Public opinion concerning consent

Whatever the underlying academic arguments, public opinion seems to support properly informed consent. Reported cases of individuals included in trials without their knowledge or full consent have met with considerable outrage. Cases such as that described in Box 2.1 do nothing to promote the cause of trials or engender public confidence.

'When scientists have academic arguments about clinical research they should remember that they are dealing with people's lives. We have feelings and opinions. We don't want to be just another statistic; we're real, we exist, and it's our bodies that you are experimenting with'. [21]

Frank explanation about trials and the interventions involved can be difficult and potentially distressing for patients. Undoubtedly, there are those who do not wish to be told such details. However, the costs of avoiding such disclosure, both in terms of the harm to those involved and the damage to trials generally, are great. If full disclosure means that some patients cannot be entered in trials, then it is a price we have to pay. It is to be hoped that in the long term, open discussion between doctors and patients, together with public debate and education about trials, will create an environment within which a greater proportion of patients are willing to become involved in clinical research, on a more fully informed basis. From a purely pragmatic point of view, if trials are to be acceptable to the public who take part in them (and in one way or another fund them), then researchers need to address the issues surrounding informed consent. There is certainly much scope for empirical research into the best ways of going about this.

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