Views of Adolescents and Young Adults with Cancer and Their Oncologists Toward Patients’ Participation in Genomic Research

Views of Adolescents and Young Adults with Cancer and Their Oncologists Toward Patients’ Participation in Genomic Research
Amanda M. Gutierrez, Jill O. Robinson, Robin Raesz-Martinez, Isabel Canfield, Mary A. Majumder, Sarah Scollon, Lauren R. Desrosiers, Rebecca L. Hsu, Wendy Allen-Rhoades, D. Williams Parsons, Sharon E. Plon, Amy L. McGuire, Janet Malek
Journal of Adolescent and Young Adult Oncology, 2 January 2023
Abstract
Purpose
With increased use of genomic testing in cancer research and clinical care, it is important to understand the perspectives and decision-making preferences of adolescents and young adults (AYAs) with cancer and their treating oncologists.
Methods
We conducted an interview substudy of the BASIC3 Study, which enrolled newly diagnosed cancer patients <18 years of age with assent. Of 32 young adults (YAs) with cancer who reached the age of majority (AOM; 18 years) while on study, 12 were successfully approached and all consented to study continuation at AOM. Of those, seven completed an interview. Patients’ oncologists, who enrolled and participated in return of clinical genomic results, were also interviewed (n = 12). Interviews were transcribed, deidentified, and analyzed using thematic analysis.
Results
YAs cited the possibility of helping others and advancing science as major reasons for their assent to initial study enrollment and their willingness to consent at AOM. YAs thought obtaining informed consent from research participants for study continuation at AOM was a good idea in case they changed their minds or wanted to make their own decisions, and to keep them aware of study activities. There was diversity in what YAs understood and learned from genomic testing: some recalled specific findings, while some remembered minimal information about their results. Oncologists varied in their assessment of adolescents’ engagement with the study and understanding of their results.
Conclusion
Given the different ways AYAs engage with genomic information, careful assessment of AYAs’ diverse communication and decision-making preferences is needed to tailor interactions accordingly.