Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India

Abstract

Background: There is growing interest in advancing biobanking and genetic research in many countries, including India. Concurrently, more importance is being placed on participatory approaches involving the public and other stakeholders in addressing ethical issues and policymaking as part of a broader governance approach. We analyse the tools, purposes, outcomes and limitations of engaging people towards biobanking and genetic research governance that have been undertaken worldwide, and explore their relevance to India. Methods: Papers to be reviewed were identified through a targeted literature search carried out using ProQuest and PubMed. Retrieved papers were analysed with the R package for Qualitative Data Analysis using inductive coding and thematic analysis, guided by the Framework Method. Results: Empirical studies on public and community engagement in the context of biobanking and or genetic research show a predominance towards the end of the last decade, spanning 2007 to 2019. Numerous strategies—including public meetings, community durbars, focus group discussions, interviews, deliberations, citizen-expert panels and community advisory boards—have been used to facilitate communication, consultation and collaboration with people, at the level of general and specific publics. Engagement allowed researchers to understand how people’s values, opinions and experiences related to the research process; and enabled participants to become partners within the conduct of research. Conclusions: Constructs such as ‘co-production’, ‘engagement of knowledges’, ‘rules of engagement’ and ‘stewardship’ emerge as significant mechanisms that can address the ethical challenges and the governance of biobanking and genetic research in India. Given the inherent diversity of the Indian population and its varying cultural values and beliefs, there is a need to invest time and research funds for engagement as a continuum of participatory activity, involving communication, consultation and collaboration in relation to biobanking and genetic research. Further research into these findings is required to explore their effective employment within India