While invaluable for brain cancer research, post-mortem brain biobanking presents unique ethical, psychosocial and logistical considerations. Often coupled with conversations relating to mortality or end-of-life care, obtaining informed consent can be a delicate and highly personalised process requiring trust among the patient, their loved ones and health care providers (HCPs).
There is a growing evidence base detailing the positive psychosocial impact of post-mortem brain donation for donors and their loved ones with existing data reflecting the comfort and empowerment afforded by such programs. Despite this, recent data suggests that while HCPs see value in cancer biobanks, some are concerned that discussions relating to post-mortem research may harm doctor-patient relationships or cause undue distress to the donor or their family. These data are scarce and further work is needed to characterise the views of HCPs towards post-mortem brain donation to ensure optimal and comprehensive informed consent processes and a continuity of support for patients and loved ones engaging in these research programs.
Our aim is to characterise the perceptions and experiences of health care providers who may engage with or may be exposed to post-mortem brain donation programs in the context of primary brain cancer. Using a national, online, survey we will characterise opportunities for engagement, obstacles to participation and identify disincentives or misconceptions that may impact the ways in which HCPs interact with those who consent to brain donation programs.
Data collection instruments are in the final stages of development and we expect to invite participation from the clinical community in late 2024. Our hope is that the insights afforded by this study will enable integration of brain donation programs into clinical palliative practice – providing the dual benefit of maximising psychological benefit for the brain cancer population and ensuring the ongoing provision of invaluable biospecimens for research.