To be a “guinea pig” in a clinical trial is not an experience people volunteer for lightly. We need only think of the dramatic side-effects of the so-called Elephant Man drug trial at Northwick Park in 2006 to be reminded that volunteers can end up worse off. In that case, there was financial reward for the unfortunate guinea pigs, though most trials do not offer cash incentives. Either way, the prospect of being given drugs or operated on is daunting when we suspect a lack of emotional care and consultation.
Even the term guinea pig has outmoded and unethical connotations. People taking part in clinical experiments should not be seen as unknowing animals. Indeed, a number of recent experiences have convinced me that we need to redefine the term human guinea pig to mean an active, able and knowledgeable person, who agrees to participate in research. In order to make this happen, patients need to be involved as much as medical experts.
Not long ago I attended the launch of a new service on healthtalkonline, the website of the research charity Dipex. Founded by GP Ann McPherson, who at the time had breast cancer, and Andrew Herxheimer, who had undergone a knee replacement, the website provides an archive of videos in which people talk about their medical experiences.
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