Genetic testing for childhood cancer predisposition syndromes: Controversies and recommendations from the SIOPE Host Genome Working Group meeting 2022

Background: Cancer Predisposition Syndromes (CPSs) have been identified in 7–15 % of children with cancer. The possibilities for germline genetic testing have increased in recent years, presenting new opportunities but also challenges. There is currently no consensus on germline genetic testing in c...

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Main Authors: Jette J. Bakhuizen, Franck Bourdeaut, Karin A.W. Wadt, Christian P. Kratz, Marjolijn C.J. Jongmans, Nicolas Waespe
Format: Article
Language:English
Published: Elsevier 2024-12-01
Series:EJC Paediatric Oncology
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Online Access:http://www.sciencedirect.com/science/article/pii/S2772610X24000357
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author Jette J. Bakhuizen
Franck Bourdeaut
Karin A.W. Wadt
Christian P. Kratz
Marjolijn C.J. Jongmans
Nicolas Waespe
author_facet Jette J. Bakhuizen
Franck Bourdeaut
Karin A.W. Wadt
Christian P. Kratz
Marjolijn C.J. Jongmans
Nicolas Waespe
author_sort Jette J. Bakhuizen
collection DOAJ
description Background: Cancer Predisposition Syndromes (CPSs) have been identified in 7–15 % of children with cancer. The possibilities for germline genetic testing have increased in recent years, presenting new opportunities but also challenges. There is currently no consensus on germline genetic testing in children with cancer in diagnostic settings. Methods: The International Society of Pediatric Oncology Europe (SIOPE) Host Genome Working Group used a consensus development conference method to reach agreement on four key topics: Who do we test? Which genes do we test? What do we disclose? How do we evaluate the benefits of testing? Results: The Working Group members agreed that: (1) All children with cancer should undergo clinical screening for their risk of harboring a CPS. (2) Targeted genetic testing based on clinical indication is recommended. Comprehensive CPS gene panels with more than 100–150 genes for all children with cancer should preferably be evaluated within research settings. (3) Smaller actionable gene panels can be considered including genes supporting diagnosis or influencing treatment decisions. (4) Clear pre-test information and consenting processes that highlight potential outcomes and implications of germline genetic testing are imperative. (5) Consequences of genetic testing, treatment adaption, and tumor surveillance in children with CPSs, including economic impact and psychosocial factors, should be further explored. Conclusions: These consensus-based recommendations provide guidance on germline genetic testing in children with cancer. Regular review of these recommendations is essential. Collaboration and the use of data sharing platforms can further improve screening procedures and its impact on care.
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spelling doaj-art-80ac3cc002404966bcc44cb173a75ae02024-12-13T11:08:28ZengElsevierEJC Paediatric Oncology2772-610X2024-12-014100176Genetic testing for childhood cancer predisposition syndromes: Controversies and recommendations from the SIOPE Host Genome Working Group meeting 2022Jette J. Bakhuizen0Franck Bourdeaut1Karin A.W. Wadt2Christian P. Kratz3Marjolijn C.J. Jongmans4Nicolas Waespe5Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands; Department of Genetics, University Medical Center Utrecht, Utrecht, the NetherlandsParis-Cité University, SIREDO pediatric cancer center & INSERMU830, Institut Curie, Paris, FranceDepartment of Clinical Genetics, Copenhagen University Hospital Righospitalet, Copenhagen, Denmark; Department of Clinical Medicine, Faculty of Health and Medical Sciences, University of Copenhagen, DenmarkPediatric Hematology and Oncology, Hannover Medical School, Hannover, GermanyPrincess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands; Department of Genetics, University Medical Center Utrecht, Utrecht, the NetherlandsDivision of Pediatric Hematology and Oncology, University Children’s Hospital Bern, Switzerland; Platform of Pediatric Onco-Hematology research (CANSEARCH research Laboratory), Department of Pediatrics, Gynecology, and Obstetrics, University of Geneva, Switzerland; Correspondence to: INSELSPITAL, University Hospital Bern, Department of Pediatrics, Division of Pediatric Hematology/ Oncology, Freiburgstrasse 15, Bern 3010, Switzerland.Background: Cancer Predisposition Syndromes (CPSs) have been identified in 7–15 % of children with cancer. The possibilities for germline genetic testing have increased in recent years, presenting new opportunities but also challenges. There is currently no consensus on germline genetic testing in children with cancer in diagnostic settings. Methods: The International Society of Pediatric Oncology Europe (SIOPE) Host Genome Working Group used a consensus development conference method to reach agreement on four key topics: Who do we test? Which genes do we test? What do we disclose? How do we evaluate the benefits of testing? Results: The Working Group members agreed that: (1) All children with cancer should undergo clinical screening for their risk of harboring a CPS. (2) Targeted genetic testing based on clinical indication is recommended. Comprehensive CPS gene panels with more than 100–150 genes for all children with cancer should preferably be evaluated within research settings. (3) Smaller actionable gene panels can be considered including genes supporting diagnosis or influencing treatment decisions. (4) Clear pre-test information and consenting processes that highlight potential outcomes and implications of germline genetic testing are imperative. (5) Consequences of genetic testing, treatment adaption, and tumor surveillance in children with CPSs, including economic impact and psychosocial factors, should be further explored. Conclusions: These consensus-based recommendations provide guidance on germline genetic testing in children with cancer. Regular review of these recommendations is essential. Collaboration and the use of data sharing platforms can further improve screening procedures and its impact on care.http://www.sciencedirect.com/science/article/pii/S2772610X24000357Pediatric cancerCancer screeningGermline geneticGenetic counsellingCancer predispositionFamilial cancer
spellingShingle Jette J. Bakhuizen
Franck Bourdeaut
Karin A.W. Wadt
Christian P. Kratz
Marjolijn C.J. Jongmans
Nicolas Waespe
Genetic testing for childhood cancer predisposition syndromes: Controversies and recommendations from the SIOPE Host Genome Working Group meeting 2022
EJC Paediatric Oncology
Pediatric cancer
Cancer screening
Germline genetic
Genetic counselling
Cancer predisposition
Familial cancer
title Genetic testing for childhood cancer predisposition syndromes: Controversies and recommendations from the SIOPE Host Genome Working Group meeting 2022
title_full Genetic testing for childhood cancer predisposition syndromes: Controversies and recommendations from the SIOPE Host Genome Working Group meeting 2022
title_fullStr Genetic testing for childhood cancer predisposition syndromes: Controversies and recommendations from the SIOPE Host Genome Working Group meeting 2022
title_full_unstemmed Genetic testing for childhood cancer predisposition syndromes: Controversies and recommendations from the SIOPE Host Genome Working Group meeting 2022
title_short Genetic testing for childhood cancer predisposition syndromes: Controversies and recommendations from the SIOPE Host Genome Working Group meeting 2022
title_sort genetic testing for childhood cancer predisposition syndromes controversies and recommendations from the siope host genome working group meeting 2022
topic Pediatric cancer
Cancer screening
Germline genetic
Genetic counselling
Cancer predisposition
Familial cancer
url http://www.sciencedirect.com/science/article/pii/S2772610X24000357
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