Understanding biobanking : An assessment of the public engagement speaking book intervention Biobanking and Me

Meaningful engagement with donors of biological samples intended for human-sample biobanking increases knowledge, and allows donors to make informed decisions. Informed donors provide a platform for public awareness, allowing communities to understand the impact of research, and may even encourage more people to donate biological samples. The Biobanking and Me speaking book was written to explain relevant concepts, including biobanks, genetic research and participant rights, to persons from any educational level or background. Two bilingual versions of the speaking book (English-Afrikaans and English-isiXhosa) were produced, and the impact of the speaking book was assessed

A framework for the promotion of ethical benefit sharing in health research

There is an increasing recognition of the importance of including benefit sharing in research programmes in order to ensure equitable and just distribution of the benefits arising from research. Whilst there are global efforts to promote benefit sharing when using non-human biological resources, benefit sharing plans and implementation do not yet feature prominently in research programmes, funding applications or requirements by ethics review boards. Whilst many research stakeholders may agree with the concept of benefit sharing, it can be difficult to operationalise benefit sharing within research programmes. We present a framework designed to assist with identifying benefit sharing opportunities in research programmes. The framework has two dimensions: the first represents microlevel, mesolevel and macrolevel stakeholders as defined using a socioecological model; and the second identifies nine different types of benefit sharing that might be achieved during a research programme. We provide an example matrix identifying different types of benefit sharing that might be undertaken during genomics research, and present a case study evaluating benefit sharing in Africa during the SARS-CoV-2 pandemic. This framework, with examples, is intended as a practical tool to assist research stakeholders with identifying opportunities for benefit sharing, and inculcating intentional benefit sharing in their research programmes from inception