Anne Cambon-Thomsen, MD, Issues of open science in distributed infrastructures in life sciences in global context Anne Cambon-Thomsen, MD, Emeritus research director CNRS Inserm & University of Toulouse III, France, UMR 1027 Epidemiology and analyses in public health Co-Director Common Service ELSI (Ethical, legal, societal implications) of BBMRI-ERIC : Biobanking and biomolecular resources research infrastructure Europeanconsortium Responsible of the societal platform at Genotoul (Toulouse) EuroScience Open Forum, ESOF 2018 Champion International Consortium of research Infrastructures Cape Town, 3-5/10/2016. Plenary session 2. : Open science and open innovation : harnessing the potential of research infrastructures

Distributed infrastructures in life sciences (1) Example: BBMRI-ERIC dealing with human biological samples, biomolecular resources and personal data Specificity : the infrastructure relies on tissues, biological samples, data from patients or healthy persons kept in various sites /countries Organised national nodes coordinated within the ERIC The need to share and be open must be balanced with the protection of persons Open science dealing with heterogeneous legislations and ethics frameworks  Message 1. : The importance of charter of principles, access policies and codes of conduct for dealing with heterogeneous legislations and ethics contexts and the respect of persons whose samples and data are the basis of the infrastructure. Ex: the Common Service ELSI of BBMRI-ERIC 3/10/2016 ICRI - Cape Town, 3-5/10/2016

BBMRI-ERIC Common service ELSI Ethical, Legal, Societal Implications Anne Cambon-Thomsen, Coordinator, Co-director H2020 Projects supported by EU Commission : CORBEL & ADOPT 3/10/2016

Responsibilities – Missions 17/04/2018 Responsibilities – Missions Provide an ethics check for research proposals submitted to BBMRI-­‐ ERIC Advise on ELSI of biobanks and biobanking Provide solid monitoring of ELSI of relevance Follow up relevant evolution in legislations/regulations Organise tools and services to address ELSI Provide updated background information and practical guidance to biobankers (help-desk) Organise experience sharing Training and education on ELSI issues 3/10/2016 ICRI - Cape Town, 3-5/10/2016

Distributed infrastructures in life sciences (2) Message 2: The importance of recognition of the work to make such bioresources of high quality and able to be shared ; reward of the work leading to bioresource infrastructures in academic evaluation : incentives. Example: the international BRIF initiative, Bioresource research impact factor/framework. Such recognition pushes to make the effort of sharing resources through infrastructures. 3/10/2016 ICRI - Cape Town, 3-5/10/2016

The Bioresource Research Impact Factor initiative Framework Anne Cambon-Thomsen, leader Laurence Mabile, project manager http://listes.univ-tlse3.fr/wws/subscribe/brif.info laurence.mabile@univ-tlse3.fr : anne.cambon-thomsen@univ-tlse3.fr This funded the BRIF initiative. 3/10/2016 ICRI - Cape Town, 3-5/10/2016

The BRIF initiative HOW? www.gigasciencejournal.com/content/2/1/7 Work in progress, currently developing a framework for recognising the specific contribution of bioresources to Research (in scientific literature) Final objective: To create tools that will: promote a philosophy of sharing in the biomedical community facilitate the practice of sharing policies for data and samples HOW? By creating a set of adequate standardized tools: standards for citation / acknowledgement of bioresources in scientific articles in order to trace their use on the web/Marker papers BRIF indicator: a tool to establish frequency of BR use and evaluate their impact based on metrics and on the use of a unique digital resource identifier Human bioresources are key components of biomedical research. Yet, their role is underestimated and the work provided to setting up and maintaining a valid bioresource is not recognized. Cambon-Thomsen et al. Nat Genet 2003, 34:25–26 Idea: transforming a loss into an advantage. « The more it is shared, the more it contributes to science, the more it is recognised » Virtuous circle! Objective: increase sharing Purpose: recognition of the effort involved in establishing, maintaining and sharing resources Challenge: how to overcome the feeling of loss that may prevail 3/10/2016 ICRI - Cape Town, 3-5/10/2016

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Distributed infrastructures in life sciences (3)  Message 3: Education of young researchers to sharing resources and data and to use existing infrastructures internationally. Incentives, reminders : as part of funds applications Training to open science through infrastructures not only specifically in one kind of infrastructures but across them In an international environment 3/10/2016 ICRI - Cape Town, 3-5/10/2016

« Euroscience Open Forum » (ESOF 2018) - 9 -14 July 2018 Toulouse, European City of science 2018. An interdisciplinary forum : 5 axes, numerous parallel sessions More than 4000 participants expected, 400 journalists Largest interdisciplinary meeting on science , innovation and society in Europe For the 1st time in France! Call for sessions in January 2017 www.univ-toulouse.fr/ESOF2018 ESOF Science Science policy Careers Science to Business and Media Exhibition From actors in Research Development Innovation Science Edition Science in the city Sharing science: towards new horizons Science policy Research infrastructures Contact: office@toulouse2018.esof.eu

THANK YOU! 3/10/2016 ICRI - Cape Town, 3-5/10/2016