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

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.