[Chapter 3. How to improve the sharing of data collected during research conducted in countries with limited resources].

On the 5th 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.

Fostering responsible research with genome editing technologies: a European perspective.

In this consensus paper resulting from a meeting that involved representatives from more than 20 European partners, we recommend the foundation of an expert group (European Steering Committee) to assess the potential benefits and draw-backs of genome editing (off-targets, mosaicisms, etc.), and to design risk matrices and scenarios for a responsible use of this promising technology. In addition, this European steering committee will contribute in promoting an open debate on societal aspects prior to a translation into national and international legislation.