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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

Forthcoming events

Richard Doll Seminar: Design and analysis of prevalence surveys in low-resource settings

Tuesday, 25 February 2020, 1pm to 2pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, OX3 7LF

WEH/Ethox Seminar: Negligence and abortion - doctors' duty of care challenges and potentials in light of Montgomery v Lanarkshire Health Board

Wednesday, 26 February 2020, 11am to 12.30pm @ Seminar room 0, Big Data Institute, Old Road Campus, OX3 7LF

HERC Seminar: Learning healthcare systems for cost-effective precision oncology.

Thursday, 27 February 2020, 12pm to 1pm @ Seminar room 0, Big Data Institute, Old Road Campus, OX3 7LF

The Global Response to the Novel Coronavirus (SARS-CoV-2) Outbreak

Thursday, 27 February 2020, 2.30pm to 4pm @ Seminar rooms, Big Data Institute

Richard Doll Seminar: The Risk of Everything – using linked electronic health records to develop and validate risk prediction tools for use in clinical care

Tuesday, 03 March 2020, 1pm to 2pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, OX3 7LF

WEH/Ethox Seminar: Building research capacity through North-South Partnerships: some ethical reflections and a social justice agenda

Wednesday, 04 March 2020, 11am to 12.30pm @ Seminar room 0, Big Data Institute, Old Road Campus, OX3 7LF