Incapacitated adults

Research involving incapacitated research subjects is only allowed if the research complies with special rules. Incapacitated adults are, for example, elderly people suffering from extreme dementia, people with mental disabilities, patients in a coma, or people with a serious psychological illness. These are vulnerable people. Often they will find it difficult or even impossible to visualise the research or to give an opinion. Others then have to do it for them. For that reason the law imposes extra requirements on research with these groups of people.


In order for these people to become research subjects, a representative can give their consent. This representative can be somebody appointed by the court, such as a curator of a mentor. In the absence of such people, an authorised representative can give permission. If there is no authorised representative, the spouse, registered partner or another life partner of the research subject can give permission. If none of these people are available, the research subject's parents can give permission. If there are no parents, then adult children who can be contacted reasonably easily can give permission. Failing that, brothers and sisters of the research subject who can be contacted reasonably easily can give permission for participation in the research.


Researchers must withdraw incapacitated adults from the research if they object. Examples of objections are (indications of) fear, sadness, or anger.


If you change your mind, you always have the right not to allow the research subject to participate. The representative can always terminate the research subject's participation even during the research. They do not need to say why.

If you do not want the person you represent to participate in the research, you do not need to take any additional action. You do not have to sign anything. Neither do you need to explain why you do not want them to participate. If the incapacitated adult is a patient, they will receive normal treatment.