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"It's My Wish, We Need This Program": Qualitative Reflections From People With High-Grade Brain Cancer Consenting to
Cassandra P Griffin1,2,3, Melissa A Carlson1,2,3, Marjorie M Walker1,2
1School of Public Health and Medicine, University of Newcastle, Newcastle, NSW, Australia.
JCO Oncology Practice
|November 10, 2025
Summary
Consenting to postmortem brain donation offers hope and purpose for cancer patients. This process can restore a sense of control and legacy, challenging clinical reluctance to discuss donation options.
Area of Science:
- Neuroscience
- Oncology
- Medical Ethics
Background:
- Postmortem brain tissue is crucial for brain cancer research.
- Increasing demand for tissue necessitates understanding donor experiences.
- Clinical teams often hesitate to approach patients for brain donation consent due to fear of causing distress.
Purpose of the Study:
- To characterize the human experience of consenting to postmortem brain donation.
- To provide an evidence base for integrating brain donation consent into clinical pathways.
- To understand the impact of brain donation programs on prospective donors.
Main Methods:
- Qualitative interviews were conducted with 21 prospective donors.
- Thematic analysis with narrative synthesis was applied to interview transcripts.
Main Results:
- Four key themes emerged: meaning/purpose, donor identity, regaining control/legacy, and stoicism/humor.
- Donors found meaning and purpose in their decision.
- The process allowed donors to regain control and define their legacy.
Conclusions:
- Consenting to postmortem brain donation has an overwhelmingly positive impact.
- It can instill purpose, meaning, and a sense of control for those facing mortality.
- Clinical reluctance may prevent patients from accessing a source of hope, empowerment, and legacy.
