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Willingness to Be a Brain Donor: A Survey of Research Volunteers From 4 Racial/Ethnic Groups
Linda Boise1, Ladson Hinton, Howard J Rosen
1*Layton Aging & Alzheimer's Disease Center, Oregon Health & Science University, Portland, OR †Alzheimer's Disease Center, University of California, Davis, Sacramento ‡Memory and Aging Center, University of California, San Francisco, San Francisco ¶Mary S. Easton Center for Alzheimer's Disease Research, University of California ¶¶Alzheimer's Disease Research Center, University of Southern California, Los Angeles ∥∥Institute for Memory Impairments and Neurological Disorders, University of California, Irvine, CA §Johns Hopkins University Alzheimer's Disease Research Center, Baltimore, MD ∥Knight Alzheimer's Disease Research Center, Washington University, St Louis, MO #School of Pharmacy, Hampton University, Hampton, VA **Alzheimer's Disease Research Center, University of Pittsburgh, Pittsburgh, PA ‡‡Mayo Clinic, Jacksonville, FL §§Alzheimer's Disease Center Emory University, Atlanta, GA ††Cognitive Neurology and Alzheimer's Disease Center, Northwestern University ##Department of Family Medicine and Rush Alzheimer's Disease Center, Rush University, Chicago, IL.
Introduction:
Racial and ethnic groups are under-represented among research subjects who assent to brain donation in Alzheimer disease research studies. There has been little research on this important topic. Although there are some studies that have investigated the barriers to brain donation among African American study volunteers, there is no known research on the factors that influence whether or not Asians or Latinos are willing to donate their brains for research.
Methods:
African American, Caucasian, Asian, and Latino research volunteers were surveyed at 15 Alzheimer Disease Centers to identify predictors of willingness to assent to brain donation.
Results:
Positive predictors included older age, Latino ethnicity, understanding of how the brain is used by researchers, and understanding of what participants need to do to ensure that their brain will be donated. Negative predictors included African/African American race, belief that the body should remain whole at burial, and concern that researchers might not be respectful of the body during autopsy.
Discussion:
The predictive factors identified in this study may be useful for researchers seeking to increase participation of diverse ethnic groups in brain donation.
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