The Generative Brain

Genetic counselling comes first

More detail

Genetic counselling is a conversation about what is known in your family, what a test could show and what it could not, and what you would do with either answer. It comes before any test, it usually takes more than one appointment, and you can stop at any point.

What a predictive testing process can look like
  1. CounsellingTalk through what it could mean.
  2. AssessmentCheck the timing is right for you.
  3. Time to thinkOften a month or more.
  4. Blood sampleOnly if you choose to continue.
  5. Result in personWith support afterwards.

You can stop at any point, including before a result is given. Not testing is a valid choice.

Nobody is asked to decide about a genetic test on the day they first hear about one. The usual order is counselling, then time, then a choice.

What happens in genetic counselling?

The counsellor starts with your family: who was ill, when, and what was found at the time. From that they explain what a test on your own blood could show, and what it would leave open. They also ask what you would do with each possible answer, which is often the part people have not yet thought about.

A 2026 Israeli practice framework, written by a panel of neurologists, medical geneticists, genetic counsellors, a nurse and a psychologist with a family representative, sets out four steps for relatives who have no symptoms: a first counselling session, an assessment with a mental health professional, a separate appointment for the blood sample, and a session in which the result is given in person. The panel recommends at least a month between the first session and the blood sample. The same clinician who gave the counselling gives the result.

Not every country runs it exactly that way, but the pattern is similar: more than one appointment, time in between, and nothing done the same day.

Why is counselling put first?

Because the result cannot be given back. A genetic result also says something about other people in a family who have not asked for it, which is why counsellors spend time on who you would tell and when.

The waiting also protects people who are in the middle of something hard. The Israeli panel recommends encouraging someone in acute distress to delay testing, by around six months, rather than going ahead while a family is still in the first shock of a diagnosis or a death.

Do I have to have a test at the end?

No. Counselling is not a path to a test. Among 30 at-risk relatives seen at a French clinic between 2004 and 2017, 20 chose testing and 10 chose not to be tested. Both were ordinary outcomes of the same process. In the same group, anxiety was common in people who had tested and found they did not carry the family change and in people who had not tested, which is part of why support is offered either way. The right not to know covers that choice.

Testing is voluntary everywhere this site has checked. In Australia, for example, the national registry describes PRNP testing as voluntary with genetic counselling recommended.

Who arranges it?

The GP or the neurologist can refer you to a clinical genetics service. Finding a counsellor lists the routes, including services that work by video.

Costs differ by country, and the person booking the appointment can tell you what applies before you go.

Where next?

Predictive testing describes the test itself. What a result can tell you covers how much an answer settles. Family planning options is for people thinking about children. For a fuller account written for counsellors and clinicians, see more detail.

Nothing here is advice about your own situation. A genetic counsellor is the person who can answer that. Genetics and family risk is the hub for this section.

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