Chapter 3. How to improve the sharing of data collected during research conducted in countries with limited resources ? Workshop report, Veyrier-du-Lac, 5 November, 2015

Abstract

c On the 5^th of November 2015, the Inserm Ethics Committee, Fondation Mérieux and the Global Forum on Bioethics in Research (GFBR), organized a workshop at Les Pensières, Annecy, France, bringing together more than thirty scientists and ethicists, from twenty countries around the world, to debate the way to ensure better sharing of data and biological samples collected during trials in countries with limited resources.
Propositions were made to improve the practices of different stakeholders of scientific research (researchers, members of ethics committees, key community representatives) and policy makers (ministers, funding agencies), on the following issues : How to foster equitable scientific collaborations in international research projects ? How to protect the interests of the study participants when sharing data and biological samples ? How to ensure appropriate information and obtain informed consent from individuals with different cultures and levels of education ? In this publication on the use of “big data” in health, this report from the workshop of November 5, focuses on the aspects related to the sharing of research data.