Mind Over Matter: Confronting Challenges in Post-Mortem Brain Biobanking for Glioblastoma Multiforme

Abstract

Over the past 10 years, there has been limited progress for the treatment of brain cancer and outcomes for patients are not much improved. For brain cancer researchers, a major obstacle to biomarker driven research is limited access to brain cancer tissue for research purposes. The Mark Hughes Foundation Brain Biobank is one of the first post-mortem adult brain banks in Australia to operate with protocols specifically developed for brain cancer. Located within the Hunter New England Local Health District and operated by Hunter Cancer Biobank, the boundaries of service provided by the Brain Bank extend well into the surrounding regional and rural areas of the Local Health District and beyond. Brain cancer biobanking is challenging. There are conflicting international guidelines for best practice and unanswered questions relating to scientific, psychosocial and operational practices. To address this challenge, a best practice model was developed, informed by a consensus of existing data but with consideration of the difficulties associated with operating in regional or resource poor settings. The regional application of this model was challenged following the presentation of a donor located in a remote area, 380km away from the biobank. This required biobank staff to overcome numerous obstacles including long distance patient transport, lack of palliative care staff, death in the home and limited rural outreach services. Through the establishment of shared goals, contingency planning and the development of an informal infrastructure, the donation was facilitated within the required timeframe. This experience demonstrates the importance of collaboration and networking to overcome resource insufficiency and geographical challenges in rural cancer research programmes.

Understanding the value of brain donation for research to donors, next-of-kin and clinicians: A systematic review

“…While these harms are not outside the realm of possibility, informed consent processes should detail the safeguards and measures employed by biobanking facilities to mitigate the risks of privacy and confidentiality breaches. Likewise, while the donation process does have logistical and feasibility requirements that could potentially impact end of life decisions, we have shown previously that through planning and informal systems reform, rapid brain tissue donation can be facilitated in a manner consistent with the end of life wishes of the donor–despite geographical or logistical challenges [ 72 ]. Crucial to facilitating this is a multi-disciplinary clinical support team, united in supporting the patient to donate once consented however the data collected in this review suggests this may be an enduring challenge for brain donation teams.…”

Brain Donation Decisions as Disease Specific Behaviors: An Elucidation of the Donation Process in the Context of Essential Tremor

“…However, most research focuses on cultural and personal differences that influence this decision, and rarely considers disease-specific motivations. Second, some research has focused on how brain banks collect data prospectively and plan to harvest brain tissue in the future; however, little has been written about the rationale for such approaches [ 15 16 ]. That is, brain repositories seldom explain why they decide to follow participants years before the actual donation or, on the contrary, only chose to approach the donor’s family at the time of death [ 17 18 ].…”