Data Sharing, Biopsies and Patient Confidentiality in a Precision Medicine Trial for Childhood Cancer: A Mixed Method Study of Parents, Oncologists, and Scientists' Perspectives.

Background/

Objectives

Precision medicine is transforming care for children with cancer, but raises new challenges. We explored parents', oncologists' and scientists' perspectives on three aspects of a precision medicine trial for poor prognosis childhood cancer: data sharing, requests for additional tumor biopsies, and confidentiality.

Methods

Data were collected through PRISM-Impact, a psychosocial sub-study within the Zero Childhood Cancer Program's PRISM trial. Parents completed questionnaires at enrolment and one year later, and an optional interview after receiving their child's trial results. Bereaved parents completed a questionnaire six months after bereavement (T1B). Oncologists and scientists were interviewed one year following trial commencement. Quantitative data were analyzed descriptively, and qualitative data thematically.

Results

Parents (n = 126) considered additional tumor biopsies acceptable when risks were low and their child or oncologist supported the request. Oncologists (n = 26) emphasized weighing risk-benefit, ensuring parents felt fully informed, and research value. Most parents supported data sharing (≥89-96%), including after bereavement, despite potential privacy concerns. Parents supported overseas and interstate testing, and scientists having access to identifiable health information. Scientists (n = 10) found working with identifiable data emotionally challenging.

Conclusions

Parents, oncologists, and scientists showed high acceptance of procedural aspects of precision medicine. Future trials should address privacy concerns and ensure informed consent recognizes that parents' high acceptability of procedures may be linked to their hopes for benefit, reinforcing the need for informed consent.