Abstract

ABSTRACT Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants’ needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study.

Highlights

  • Genomic research raises key ethical challenges related to consent, privacy, ownership of samples and data sharing (Cambon-Thomsen, Rial-Sebbag, & Knoppers, 2007)

  • A database linking real names and ID numbers was stored securely and separately from the data and is accessible only to the PIs. Reflecting on their experiences as participants in a previous genomic study on diabetes, which was complemented by a number of clinical tests – discussed in more details below – our interviewees highlighted a number of research practices that they felt could be improved upon and suggested new ones that could be adopted as a way of making research more responsive to the participants’ needs and contextual realities

  • Our analysis suggested three important themes: (1) information delivery and the consenting process, (2) feedback to research participants and (3) support during and after the study

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Summary

Introduction

Genomic research raises key ethical challenges related to consent, privacy, ownership of samples and data sharing (Cambon-Thomsen, Rial-Sebbag, & Knoppers, 2007). It has been observed that what constitutes an effective community engagement model when conducting genomic research in Africa remains unclear (Tindana et al, 2015). The development of such a model necessarily requires eliciting the views of genomic research participants in the African context. How best to explain key concepts in genomic research – for instance, those relating to data and sample sharing – may require the input of a range of stakeholders. There is a need to investigate the potential for this kind of issue to arise in the African setting, and to suggest mechanisms for ensuring awareness of the need for the inclusion of all essential information in consent documents

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