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Updated: Apr 9, 2026
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Detecting Somatic Genetic Alterations in Tumor Specimens by Exon Capture and Massively Parallel Sequencing
Published on: October 18, 2013
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Adolescents' Experiences With Sequencing for Genetic Predisposition in Pediatric Cancer: A Quantitative Study
S B B Bon1, R H P Wouters1,2, J J Bakhuizen1,3
1Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
Psycho-Oncology
|April 7, 2026
Summary
Adolescents with cancer undergoing germline sequencing reported positive experiences. Despite limited genetics knowledge and worries about recurrence and family health risks, they were satisfied with the process.
Area of Science:
- Pediatric Oncology
- Genetics
- Adolescent Medicine
Background:
- Germline sequencing is becoming more common in pediatric cancer care.
- Limited data exists on adolescents' perspectives regarding genetic testing for cancer predisposition.
Purpose of the Study:
- To investigate adolescents' understanding, expectations, hopes, and concerns about germline sequencing.
- To assess satisfaction and regret associated with genetic testing in pediatric cancer patients.
Main Methods:
- Adolescents (12-18 years) with cancer completed questionnaires on genetics knowledge, expectations, hopes, worries, satisfaction, and regret.
- Assessments were conducted pre- and post-genetic test result disclosure.
Main Results:
- Participants had low genetics knowledge (49% correct) but high hopes for benefiting future patients.
- Common worries included cancer recurrence and risks to offspring; many sought personal understanding of their cancer.
- Most adolescents (36/38) with negative results reported high satisfaction and low regret.
Conclusions:
- Adolescents with cancer generally have positive experiences with germline sequencing.
- Concerns extend beyond personal health to family, future offspring, and other patients.
- Adolescents' perspectives are crucial for integrating genetic testing into pediatric oncology.
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