Bioethics & Engagement
At the Department of Bioethics & Engagement, we conduct ethics research such as how to ethically involve children, pregnant women, migrants and other under-served groups in medical research. We facilitate engagement activities and study how to meaningfully engage communities in order for our research to be trustworthy, impactful, ethical and ultimately to improve lives of people in resource-poor settings.
Our main areas of work are
Ethics and engagement research
Research ethics guidelines have evolved to protect vulnerable groups such as children, pregnant women and migrants from taking part in research. Although these guidelines are well-meaning, they have resulted in a lack of research in these populations making them even more vulnerable primarily due to the lack of evidence-based medical care. We continue to work on characterising these vulnerabilities and ways of mitigating them.
We also conduct engagement evaluation and research. Very little has been published on how and if community engagement achieves its intended aims.
In addition, we conduct ethics research alongside scientific projects such as malaria human challenge studies and adaptive designs for trials.
Community, stakeholder and public engagement
We have a range of engagement activities to facilitate involvement of our host research communities so that they are able to provide feedback, and contribute to setting the research agenda. This involves consultation with community advisory boards, and employing innovative approaches in engagement such as using art and theatre.
We will continue to work on ethical issues around data sharing and facilitate data sharing. There is a pressing need to ensure that data sharing does not exacerbate existing inequalities between researchers in higher and lower income settings. Our plans include: 1) Tracking shared datasets and conducting in-depth case studies to document the impact of data sharing. 2) Identifying the infrastructure and processes required to promote data sharing for all research and the costs of implementing these including in resource-poor settings. 3) Conducting social science research to understand key stakeholders’ experiences in data sharing, key drivers and barriers to data sharing and 4) developing a short course on data sharing for health research.