Title of Presentation
“Sample and data sharing for research: Why is it so vividly advocated and so poorly done? The route towards an enlightened future”
Date and Place
Anne Cambon-Thomsen, MD, immunogeneticist, with diplomas in human biology and health ethics, is Emeritus Research Director in CNRS (French national centre for scientific research). She works in a joint research Unit on epidemiology and public health at Inserm (National Institute for Health and Medical Research) and University Toulouse III Paul Sabatier, France, leads the societal platform of the Toulouse Genopole, is Co-Director of the Common Service ELSI of BBMRI-ERIC and Champion of the next EuroScience Open Forum (ESOF) in Toulouse 9-14 July 2018. She has experience in national and European ethics bodies and ELSI of European / international projects.
Data sharing is becoming a major aspect of biomedical research. This is not new but the scale and the central aspect of this dimension in science policy and practice is getting more pronounced. The parameters that influence this change are “big data” development in biology, high throughput technologies being massively used, large cohorts and biocollections being organized as “community resources” and, as the number of parameters analysed increase, the necessity of very large sample size on the one hand and the replication on different and independent population/family samples on the other hand. Is this reality reflected in policies of encouragement of data sharing, or at least in clear instructions for researchers?
We shall explore samples and data sharing policies according to two main angles: principles and implementation. Policies from the point of view of different stakeholders will be analysed: scientists, research participants, funders and research institutions. Then some of the tools to facilitate sharing will be analysed.
The discussion will be on the gap existing between the principles, the positions expressed and the reality, where sharing is either difficult or poorly happening. The analysis of the obstacles will address different facets outside the technical aspects such as lack of recognition of the work implied by making resources available and usable by others, lack of standards for citation of resources used, difficulty to get scientific/academic recognition other than through authorship, legal uncertainty, ethical aspects where individual protection may conflict with collective benefit. Recent evolutions and tools will be presented, such as the bioresource research impact framework.
Some elements of this evolution have or will have consequences on evaluation of research, on relations between research participants and researchers, and on education to science.