Brain donation: who and why?

Abstract

Understanding what influences people to donate, or not donate, body organs and tissues is very important for the future of transplant surgery and medical research (Garrick in J Clin Neurosci 13:524-528, 2006). A previous web-based motivation survey coordinated by the New South Wales Tissue Resource Centre found that most people who participated in brain donation were young, female, educated Australians, not affiliated with any particular religion, and with a higher prevalence of medical illness than the general Australian population. It discussed the main motivating factors for brain donation to be "the benefits of the research to medicine and science". This study has been replicated in a paper-based version to capture a broader cross-section of the general population, to find out who they are and what motivates them to donate. All consented and registered brain donors (n = 1,323) were sent a questionnaire via the post and recipients were given 3 months to complete the questionnaire and return it in a reply paid envelope. Results were entered into the original web-based survey and analyzed using SPSS version 10. Six hundred and fifty-eight questionnaires were returned completed, a response rate of 53%. The results show that people from all age groups are interested in brain donation. The over 65's are the largest of the groups (30.7%). The majority of the participants were female (60.6%), married (49.2%) with children (65.8%), employed (52.9%) and have a tertiary education (73.3%). They were either non-religious (48.2%) or Christian (41.6%) and were mostly Australian (65.4%). Most (81%) had pledged to donate other organs and tissues for transplantation. The most commonly cited reasons for the donation were to benefit science (27.6%), to benefit medicine (23.9%), a family illness (17.5%) and to benefit the community (16.6%). This study demonstrates that people across all age groups are interested in brain donation. Recruitment of new brain donors could target the over 65 female Australians, who are not religious or Christian and who have also donated other organs and tissues for transplant purposes. It also indicates the need to make donation for research part of the national transplant donation program.

Families’ reflections on the process of brain donation following coronial autopsy

“…The response rate for this study was similar to that for a recent mail survey of registered brain donors to our Centre (53%; Glaw et al 2009). …”

“…The content of the current questionnaire was modelled on a questionnaire used in a recent NSW TRC study to ascertain motivation for brain donation by pre-consenting potential brain donors (Glaw et al 2009), and on the Edinburgh Sudden Death Brain and Tissue Bank Questionnaire for Families (Millar et al 2007). Our questionnaire contained two parts.…”

“…The two modal reasons volunteered by participants for brain donation in this study were, ‘to help others’ and consideration of the wishes of the deceased. Both altruism and knowledge of the prior wishes of the deceased are frequently mentioned as key motivating factors in the transplant and research organ donation literature (Beard et al 2002; Bennett and Savani 2004; Glaw et al 2009). Informal observation at the time indicated that NOK were not further distressed by the call asking them to consider brain donation.…”

A platform for discovery: The University of Pennsylvania Integrated Neurodegenerative Disease Biobank

“…Although the number of autopsies worldwide is declining [23,24], families and patients support autopsy-based research altruistically [25–27], and autopsies have a recognized educational and teaching purpose [28]. In addition, still in this century a significant number of autopsies detect clinically important missed diagnoses, although the rate of autopsy-detected diagnostic errors has declined (including nonneurological cause of death) [29].…”

The NSW brain tissue resource centre: Banking for alcohol and major neuropsychiatric disorders research

“…The first is the New South Wales Department of Forensic Medicine (DOFM) (equivalent to the Medical Examiners office), that receives all sudden, unexpected, accidental, institutional, or violent deaths from the greater Sydney region (~5 million people). Approximately 60% of the next of kin contacted consent to brain donation (Glaw et al, 2009). This source provides the majority of alcoholic cases as well as controls.…”