What happens during genetic counseling?
It is a conversation, not a procedure. The National Cancer Institute says genetic counseling is generally advised before any genetic test for inherited cancer risk. It often happens again after the result. The counselor works out how likely an inherited risk is in the family. Then they explain what each possible result would mean. Written consent is taken before a test is ordered.
The part that happens before any blood is drawn
NCI lists what the first session covers. The list is longer than most people expect.
First, the counselor sizes up how likely it is that an inherited cancer risk runs in the family. Next comes a talk about whether testing is even a good idea. The harms are covered, not just the benefits.
Then the counselor explains what a positive, a negative, and an uncertain result would each mean. They also cover how it may feel to learn each one.
Two family topics come up here. One is the risk of passing a variant to children. A variant is a change in a gene. The other is the effect on relatives. A result about one person is partly a result about their siblings, parents, and children.
Last, the counselor explains which test fits this family history. Panels differ. Some look at a few genes, some at many. How exact the test is, and how its results are read, are part of that talk.
Written consent, and what signing it means
NCI is specific. Written consent is taken before a genetic test is ordered.
The form confirms that the person has been told about, and understands, five things. The purpose of the test. What it may mean for their health. Its risks and benefits. Other options. And their privacy rights. Anything on that list that still feels unclear is a fair reason to pause.
Privacy comes up because results usually enter the medical record. A 2008 law called GINA, short for the Genetic Information Nondiscrimination Act, bars the use of genetic information to set health insurance rates or to decide who gets hired. NCI also names the gaps in that law. It does not cover the military. It does not apply to life insurance, disability insurance, or long-term care insurance. Some states have added their own rules.
The result that is neither yes nor no
Counseling exists partly because of one kind of result. A variant of uncertain significance, or VUS, is a gene change with too little data behind it. Nobody yet knows if it raises cancer risk.
NCI's guidance here is calming and exact. Most of the time a VUS is later called benign, meaning it does not raise risk. So a VUS is usually not used to make care decisions. It can be reclassed either way as research builds up.
There is also the uninformative negative. No harmful variant is found, but nothing is explained either. NCI notes those people may still need more frequent checkups. The family history has not gone away.
After the result
NCI says the second session matters most when a result is positive. The counselor explains what the finding means. They may go over ways to lower risk and step up screening. They also refer people to support groups and offer emotional support.
Who does this work is not a small detail. NCI says it should be a trained genetic counselor, or another professional with experience in cancer genetics. Our guide to genetic counseling covers how to find one. The piece on genetic testing after a cancer diagnosis covers testing done to guide treatment.
NCI's fact sheet was last updated on April 18, 2024.
Sources
Want the full picture? Read our complete explanation: What a Genetic Counselor Does
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