Will My Soul Go to Heaven if They Take My Brain? Beliefs and Worries about Brain Donation among Four Ethnic Groups

Linda Boise, W Ladson Hinton, Howard J. Rosen, Mary Ruhl

Research output: Contribution to journalArticle

9 Citations (Scopus)

Abstract

Purpose of the Study: Studying the brain through autopsy is an essential component of Alzheimer's disease research. Racial and ethnic minorities are underrepresented in Alzheimer's research generally and, in particular, in the number of completed brain autopsies. We explored beliefs about and attitudes toward brain donation among African American, Chinese, Caucasian, and Latino research subjects and their family members through focus groups at 4 NIH-funded Alzheimer's Disease Centers. Design and Methods: Eighteen focus groups were conducted with 61 research subjects and 34 family members. Because the primary purpose of the focus groups was to identify the range of considerations that may influence the decision to participate in brain donation, data from focus groups were pooled and then analyzed. Results: We found that many of the concerns, attitudes, and beliefs about brain donation were similar across the 4 ethnic groups. Concerns and attitudes fell into 3 categories: (a) concerns and misconceptions about brain research and the process of brain removal, (b) religious beliefs, and (c) the role of the family. Implications: Our findings suggest that interventions to enhance enrollment in brain donation that target factors identified in this study are likely to be relevant to people from a broad range of backgrounds and ethnicities. Nonetheless, we observed some potential differences among racial/ethnic groups that may affect how research volunteers and their families approach a decision about donating their brain for research. Further study is warranted to explore these and other possible culturally distinct attitudes and beliefs about brain donation.

Original languageEnglish (US)
Pages (from-to)719-734
Number of pages16
JournalGerontologist
Volume57
Issue number4
DOIs
StatePublished - Aug 1 2017

Fingerprint

Ethnic Groups
Brain
Focus Groups
Research Subjects
Research
Autopsy
Alzheimer Disease
Religion
Hispanic Americans
African Americans
Volunteers

Keywords

  • Brain donation
  • Dementia
  • Diversity and ethnicity
  • Focus groups
  • Qualitative analysis: Content analysis

ASJC Scopus subject areas

  • Gerontology
  • Geriatrics and Gerontology

Cite this

Will My Soul Go to Heaven if They Take My Brain? Beliefs and Worries about Brain Donation among Four Ethnic Groups. / Boise, Linda; Hinton, W Ladson; Rosen, Howard J.; Ruhl, Mary.

In: Gerontologist, Vol. 57, No. 4, 01.08.2017, p. 719-734.

Research output: Contribution to journalArticle

@article{9eb1c2717c144eefaad8f806a4d06e8a,
title = "Will My Soul Go to Heaven if They Take My Brain? Beliefs and Worries about Brain Donation among Four Ethnic Groups",
abstract = "Purpose of the Study: Studying the brain through autopsy is an essential component of Alzheimer's disease research. Racial and ethnic minorities are underrepresented in Alzheimer's research generally and, in particular, in the number of completed brain autopsies. We explored beliefs about and attitudes toward brain donation among African American, Chinese, Caucasian, and Latino research subjects and their family members through focus groups at 4 NIH-funded Alzheimer's Disease Centers. Design and Methods: Eighteen focus groups were conducted with 61 research subjects and 34 family members. Because the primary purpose of the focus groups was to identify the range of considerations that may influence the decision to participate in brain donation, data from focus groups were pooled and then analyzed. Results: We found that many of the concerns, attitudes, and beliefs about brain donation were similar across the 4 ethnic groups. Concerns and attitudes fell into 3 categories: (a) concerns and misconceptions about brain research and the process of brain removal, (b) religious beliefs, and (c) the role of the family. Implications: Our findings suggest that interventions to enhance enrollment in brain donation that target factors identified in this study are likely to be relevant to people from a broad range of backgrounds and ethnicities. Nonetheless, we observed some potential differences among racial/ethnic groups that may affect how research volunteers and their families approach a decision about donating their brain for research. Further study is warranted to explore these and other possible culturally distinct attitudes and beliefs about brain donation.",
keywords = "Brain donation, Dementia, Diversity and ethnicity, Focus groups, Qualitative analysis: Content analysis",
author = "Linda Boise and Hinton, {W Ladson} and Rosen, {Howard J.} and Mary Ruhl",
year = "2017",
month = "8",
day = "1",
doi = "10.1093/geront/gnv683",
language = "English (US)",
volume = "57",
pages = "719--734",
journal = "The Gerontologist",
issn = "0016-9013",
publisher = "Oxford University Press",
number = "4",

}

TY - JOUR

T1 - Will My Soul Go to Heaven if They Take My Brain? Beliefs and Worries about Brain Donation among Four Ethnic Groups

AU - Boise, Linda

AU - Hinton, W Ladson

AU - Rosen, Howard J.

AU - Ruhl, Mary

PY - 2017/8/1

Y1 - 2017/8/1

N2 - Purpose of the Study: Studying the brain through autopsy is an essential component of Alzheimer's disease research. Racial and ethnic minorities are underrepresented in Alzheimer's research generally and, in particular, in the number of completed brain autopsies. We explored beliefs about and attitudes toward brain donation among African American, Chinese, Caucasian, and Latino research subjects and their family members through focus groups at 4 NIH-funded Alzheimer's Disease Centers. Design and Methods: Eighteen focus groups were conducted with 61 research subjects and 34 family members. Because the primary purpose of the focus groups was to identify the range of considerations that may influence the decision to participate in brain donation, data from focus groups were pooled and then analyzed. Results: We found that many of the concerns, attitudes, and beliefs about brain donation were similar across the 4 ethnic groups. Concerns and attitudes fell into 3 categories: (a) concerns and misconceptions about brain research and the process of brain removal, (b) religious beliefs, and (c) the role of the family. Implications: Our findings suggest that interventions to enhance enrollment in brain donation that target factors identified in this study are likely to be relevant to people from a broad range of backgrounds and ethnicities. Nonetheless, we observed some potential differences among racial/ethnic groups that may affect how research volunteers and their families approach a decision about donating their brain for research. Further study is warranted to explore these and other possible culturally distinct attitudes and beliefs about brain donation.

AB - Purpose of the Study: Studying the brain through autopsy is an essential component of Alzheimer's disease research. Racial and ethnic minorities are underrepresented in Alzheimer's research generally and, in particular, in the number of completed brain autopsies. We explored beliefs about and attitudes toward brain donation among African American, Chinese, Caucasian, and Latino research subjects and their family members through focus groups at 4 NIH-funded Alzheimer's Disease Centers. Design and Methods: Eighteen focus groups were conducted with 61 research subjects and 34 family members. Because the primary purpose of the focus groups was to identify the range of considerations that may influence the decision to participate in brain donation, data from focus groups were pooled and then analyzed. Results: We found that many of the concerns, attitudes, and beliefs about brain donation were similar across the 4 ethnic groups. Concerns and attitudes fell into 3 categories: (a) concerns and misconceptions about brain research and the process of brain removal, (b) religious beliefs, and (c) the role of the family. Implications: Our findings suggest that interventions to enhance enrollment in brain donation that target factors identified in this study are likely to be relevant to people from a broad range of backgrounds and ethnicities. Nonetheless, we observed some potential differences among racial/ethnic groups that may affect how research volunteers and their families approach a decision about donating their brain for research. Further study is warranted to explore these and other possible culturally distinct attitudes and beliefs about brain donation.

KW - Brain donation

KW - Dementia

KW - Diversity and ethnicity

KW - Focus groups

KW - Qualitative analysis: Content analysis

UR - http://www.scopus.com/inward/record.url?scp=85026921560&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85026921560&partnerID=8YFLogxK

U2 - 10.1093/geront/gnv683

DO - 10.1093/geront/gnv683

M3 - Article

C2 - 26935242

AN - SCOPUS:85026921560

VL - 57

SP - 719

EP - 734

JO - The Gerontologist

JF - The Gerontologist

SN - 0016-9013

IS - 4

ER -