Patients' experiences and views of clinical trials

This article explores whether the experience of participating in a clinical trial was similar to what patient volunteers had expected, prior to agreeing to take part. It also considers patients' views on four aspects of participation that may help to determine whether the decision to become a research subject was truly an autonomous one, namely: whether patients feel that (i) doctors 'know best' when it comes to taking part in a trial; (ii) refusing to take part would upset the doctor; (iii) there is little risk associated with participation, and (iv) people have a moral duty to be involved in such trials.

More than a third of patients had no particular expectations of what trial participation would be like. Over half did not believe that doctors knew best about whether or not they should participate, and the vast majority rejected the proposition that a refusal to participate would have upset the doctor. Half of the patients believed that there was little risk in testing new drugs, and most felt that people do not have a moral duty to become research subjects.