Emmanuelle RIAL-SEBBAG • Publications CERPOP

BIOETHICS - BIOethics Exploring Trajectories of Health Innovations Challenging Society

Equipe constitutive de l'UMR1027, unité mixte INSERM - Université Toulouse III Paul Sabatier
Emmanuelle RIAL-SEBBAG •  chercheure
 

2024

1. Cogan G, Troadec MB, Devillard F, Saint-Frison MH, Geneviève D, Vialard F, Rial-Sebbag E, Héron D, Attie-Bitach T, Benachi A, Saugier-Veber P. Use of Prenatal Exome Sequencing: Opinion Statement of the French Federation of Human Genetics Working Group. Prenat Diagn. 2024 Nov 12. doi: 10.1002/pd.6692. Epub ahead of print.
2. Constantin A, Faya Robles A, Rial-Sebbag E. Chapitre 5. From individuals to social: The needs for a global ethics overview in pharmacogenomics. J Int Bioethique Ethique Sci. 2024;34(3):85-102. doi: 10.3917/jibes.343.0085.
3. Droin-Mollard M, de Montgolfier S, Gimenez-Roqueplo AP, Flahault C, Petit A, Bourdeaut F, Julia S, Rial-Sebbag E, Coupier I, Simaga F, Brugières L, Guerrini-Rousseau L, Claret B, Cavé H, Strullu M, Hervouet L, Lahlou-Laforêt K. Psychological and ethical issues raised by genomic in paediatric care pathway, a qualitative analysis with parents and childhood cancer patients. Eur J Hum Genet. 2024 Jul 13. doi: 10.1038/s41431-024-01653-4. Epub ahead of print.
4. Rial-Sebbag E, Cambon-Thomsen A. Chapter 5. Bioethics “Laws”: Paradox or Way of the Future?". in : Promoting the “Human” in Law, Policy, and Medicine. Ed.Leiden, The Netherlands: Brill | Nijhoff. 2024:113-30. doi: doi.org/10.1163/9789004688544_015
5. Rothstein MA, Zimmerer KC, Andanda P, Arawi T, Arzuaga F, Chen H, de Vries M, Dove ES, Ghaly M, Hatanaka R, Hendriks AC, Hernández MC, Ho CWL, Joly Y, Krekora-Zając D, Lee WB, Mattsson T, Molnár-Gábor F, Namalwa K, Nicolás P, Nielsen J, Nnamuchi O, Otlowski M, Palmour N, Rial-Sebbag E, Siegal G, Wathuta JM, Zawati MH, Knoppers BM. International scope of biomedical research ethics review. Science. 2024 Jul 12;385(6705):145-147. doi: 10.1126/science.adp6277.

2023

1. Bernier A, Molnár-Gábor F, Knoppers BM, Borry P, Cesar PMDG, Devriendt T, Goisauf M, Murtagh M, Jiménez PN, Recuero M, Rial-Sebbag E, Shabani M, Wilson RC, Zaccagnini D, Maxwell L. Reconciling the biomedical data commons and the GDPR: three lessons from the EUCAN ELSI collaboratory. Eur J Hum Genet. 2023 Jun 15:1–8. doi: 10.1038/s41431-023-01403-y. Epub ahead of print.
2. Forzano F, Antonova O, Clarke A, de Wert G, Hentze S, Jamshidi Y, Moreau Y, Perola M, Prokopenko I, Read A, Reymond A, Stefansdottir V, van El C, Genuardi M; Executive Committee of the European Society of Human Genetics; Public and Professional Policy Committee of the European Society of Human Genetics (Rial-Sebbag E collaborator). Reply to Letter by Tellier et al., 'Scientific refutation of ESHG statement on embryo selection'. Eur J Hum Genet. 2023 Mar;31(3):279-281. doi: 10.1038/s41431-022-01241-4. Epub 2022 Dec 1. Erratum in: Eur J Hum Genet. 2022.
3. Forzano F, Antonova O, Clarke A, de Wert G, Hentze S, Jamshidi Y, Moreau Y, Perola M, Prokopenko I, Read A, Reymond A, Stefansdottir V, van El C, Genuardi M; Executive Committee of the European Society of Human Genetics; Public and Professional Policy Committee of the European Society of Human Genetics (Rial-Sebbag E collaborator). Correction to: Reply to Letter by Tellier et al., 'Scientific refutation of ESHG statement on embryo selection'. Eur J Hum Genet. 2023 Mar;31(3):368. doi: 10.1038/s41431-022-01263-y. Erratum for: Eur J Hum Genet. 2023 Mar;31(3):279-281.
4. Rothstein MA, Patrinos D, Brothers KB, Clayton EW, Joly Y, Zawati MH, Andanda P, Arawi T, Castañeda M, Chalmers D, Chen H, Ghaly M, Hatanaka R, Hendriks AC, Ho CWL, Kaye J, Krekora-Zając D, Lee WB, Mattsson T, Nicolás P, Nnamuchi O, Rial-Sebbag E, Siegal G, Wathuta JM, Knoppers BM. Concordance of International Regulation of Pediatric Health Research. J Pediatr. 2023 May 26;260:113524. doi: 10.1016/j.jpeds.2023.113524. Epub ahead of print.
5. Swen JJ, van der Wouden CH, Manson LE, Abdullah-Koolmees H, Blagec K, Blagus T, Böhringer S, Cambon-Thomsen A, Cecchin E, Cheung KC, Deneer VH, Dupui M, Ingelman-Sundberg M, Jonsson S, Joefield-Roka C, Just KS, Karlsson MO, Konta L, Koopmann R, Kriek M, Lehr T, Mitropoulou C, Rial-Sebbag E, Rollinson V, Roncato R, Samwald M, Schaeffeler E, Skokou M, Schwab M, Steinberger D, Stingl JC, Tremmel R, Turner RM, van Rhenen MH, Dávila Fajardo CL, Dolžan V, Patrinos GP, Pirmohamed M, Sunder-Plassmann G, Toffoli G, Guchelaar HJ; Ubiquitous Pharmacogenomics Consortium. A 12-gene pharmacogenetic panel to prevent adverse drug reactions: an open-label, multicentre, controlled, cluster-randomised crossover implementation study. Lancet. 2023 Feb 4;401(10374):347-356. doi: 10.1016/S0140-6736(22)01841-4.

Couderc B, Faya Robles A, Caunes-Hilary N, Galiby L, Rial Sebbag E.La collégialité dans la mise en place d’une sédation profonde et continue dans un centre de cancérologie en France. Canadian Journal of Bioethics. vol.6.n°2. 2023. pp.90-106. doi : https://doi.org/10.7202/1101131

2022

1. Bernabei R, Landi F, Calvani R, Cesari M, Del Signore S, Anker SD, Bejuit R, Bordes P, Cherubini A, Cruz-Jentoft AJ, Di Bari M, Friede T, Gorostiaga Ayestarán C, Goyeau H, Jónsson PV, Kashiwa M, Lattanzio F, Maggio M, Mariotti L, Miller RR, Rodriguez-Mañas L, Roller-Wirnsberger R, Rýznarová I, Scholpp J, Schols AMWJ, Sieber CC, Sinclair AJ, Skalska A, Strandberg T, Tchalla A, Topinková E, Tosato M, Vellas B, von Haehling S, Pahor M, Roubenoff R, Marzetti E; SPRINTT consortium (Rial-Sebbag E collaborator). Multicomponent intervention to prevent mobility disability in frail older adults: randomised controlled trial (SPRINTT project). BMJ. 2022 May 11;377:e068788. doi: 10.1136/bmj-2021-068788.
2. Forzano F, Antonova O, Clarke A, de Wert G, Hentze S, Jamshidi Y, Moreau Y, Perola M, Prokopenko I, Read A, Reymond A, Stefansdottir V, van El C, Genuardi M; Executive Committee of the European Society of Human Genetics; Public and Professional Policy Committee of the European Society of Human Genetics (Rial-Sebbag E collaborator). The use of polygenic risk scores in pre-implantation genetic testing: an unproven, unethical practice. Eur J Hum Genet. 2022 May;30(5):493-495. doi: 10.1038/s41431-021-01000-x. Erratum in: Eur J Hum Genet. 2022.
3. Forzano F, Antonova O, Clarke A, de Wert G, Hentze S, Jamshidi Y, Moreau Y, Perola M, Prokopenko I, Read A, Reymond A, Stefansdottir V, van El C, Genuardi M; Executive Committee of the European Society of Human Genetics; Public and Professional Policy Committee of the European Society of Human Genetics (Rial-Sebbag E collaborator). Correction: The use of polygenic risk scores in pre-implantation genetic testing: an unproven, unethical practice. Eur J Hum Genet. 2022 May;30(5):628. doi: 10.1038/s41431-022-01067-0. Erratum for: Eur J Hum Genet. 2022 May;30(5):493-495.
4. Le Tirant S, Rial-Sebbag E. Le renforcement de l'accès l'information génétique : généalogie de la nouvelle loi de bioéthique. Journal de médecine légale. Série E : Droit, Santé et Société. 2022. n°1. vol.9. pp. 29-38
5. Mahalatchimy A, Rial-Sebbag E. Deciphering the Fragmentation of the Human Genome Editing Regulatory Landscape. Front. Polit. Sci. 2022. 3:793134. doi: 10.3389/fpos.2021.793134
6. Rial-Sebbag E. La valeur des données et informations génétiques pour la santé : une mosaïque juridique. Revue Médecine et Philosophie. n°7. 2022. pp.60-70  doi : 10.51328/220507

2022
PUBLICATION DIDACTIQUE 2021

1. de Wert G, Dondorp W, Clarke A, Dequeker EMC, Cordier C, Deans Z, van El CG, Fellmann F, Hastings R, Hentze S, Howard H, Macek M, Mendes A, Patch C, Rial-Sebbag E, Stefansdottir V, Cornel MC, Forzano F; European Society of Human Genetics. Opportunistic genomic screening. Recommendations of the European Society of Human Genetics. Eur J Hum Genet. 2021 Mar;29(3):365-377. doi: 10.1038/s41431-020-00758-w.
2. de Montgolfier S, Hervouet L, Le Tirant S, Rial-Sebbag E. Intégrer l’avis de l’enfant dans les décisions de soin : le cas du consentement aux investigations génétiques en oncopédiatrie. Anthropologie & Santé. 2021. doi: https://doi.org/10.4000/anthropologiesante.9269.
3. Jyväkorpi SK, Ramel A, Strandberg TE, Piotrowicz K, Błaszczyk-Bębenek E, Urtamo A, Rempe HM, Geirsdóttir Ó, Vágnerová T, Billot M, Larreur A, Savera G, Soriano G, Picauron C, Tagliaferri S, Sanchez-Puelles C, Cadenas VS, Perl A, Tirrel L, Öhman H, Weling-Scheepers C, Ambrosi S, Costantini A, Pavelková K, Klimkova M, Freiberger E, Jonsson PV, Marzetti E, Pitkälä KH, Landi F, Calvani R; SPRINTT consortium (Rial-Sebbag E collaborator). The sarcopenia and physical frailty in older people: multi-component treatment strategies (SPRINTT) project: description and feasibility of a nutrition intervention in community-dwelling older Europeans. Eur Geriatr Med. 2021. 12(2):303-312. doi: 10.1007/s41999-020-00438-4.
4. Mandelker D, Donoghue M, Talukdar S, Bandlamudi C, Srinivasan P, Vivek M, Jezdic S, Hanson H, Snape K, Kulkarni A, Hawkes L, Douillard JY, Wallace SE, Rial-Sebbag E, Meric-Bersntam F, George A, Chubb D, Loveday C, Ladanyi M, Berger MF, Taylor BS, Turnbull C. Erratum to 'Germline-focussed analysis of tumour-only sequencing: recommendations from the ESMO Precision Medicine Working Group': [Annals of Oncology 30 (2019) 1221-1231]. Ann Oncol. 2021 Aug;32(8):1069-1071. doi: 10.1016/j.annonc.2021.05.798. Epub 2021 Jun 2. Erratum for: Ann Oncol. 2019 Aug 1;30(8):1221-1231.
5. Mom T, Gardini B, Rial-Sebbag E, Fraysse B; French Association of Global Outreach in Otolaryngology Head, Neck Surgery (AEGOF). The humanitarian and outreach ethics charter in ENT. Ethics at the heart of missions. Eur Ann Otorhinolaryngol Head Neck Dis. 2021 Jan;138(1):41-44. doi: 10.1016/j.anorl.2020.08.002.
6. Pichereau D, Rial-Sebbag E, Limiter le marché des thérapies cellulaires non éprouvées : réalité ou utopie ? Revue générale de droit médical. n°78. 2021. pp. 195-210. Présentation
7. Rial-Sebbag E. Information génétique et lois de bioéthique. AJDA. Dossier les nouvelles frontières de la Loi de bioéthique (Coord. Xavier Bioy). n°32/2021. pp.1844-1856.
8. Rial-Sebbag E. Genetic Information: the individual, the family and the Humankind. BIOLAW journal. No. 1S (2021): Special Issue. 1/2021. pp.13-16.

2021
CHAPITRES D'OUVRAGES
• Chassang G, Hisbergues M, Rial-Sebbag E. Research Biobanking, Personal Data Protection and Implementation of the GDPR in France. In : GDPR and Biobanking. Springer, Cham, 2021. pp. 257-276.
• Rial-Sebbag E. 1/Réguler et promouvoir les données de santé et les données génétiques en Europe, 2/Les droits du patient mineur. in Regards croisés sur l’éthique en oncogénétique. Fonds de soutien Avenir/MASFIP. 2021.
https://www.oncogenetique.fr/wp-content/uploads/2021/10/ouvrage-ethique-oncogenetique-fonds-avenir-masfip-liens-interactifs.pdf

2020

1. Couderc B, Chapuis F, Rial-Sebbag E. Ideas received about genetics: Example of information processing by master students Ethics Med Public Health. 2020. 12:Article 100438. doi: 10.1016/j.jemep.2019.100438.
2. Couderc B, Duguet AM, Cambon-Thomsen A, Rial-Sebbag E. Essai clinique et traitement : quelle éthique en cas d'urgence sanitaire ? Exploreur. 2020. https://exploreur.univ-toulouse.fr/essai-clinique-et-traitement-quelle-ethique-en-cas-durgence-sanitaire
3. Delfin Rossaro A, Rial-Sebbag E. L’émergence des outils numériques dans le contexte d’état d’urgence sanitaire. Enjeux et conditions d’application face au droit au respect de la vie privée. Droit, Santé et Société. n°1. 2020. p.98-104. Résumé
4. Fellmann F, Rial-Sebbag E, Patch C, Hentze S, Stefandottir V, Mendes Á, van El CG, Cornel MC, Forzano F; Public and Professional Committee (PPPC) of the European Society of Human Genetics (ESHG). ESHG PPPC Comments on postmortem use of genetic data for research purposes. Eur J Hum Genet. 2020 Feb;28(2):144-146. doi: 10.1038/s41431-019-0525-z.
5. Gennet E, Couderc B, Rial-Sebbag E. Covid-19 : le développement de médicaments en Europe. Exploreur. 2020. https://exploreur.univ-toulouse.fr/covid-19-le-developpement-de-medicaments-en-europe
6. Mom T, Gardini B, Rial-Sebbag E, Fraysse B; French Association of Global Outreach in Otolaryngology Head, Neck Surgery (AEGOF). The humanitarian and outreach ethics charter in ENT. Ethics at the heart of missions. Eur Ann Otorhinolaryngol Head Neck Dis. 2020 Aug 15:S1879-7296(20)30183-6. doi: 10.1016/j.anorl.2020.08.002.
7. van der Wouden CH, Böhringer S, Cecchin E, Cheung KC, Dávila-Fajardo CL, Deneer VHM, Dolžan V, Ingelman-Sundberg M, Jönsson S, Karlsson MO, Kriek M, Mitropoulou C, Patrinos GP, Pirmohamed M, Rial-Sebbag E, Samwald M, Schwab M, Steinberger D, Stingl J, Sunder-Plassmann G, Toffoli G, Turner RM, van Rhenen MH, van Zwet E, Swen JJ, Guchelaar HJ; Ubiquitous Pharmacogenomics Consortium. Generating evidence for precision medicine: considerations made by the Ubiquitous Pharmacogenomics Consortium when designing and operationalizing the PREPARE study. Pharmacogenet Genomics. 2020 Aug;30(6):131-144. doi: 10.1097/FPC.0000000000000405.

1. Couderc B, Chapuis F, Rial-Sebbag E. Ideas received about genetics: Example of information processing by master students Ethics Med Public Health. 2020. 12:Article 100438. doi: 10.1016/j.jemep.2019.100438.
2. Couderc B, Duguet AM, Cambon-Thomsen A, Rial-Sebbag E. Essai clinique et traitement : quelle éthique en cas d'urgence sanitaire ? Exploreur. 2020. https://exploreur.univ-toulouse.fr/essai-clinique-et-traitement-quelle-ethique-en-cas-durgence-sanitaire
3. Pasquier L, Isidor B, Rial-Sebbag E, Odent S, Minguet G, Moutel G. Population genetic screening: current issues in a European country. Eur J Hum Genet. 2019 Sep;27(9):1321-1323. doi: 10.1038/s41431-019-0425-2.
4. Carrieri D, Howard HC, Benjamin C, Clarke AJ, Dheensa S, Doheny S, Hawkins N, Halbersma-Konings TF, Jackson L, Kayserili H, Kelly SE, Lucassen AM, Mendes Á, Rial-Sebbag E, Stefánsdóttir V, Turnpenny PD, van El CG, van Langen IM, Cornel MC, Forzano F; European Society of Human Genetics. Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics. Eur J Hum Genet. 2019 Feb;27(2):169-18 doi: 10.1038/s41431-018-0285-1.
5. 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, Cornel MC; on behalf of European Society of Human Genetics, European Council of Legal Medicine, European Society of Cardiology working group on myocardial and pericardial diseases, European Reference Network for rare, low prevalence and complex diseases of the heart (ERN GUARD-Heart), Association for European Cardiovascular Pathology. European recommendations integrating genetic testing into multidisciplinary management of sudden cardiac death. Eur J Hum Genet. 2019 Dec;27(12):1763-177 doi: 10.1038/s41431-019-0445-y.
6. Mandelker D, Donoghue MTA, Talukdar S, Bandlamudi C, Srinivasan P, Vivek M, Jezdic S, Hanson H, Snape K, Kulkarni A, Hawkes L, Douillard JY, Wallace SE, Rial-Sebbag E, Meric-Bersntam F, George A, Chubb D, Loveday C, Ladanyi M, Berger MF, Taylor BS, Turnbull C. Germline-Focused Analysis of Tumour-Only Sequencing: Recommendations from the ESMO Precision Medicine Working Group. Ann Oncol. 2019 Aug 1;30(8):1221-1231. doi: 10.1093/annonc/mdz136.
7. Zawati MH, Chalmers D, Dallari SG, de Neiva Borba M, Pinkesz M, Joly Y, Chen H, Hartlev M, Leitsalu L, Soini S, Rial-Sebbag E, Hoppe N, Garani-Papadatos T, Vidalis P, Srinivas KR, Siegal G, Negri S, Hatanaka R, Al-Hussaini M, Al-Tabba' A, Motta-Murgía L, Moran LET, Hendriks A, Nnamuchi O, Isasi R, Krekora-Zajac D, Sadoun E, Ho C, Andanda P, Lee WB, Nicolás P, Mattsson T, Talanova V, Dosch A, Sprumont D, Fan CT, Hung TH, Nnamuchi O, Kaye J, Phillips A, Gowans H, Shah N, Hazel JW. Country Reports. J Law Med Ethics. 2019;47(4):582-704. doi:10.1177/1073110519897736.