Of adult patients diagnosed with Glioblastoma Multiforme (GBM) only 5% survive 5 years. GBM research remains hampered by an incomplete understanding of brain tumour biology, partially attributed to limited access to human brain tumour samples. Post-Mortem Brain Donation (PMBD) programs allow researchers a unique insight into the pathogenesis of glioblastoma and address the challenge posed by tissue shortages.
There is available data representing the experience and impact of consenting to brain donation programs for patients with neurodegenerative and psychiatric diseases, but not for primary brain cancer patients. Consequently, biobanking professionals have limited opportunities to maximise the psychosocial value of PMBD programs for those who participate.
Our aim was to conduct a systematic review of existing literature to identify and characterise the perceived benefits and harms posed by PMBD programs to better understand the potential psychosocial value.
A systematic search identified relevant studies investigating the motivations, barriers, psychosocial impact or personal experiences of PMBD programs among patients, family and carers. Thirty-eight studies were identified for data extraction with quantitative and qualitative data grouped into key perceptions of benefit and harm.
The perceived benefits of PMBD were characterised into themes including: altruism, contributions to science/medical research, comfort/consolation and control/empowerment. An aversion to ‘waste’ was a key benefit identified across multiple participant groups. Perceived harms included physical harm and emotional distress, disfigurement, delay to funeral and withdrawal of clinical care to accelerate donation timelines.
Some perceived harms reflect misconceptions of the brain donation process, indicating the need for increased education and outreach to patient communities. Understanding patient experiences with inter-disciplinary PMBD programs will allow for an evidence based, best practice model to support GBM clinical research programs. Recognising the variability within respondent groups confirms the need for further investigation, particularly with respect to brain donation in the setting of GBM.