Abstract
Brain donations are imperative for research; understanding possible barriers to entry is required to improve brain donation rates. While a few surveys have studied attitudes towards brain banking in patients with neurodegenerative disorders, none have surveyed patients with chronic neurological disorders but without neurodegeneration. This cross-sectional study was conducted on 187 participants, with both neurodegenerative (n = 122) and non-neurodegenerative disorders (n = 65), to compare their attitudes and preferences towards brain donation. Encouragingly, patients with non-neurodegenerative disorders were just as likely to consider brain donation as those with neurodegenerative diseases. Approximately half of each group were willing to consider brain donation, and majority of participants across both groups would not be offended if asked to participate in brain donation (71%). Across both groups, altruistic reasons such as desire to advance medical knowledge and benefit to other patients were the main motivating factors for brain donation, while perceived stress for family members, fears of body disfigurement and religious reasons were the main reasons against brain donation. Of note, nearly two-thirds of all participants were agreeable to allow their family to decide on their behalf. Overall, participants with non-neurodegenerative disorders appeared equally likely to consider brain donation as participants with neurodegenerative disorders. This is an important finding as they represent a significant population seen in specialist neurology clinics who may be overlooked in brain donor recruitment and awareness efforts. Healthcare professionals involved in brain banking should consider actively approaching these potential donors and involving their family members in these discussions.
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Acknowledgements
The authors thank our participants and their families for their valuable contribution to the study. This study was funded by Singapore’s National Medical Research Council (ASLN by the Clinician-Scientist New Investigator Grant (CIRG/1416/2015) and Transition Award; LCST by the Singapore Parkinson’s disease Translational and Clinical Research flagship Grant (TCR12dec010)).
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LCST, JYJF, ASLN and RJWC contributed to the study design and conception. All authors were involved in participant recruitment and data collection. ASLN, RJWC and SS analysed the data and wrote the first draft of the manuscript, while all authors revised the manuscript for intellectual content. All authors have read and approved the final manuscript.
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Chan, R.J.W., Seah, S., Foo, J.Y.J. et al. Patient attitudes towards brain donation across both neurodegenerative and non-neurodegenerative neurological disorders. Cell Tissue Bank 21, 265–277 (2020). https://doi.org/10.1007/s10561-020-09819-2
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DOI: https://doi.org/10.1007/s10561-020-09819-2