Consent for research use of tissue in adult oncology care: a systematic scoping review of patient perspectives, preferences and pathway implications
TL;DR
It is suggested that consent for research use of tissue and biospecimens in adult oncology should be understood as a pathway-based communication process rather than a single administrative event.
Abstract
Tissue collected during adult oncology care is central to translational research and precision oncology. However, consent for research use is often sought within complex diagnostic, surgical and treatment pathways, where timing, trust and information needs may shape how patients understand and experience the decision. We conducted a Joanna Briggs Institute (JBI)/Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) systematic scoping review to map adult oncology patients’ awareness, perceptions and preferences regarding tissue donation for research, biospecimen use, secondary use and biobanking participation. Searches of MEDLINE, Embase, CINAHL, PsycINFO and Scopus covered January 2000 to April 2026 and were supplemented by citation chasing and targeted grey literature searches. Twenty-two empirical studies representing 4958 participants/respondents were included. Patients supported research use of tissue and biospecimens, particularly residual material obtained during routine care, but willingness coexisted with low awareness, incomplete recall, variable understanding of future use, heterogeneous consent preferences and concerns about burden, privacy, governance, commercial use and equity. Acceptability declined when participation required additional invasive procedures. These findings suggest that consent for research use of tissue and biospecimens in adult oncology should be understood as a pathway-based communication process rather than a single administrative event. Consent models that incorporate appropriate timing, layered information, opportunities for questions, family discussion, and transparent explanations of governance, future use and withdrawal may better support patient-centred participation in translational cancer research. Digital or dynamic consent tools should be evaluated as optional adjuncts within this wider pathway rather than as standalone solutions.