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At Kilifi in Kenya, Dr Sassy Molyneux is looking into informed consent and how it relates to the Programme's day-to-day work. The parents of more than 4000 children sign consent forms each year at Kilifi, thereby agreeing to studies ranging from the testing of new drugs and procedures, through to purely observational research. Thousands more consent to interviews and procedures such as blood sampling.
All studies must receive ethical approval in advance from independent local and international committees, covering issues such as informed consent. But to what extent do local people involved in the studies appreciate what they are consenting to?
'Medical research' has its own subtle vocabulary and concepts. There is no equivalent word for 'research' in the local language, Giriama, and near-equivalents such as 'discovery' or 'finding out' do not distinguish between research and diagnosis.
Dr Molyneux and Kilifi staff are developing a form of wording that tries to describe what happens to samples used in research projects, using locally understandable concepts and language.
Dr Molyneux's research will seek to provide answers to two fundamental questions: when parents give their consent, do they fully understand what they are agreeing to? And more generally, how does the wider community perceive the work being carried out in Kilifi? The answers will help staff communicate more effectively with the local community and help maintain trust between researchers and their subjects.
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14/6/06 [WTD023994] The meaning of research.doc