TY - JOUR
T1 - African-American and Caucasian participation in postmortem human brain donation for neuropsychiatric research
AU - Deep-Soboslay, Amy
AU - Mighdoll, Michelle I.
AU - Jaffe, Andrew E.
AU - Thomas, Stephen B.
AU - Herman, Mary M.
AU - Sirovatka, Jonathan
AU - King, Jewell P.
AU - Fowler, David R.
AU - Zulauf, Dawn
AU - DiAngelo, Constance
AU - Hyde, Thomas M.
AU - Kleinman, Joel E.
N1 - Funding Information:
The authors received no specific funding for this work. However this work was supported in part by: National Institute of Mental Health, Division of Intramural Research, NIH, Bethesda, MD; Lieber Institute for Brain Development. We gratefully acknowledge the Offices of the Chief Medical Examiner of DC, and of the states of Maryland and Virginia, Northern District, for their collaboration on this study. We gratefully thank the families who donated tissue to make this research possible. We also thank Dr. Marie-Lydie Pierre-Louis, Taylor Pinckney, Vesna Imamovic, Yeva Snitkovsky, Nancy Bull, and the late Regina Odom for their assistance with data collection.
Publisher Copyright:
Copyright: This is an open access article, free of all copyright, and may be freely reproduced, distributed, transmitted, modified, built upon, or otherwise used by anyone for any lawful purpose. The work is made available under the Creative Commons CC0 public domain dedication.
PY - 2019/10/1
Y1 - 2019/10/1
N2 - Increased African-American research participation is critical to the applicability and generalizability of biomedical research, as population diversity continues to increase both domestically and abroad. Yet numerous studies document historical origins of mistrust, as well as other barriers that may contribute to resistance in the African-American community towards participation in biomedical research. However, a growing body of more recent scientific evidence suggests that African-Americans value research and are willing to participate when asked. In the present study, we set out to determine factors associated with research participation of African-American families in postmortem human brain tissue donation for neuropsychiatric disorders as compared with Caucasian families, from same-day medical examiner autopsy referrals. We retrospectively reviewed brain donation rates, as well as demographic and clinical factors associated with donation in 1,421 consecutive referrals to three medical examiner’s offices from 2010–2015. Overall, 69.7% of all next-of-kin contacted agreed to brain donation. While Caucasian families consented to donate brain tissue at a significantly higher rate (74.1%) than African-American families (57.0%) (p<0.001), African-American brain donation rates were as high as 60.5% in referrals from Maryland. Neither African-American nor Caucasian donors differed significantly from non-donors on any demographic or clinical factors ascertained, including age, sex, diagnosis of the donor, or in the relationship of the next-of-kin being contacted (p>0.05). However, Caucasian donors were significantly older, had more years of education, were more likely to be referred for study due to a psychiatric diagnosis, more likely to have comorbid substance abuse, and more likely to have died via suicide, as compared with African-American donors (p<0.05). When African-American participants are identified and approached, African-American families as well as Caucasian families are indeed willing to donate brain tissue on the spot for neuropsychiatric research, which supports the belief that African-American attitudes towards biomedical research may be more favorable than previously thought.
AB - Increased African-American research participation is critical to the applicability and generalizability of biomedical research, as population diversity continues to increase both domestically and abroad. Yet numerous studies document historical origins of mistrust, as well as other barriers that may contribute to resistance in the African-American community towards participation in biomedical research. However, a growing body of more recent scientific evidence suggests that African-Americans value research and are willing to participate when asked. In the present study, we set out to determine factors associated with research participation of African-American families in postmortem human brain tissue donation for neuropsychiatric disorders as compared with Caucasian families, from same-day medical examiner autopsy referrals. We retrospectively reviewed brain donation rates, as well as demographic and clinical factors associated with donation in 1,421 consecutive referrals to three medical examiner’s offices from 2010–2015. Overall, 69.7% of all next-of-kin contacted agreed to brain donation. While Caucasian families consented to donate brain tissue at a significantly higher rate (74.1%) than African-American families (57.0%) (p<0.001), African-American brain donation rates were as high as 60.5% in referrals from Maryland. Neither African-American nor Caucasian donors differed significantly from non-donors on any demographic or clinical factors ascertained, including age, sex, diagnosis of the donor, or in the relationship of the next-of-kin being contacted (p>0.05). However, Caucasian donors were significantly older, had more years of education, were more likely to be referred for study due to a psychiatric diagnosis, more likely to have comorbid substance abuse, and more likely to have died via suicide, as compared with African-American donors (p<0.05). When African-American participants are identified and approached, African-American families as well as Caucasian families are indeed willing to donate brain tissue on the spot for neuropsychiatric research, which supports the belief that African-American attitudes towards biomedical research may be more favorable than previously thought.
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U2 - 10.1371/journal.pone.0222565
DO - 10.1371/journal.pone.0222565
M3 - Article
C2 - 31644530
AN - SCOPUS:85074090042
SN - 1932-6203
VL - 14
JO - PloS one
JF - PloS one
IS - 10
M1 - e0222565
ER -