Not wanting to know is a position, not an avoidance of one. People reach it for good reasons: the result cannot be undone, there is no treatment that waiting would cost them, and they would rather spend the years they have without a date attached to them.

Is it really an accepted choice?

Yes. Testing is voluntary wherever this site has checked; the Australian national registry states that genetic testing is entirely voluntary. Counselling exists to help you decide, in either direction, and a counsellor who pushes is not following the published frameworks.

It is also a common choice. Among 30 at-risk relatives seen at a French clinic between 2004 and 2017, 10 chose not to be tested and 20 chose testing. Neither group was unusual.

Will I feel better if I just find out?

There is no good evidence that one choice is easier than the other. In that same French group, anxiety was common both in people who had learned they did not carry the family change and in people who had not tested. People who learned they were not carriers described relief alongside continuing worry about relatives. The numbers are small, and they are the best that exists in prion disease.

What this does mean is that support is worth asking for either way. Finding a counsellor lists the routes to emotional as well as genetic support.

Can I change my mind later?

Yes, in both directions. You can decline now and ask years later. You can start the process, go to the appointments, and stop before the blood test or before the result. In the French clinic, one person who initially declined came back and was tested later.

Does declining cut me out of anything?

Less than people expect.

Family planning options exist that do not require you to learn your own status. One is called exclusion testing: embryos are chosen that did not inherit the at-risk copy of the gene from the affected grandparent, while the parent’s own status stays unknown. The 2026 Israeli framework describes it as available at specialist centres there. A 2014 case report in a family with a different PRNP change also described a non-disclosure protocol, in which the person remains unaware of their own genotype. Availability and funding differ by country. Family planning options has more.

Research can also be open to you. An Italian prevention trial in families with fatal familial insomnia was designed with the family association itself. The people taking part did not want to know their genotype, so the trial was built around that: enrolment by age, assessments by staff blind to genotype, and identical tablets so that nobody could work out their status from what they were given. Joining research without testing covers what is open now.

How do I tell my family?

That is often the harder part, because relatives may want a different thing from you. There is no obligation to explain your reasoning, and no obligation to keep it private either. Talking with family goes through the common situations, including when someone else in the family has tested and wants to tell you their result.

If you would rather not be told other people’s results, you are allowed to say so, to relatives and to clinicians.

Where next?

Predictive testing describes what the other choice involves, if you want to see it laid out before deciding. Genetics and family risk is the hub for this section.

Nothing here is advice about your own decision, and this page is not an argument for either answer. A genetic counsellor can talk it through with you as many times as you need.

Sources for this page