There are different outputs of research, being able to invent a technology is one of them. Other types of research are about proving whether a certain theory of knowledge holds to be possible. My kind of research is about human behaviour, for example, how can researchers best communicate their work to communities and participants, and what challenges do they face? And then I look at the at international guidelines on how research should be conducted and ask how well they are being implemented in our setting and whether there is need to review them.
Based my research, we have a deeper understanding of how complex it is for researchers to explain research in a way that people understand well. In particular, we know that people often think that research is about treatment, and this is a problem. I have, for example, shown that researchers face what we call ‘silent refusals’, and the guidelines are not at all clear on how to handle this situation – where people agree to participate in research, but keep dodging visits. There are many factors that contribute to this – including social and cultural norms on who makes decision at the home – and researchers need to be aware of these.
I like the opportunity to learn about how well these international ethics guidelines work in practice, and whether there is need to review them.