IFGeneRA Collaborative Centre ELSI Core

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Project Summary – IFGeneRA ELSI Core The IFGeneRA ELSI Core will be a key resource for the H3Africa Consortium in responding to ethical challenges that emerge in the course of the H3Africa Consortium. The IFGeneRA ELSI Core will combine significant expertise in bioethics that can be used to conduct literature searches and reviews, assist in the development of policies and guidelines, or consult on particular ethical challenges that have emerged. Specifically, the IFGeneRA Core aims to: Aim 1: Develop an implementation guide for the Framework for Best Practice We will use the significant ethics guidance and policy drafting experience represented in the IFGeneRA ELSI Core to develop an implementation guide for the H3Africa Framework for Best Practice for Genomics Research and Biobanking in Africa. Aim 2: Provide research assistance to the Chair of the WG Ethics A key bottleneck in the success of the H3Africa Working Group on Ethics is its limited access to resources and manpower to conduct literature searchers, prepare policy drafts, and source relevant international guidance documents. To alleviate this challenge, we propose to make available an ad hoc research assistant that can assist the Working Group in these tasks. Aim 3: Be available to consult with H3Africa projects about ethical challenges they face Following requests by, or in discussion with, the H3Africa Working Group on Ethics, we will be available to conduct literature reviews and consult on ethical challenges that arise in the context of H3Africa research. Aim 4: Support the newly established H3Africa Biospecimens and Data Access Committee Taking guidance from the H3Africa Coordinating Centre, we will be available to elucidate any ethical challenges that may arise in deciding on the appropriateness of data access requests should that be required. Aim 5: Host a workshop on Feedback of Findings in Genomics Research in Africa Drawing on our project findings, we will organize a workshop or conference for H3Africa researchers to discuss views on and experiences of feedback of individual genetic research findings in genomics research in Africa in BY5 of the Centre.