Adults with incapacity may want to participate in medical or other research, to help in the search for more knowledge about the illness and diagnosis, treatment and prevention. However, their consent must not be taken for granted. Some people will be able to take such decisions for themselves, and may be able to consent to research. They may wish to indicate their general willingness to participate in research by making an advance statement to say so, or by granting someone a welfare power of attorney with the power to consent to research on their behalf. The new Act sets out clear rules for what medical, surgical, psychological, nursing or dental research can be done using people who cannot consent.
Under the Act, research involving people unable to consent to take part can only be done if it could not be carried out with people who can consent. The research must be about the cause, diagnosis, care or treatment of the person's illness. It must be likely to produce a 'real and substantial benefit' for the person, or to bring understanding that will help other people with the same condition.
The research must be approved by a special Ethics Committee and must involve no more than minimal foreseeable risk or discomfort. The adult should be withdrawn from the research immediately if at any time he or she objects in any way or appears to suffer discomfort.
The research cannot involve anyone who is unwilling to take part. The researchers must get consent from the person's welfare attorney or guardian, if there is one, or else from the nearest relative. If it is not possible to get this consent, it will not be legal for the adult to participate.
This information is adapted from Dementia: Money & Legal Matters - A Guide , ©Alzheimer Scotland - Action on Dementia, 2002