Medicine and Health

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

M. Droin-mollard, S. D. Montgolfier, et al.

Explore the nuanced views of children, adolescents, and young adults with cancer, along with their parents, on genomic testing in this insightful study conducted by Marion Droin-Mollard and colleagues. The research uncovers key concerns, expectations, and hopes surrounding genetic assessments, illustrating the complexity of this critical topic.

00:00

Playback language: English

Index

Abstract

This article investigates the perspectives of children, adolescents, and young adults (AYA) with cancer and their parents regarding genomic testing. Forty-eight semi-structured interviews revealed key issues: perceived understanding and consenting, apprehension about test outcomes (expectations and fears), and perception of incidental findings. Main expectations included aetiological explanations, with children and AYAs emphasizing altruism, while parents focused on therapeutic and preventive approaches. Parents showed greater concern for family risk, while patients feared relapse or transmission to descendants. A multidisciplinary approach is suggested to improve understanding of the complexities of genetic/genomic testing.

Publisher

European Journal of Human Genetics

Published On

Jul 13, 2024

Authors

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

Related Publications

Explore these studies to deepen your understanding of the subject.

Medicine and Health

Social, Ethical and Treatment Related Problems Faced by Healthcare Workers in the Care of Head and Neck Cancer Patients: A Narrative Review from the Bioethics Consortium from India

M. S. Baliga, S. Lasrado, et al.

Medicine and Health

Understanding the use of metaphors by parents of children with cancer in blogs: a qualitative analysis

R. Gao and Y. Wu

Medicine and Health

Determinants of weight, psychological status, food contemplation and lifestyle changes in patients with obesity during the COVID-19 lockdown: a nationwide survey using multiple correspondence analysis

A. Caretto, S. Pintus, et al.

Medicine and Health

Efficacy of early PET-CT directed switch to carboplatin and paclitaxel based definitive chemoradiotherapy in patients with oesophageal cancer who have a poor early response to induction cisplatin and capecitabine in the UK: a multi-centre randomised controlled phase II trial

S. Mukherjee, C. N. Hurt, et al.

Listen, Learn & Level Up

Over 10,000 hours of research content in 25+ fields, available in 12+ languages.

No more digging through PDFs, just hit play and absorb the world's latest research in your language, on your time.

listen to research audio papers with researchbunny