title: Assessing families' and patients' attitudes toward brain donation for research purposes in a Brazilian population sample.
abstract: The neuropathological examination of postmortem human brain tissue is an essential resource for the definitive diagnosis and research on neurodegenerative diseases. Due to the growing need of donated brains to supply the Brain Banks, the understanding of the factors associated with the consent for the donation in our context is an important aspect of the process of brain donation. The verbal answers and the donation consent rate were evaluated in three groups: 30 relatives of patients who underwent verification of the cause of death, 14 patients assisted at a neurology ambulatory outpatient clinic, and 18 patients' relatives. The donation consent rates were of 46.6, 92.8 and 88.8 %, respectively. The main reasons for refusal were the disagreement with the autopsy, philosophical and religious issues, objections from other family members, and the consideration of the wishes of the deceased. The consent was specially motivated by the interest in the advances of scientific knowledge, altruistic reasons and the personal experiences with the disease. Factors as the emotional fragility at the moment of death, the beliefs, family matters, and the lack of knowledge are key elements in the donation process. Future goals include the establishment of a brain donor program with the support of academic institutions, hospitals, scientists, community, patient's associations and autopsy assistants. Approaching patients and relatives in specialized ambulatories clinic during assistance is probably the most efficient mean of obtaining brains for research.
authors.affiliation: Federal University of Health Sciences of Porto Alegre (Universidade Federal de Ciências da Saúde de Porto Alegre), Porto Alegre, Brazil, marianakumaira@gmail.com.
authors.forename: M K
authors.initials: MK
authors.lastname: Fonseca
authors.forename: E
authors.initials: E
authors.lastname: Rodrigues-Neto
authors.forename: A S R
authors.initials: AS
authors.lastname: Costa
authors.forename: M A B C
authors.initials: MA
authors.lastname: Rockembach
authors.forename: R S
authors.initials: RS
authors.lastname: Padilha
authors.forename: L L
authors.initials: LL
authors.lastname: Fernandez
authors.forename: F H
authors.initials: FH
authors.lastname: Oliveira
authors.forename: L P
authors.initials: LP
authors.lastname: Garcia
authors.forename: A
authors.initials: A
authors.lastname: Hilbig
mesh_terms: D001344:Autopsy / Q000379:methods; D001921:Brain / Q000473:pathology / Q000601:surgery*; D001938:Brazil; D003657:Decision Making / Q000502:physiology; D005190:Family / Q000208:ethnology* / Q000523:psychology; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D014019:Tissue Donors / Q000523:psychology; D009927:Tissue and Organ Procurement