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Cross Perspectives Between Social Sciences, Medicine and Civil society
23-24 Jun 2022 Lyon (France)
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Presentation
The objective of this conference is to present perspectives in social sciences on the development of genomic medicine in pediatric oncology. More specifically, it will focus on the social, ethical, legal and organizational issues related to the management of pediatric cancers in light of recent technological and therapeutic changes. Particular attention will also be paid to the methodological approaches necessary to collect the experience of sick children and adolescents and their relatives (Besle and Carof, 2020). Over the last twenty years, the improvement of sequencing technologies as well as the arrival of new therapeutic classes (targeted therapies, immunotherapies, gene therapies) has renewed hopes for an improvement in the management of pediatric cancers, and in particular of its most advanced forms (it is estimated that 20 % of pediatric cancers relapse) (Lacour, et al., 2014). Numerous clinical trials have thus developed in Western countries over the past decade to expand access to genomic sequencing (MAPPYACTS, INFORM, iTher) and improve access to targeted therapies in pediatric cancers (Match-R, ESMART) (Harttrampf et al. 2017). In this context two academic trials were launched in 2016: MAPPYACTS, the first being a genomic sequencing study of the tumor, which allows young patients to have access, depending on the results obtained, to a targeted therapy, proposed in certain cases by the second AcSé-ESMART. These trials raise questions about the access to therapeutic innovations for children and their families, which are being studied in ACCE research project (Access to therapeutic innovations for children, adolescents and young adults with advanced cancers in Europe) These techniques are challenging the boundaries between care and research and are at the center of national plans recently adopted by different countries to facilitate access to sequencing (Genomics England, Plan France Médecine Génomique 2025, The Precision Medicine Initiative in the United States). Already well established in pediatric oncology (Castel and Dalgalarrondo 2005; Oberman and Frader 2003), participation in experimental approaches is becoming even more normalized with genomic medicine, not only with the inclusion of many children at more advanced stages of cancer but also from the moment the disease is diagnosed. While this distinction between care and research may seem to decrease (Cambrosio et al. 2019) it is still very much present from an ethical and legal perspective. The interest in genomic medicine and its massive deployment in certain countries raises many questions, both medical and societal. Indeed, the use of these sequencing technologies remains largely experimental, and their clinical benefits have not yet been fully proven, which raises ethical questions in terms of understanding, information and consent for parents and young patients (De Montgolfier, et al., 2021). In addition, the possibility of incidental discovery of individual or family predispositions to cancer or genetic disease poses new ethical, legal and psychological issues, the consequences of which are not yet fully understood. These issues have been the subject of a research project (GeneInfoKid) which has made it possible to describe professionals’, children’s and parents’ perceptions of these new genomic approaches in cancerology. The progressive arrival of high throughput sequencing techniques "in routine" also raises questions about the organization of the health system (circulation of patients, prescribing physicians, geneticist physician) and about economic viability. This conference aims to extend these reflections by presenting numerous international works along different axes: Redrawing the boundary between care and research This first axis will question the boundary between "care" and "research", a boundary reconfigured by the use of experimental research and sequencing studies at an increasingly early stage in the care of children and adolescents. To what extent does this boundary still make sense? What consequences does this redrawing have on children and their families, for example in terms of their understanding? Inequalities in access to care The second axis analyzes the reorganization of care in the context of the development of highly specialized and technological medicine, which raises specific issues in terms of access: social and geographic inequalities, collaboration between medical teams, new temporalities in the care pathway and the illness. The individualization induced by this so-called precision medicine raises questions about the way in which these advanced technologies can be made available to all sick children without accentuating differences in care according to areas or socio-economic dimensions. Social movements The conference will be an opportunity to identify the place and role of the main actors, i.e. parents and children, and to testify about their expectations and their questioning as well as their actions in the field of personalized medicine. The importance and diversity of the forms of social movements (support for research, logistical assistance in care services, assistance to families, activities for children) in the field of pediatric cancers is particularly remarkable, especially around a multitude of associations of former sick children and parents. It is therefore critical to understand how associations appropriate the stakes of genomic medicine. Consent and data The aim of the conference will be to understand the current legal and ethical framework of genomic medicine concerning children, by analyzing in particular the evolution of the legal framework (bioethics law, 2021). From this perspective, we will focus on information and consent, collection, conservation and re-use of data for treatment or research purposes. The objective will be to shed light on the practices and ethical issues identified by actors when biomedical data retrieved in a research context concerns a sick child or adolescent. Children's voices Finally, the aim of the conference will be to understand, from the point of view of both medical teams and social science researchers, the ways in which children, alongside their families, can participate in decision-making in the context of personalized medicine. The ethical and methodological issues to collect their voice will also be examined.
BIBLIOGRAPHY Besle S. et Carof S., 2020. « Saisir la parole des enfants atteints de cancers avancés », In Côté I., Lavoie K. et Trottier-Cyr R. P. (dir.), La Méthodologie de recherche centrée sur l’enfant : recueillir et restituer la parole des enfants et des adolescents. Laval, Presse universitaire de Laval : 195-218. Castel, Patrick, and Sébastien Dalgalarrondo. 2005. “Les Dimensions Politiques de La Rationalisation Des Pratiques Médicales.” Sciences Sociales et Sante 23(4):5–40. Bourret, P., & Cambrosio, A. (2019). Genomic expertise in action : Molecular tumour boards and decision-making in precision oncology. Sociology of Health & Illness, 41(8), 1568-1584. https://doi.org/10.1111/1467-9566.12970 de Montgolfier, S., Hervouet, L., Le Tirant, S., & Rial-Sebbag, E. (2021). Intégrer l’avis de l’enfant dans les décisions de soin : Le cas du consentement aux investigations génétiques en oncopédiatrie. Anthropologie & Santé. Revue internationale francophone d’anthropologie de la santé. http://journals.openedition.org/anthropologiesante/9269 Harttrampf, Anne C., Ludovic Lacroix, Marc Deloger, Frederic Deschamps, Stephanie Puget, Nathalie Auger, Philippe Vielh, Pascale Varlet, Zsofia Balogh, Samuel Abbou, Adrien Allorant, Dominique Valteau-Couanet, Sabine Sarnacki, Louise Gamiche-Rolland, Guillaume Meurice, Veronique Minard-Colin, Jacques Grill, Laurence Brugieres, Christelle Dufour, Nathalie Gaspar, Stefan Michiels, Gilles Vassal, Jean Charles Soria, and Birgit Geoerger. 2017. “Molecular Screening for Cancer Treatment Optimization (MOSCATO-01) in Pediatric Patients: A Single-Institutional Prospective Molecular Stratification Trial.” Clinical Cancer Research 23(20):6101–12. Lacour, Brigitte, Stéphanie Goujon, Sandra Guissou, Aurélie Guyot-Goubin, Solène Desmée, Emmanuel Désandes, and Jacqueline Clavel. 2014. “Childhood Cancer Survival in France, 2000–2008.” European Journal of Cancer Prevention 23(5):449–57. Oberman, Michelle, and Joel Frader. 2003. “Dying Children and Medical Research: Access to Clinical Trials as Benefit and Burden.” American Journal of Law & Medicine 29(2–3):301–17.
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