Abstract
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.
Highlights
In recent years, the key ethical challenges in the review and conduct of genomic research and biobanking in Africa have received considerable attention (de Vries et al, 2011; Marshall et al, 2006; Nyika, 2009; Parker & Bull, 2009)
To elicit views on what will count as good ethical practice when seeking consent to genomics and biobanking, it was important to explore stakeholders’ general knowledge about key concepts in genomics and biobanking such as the rationale for sample and data sharing
The interviews with genomic research participants were conducted 6 months after their participation in the H3Africa genomic study and most were able to recall in detail each of the processes they were taken through during the project
Summary
The key ethical challenges in the review and conduct of genomic research and biobanking in Africa have received considerable attention (de Vries et al, 2011; Marshall et al, 2006; Nyika, 2009; Parker & Bull, 2009). A review of empirical studies on broad consent has suggested that there is a growing acceptance of broad consent, i.e. consent obtained at the time of sample collection for future research purposes, as a model for future research with human biological samples (Tindana & de Vries, 2016). This is based on the challenges with seeking specific consent where it is not possible to specify all future research uses in detail or where reconsenting participants is very difficult. There is recognition that to be ethically acceptable, broad consent should be supported by appropriate governance structures to increase the utility of the samples and allow important scientific projects to be undertaken while respecting the rights and protecting the interests of research participants and their communities (Grady et al, 2015; Tindana & de Vries, 2016)
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