1. Informed consent in genomic research and biobanking: taking feedback of findings seriously
- Author
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Tindana, P, de Vries, J, Debpuur, C, Rutakumwa, R, Mweemba, O, Seeley, J, and Parker, M
- Subjects
Health (social science) ,Process (engineering) ,Broad consent ,data sharing ,Genomic research ,Context (language use) ,0603 philosophy, ethics and religion ,03 medical and health sciences ,Informed consent ,Sociology ,lcsh:Social sciences (General) ,Human heredity ,lcsh:R723-726 ,0303 health sciences ,business.industry ,Health Policy ,030305 genetics & heredity ,Consent in genomics research in sub-Saharan Africa ,06 humanities and the arts ,Public relations ,Research process ,Biobank ,Data sharing ,Philosophy ,sample sharing ,genomic research feedback of findings ,Africa ,lcsh:H1-99 ,060301 applied ethics ,lcsh:Medical philosophy. Medical ethics ,business ,Research Article - Abstract
Genomic research and biobanking present several ethical, social and cultural challenges, particularly when conducted in settings with limited scientific research capacity. One of these challenges is determining the model of consent that should support the sharing of human biological samples and data in the context of international collaborative research. In this paper, we report on the views of key research stakeholders in Ghana on what should count as good ethical practice when seeking consent for genomic research and biobanking in Africa. This study was part of a multi-country qualitative case study conducted in three African countries: Ghana, Uganda and Zambia under the auspices of the Human Heredity and Health in Africa initiative (H3Africa). Our study suggests that while participants are willing to give consent for their samples and associated data to be used for future research purposes, they expect to receive feedback about the progress of the research and about the kinds of research being undertaken on their samples and data. These expectations need to be anticipated and discussed during the consent process which should be seen as part of an ongoing communication process throughout the research process.
- Published
- 2020