Ethox Seminar: How can health research data from low and middle settings be shared ethically and equitably?

Abstract: 

Data-sharing is increasingly seen as a core requirement for effective and efficient biomedical research, resulting in the development of data sharing policies and processes worldwide.  Calls have been made for approaches to sharing which ensure the appropriate balancing of potential benefits and potential harms amongst stakeholders, to avoid exacerbating existing inequalities between higher and lower income settings. In the absence of appropriate resources and infrastructure to support best practices in low and middle income settings, concerns arise that requirements to share data may lead to adverse effects on researchers’ careers, result in data being shared in formats with little or no utility for secondary research, or data being shared without adequate oversight and protections in place for participants who contributed to the research. In this presentation three speakers review perspectives from researchers and research participants in diverse low and middle income settings about promoting trust, fairness and reciprocity in data sharing, and addressing sources of reticence about making data available.

Panel Chair:

Michael Parker, Director of the Wellcome Centre for Ethics and Humanities and The Ethox Centre, Nuffield Department of Population Health

Speakers:

• Susan Bull, Senior Researcher, The Ethox Centre, Nuffield Department of Population Health
• Vicki Marsh, Senior Public Health & Social Scientist, KEMRI Wellcome Trust Programme, Kenya and Associate Professor, Centre for Tropical Medicine and Global Health, Nuffield Department of Medicine
• Laura Merson, Associate Director, Infectious Diseases Data Observatory, Centre for Tropical Medicine and Global Health, Nuffield Department of Medicine