The ethics of health research in humans may be universal, but there can be big differences across contexts and circumstances in interpretation and implementation of ethical issues or principles. Current guidelines and regulations are also an inadequate response to the complex, often unpredictable and ever shifting ethical dilemmas that researchers face in the field. A group of social scientists at the KEMRI-Wellcome Trust programme have evolved a body of work aimed at supporting the development and implementation of locally appropriate and ‘ethically sound’ research. Key areas of work in research ethics include:
– Exploring ethics issues and experiences from the perspective of key stakeholders in relation to informed consent, community engagement, benefit-sharing and data sharing – Identifying researchers ‘and institutions’ responsibilities and the bases for these responsibilities – Building new skills or approaches to support inclusion of communities in research and in guideline development, including deliberative methodologies, and participatory action research
Social scientists working on these topics typically do so in collaboration with researchers working on other themes in the programme, often with the intention of supporting the development of institutional guidelines. Research has been conducted alongside or been embedded within clinical, epidemiological or health systems studies (for example malaria vaccine trials, a community based RSV trial, studies involving ‘men who have sex with men’, and the FEAST trial), or it has focused on a particular mechanism or approach to involving communities in research (for example the KEMRI-Community Representative network, the participatory schools engagement programme, or working with fieldworkers, or Community Health Workers). In some cases, it has specifically focused on institutional policy such as benefit-sharing or data-sharing. We feed into international research ethics thinking through collaborations with others and involvement in international committees, including core membership in the Global Health Bioethics Network. For further information see https://www.ethox.ox.ac.uk/research-1/global-health-ethics/the-global-health-bioethics-network; and https://resyst.lshtm.ac.uk/rings.