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Public Understanding of the Science in Medicine: An Anthropological Perspective Ian Robinson, Centre for the Study of Health, Brunel University Many people have high expectations of science based medical research either in terms of curing their own, at present, incurable condition, or that of a family member or friend or more altruistically such conditions which affect thousands of others. Whilst most scientific research processes focused on this issue are relatively inaccessible to ordinary people, and increasing number of them are being drawn directly into the later stages of medical research in the form of clinical trials of potential therapies. At this point they are directly confronted with the rigorous demands involved in participation in such trials, in which their own prior understandings of science based medical research, and their expectations of it, may conflict with those of the scientists and clinicians running such trials. Already in the field of AIDS research there have been major confrontations between the scientific medical establishment and AIDS activists and charities over the meaning and worth of such trials, and by implication about the value of scientific research and its methods. This project will be a systematic exploration of ways in which medical scientists particularly those involved in running clinical trials, and those participating in them, understand and evaluate the nature and importance of the science within them. The major focus will be on clinical trials of therapies for (currently incurable) neurological conditions such as multiplesclerosis, motor neurone disease, Parkinson's Disease and Alzheimers Disease. Through interviews with leading scientists (especially 'trialists') in Britain and North America, and through evaluating the increasing body of data on participants' knowledge, concerns and expectations, the axes of conflict and congruence about the science in clinical trials will be amenable to study. Of particular significance in this process will be investigating the role of mediating organisations between scientists and ordinary people from which information is obtained about clinical trials, their running and their value. Thus examining the information giving and resource role of medical charities, pharmaceutical companies amongst other agencies will form a significant component of this research. This project is the culmination of some twenty years of research work with, and on national groups of people who have neurological conditions, as well on the medical charities who work with them. |
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