Psychological and ethical issues raised by genomic in paediatric care pathway, a qualitative analysis with parents and childhood cancer patients - Aix-Marseille Université
Article Dans Une Revue European Journal of Human Genetics Année : 2024

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

Marion Droin-Mollard
  • Fonction : Auteur
Anne-Paule Gimenez-Roqueplo
Cécile Flahault
  • Fonction : Auteur
Arnaud Petit
Franck Bourdeaut
Sophie Julia
  • Fonction : Auteur
Emmanuelle Rial-Sebbag
  • Fonction : Auteur
Isabelle Coupier
  • Fonction : Auteur
Fatoumata Simaga
Laurence Brugières
  • Fonction : Auteur
Léa Guerrini-Rousseau
  • Fonction : Auteur
Béatrice Claret
  • Fonction : Auteur
Hélène Cavé
Marion Strullu
  • Fonction : Auteur
Lucile Hervouet
  • Fonction : Auteur
Khadija Lahlou-Laforêt
  • Fonction : Auteur

Résumé

Abstract 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.
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hal-04694721 , version 1 (11-09-2024)

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Marion Droin-Mollard, Sandrine de Montgolfier, Anne-Paule Gimenez-Roqueplo, Cécile Flahault, Arnaud Petit, et al.. Psychological and ethical issues raised by genomic in paediatric care pathway, a qualitative analysis with parents and childhood cancer patients. European Journal of Human Genetics, In press, ⟨10.1038/s41431-024-01653-4⟩. ⟨hal-04694721⟩
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