Genomic Sequencing Research in Pediatric Cancer Care: Decision Making, Attitudes, and Perceived Utility Among Adolescents and Young Adults and Their Parents

Authors

Amanda M Gutierrez
Jill O Robinson
Hadley S Smith
Lauren R Desrosiers-Battu
Sarah R Scollon
Isabel Canfield
Rebecca L Hsu
Nicole M Schneider
D Williams Parsons
Sharon E Plon
Wendy Allen-Rhoades
Mary A Majumder
Janet Malek
Amy L McGuire

Language

English

Publication Date

8-1-2024

Journal

Genetics in Medicine Open

DOI

10.1016/j.gim.2024.101168

PMID

38767058

PMCID

PMC11534009

PubMedCentral® Posted Date

8-1-2025

PubMedCentral® Full Text Version

Author MSS

Abstract

Purpose: Professional guidelines recommend engaging adolescents and young adults (AYAs) in medical decision making (DM), including whether to undergo genomic sequencing (GS). We explored DM around GS and attitudes after return of GS results among a diverse group of AYAs with cancer and their parents.

Methods: We surveyed AYAs with cancer (n = 75) and their parents (n = 52) 6 months after receiving GS results through the Texas KidsCanSeq study. We analyzed AYAs' DM role in GS research enrollment and their satisfaction with that role. We compared AYAs' and parents' self-reported understanding of, attitudes toward, and perceived utility of the AYA's GS results.

Results: Most AYAs reported equally sharing DM with their parents (55%) or leading DM (36%) about GS research. Compared with their cancer care DM role, 56% of AYAs reported the same level of involvement in GS research DM, whereas 32% were more involved, and 13% were less involved (P = .011). AYAs were satisfied (99%) with their DM role regarding GS study participation. AYAs and parents had similar self-reported understanding of, attitudes toward, and perceived utility of the GS results.

Conclusion: Our results support engaging AYAs in DM about GS research and provide insights into AYAs' DM preferences and positive attitudes toward GS.

Keywords

Humans, Adolescent, Male, Female, Parents, Young Adult, Neoplasms, Decision Making, Adult, Surveys and Questionnaires, Genomics, Genetic Testing, Health Knowledge, Attitudes, Practice, adolescents and young adults with cancer, genomic sequencing, decision-making, attitudes, perceived utility

Published Open-Access

yes

Recommended Citation

Gutierrez, Amanda M; Robinson, Jill O; Smith, Hadley S; et al., "Genomic Sequencing Research in Pediatric Cancer Care: Decision Making, Attitudes, and Perceived Utility Among Adolescents and Young Adults and Their Parents" (2024). Center for Medical Ethics and Health Policy Staff Publications. 272.
https://digitalcommons.library.tmc.edu/med_ethics/272