "prohibits discrimination based on genetic information in determining health insurance eligibility or rates and suitability for employment." The gaps matter as much as the shield. NCI notes GINA does not cover members of the military. It also does not apply to life, disability, or long-term care insurance.

Ask your doctor for a referral to a certified genetic counselor, or another clinician trained in cancer genetics. Bring a written family history. Note who had which cancer, at what age, and on which side. That one page shapes the whole conversation.