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1. Comment évaluer la FAIRness pour améliorer les processus de récompense du partage de la donnée? Une étape au travers d'une grille d'évaluation plus exhaustive

Author

David, Romain, Mabile, Laurence, Yahia, Mohamed, Cambon-Thomsen, Anne, Archambeau, Anne-Sophie, Bezuidenhout, Louise, Bekaert, Sofie, Bertier, Gabrielle, Bravo, Elena, Carpenter, Jane, Cohen-Nabeiro, Anna, Delavaud, Aurélie, De Rosa, Michele, Dollé, Laurent, Grattarola, Florencia, Murphy, Fiona, Pamerlon, Sophie, Specht, Alison, Tassé, Anne-Marie, Thomsen, Mogens, Zilioli, Martina, Institut méditerranéen de biodiversité et d'écologie marine et continentale (IMBE), Avignon Université (AU)-Aix Marseille Université (AMU)-Institut de recherche pour le développement [IRD] : UMR237-Centre National de la Recherche Scientifique (CNRS), Mathématiques, Informatique et STatistique pour l'Environnement et l'Agronomie (MISTEA), Institut National de la Recherche Agronomique (INRA)-Institut national d’études supérieures agronomiques de Montpellier (Montpellier SupAgro), Institut national d'enseignement supérieur pour l'agriculture, l'alimentation et l'environnement (Institut Agro)-Institut national d'enseignement supérieur pour l'agriculture, l'alimentation et l'environnement (Institut Agro), Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), Institut Charles Gerhardt Montpellier - Institut de Chimie Moléculaire et des Matériaux de Montpellier (ICGM ICMMM), Ecole Nationale Supérieure de Chimie de Montpellier (ENSCM)-Centre National de la Recherche Scientifique (CNRS)-Université de Montpellier (UM)-Université Montpellier 1 (UM1)-Université Montpellier 2 - Sciences et Techniques (UM2)-Institut de Chimie du CNRS (INC), Global Biodiversity Information Facility France (GBIF France), University of Oxford [Oxford], Universiteit Gent = Ghent University [Belgium] (UGENT), Department of Biology [Montréal], McGill University = Université McGill [Montréal, Canada], Istituto Superiore di Sanita [Rome], The University of Sydney, Fondation pour la recherche sur la Biodiversité (FRB), Biothèque Wallonia-Bruxelles, Bioinformatics and Sequence Analysis (BONSAI), Centre National de la Recherche Scientifique (CNRS)-Centre de Recherche en Informatique, Signal et Automatique de Lille - UMR 9189 (CRIStAL), Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Université de Lille, Sciences et Technologies-Inria Lille - Nord Europe, Institut National de Recherche en Informatique et en Automatique (Inria)-Institut National de Recherche en Informatique et en Automatique (Inria), Murphy Mitchell Consulting LTD, University of Lincoln, Institut de Recherche pour le Développement (IRD), Centre de Synthèse et d’Analyse sur la Biodiversité (CESAB), Public Population Project in Genomics and Society (P3G), Institut des Maladies Métaboliques et Cardiovasculaires (I2MC), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées, Istituto per il Rilevamento Elettromagnetico dell'Ambiente [Napoli] (IREA-CNR), Consiglio Nazionale delle Ricerche [Napoli] (CNR), RDA USA, Université de Toulouse (UT)-Université de Toulouse (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM), Institut Charles Gerhardt Montpellier - Institut de Chimie Moléculaire et des Matériaux de Montpellier (ICGM), Ecole Nationale Supérieure de Chimie de Montpellier (ENSCM)-Institut de Chimie du CNRS (INC)-Université de Montpellier (UM)-Centre National de la Recherche Scientifique (CNRS), Global Biodiversity Information Facility (GBIF), University of Oxford, Universiteit Gent = Ghent University (UGENT), Istituto Superiore di Sanità (ISS), Université de Lille, Sciences et Technologies-Inria Lille - Nord Europe, Institut National de Recherche en Informatique et en Automatique (Inria)-Institut National de Recherche en Informatique et en Automatique (Inria)-Centre de Recherche en Informatique, Signal et Automatique de Lille - UMR 9189 (CRIStAL), and Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Centre National de la Recherche Scientifique (CNRS)

Subjects
reusable, [SDV.EE.ECO]Life Sciences [q-bio]/Ecology, environment/Ecosystems, [INFO.INFO-DB]Computer Science [cs]/Databases [cs.DB], interoperable, Findable, accessible, interoperable, reusable, FAIRness literacy, Findable, FAIRness literacy, [INFO.INFO-ET]Computer Science [cs]/Emerging Technologies [cs.ET], [INFO.INFO-BI]Computer Science [cs]/Bioinformatics [q-bio.QM], accessible, [SDE.ES]Environmental Sciences/Environmental and Society
Abstract

The SHARC (SHAring Reward & Credit) interest group (IG) is an interdisciplinary group set up in the framework of RDA (Research Data Alliance) to improve crediting and rewarding mechanisms in the sharing process throughout the data life cycle. Notably, one of the objectives is to promote data sharing activities in research assessment schemes at national and European levels. To this aim,the RDA-SHARC IG is developing assessment grids using criteria to establish if data are compliant to the FAIR principles (findable /accessible / interoperable / reusable). The grid is aiming to be extensive, generic and trans-disciplinary. It is meant to be used by evaluators to assess the quality of the sharing practice of the researcher/scientist over a given period, taking into account the means & support available over that period. The grid displays a mind-mapped tree-graph structure based on previous works on FAIR data management (Reymonet et al., 2018; Wilkinson et al., 2016; Wilkinson et al., 2018; and E.U.Guidelines about FAIRness Data Management Plans). The criteria used are based on the work from FORCE 11*, and the Open Science Career Assessment Matrix designed by the EC Working group on Rewards under Open science. The criteria are organised in 5 clusters: ‘Motivations for sharing’; ‘Findable’, ‘Accessible’, ‘Interoperable’ and ‘Reusable’. For each criterion, 4 graduations are proposed (‘Never / Not Assessable’; ‘If mandatory’; ‘Sometimes’; ‘Always’). Only one value must be selected per criterion. Evaluation should be done by cluster; the final overall assessment will be based on the sum of the number of each ticked value / total number of criteria in each cluster; the ‘motivations for sharing’ should be appreciated qualitatively in the final interpretation. The final goals are to develop a graduated assessment of the researcher FAIRness literacy and help identifying needs to build FAIRness guidelines to improve the sharing capacity of researchers.

Published
2019

2. How to assess FAIRness to improve crediting and rewarding processes for data sharing? A step forward towards an extensive assessment grid

Author

David, Romain, Mabile, Laurence, Yahia, Mohamed, Cambon-Thomsen, Anne, Archambeau, Anne-Sophie, Bezuidenhout, Louise, Bekaert, Sofie, Bertier, Gabrielle, Bravo, Elena, Carpenter, Jane, Cohen-Nabeiro, Anna, Delavaud, Aurélie, Dollé, Laurent, de Rosa, Michele, Murphy, Fiona, Grattarola, Florencia, Pamerlon, Sophie, Specht, Alison, Tassé, Anne-Marie, Thomsen, Mogens, Zilioli, Martina, David, Romain, Institut méditerranéen de biodiversité et d'écologie marine et continentale (IMBE), Avignon Université (AU)-Aix Marseille Université (AMU)-Institut de recherche pour le développement [IRD] : UMR237-Centre National de la Recherche Scientifique (CNRS), Mathématiques, Informatique et STatistique pour l'Environnement et l'Agronomie (MISTEA), Institut National de la Recherche Agronomique (INRA)-Institut national d’études supérieures agronomiques de Montpellier (Montpellier SupAgro), Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), Institut Charles Gerhardt Montpellier - Institut de Chimie Moléculaire et des Matériaux de Montpellier (ICGM), Ecole Nationale Supérieure de Chimie de Montpellier (ENSCM)-Institut de Chimie du CNRS (INC)-Université de Montpellier (UM)-Centre National de la Recherche Scientifique (CNRS), Global Biodiversity Information Facility France (GBIF France), Global Biodiversity Information Facility (GBIF), University of Oxford, Universiteit Gent = Ghent University (UGENT), Department of Biology [Montréal], McGill University = Université McGill [Montréal, Canada], Istituto Superiore di Sanita [Rome], The University of Sydney, Fondation pour la recherche sur la Biodiversité (FRB), Biothèque Wallonia-Bruxelles, Bioinformatics and Sequence Analysis (BONSAI), Université de Lille, Sciences et Technologies-Inria Lille - Nord Europe, Institut National de Recherche en Informatique et en Automatique (Inria)-Institut National de Recherche en Informatique et en Automatique (Inria)-Centre de Recherche en Informatique, Signal et Automatique de Lille - UMR 9189 (CRIStAL), Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Centre National de la Recherche Scientifique (CNRS), Murphy Mitchell Consulting LTD, University of Lincoln, Institut de Recherche pour le Développement (IRD), Centre de Synthèse et d’Analyse sur la Biodiversité (CESAB), Public Population Project in Genomics and Society (P3G), Institut des Maladies Métaboliques et Cardiovasculaires (I2MC), Istituto per il Rilevamento Elettromagnetico dell'Ambiente [Napoli] (IREA-CNR), Consiglio Nazionale delle Ricerche [Napoli] (CNR), and RDA USA

Subjects
reusable, [INFO.INFO-DB]Computer Science [cs]/Databases [cs.DB], Findable, accessible, [SDE.ES]Environmental Sciences/Environmental and Society, [SDV.EE.ECO]Life Sciences [q-bio]/Ecology, environment/Ecosystems, interoperable, [INFO.INFO-ET] Computer Science [cs]/Emerging Technologies [cs.ET], [SDV.EE.ECO] Life Sciences [q-bio]/Ecology, environment/Ecosystems, [INFO.INFO-DB] Computer Science [cs]/Databases [cs.DB], FAIRness literacy, [INFO.INFO-ET]Computer Science [cs]/Emerging Technologies [cs.ET], [SDE.ES] Environmental Sciences/Environmental and Society, [INFO.INFO-BI]Computer Science [cs]/Bioinformatics [q-bio.QM], [INFO.INFO-BI] Computer Science [cs]/Bioinformatics [q-bio.QM]
Abstract

Le poster a été déposé dans Zenodo; International audience; The SHARC (SHAring Reward & Credit) interest group (IG) is an interdisciplinary group set up in the framework of RDA (Research Data Alliance) to improve crediting and rewarding mechanisms in the sharing process throughout the data life cycle. Notably, one of the objectives is to promote data sharing activities in research assessment schemes at national and European levels. To this aim, the RDA-SHARC IG is developing assessment grids using criteria to establish if data are compliant to the FAIR principles (findable /accessible / interoperable / reusable).The grid is aiming to be extensive, generic and trans-disciplinary. It is meant to be used by evaluators to assess the quality of the sharing practice of the researcher/scientist over a given period, taking into account the means & support available over that period. The grid displays a mind-mapped tree-graph structure based on previous works on FAIR data management (Reymonet et al., 2018; Wilkinson et al., 2016; Wilkinson et al., 2018; and E.U.Guidelines about FAIRness Data Management Plans). The criteria used are based on the work from FORCE 11*, and the Open Science Career Assessment Matrix designed by the EC Working group on Rewards under Open science. The criteria are organised in 5 clusters: ‘Motivations for sharing’; ‘Findable’, ‘Accessible’, ‘Interoperable’ and ‘Reusable’. For each criterion, 4 graduations are proposed (‘Never / Not Assessable’; ‘If mandatory’; ‘Sometimes’; ‘Always’). Only one value must be selected per criterion. Evaluation should be done by cluster; the final overall assessment will be based on the sum of the number of each ticked value / total number of criteria in each cluster; the ‘motivations for sharing’ should be appreciated qualitatively in the final interpretation. The final goals are to develop a graduated assessment of the researcher FAIRness literacy and help identifying needs to build FAIRness guidelines to improve the sharing capacity of researchers.

Published
2019

3. Comment opérationnaliser et évaluer la prise en compte du concept ‘FAIR' dans le partage des données: Vers une grille simplifiée d’évaluation du respect des critères FAIR

Author

David, Romain, Mabile, Laurence, Yahia, Mohamed, Cambon-Thomsen, Anne, Archambeau, Anne-Sophie, Bezuidenhout, Louise, Bekaert, Sofie, Bertier, Gabrielle, Bravo, Elena, Carpenter, Jane, Cohen-Nabeiro, Anna, Delavaud, Aurélie, de Rosa, Michele, Dollé, Laurent, Grattarola, Florencia, Murphy, Fiona, Pamerlon, Sophie, Specht, Alison, Tassé, Anne-Marie, Thomsen, Mogens, Zilioli, Martina, Institut méditerranéen de biodiversité et d'écologie marine et continentale (IMBE), Avignon Université (AU)-Aix Marseille Université (AMU)-Institut de recherche pour le développement [IRD] : UMR237-Centre National de la Recherche Scientifique (CNRS), Université Toulouse III - Paul Sabatier (UT3), Université de Toulouse (UT), Institut Charles Gerhardt Montpellier - Institut de Chimie Moléculaire et des Matériaux de Montpellier (ICGM), Ecole Nationale Supérieure de Chimie de Montpellier (ENSCM)-Institut de Chimie du CNRS (INC)-Université de Montpellier (UM)-Centre National de la Recherche Scientifique (CNRS), Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Université de Toulouse (UT)-Université de Toulouse (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM), Global Biodiversity Information Facility France (GBIF France), Global Biodiversity Information Facility (GBIF), University of Oxford, Universiteit Gent = Ghent University (UGENT), Department of Biology [Montréal], McGill University = Université McGill [Montréal, Canada], Istituto Superiore di Sanità (ISS), The University of Sydney, Fondation pour la recherche sur la Biodiversité (FRB), Bioinformatics and Sequence Analysis (BONSAI), Université de Lille, Sciences et Technologies-Inria Lille - Nord Europe, Institut National de Recherche en Informatique et en Automatique (Inria)-Institut National de Recherche en Informatique et en Automatique (Inria)-Centre de Recherche en Informatique, Signal et Automatique de Lille - UMR 9189 (CRIStAL), Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Centre National de la Recherche Scientifique (CNRS), Vrije Universiteit Brussel (VUB), University of Lincoln, Murphy Mitchell Consulting LTD, Institut de Recherche pour le Développement (IRD), Public Population Project in Genomics and Society (P3G), Institut des Maladies Métaboliques et Cardiovasculaires (I2MC), Istituto per il Rilevamento Elettromagnetico dell'Ambiente [Napoli] (IREA-CNR), Consiglio Nazionale delle Ricerche [Napoli] (CNR), SHARC Interest Group of Research Data Alliance, Université Fédérale Toulouse Midi-Pyrénées, Institut Charles Gerhardt Montpellier - Institut de Chimie Moléculaire et des Matériaux de Montpellier (ICGM ICMMM), Ecole Nationale Supérieure de Chimie de Montpellier (ENSCM)-Centre National de la Recherche Scientifique (CNRS)-Université de Montpellier (UM)-Université Montpellier 1 (UM1)-Université Montpellier 2 - Sciences et Techniques (UM2)-Institut de Chimie du CNRS (INC), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), University of Oxford [Oxford], Universiteit Gent = Ghent University [Belgium] (UGENT), Istituto Superiore di Sanita [Rome], Centre National de la Recherche Scientifique (CNRS)-Centre de Recherche en Informatique, Signal et Automatique de Lille - UMR 9189 (CRIStAL), Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Université de Lille, Sciences et Technologies-Inria Lille - Nord Europe, Institut National de Recherche en Informatique et en Automatique (Inria)-Institut National de Recherche en Informatique et en Automatique (Inria), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), and Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées

Subjects
evaluation, [SDV.EE.ECO]Life Sciences [q-bio]/Ecology, environment/Ecosystems, [INFO.INFO-DB]Computer Science [cs]/Databases [cs.DB], criteria, sharing data, FAIR principle, Reward and Credit, [INFO.INFO-ET]Computer Science [cs]/Emerging Technologies [cs.ET], [SDE.BE]Environmental Sciences/Biodiversity and Ecology, [INFO.INFO-BI]Computer Science [cs]/Bioinformatics [q-bio.QM], [SDE.ES]Environmental Sciences/Environmental and Society, Research Data Alliance
Abstract

National audience; Indexed identifier ? Identification Are each data/dataset identified by an indexed and independant identifier ? Persistent metadata / data link ? Metadata traceability Are the metadata linked to the dataset through a persistent identifier? Metadata & authority linked ? Metadata traceability Are the metadata of each dataset linked to a unique authority (responsible for the datasets at a given time)? Unique, global, persistent ID? Identification Are the data identifiers unique, global and persistent ? Are the data identifiers unique, global and persistent ? Datasets linked to authority ? Metadata traceability Are all datasets linked to an authority (legal entity) through a unique and persistent identifier over time (e.g. institution, association or established body)? In case of a legal reuse restriction (such as personal data, state and public security, national defense secret, confidentiality of external relations, information systems security, secrets in industrial and commercial matters) , is the restriction properly justified?; SHARC (SHAring Reward & Credit) est un groupe d’intérêt scientifique interdisciplinaire créé dans le cadre de RDA (Research Data Alliance) dans le but de faciliter le partage des données de recherche (et des ressources) par la valorisation de l’ensemble des activités pré-requises à ce partage, tout au long du cycle de vie des données. Dans ce cadre, un sous-groupe de travail SHARC élabore des grilles d’évaluation des chercheurs afin de mesurer leur niveau de prise en compte des principes FAIR dans la gestion de leurs données.La grille d’évaluation présentée dans ce poster est destinée à être complétée par tout scientifique produisant et / ou utilisant des données. Il s'agit d'un résumé d'une grille d'évaluation plus étendue conçue pour un partage optimal des données (non encore mise en œuvre pour le moment par la plupart des scientifiques).L'évaluation est basée sur les critères de conformité FAIR. Pour remplir cet objectif, la grille affiche le minimum de critères qui doivent absolument être appliqués par les chercheurs pour attester de leur pratique FAIR. Ces critères sont organisés en 5 groupes: «Motivations de partage»; "Trouvable", "Accessible", "Interopérable" et "Réutilisable". Pour chaque critère, 4 degrés d’évaluation sont proposés ("Jamais / Non évaluable"; "Si obligatoire"; "Parfois"; "Toujours"). Au moins un degré mais un seul doit être sélectionné par critère. L'évaluation doit être effectuée pour chaque catégorie F / A / I / R; L'évaluation finale est la somme de chaque degré coché rapportée au nombre total de critères dans chaque catégorie F / A / I / R. Des règles d'interprétation prenant en compte les «motivations du partage» sont proposées.

Published
2018

4. Operationalizing and evaluating the FAIRness concept for a good quality of data sharing in Research: the RDA-SHARC-IG (SHAring Rewards and Credit Interest Group)

Author

David, Romain, Mabile, Laurence, Yahia, Mohamed, Cambon-Thomsen, Anne, Archambeau, Anne-Sophie, Bezuidenhout, Louise, Bekaert, Sofie, Bertier, Gabrielle, Bravo, Elena, Carpenter, Jane, Cohen-Nabeiro, Anna, Delavaud, Aurélie, De Rosa, Michele, Dollé, Laurent, Grattarola, Florencia, Murphy, Fiona, Pamerlon, Sophie, Specht, Alison, Tassé, Anne-Marie, Thomsen, Mogens, Zilioli, Martina, Institut méditerranéen de biodiversité et d'écologie marine et continentale (IMBE), Avignon Université (AU)-Aix Marseille Université (AMU)-Institut de recherche pour le développement [IRD] : UMR237-Centre National de la Recherche Scientifique (CNRS), Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées, Institut Charles Gerhardt Montpellier - Institut de Chimie Moléculaire et des Matériaux de Montpellier (ICGM ICMMM), Ecole Nationale Supérieure de Chimie de Montpellier (ENSCM)-Centre National de la Recherche Scientifique (CNRS)-Université de Montpellier (UM)-Université Montpellier 1 (UM1)-Université Montpellier 2 - Sciences et Techniques (UM2)-Institut de Chimie du CNRS (INC), Department of Clinical Genetics/EMGO Institute for Health and Care research, Patrimoine naturel (PatriNat), Muséum national d'Histoire naturelle (MNHN)-Centre National de la Recherche Scientifique (CNRS)-Agence Française pour la Biodiversité (AFB), University of Oxford [Oxford], Universiteit Gent = Ghent University [Belgium] (UGENT), Department of Biology [Montréal], McGill University = Université McGill [Montréal, Canada], Istituto Superiore di Sanita [Rome], The University of Sydney, Fondation pour la recherche sur la Biodiversité (FRB), Bioinformatics and Sequence Analysis (BONSAI), Centre National de la Recherche Scientifique (CNRS)-Centre de Recherche en Informatique, Signal et Automatique de Lille - UMR 9189 (CRIStAL), Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Université de Lille, Sciences et Technologies-Inria Lille - Nord Europe, Institut National de Recherche en Informatique et en Automatique (Inria)-Institut National de Recherche en Informatique et en Automatique (Inria), Biothèque Wallonia-Bruxelles, University of Lincoln, Murphy Mitchell Consulting LTD, Institut de Recherche pour le Développement (IRD), Public Population Project in Genomics and Society (P3G), Institut des Maladies Métaboliques et Cardiovasculaires (I2MC), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées, Institut National de la Santé et de la Recherche Médicale (INSERM), CNR-IREA Milan, icube strasbourg / bureau de MaDICS, Université de Toulouse (UT), Institut Charles Gerhardt Montpellier - Institut de Chimie Moléculaire et des Matériaux de Montpellier (ICGM), Ecole Nationale Supérieure de Chimie de Montpellier (ENSCM)-Institut de Chimie du CNRS (INC)-Université de Montpellier (UM)-Centre National de la Recherche Scientifique (CNRS), University of Oxford, Universiteit Gent = Ghent University (UGENT), Istituto Superiore di Sanità (ISS), Université de Lille, Sciences et Technologies-Inria Lille - Nord Europe, Institut National de Recherche en Informatique et en Automatique (Inria)-Institut National de Recherche en Informatique et en Automatique (Inria)-Centre de Recherche en Informatique, Signal et Automatique de Lille - UMR 9189 (CRIStAL), Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Centrale Lille-Université de Lille-Centre National de la Recherche Scientifique (CNRS)-Centre National de la Recherche Scientifique (CNRS), Université de Toulouse (UT)-Université de Toulouse (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), and David, Romain

Subjects
MaDICS, [INFO.INFO-DB]Computer Science [cs]/Databases [cs.DB], accessible, [SDE.ES]Environmental Sciences/Environmental and Society, rewarding, credits, [SDV.EE.ECO]Life Sciences [q-bio]/Ecology, environment/Ecosystems, data, [INFO.INFO-ET] Computer Science [cs]/Emerging Technologies [cs.ET], [SDV.EE.ECO] Life Sciences [q-bio]/Ecology, environment/Ecosystems, Data sharing, Research Data Alliance, Interoperable formats, [INFO.INFO-DB] Computer Science [cs]/Databases [cs.DB], [INFO.INFO-ET]Computer Science [cs]/Emerging Technologies [cs.ET], [SDE.ES] Environmental Sciences/Environmental and Society, [INFO.INFO-BI]Computer Science [cs]/Bioinformatics [q-bio.QM], 10. No inequality, [INFO.INFO-BI] Computer Science [cs]/Bioinformatics [q-bio.QM]
Abstract

The RDA-SHARC (SHAring Reward & Credit) interest group is an interdisciplinary volunteer member-based group set up as part of RDA (Research Data Alliance) to unpack and improve crediting and rewarding mechanisms in the sharing process throughout the data life cycle. Background and objectives of this group are reported here. Notably, one of the objectives is to promote the inclusion of data sharing activities in the research (& researchers) assessment scheme at national and European levels. To this aim, the RDA-SHARC-IG is developing two assessment grids using criteria to establish if data are compliant to the F.A.I.R principles (findable /accessible / interoperable / reusable) based on previous works on FAIR data management (Reymonet et al., 2018; Wilkinson et al., 2018; and E.U.Guidelines*): 1/ The self-assessment grid to be used by a scientist as a ‘checklist’ to identify her/his own activities and to pinpoint the hurdles that hinder efficient sharing and reuse of his/her data by all potential users. 2/ The two-level grid (quick/extensive) to be used by the evaluator to assess the quality of the researcher/scientist sharing practice, over a given period, taking into account the means & support available over that period. Assessment criteria are classified according their importance with regards to FAIRness (essential / recommended / desirable) meanwhile good practices are recommended for critical steps. To implement a highly fair assessment of the sharing process, appropriate criteria must be selected in order to design optimal generic assessment grids. This process requires participation, time and input from volunteer scientists data producers/users from various fields.

Published
2018

5. European recommendations integrating genetic testing into multidisciplinary management of sudden cardiac death.

Author

Fellmann F, van El CG, Charron P, Michaud K, Howard HC, Boers SN, Clarke AJ, Duguet AM, Forzano F, Kauferstein S, Kayserili H, Lucassen A, Mendes Á, Patch C, Radojkovic D, Rial-Sebbag E, Sheppard MN, Tassé AM, Temel SG, Sajantila A, Basso C, Wilde AAM, and Cornel MC

Subjects
Death, Sudden, Cardiac epidemiology, Death, Sudden, Cardiac prevention & control, European Union organization & administration, Heart Diseases mortality, Heart Diseases pathology, Humans, Myocardium pathology, Autopsy, Death, Sudden, Cardiac pathology, Genetic Testing standards, Heart Diseases genetics
Abstract

Sudden cardiac death (SCD) accounts for 10-20% of total mortality, i.e., one in five individuals will eventually die suddenly. Given the substantial genetic component of SCD in younger cases, postmortem genetic testing may be particularly useful in elucidating etiological factors in the cause of death in this subset. The identification of genes responsible for inherited cardiac diseases have led to the organization of cardiogenetic consultations in many countries worldwide. Expert recommendations are available, emphasizing the importance of genetic testing and appropriate information provision of affected individuals, as well as their relatives. However, the context of postmortem genetic testing raises some particular ethical, legal, and practical (including economic or financial) challenges. The Public and Professional Policy Committee of the European Society of Human Genetics (ESHG), together with international experts, developed recommendations on management of SCD after a workshop sponsored by the Brocher Foundation and ESHG in November 2016. These recommendations have been endorsed by the ESHG Board, the European Council of Legal Medicine, the European Society of Cardiology working group on myocardial and pericardial diseases, the ERN GUARD-HEART, and the Association for European Cardiovascular Pathology. They emphasize the importance of increasing the proportion of both medical and medicolegal autopsies and educating the professionals. Multidisciplinary collaboration is of utmost importance. Public funding should be allocated to reach these goals and allow public health evaluation.

Published
2019
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6. Ethical, Legal, and Regulatory Issues for the Implementation of Omics-Based Risk Prediction of Women's Cancer: Points to Consider.

Author

Lévesque E, Kirby E, Bolt I, Knoppers BM, de Beaufort I, Pashayan N, and Widschwendter M

Subjects
Bioethical Issues, Breast Neoplasms genetics, Communication, Decision Making, Early Detection of Cancer methods, Europe, Female, Genetic Testing legislation & jurisprudence, Humans, Mass Screening ethics, Mass Screening legislation & jurisprudence, Risk Assessment methods, Uterine Cervical Neoplasms genetics, Breast Neoplasms diagnosis, Early Detection of Cancer ethics, Genetic Testing ethics, Uterine Cervical Neoplasms diagnosis
Abstract

Background and Objective: Advances in omics open new opportunities for cancer risk prediction and risk-based screening interventions. However, implementation of risk prediction in clinical practice may impact the ethical, legal, and regulatory aspects of current cancer screening programs. In order to support decision-making, we analyzed the ethical, legal, and regulatory issues and developed a set of Points to Consider to support management of these issues., Methods: We analyzed the legal and policy frameworks applicable to breast and cervical cancer screening programs in 7 European countries. We identified the most relevant issues to be considered, and we developed considerations for their management, based on the literature, the legal and policy frameworks, and our experience with similar issues., Results: The considerations focus on five topics: (A) health services planning, (B) information and invitation, (C) consent and data/sample collection, (D) risk calculation and communication of results, and (E) storage of data and residual samples., Conclusion: Current frameworks might not be adequate to implement a risk prediction approach using omics factors due to the different characteristics of such approaches., (The Author(s). Published by S. Karger AG, Basel.)

Published
2018
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7. Ambient air pollution, traffic noise and adult asthma prevalence: a BioSHaRE approach.

Author

Cai Y, Zijlema WL, Doiron D, Blangiardo M, Burton PR, Fortier I, Gaye A, Gulliver J, de Hoogh K, Hveem K, Mbatchou S, Morley DW, Stolk RP, Elliott P, Hansell AL, and Hodgson S

Subjects
Adult, Aged, Aged, 80 and over, Air Pollutants analysis, Cohort Studies, Cross-Sectional Studies, Environmental Exposure, Environmental Monitoring, European Union, Female, Humans, Logistic Models, Male, Middle Aged, Multivariate Analysis, Nitrogen Dioxide analysis, Young Adult, Air Pollution adverse effects, Asthma epidemiology, Noise adverse effects, Particulate Matter analysis, Transportation
Abstract

We investigated the effects of both ambient air pollution and traffic noise on adult asthma prevalence, using harmonised data from three European cohort studies established in 2006-2013 (HUNT3, Lifelines and UK Biobank).Residential exposures to ambient air pollution (particulate matter with aerodynamic diameter ≤10 µm (PM 10 ) and nitrogen dioxide (NO 2 )) were estimated by a pan-European Land Use Regression model for 2007. Traffic noise for 2009 was modelled at home addresses by adapting a standardised noise assessment framework (CNOSSOS-EU). A cross-sectional analysis of 646 731 participants aged ≥20 years was undertaken using DataSHIELD to pool data for individual-level analysis via a "compute to the data" approach. Multivariate logistic regression models were fitted to assess the effects of each exposure on lifetime and current asthma prevalence.PM 10 or NO 2 higher by 10 µg·m -3 was associated with 12.8% (95% CI 9.5-16.3%) and 1.9% (95% CI 1.1-2.8%) higher lifetime asthma prevalence, respectively, independent of confounders. Effects were larger in those aged ≥50 years, ever-smokers and less educated. Noise exposure was not significantly associated with asthma prevalence.This study suggests that long-term ambient PM 10 exposure is associated with asthma prevalence in western European adults. Traffic noise is not associated with asthma prevalence, but its potential to impact on asthma exacerbations needs further investigation., (Copyright ©ERS 2017.)

Published
2017
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8. Registered access: a 'Triple-A' approach.

Author

Dyke SO, Kirby E, Shabani M, Thorogood A, Kato K, and Knoppers BM

Subjects
Information Dissemination, Security Measures organization & administration, Access to Information, Databases, Genetic, Security Measures standards
Abstract

We propose a standard model for a novel data access tier - registered access - to facilitate access to data that cannot be published in open access archives owing to ethical and legal risk. Based on an analysis of applicable research ethics and other legal and administrative frameworks, we discuss the general characteristics of this Registered Access Model, which would comprise a three-stage approval process: Authentication, Attestation and Authorization. We are piloting registered access with the Demonstration Projects of the Global Alliance for Genomics and Health for which it may provide a suitable mechanism for access to certain data types and to different types of data users., Competing Interests: As part of its International Policy interoperability and data Access Clearinghouse (IPAC), the Public Population Project in Genomics and Society (P3G) offers DACO services to the research community.

Published
2016
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10. Access Governance for Biobanks: The Case of the BioSHaRE-EU Cohorts.

Author

Kaye J, Briceño Moraia L, Mitchell C, Bell J, Bovenberg JA, Tassé AM, and Knoppers BM

Subjects
Cooperative Behavior, Databases, Factual, European Union, Finland, Germany, Humans, Interprofessional Relations, Netherlands, Norway, United Kingdom, Biological Specimen Banks legislation & jurisprudence, Biological Specimen Banks organization & administration, Biomedical Research legislation & jurisprudence, Information Dissemination legislation & jurisprudence
Abstract

Currently, researchers have to apply separately to individual biobanks if they want to carry out studies that use samples and data from multiple biobanks. This article analyzes the access governance arrangements of the original five biobank members of the Biobank Standardisation and Harmonisation for Research Excellence in the European Union (BioSHaRE-EU) project in Finland, Germany, the Netherlands, Norway, and the United Kingdom to identify similarities and differences in policies and procedures, and consider the potential for internal policy "harmonization." Our analysis found differences in the range of researchers and organizations eligible to access biobanks; application processes; requirements for Research Ethics Committee approval; and terms of Material Transfer Agreements relating to ownership and commercialization. However, the main elements of access are the same across biobanks; access will be granted to bona fide researchers conducting research in the public interest, and all biobanks will consider the scientific merit of the proposed use and it's compatibility with the biobank's objectives. These findings suggest potential areas for harmonization across biobanks. This could be achieved through a single centralized application to a number of biobanks or a system of mutual recognition that places a presumption in favor of access to one biobank if already approved by another member of the same consortium. Biobanking and Biomolecular Resources Research Infrastructure-European Research Infrastructure Consortia (BBMRI-ERIC), a European consortium of biobanks and bioresources with its own ethical, legal, and social implications (ELSI) common service, could provide a platform by developing guidelines for harmonized internal processes.

Published
2016
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11. Population studies: return of research results and incidental findings Policy Statement.

Author

Knoppers BM, Deschênes M, Zawati MH, and Tassé AM

Subjects
Humans, International Cooperation, Biomedical Research, Human Genome Project, Incidental Findings, Policy
Abstract

The Public Population Project in Genomics and Society (P³G) is a not-for profit international consortium with members from more than 40 countries. Its objective is to lead, catalyze, and co-ordinate international efforts and expertise in order to optimize the use of population studies, biobanks, research databases, and other similar health and social science research infrastructures. The year 2011-2012 witnessed a plethora of special issues of journals on the return of results but few discussed the particular situation of population studies that serve as resources for future unspecified research. P³G considers it important to propose a policy that distinguishes between the contexts of population research and disease (clinical) research involving patients and then delineates actual and future obligations. The objectives of this Policy Statement are to: (1) delineate the particular characteristics of population studies, (2) distinguish the circumstances surrounding access by researchers to such studies, and (3) develop a framework for the return of research results and incidental findings.

Published
2013
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