Understanding cultural values, norms and beliefs that may impact participation in genome-editing related research: Perspectives of local communities in Botswana.

Gene-editing research is a complex science and foreign in most communities including Botswana. Adopting a qualitative deliberative framework with 109 participants from 7 selected ethnic communities in Botswana, we explored the perceptions of local communities on cultural values, norms, and beliefs that may motivate or deter likely participation in the use of gene-editing related research. What emerged as the ethnic community's motivators for research participation include the potential for gene-editing technologies to promote access to individualized medications, and the possibility of protecting family members from genetic related diseases. Deterrents for research participation include cultural values such as implications of lineage for chieftainship, trust, fear or anxiety, uncertainty, and sensitivity on the use of gene-editing. Findings of our study have implications for continuous engagement with local communities to explore potential ways of addressing cultural sensitivities that can further deter their participation in future gene-editing related research.

Cultural Values and Beliefs of Selected Local Communities in Botswana: Implications for Human Subject Research Ethics Practice.

Calls have been made for researchers prospectively and continuously to engage study communities. If done, this typically occurs through a specific research study or collaboration. Rarely are community mores examined in-depth to understand implications for research ethics policy processes. We describe a qualitative study designed to understand local community values, beliefs, and practices that relate to research ethics in Botswana and explore how communities would want their interests represented. Through focus group discussions across two different selected ethnic communities and in-depth interviews with paramount chiefs, we highlight a range of community values and expectations that represent concrete behavioral representations of respect and trustworthiness. Communities are willing to engage in the process of enhancing research and research ethics policies and procedures. We invite future research and training that seek to connect local conceptualizations of substantive and procedural aspects of research ethics.