Informed consent in Leprosy Studies

Abstract

The control of leprosy continues to be an international health problem with a need to study and conduct research in many areas of leprosy control from treatment, to prevention of disabilities, to the social determinants of the disease. The ‘Enhanced Global Strategy for 2011 – 2015’ to further reduce the leprosy disease burden has been adopted and is being implemented by national leprosy programmes in countries where the disease is endemic. The strategy aims to reduce the rate of new cases with Grade-2 disabilities (visible disabilities) worldwide by $35% by the end of 2015. The WHO document indicates that the target is expected to help national programmes sustain their leprosy control activities and to monitor progress towards further reducing the disease burden. Within this strategy there are many research questions. Leprosy research requires different disciplines perspective and tools, from immunology, with a focus on cells, to anthropology with a focus on individuals, to epidemiology with a focus on populations and finally to policy with its focus on power and process. The common factor in all these disciplines is that they need people with leprosy, their families, their communities and the health care workers in the health systems, to agree to be involved in the research. If a person is to be involved in a research study, then their consent needs to be sought and acquired. A focus on the individual is essential and that is why the focus for the ethics of research is on protecting the rights of the individual study subject.