BIOETHICS - BIOethics Exploring Trajectories of Health Innovations Challenging Society

CERPOP, INSERM - University Toulouse III Paul Sabatier joint research unit


Emmanuelle RIAL-SEBBAG Manager @ 05 61 14 56 16 
 
BIOETHICS : "BIOethics Exploring Trajectories of Health Innovations Challenging Society", is rooted in analyses of genomic data and immunogenetics; it is an interdisciplinary team that interfaces biomedical sciences and human and social sciences. It consists of 1 CNRS researcher, 6 university or hospital and university academics (with 2 Inserm interface contracts), 1 Inserm emeritus researcher, 2 post-doctoral fellows, 10 PhD students, 3 temporary employed engineers, 1 temporary employed administrative assistant and 3 to 6 students. It interacts with the societal platform "Genetics and society" of genopole Toulouse Midi-Pyrénées.
Expected health effects

The expected outcomes are scenarios for implementing genetics in public health actions and a help in validation and decision regarding the use of genetic testing in multifactorial diseases, the consequences of sequencing for clinical applications and the
implications of innovative therapies for the health system. They rely on a prior multidisciplinary analysis incorporating especially ethical issues consideration. Tools for facilitating data sharing, biological sample exchanges and governance of biobanks are produced.

TEAM

BÉRANGER Jérôme • PhD Ethique du numérique santé, HDR, Economiste/gestionnaire santé ADELIA @
CAMBON-THOMSEN Anne • DR émérite CNRS, immunogénéticienne, éthique @
CHASSANG Gauthier • ITA, Juriste en droit de la santé @
CONSTANTIN Anastasia • ITA, Juriste en droit de la santé @
COUDERC Bettina • PU, Professeure de biotechnologies @
DELFIN Alejandra • ITA, Juriste en droit du numérique @
DELPLA Pierre-André • MCU-PH, Médecine légale et éthique de la santé @
DUGUET Anne-Marie • MCU-PH, émérite, médecine légale, droit et éthique de la santé @
DUGUET Julien • Doctorant @
FAYA ROBLES Alfonsina • PhD, post-doctorante en sociologie @
GENNET Eloïse • PhD, post-doctorante en droit @
JUILLARD-CONDAT Blandine • MCU-PH, Droit pharmaceutique et économie de la santé @
JULIA Sophie • PH, généticienne, chercheuse @
LE TIRANT Sandra • ITA, Juriste en droit de la santé @
MABILE Laurence • PhD, chargée de projet @
MARTINET-KOSINSKI Florian • Externe médecine
PICHEREAU Delphine • doctorante @
RIAL-SEBBAG Emmanuelle • DR2, juriste, PhD droit de la santé, HDR, responsable d’équipe @
SERAFIN Anthéa • Juriste Occitanie Data
SERRES Lucie • ITA, coordinatrice de la plateforme Ethique et Biosciences @
TABOULET Florence • PU, Droit pharmaceutique et économie de la santé @
THOMSEN Mogens • DR2, émérite, immunogénéticien @
WATKINS Christina • Assistante de gestion, Chaire Ethique, Science et Société
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Cooperations / Partnerships
Contrats européens FP7
GEN2PHEN Genotype to phenotype, 2008-12
TECHGENE Technological innovation of high throughput molecular diagnostics 2009-12
CAGEKID Cancer genomics of the kidney, 2010-13
BioSHaRE-EU Biobank Standardisation and Harmonisation for Research Excellence in EU, 2011-15
GEUVADIS Sharing capacity across Europe in high-throughput sequencing, 2010-13
MeDALL Mechanisms of the Development of ALLergy, 2010-14
ESGI  European Sequencing and Genotyping Infrastructure, ESFRI 2011-15
EuroTARGET TArgeted therapy in Renal cell cancer, 2011-16
PHGENII (DG Sanco): European Best Practice Guidelines for Genome-based Information and Technologies, 2009-12

Coord subvention IRESP : Tests génétiques en accès libre sur Internet
Participation ANR sur régulation cellules souches: THERACELS

Bilateral Collaborations : Canada, Japon, US, Tunisie, Pays-Bas

Réseaux internationaux : P3G, IIREB, EPHLN, ICGC
Ongoing projects

Projets européens FP7 / EU supported FP7 projects

MEDALL ; Mechanisms of the Development of ALLergy (Coordination France, Inserm, J Bousquet, 2010 - 2015; ELSI WP leader A. Cambon-Thomsen) - GA  261357  
BIOSHARE : Biobank Standardization and Harmonization for Research Excellence in the European Union (Coordination The Netherlands, University Medical Centre Groningen (UMCG), R. Stolk , 2010 - 2015; ELSI tasks participant and BRIF leader A. Cambon-Thomsen) - GA 261433 
ESGI : European Sequencing and Genotyping Infrastructure (Coordination Allemagne, Max-Planck-Institute for Molecular Genetics ;  S Sauer, 2011 - 2015; ELSI WP leader A. Cambon-Thomsen) - GA 262055. 
EUROTARGET : European collaborative project on Targeted therapy in renal cell cancer - genetic and biomarkers (Coordination The Netherlands, Radboud University Medical Center ; Bart Kiemeney, 2011 - 201 ; ELSI WP leader A. Cambon-Thomsen) - GA 259939 
BBMRI-LPC : Biobank and biomolecular research infrastructure, Large prospective cohort. (Coordination Finland and The Netherlands ; Markus Perola, and Leiden University Medical Center (LUMC), Gertjan van Ommen ; 2013-2017. ELSI tasks co-leader E. Rial-Sebbag) - GA313010; http://www.bbmri-lpc.org  
EUCELLEX : Cell based regenerative medicine : new challenges for EU legislation and governance. (Coordination France, Inserm, E. Rial-Sebbag, UMR 1027; 2013 - 2016 ) - GA 601806   
3 GBTEST : Introducing diagnostic applications of 3Gb-testing' in human genetics. (Coordination : The Netherlands, University Medical Centre Leiden, Egbert Bakker;  2013-2015; ELSI WP leader A. Cambon-Thomsen ;GA 602269
Action COST CHIP ME: Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives. Coordination Italie, Elia Stupka ;A. Cambon-Thomsen member management committee;participants:E. Rial-Sebbag, A Blasimme) 2013-2016; ISCH Cost action N° IS1303
ROTM- Rights on the move: Rainbow families in Europe projet co-financé par l'UE - 2013-2015 (Coordination: Italie, University of Trento;Alexander Schuster ;  Responsable UMR 1027:AM Duguet)
BRIF initiative: Bioresources research impact factor initiative  (Coordination : A. Cambon-Thomsen; Project manager : L. Mabile). 2010-2017.

Projets nationaux, régionaux 
IBISS : Incorporation biologique et inégalités sociales de santé (Coordination C. Delpierre, Inserm; Responsable d'axe SHS: E. Rial-Sebbag; financement ANR)
- Marqueurs génétiques et prise en charge de la Polyarthrite rhumatoïde R. Financé par AMPS (Association Midi-Pyrénées Santé; Responsable Adeline Ruyssen-Witrand)
Information de la parentèle en génétique: enjeux et mise en œuvre  en cas de maladie génétique à caractère familial. Financé par INCa (Institut national du cancer)  - Coordonné par Sandrine de Montgolfier, Paris; responsable UMR 1027: Emmanuelle Rial-Sebbag; 2013-2015.
Methods and tools

1. Analyses in law and bioethics : European law, health law
2. Epidemiological, legal, sociological surveys and investigations (qualitative and quantitative methodologies in sociology of science, sociology of health and health psychology; mixed methods)
3. Know-how on the biobanks of human biological material and data, including genetics
4. Knowledge on ethical and legal aspects of research in biology, genetics, clinical research and biotherapy
5. Genotyping and Analysis of polymorphic markers in the HLA region and other regions applied Immunogenetics including rheumatoid arthritis
6. Experience of interdisciplinarity between biological and health sciences and social sciences and humanities
7. Experience and detailed knowledge of European institutions and research and innovation framework programmes
8. Experience and thorough knowledge of research infrastructures in biology at French and European level, especially their ethical and societal aspects.

Publications

CAMBON-THOMSEN Anne BIOGRAPHIE / Publications
COUDERC Bettina Publications
DUGUET Anne-Marie Publications
JUILLARD-CONDAT B. Publications
JULIA Sophie Publications
RIAL-SEBBAG Emmanuelle. Publications
TABOULET Florence Publications