Factors that influence decisions by families to donate brain tissue for medical research

Abstract

Whilst mainstream transplant literature provides valuable insights into the influences on families to donate organs and tissues for transplant, the relevance of these findings in relation to organ donation for research remain speculative. The present study aims to expand the research donation literature, by exploring factors that influence a family's decision to donate brain tissue to neuroscience research. The verbal responses of the senior available next-of-kin (NOK), to the question of brain donation for research, are analysed. The donation rate was high (54%) over the 5-year-period. NOK relationship to the deceased, and post mortem interval were the main factors associated with a positive donation. Parents were most likely to donate and this may result from a lifetime of decision-making on behalf of the deceased. Also, the longer the interval between death of the potential donor and the question being asked, the greater the likelihood of donation.

Frequency of brain tissue donation for research after suicide

“…Garrick 4 reported an acceptance rate of 54% in researchrelated donations of brain tissue. An Australian study 3 reported 58% acceptance rates; the main reasons were the desire to help others and open dialogue within the family about the organ donation process.…”

“…3,4,12 Although the apparently low number of whole-brain donations could indeed reflect this reluctance by Brazilian families, such interpretations should be made with caution. This is still an early case series, with substantial room for change.…”

“…16 Altruism is an established reason to justify donations for research. 4 A Scottish study revealed a unanimous view of organ donation as a good thing, and found that reasons for agreeing to brain donation were altruistic. 12 A Swedish survey showed through interviews made after the donation process that ethically sound studies do not cause harm to suicide-bereaved parents, and found that the great majority of participants reported gratitude for participating in the study.…”

“…1 Little is known about organ donation for research. 2 The main reasons and facilitators found for donation to biobanks are: 1) the desire to help others; 2) open dialogue within the family about the organ donation process 3,4 ; and 3) a desire to contribute to medical progress. 2,5 Preliminary reports indicate that the donation process does not induce anxiety among families, and suggest that this practice should be offered to all bereaved families.…”

Assessing families’ and patients’ attitudes toward brain donation for research purposes in a Brazilian population sample

“…Much of what is already known about this comes from Australian research that evaluated the responses of next-of-kin to a telephone request made on the day of the necropsy to donate the brain of the deceased (Azizi et al 2006;Garrick et al 2009;Sundqvist et al 2012).…”