Examining stakeholder engagement about biobanking, and if and how the concept of social licence may be useful using the KEMRI-Wellcome Trust Research Programme (KWTRP) as a case study
Dr Dorcas Kamuya
KEMRI-Wellcome Trust Research Programme
Biobanks offer the potential to revolutionise healthcare, but remain in their infancy in low-and-middle income countries (LMICs), despite the number of laboratories in these settings. A huge scientific resource of 1.5 million biological specimens is held at the KEMRI-Wellcome Trust Research Programme (KWTRP) on the Kenyan coast. The programme intends to transform these samples into a functional biobank to support research aimed at improving public health. In a context where biobanking has the potential to evoke mistrust towards research, a prerequisite is broad buy-in from key stakeholders, including the local residents who donated most of the samples.
This research aims to examine the processes that should be followed to engage local communities when setting up a biobank. Methods will include in-depth interviews, focus group discussions and deliberative forms of engagement. In examining this complex ethical issue, I consider the concept of a ‘social licence’ and how it may be useful when framing the processes of engagement.
The study will make an important contribution to local and national biobanking policy, and inform understanding of the ethical issues involved in developing policy for biobanking.