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
Tags
genomic testing
cancer
children
young adults
parents
expectations
incidental findings
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