Rules of engagement: perspectives on stakeholder engagement for genomic biobanking research in South Africa

BMC Medical Ethics
Ciara StauntonKeymanthri Moodley

Abstract

Genomic biobanking research is undergoing exponential growth in Africa raising a host of legal, ethical and social issues. Given the scientific complexity associated with genomics, there is a growing recognition globally of the importance of science translation and community engagement (CE) for this type of research, as it creates the potential to build relationships, increase trust, improve consent processes and empower local communities. Despite this level of recognition, there is a lack of empirical evidence of the practise and processes for effective CE in genomic biobanking in Africa. To begin to address this vacuum, 17 in-depth face to face interviews were conducted with South African experts in genomic biobanking research and CE to provide insight into the process, benefits and challenges of CE in South Africa. Emerging themes were analysed using a contextualised thematic approach. Several themes emerged concerning the conduct of CE in genomic biobanking research in Africa. Although the literature tends to focus on the local community in CE, respondents in this study described three different layers of stakeholder engagement: community level, peer level and high level. Community level engagement includes potential partic...Continue Reading

References

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Citations

Sep 13, 2020·BMC Medical Ethics·Ambroise Kouamé KintossouMireille Dosso
Sep 23, 2020·International Journal of Environmental Research and Public Health·Alison SpenceRos Sambell
Jun 25, 2019·Journal of Empirical Research on Human Research Ethics : JERHRE·Ciara StauntonKeymanthri Moodley
Oct 8, 2020·Personalized Medicine·Ida GriesemerJulianne M O'Daniel
Feb 11, 2021·Biopreservation and Biobanking·Engela H ConradieBarend C Vorster
Mar 26, 2021·Global Bioethics = Problemi Di Bioetica·Erisa Sabakaki MwakaDavid Kaawa-Mafigiri

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