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Deliberation to Promote Shared Sovereignty in Health Research: Four Questions to Clarify Goals, Methods, and Scope

Jantina de Vries, Syntia Nchangwi Munung & Paulina Tindana

American Journal of Bioethics 16 (10):50-52 (2016)

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Consulting communities on feedback of genetic findings in international health research: sharing sickle cell disease and carrier information in coastal Kenya. [REVIEW]Vicki Marsh, Francis Kombe, Raymond Fitzpatrick, Thomas N. Williams, Michael Parker & Sassy Molyneux - 2013 - BMC Medical Ethics 14 (1):41.details International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants’ perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research practice locally, (...) Download Export citation Bookmark 9 citations
Governance of Transnational Global Health Research Consortia and Health Equity.Bridget Pratt & Adnan A. Hyder - 2016 - American Journal of Bioethics 16 (10):29-45.details Global health research partnerships are increasingly taking the form of consortia of institutions from high-income countries and low- and middle-income countries that undertake programs of research. These partnerships differ from collaborations that carry out single projects in the multiplicity of their goals, scope of their activities, and nature of their management. Although such consortia typically aim to reduce health disparities between and within countries, what is required for them to do so has not been clearly defined. This article takes a (...) Download Export citation Bookmark 13 citations
Exploring researchers’ experiences of working with a researcher-driven, population-specific community advisory board in a South African schizophrenia genomics study.Megan M. Campbell, Ezra Susser, Jantina de Vries, Adam Baldinger, Goodman Sibeko, Michael M. Mndini, Sibonile G. Mqulwana, Odwa A. Ntola, Raj S. Ramesar & Dan J. Stein - 2015 - BMC Medical Ethics 16 (1):1-9.details BackgroundCommunity engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community from research-related risks, (...) Download Export citation Bookmark 9 citations

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