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The Netherlands Brain Bank for Psychiatry.荷兰精神病学脑库
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Willingness to Be a Brain Donor: A Survey of Research Volunteers From 4 Racial/Ethnic Groups.成为脑捐赠者的意愿:对四个种族/族裔群体研究志愿者的调查
Alzheimer Dis Assoc Disord. 2017 Apr-Jun;31(2):135-140. doi: 10.1097/WAD.0000000000000174.
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Gene expression elucidates functional impact of polygenic risk for schizophrenia.基因表达阐明了精神分裂症多基因风险的功能影响。
Nat Neurosci. 2016 Nov;19(11):1442-1453. doi: 10.1038/nn.4399. Epub 2016 Sep 26.
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BrainSeq: Neurogenomics to Drive Novel Target Discovery for Neuropsychiatric Disorders.脑序列:神经基因组学推动神经精神疾病新靶点发现。
Neuron. 2015 Dec 16;88(6):1078-1083. doi: 10.1016/j.neuron.2015.10.047.
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Postmortem human brain genomics in neuropsychiatric disorders--how far can we go?神经精神疾病中的人类大脑死后基因组学——我们能走多远?
Curr Opin Neurobiol. 2016 Feb;36:107-11. doi: 10.1016/j.conb.2015.11.002. Epub 2015 Dec 10.
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Mapping DNA methylation across development, genotype and schizophrenia in the human frontal cortex.绘制人类额叶皮质发育、基因型和精神分裂症过程中的DNA甲基化图谱。
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Human genomics. The Genotype-Tissue Expression (GTEx) pilot analysis: multitissue gene regulation in humans.人类基因组学。基因型-组织表达(GTEx)试点分析:人类多组织基因调控
Science. 2015 May 8;348(6235):648-60. doi: 10.1126/science.1262110. Epub 2015 May 7.
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The Symbolic Value and Limitations of Racial Concordance in Minority Research Engagement.少数群体研究参与中种族一致性的象征价值与局限性
Qual Health Res. 2016 May;26(6):830-41. doi: 10.1177/1049732315575708. Epub 2015 Mar 13.
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Postmortem brain: an underutilized substrate for studying severe mental illness.尸检大脑:一种未得到充分利用的用于研究严重精神疾病的标本。
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Attitudes to deceased organ donation and registration as a donor among minority ethnic groups in North America and the U.K.: a synthesis of quantitative and qualitative research.北美和英国少数民族群体对已故器官捐赠和注册为捐赠者的态度:定量和定性研究的综合。
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非裔美国人和白种人参与死后人脑捐赠用于神经精神研究。

African-American and Caucasian participation in postmortem human brain donation for neuropsychiatric research.

机构信息

Lieber Institute for Brain Development, Baltimore, Maryland, United States of America.

Johns Hopkins University, School of Public Health, Department of Mental Health, Baltimore, Maryland, United States of America.

出版信息

PLoS One. 2019 Oct 23;14(10):e0222565. doi: 10.1371/journal.pone.0222565. eCollection 2019.

DOI:10.1371/journal.pone.0222565
PMID:31644530
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6808324/
Abstract

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.

摘要

增加非裔美国人的研究参与度对于生物医学研究的适用性和普遍性至关重要,因为人口多样性在国内外都在持续增加。然而,许多研究记录了不信任的历史渊源,以及其他可能导致非裔美国社区对参与生物医学研究产生抵制的障碍。然而,越来越多的最新科学证据表明,非裔美国人重视研究,并且在被要求参与时愿意参与。在本研究中,我们着手确定与非裔美国家庭参与死后人类脑组织捐赠用于神经精神疾病的因素,与来自同一法医尸检转介的白人家庭进行比较。我们回顾性地审查了 2010 年至 2015 年向三个法医办公室的连续转介的 1421 例大脑捐赠率,以及与捐赠相关的人口统计学和临床因素。总的来说,联系的近亲属中有 69.7%同意捐赠大脑。虽然白人家庭同意捐赠脑组织的比例(74.1%)明显高于非裔美国家庭(57.0%)(p<0.001),但马里兰州的非裔美国人的大脑捐赠率高达 60.5%。在确定的任何人口统计学或临床因素上,无论是非裔美国人还是白人捐赠者都与非捐赠者没有显著差异,包括年龄、性别、捐赠者的诊断,或联系的近亲属的关系(p>0.05)。然而,白人捐赠者明显年龄较大,受教育程度较高,因精神科诊断而更有可能被转介进行研究,更有可能同时存在药物滥用,并且更有可能自杀死亡,与非裔美国捐赠者相比(p<0.05)。当确定并接触到非裔美国参与者时,非裔美国家庭和白人家庭确实愿意当场捐赠脑组织用于神经精神研究,这支持了这样一种信念,即非裔美国人对生物医学研究的态度可能比以前认为的更为有利。