Psychological and ethical issues raised by genomic in paediatric care pathway, a qualitative analysis with parents and childhood cancer patients.

Journal

European journal of human genetics : EJHG
ISSN: 1476-5438
Titre abrégé: Eur J Hum Genet
Pays: England
ID NLM: 9302235

Informations de publication

Date de publication:
13 Jul 2024
Historique:
received: 06 12 2023
accepted: 17 06 2024
revised: 27 05 2024
medline: 13 7 2024
pubmed: 13 7 2024
entrez: 12 7 2024
Statut: aheadofprint

Résumé

In paediatric oncology, genomics raises new ethical, legal and psychological issues, as somatic and constitutional situations intersect throughout the care pathway. The discovery of potential predisposition in this context is sometimes carried out outside the usual framework. This article focuses on the views of children, adolescents, and young adults (AYA) with cancer and their parents about their experience with genomic testing. Forty-eight semi-structured interviews were performed with children or AYAs with cancer and one of their parents, before and/or after receiving the genetic test results. The interviews were fully transcribed, coded and thematically analysed using an inductive method. This analysis revealed several themes that are key issues: perceived understanding and consenting, apprehension about the test outcomes (expectations and fears), perception and attitude towards incidental findings. The main expectation was an aetiological explanation. Children and AYAs also emphasised the altruistic meaning of genetic testing, while parents seemed to expect a therapeutic and preventive approach for their child and the rest of the family. Parents were more concerned about a family risk, while patients were more afraid of cancer relapse or transmission to their descendants. Both groups suggested possible feelings of guilt concerning family transmission and imaginary representations of what genomics may allow. Incidental findings were not understood by patients, while some parents perceived the related issues and hesitated between wanting or not to know. A multidisciplinary approach would be an interesting way to help parents and children and AYAs to better grasp the complexity of genetic and/or genomic testing.

Identifiants

DOI: 10.1038/s41431-024-01653-4 PMID: 38997469
pubmed: 38997469
doi: 10.1038/s41431-024-01653-4
pii: 10.1038/s41431-024-01653-4
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Subventions

Organisme : Institut National Du Cancer (French National Cancer Institute)
ID : 2018-2022 SHS-127
Organisme : Institut National Du Cancer (French National Cancer Institute)
ID : 2022-2026 Chaire EMPWT 16048
Organisme : Institut National Du Cancer (French National Cancer Institute)
ID : 2018-127
Organisme : Institut National Du Cancer (French National Cancer Institute)
ID : 2018-127

Informations de copyright

© 2024. The Author(s).

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Auteurs

Marion Droin-Mollard (M)

UF of Psychology and Liaison and Emergency Psychiatry, DMU Psychiatry and Addictology, Assistance Publique Hôpitaux de Paris, Hôpital Européen Georges Pompidou, F-75015, Paris, France.

Sandrine de Montgolfier (S)

IRIS Institut de Recherche Interdisciplinaire sur les Enjeux Sociaux (UMR 8156 CNRS-997 INSERM-EHESS-UPSN), Campus Condorcet, Aubervilliers, France. sandrine.demontgolfier@u-pec.fr.
University of Paris Est Créteil, Créteil, France. sandrine.demontgolfier@u-pec.fr.
Aix Marseille Universite, Inserm, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, ISSPAM, Marseille, France. sandrine.demontgolfier@u-pec.fr.
ORCID: 0000-0002-4216-9379

Anne-Paule Gimenez-Roqueplo (AP)

Département de Médecine Génomique des Tumeurs et des Cancers, Consultation d'oncogénétique Multidisciplinaire des Cancers Rares, Assistance Publique Hôpitaux de Paris, Hôpital Européen Georges Pompidou, Paris, France.
Université Paris Cité, PARCC, INSERM, Paris, France.
ORCID: 0000-0002-4816-670X

Cécile Flahault (C)

UF of Psychology and Liaison and Emergency Psychiatry, DMU Psychiatry and Addictology, Assistance Publique Hôpitaux de Paris, Hôpital Européen Georges Pompidou, F-75015, Paris, France.
Université Paris Cité, Laboratoire de Psychopathologie et Processus de Santé UR4057, Paris, France.

Arnaud Petit (A)

Service d'Hématologie et d'Oncologie Pédiatrique, Hôpital Armand Trousseau, APHP, Sorbonne Université, Paris, France.
ORCID: 0000-0001-8363-1622

Franck Bourdeaut (F)

SIREDO Pediatric Oncology Center, Laboratory of Translational Research in Pediatric Oncology-INSERMU830, Institut Curie, Paris Sciences Lettres Research University, Paris, France.
Université Paris-Cité, Paris, France.
ORCID: 0000-0001-9489-6781

Sophie Julia (S)

UMR 1027 INSERM, University of Toulouse & Toulouse University Hospital, Toulouse, France.
Medical Genetics Department, Purpan Hospital, Toulouse, France.

Emmanuelle Rial-Sebbag (E)

UMR 1027 INSERM, University of Toulouse & University Toulouse III-Paul Sabatier, Toulouse, France.

Isabelle Coupier (I)

CHU Montpellier, Hôpital Arnaud de Villeneuve Montpellier, Service de Génétique Médicale et Oncogénétique, Montpellier, France.
INSERM896, CRCM Val d'Aurelle, Montpellier, France.

Fatoumata Simaga (F)

Department of Genetics, Institut Curie, Paris, France.
ORCID: 0009-0004-6277-7621

Laurence Brugières (L)

Department of Pediatric and Adolescent Oncology, Gustave Roussy Cancer Campus, Université Paris-Saclay, Villejuif, France.

Léa Guerrini-Rousseau (L)

Department of Pediatric and Adolescent Oncology, Gustave Roussy Cancer Campus, Université Paris-Saclay, Villejuif, France.
Molecular Predictors and New Targets in Oncology, Inserm U981 Team "Genomics and Oncogenesis of Pediatric Brain Tumors", Gustave Roussy Cancer Campus, Université Paris-Saclay, Villejuif, France.

Béatrice Claret (B)

Department of Pediatric and Adolescent Oncology, Gustave Roussy Cancer Campus, Université Paris-Saclay, Villejuif, France.
Psycho-Oncology Unit, Supportive Care Department, Gustave Roussy Cancer Campus, Université Paris-Saclay, Villejuif, France.

Hélène Cavé (H)

Assistance Publique des Hôpitaux de Paris (AP-HP), Hôpital Robert Debré, Département de Génétique, Paris, France.
INSERM UMR_S1131, Institut de Recherche Saint-Louis, Université Paris-Cité, Paris, France.
ORCID: 0000-0003-2840-1511

Marion Strullu (M)

INSERM UMR_S1131, Institut de Recherche Saint-Louis, Université Paris-Cité, Paris, France.
Assistance Publique des Hôpitaux de Paris (AP-HP), Hôpital Robert Debré, Service d'Hémato-Immunologie Pédiatrique, Paris, France.

Lucile Hervouet (L)

IRIS Institut de Recherche Interdisciplinaire sur les Enjeux Sociaux (UMR 8156 CNRS-997 INSERM-EHESS-UPSN), Campus Condorcet, Aubervilliers, France.

Khadija Lahlou-Laforêt (K)

UF of Psychology and Liaison and Emergency Psychiatry, DMU Psychiatry and Addictology, Assistance Publique Hôpitaux de Paris, Hôpital Européen Georges Pompidou, F-75015, Paris, France.
Département de Médecine Génomique des Tumeurs et des Cancers, Consultation d'oncogénétique Multidisciplinaire des Cancers Rares, Assistance Publique Hôpitaux de Paris, Hôpital Européen Georges Pompidou, Paris, France.

Classifications MeSH