1. 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

2. 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

3. 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

4. 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

5. 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

6. The Bioresource Research Impact Factor initiative
Framework
Anne Cambon-Thomsen, leader
Laurence Mabile, project manager :
This funded the BRIF initiative.
3/10/2016
ICRI - Cape Town, 3-5/10/2016

7. The BRIF initiative HOW?
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

8. 3/10/2016
ICRI - Cape Town, 3-5/10/2016

9. 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

11. « 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
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:

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