Advertisement

Cell and Tissue Banking

, Volume 16, Issue 2, pp 287–294 | Cite as

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

  • M. K. Fonseca
  • E. Rodrigues-Neto
  • A. S. R. Costa
  • M. A. B. C. Rockembach
  • R. S. Padilha
  • L. L. Fernandez
  • F. H. Oliveira
  • L. P. Garcia
  • A. Hilbig
Original Paper

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.

Keywords

Brain donation Research participation Neurodegenerative diseases 

Notes

Acknowledgments

This research was carried out with the financial aid of the Research Support Foundation of Rio Grande do Sul—FAPERGS (Fundação de Amparo à Pesquisa do Rio Grande do Sul). The authors thank the Forensic Department of the General Institute of Examinations (Department of Forensic Medicine) of Rio Grande do Sul for their support.

References

  1. Shaw K et al (2012) Successful recruitment of centenarians for post-mortem brain donation: results from the Georgia centenarian study. J Biosci Med 2(1):124.Google Scholar
  2. Azizi L, Garrick TM, Harper CG (2006) Brain donation for research: strong support in Australia. J Clin Neurosci 13(4):449–452CrossRefPubMedGoogle Scholar
  3. Beardsall L, Barkley C, O’Sullivan A (1992) The response of elderly community residents to request for brain donation: an interim report. Int J Geriatr Psychiatry 7(3):199–202CrossRefGoogle Scholar
  4. Darnell KR, McGuire C, Danner DD (2011) African American participation in Alzheimer’s disease research that includes brain donation. Am J Alzheimers Dis Other Dement 26(6):469–476CrossRefGoogle Scholar
  5. Dembogurski JE, Azenha MV, Amaral APC et al (2011) Dados preliminares de um modelo de programa de doação de corpos: programa de Doação de Corpos da UFCSPA. Rev AMRIGS 55(1):7–10Google Scholar
  6. Eatough V, Shaw K, Lees A (2012) Banking on brains: insights of brain donor relatives and friends from an experiential perspective. Psychol Health 27(11):1271–1290CrossRefPubMedGoogle Scholar
  7. Garrick T, Azizi L, Merrick J, Harper C (2003) Brain donation for research, what do people say? Intern Med J 33(9–10):475CrossRefPubMedGoogle Scholar
  8. Garrick T, Sundqvist N, Dobbins T, Azizi L, Harper C (2009) Factors that influence decisions by families to donate brain tissue for medical research. Cell Tissue Bank 10(4):309–315CrossRefPubMedGoogle Scholar
  9. Harris C, Kiger A, Counsell C (2013) Attitudes to brain donation for Parkinson’s research and how to ask: a qualitative study with suggested guidelines for practice. J Adv Nurs 69(5):1096–1108Google Scholar
  10. Jefferson AL, Lambe S, Cook E, Pimontel M, Palmisano J, Chaisson C (2011) Factors associated with African-American and white elders’ participation in a brain donation program. Alzheimer Dis Assoc Disord 25(1):11–16CrossRefPubMedCentralPubMedGoogle Scholar
  11. Kaye JÁ, Dame A, Lehman S, Sexton G (1999) Factors associated with brain donation among healthy elderly people. J Gerontol A Biol Sci Med Sci 54(11):M560–M564CrossRefPubMedGoogle Scholar
  12. Kuhta T, Zadikoff C, Simuni T, Martel A, Williams K, Videnovic A (2011) Brain donation—what do patients with movement disorders know and how do they feel about it? Park Relat Disord 17(3):204–207CrossRefGoogle Scholar
  13. Lambe S, Cantwell N, Islam F, Horvath K, Jefferson AL (2011) Perceptions, knowledge, incentives, and barriers of brain donation among African American elders enrolled in an Alzheimer’s research program. Gerontologist 51(1):28–38CrossRefPubMedCentralPubMedGoogle Scholar
  14. Millar T, Lerpiniere C, Walker R, Smith C, Bell JE (2008) Postmortem tissue donation for research: a positive opportunity? Br J Nurs 17(10):644–649CrossRefPubMedGoogle Scholar
  15. Schmitt FA, Wetherby MM, Wekstein DR, Dearth CM, Markesbery WR (2001) Brain donation in normal aging: procedures, motivations, and donor characteristics from the Biologically Resilient Adults in Neurological Studies (BRAiNS) Project. Gerontologist 41(6):716–722CrossRefPubMedGoogle Scholar
  16. Solomon SA, Adams KH (1993) Attitudes of relatives to autopsies of elderly patients. Age Ageing 22(3):205–208CrossRefPubMedGoogle Scholar
  17. Stevens M (1998) Factors influencing decisions about donation of the brain for research purposes. Age Ageing 27(5):623–629CrossRefPubMedGoogle Scholar
  18. Sundqvist N, Garrick T, Harding A (2012) Families’ reflections on the process of brain donation following coronial autopsy. Cell Tissue Bank 13(1):89–101Google Scholar
  19. Vonsattel JPG, Amaya MP, Keller CE (2008) Twenty-first century brain banking. Processing brains for research: the Columbia University methods. Acta Neuropathol 115:509–532CrossRefPubMedCentralPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2014

Authors and Affiliations

  • M. K. Fonseca
    • 1
  • E. Rodrigues-Neto
    • 1
  • A. S. R. Costa
    • 1
  • M. A. B. C. Rockembach
    • 1
  • R. S. Padilha
    • 1
  • L. L. Fernandez
    • 1
    • 2
  • F. H. Oliveira
    • 1
  • L. P. Garcia
    • 1
  • A. Hilbig
    • 1
    • 3
  1. 1.Federal University of Health Sciences of Porto Alegre (Universidade Federal de Ciências da Saúde de Porto Alegre)Porto AlegreBrazil
  2. 2.Pontifical Catholic University of Rio Grande do Sul (Pontifícia Universidade Católica do Rio Grande do Sul)Porto AlegreBrazil
  3. 3.Clinic Medicine at the Federal University of Rio Grande do Sul (Universidade Federal do Rio Grande do Sul)Porto AlegreBrazil

Personalised recommendations