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Brain banking in low and middle-income countries: Raison D'être for the Ibadan Brain Ageing, Dementia And Neurodegeneration (IBADAN) Brain Bank Project.中低收入国家的脑库建设:伊巴丹脑老化、痴呆和神经退行性变(IBADAN)脑库项目的存在理由。
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生物样本捐赠和神经生物样本库的知情同意:来自加纳和尼日利亚社区调查的证据。

Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria.

机构信息

School of Public Health, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana.

Department of Health Promotion and Education, Faculty of Public Health, University of Ibadan, Ibadan, Nigeria.

出版信息

PLoS One. 2022 Aug 11;17(8):e0267705. doi: 10.1371/journal.pone.0267705. eCollection 2022.

DOI:10.1371/journal.pone.0267705
PMID:35951660
原文链接:
https://pmc.ncbi.nlm.nih.gov/articles/PMC9371301/
Abstract

INTRODUCTION

Genomic research and neurobiobanking are expanding globally. Empirical evidence on the level of awareness and willingness to donate/share biological samples towards the expansion of neurobiobanking in sub-Saharan Africa is lacking.

AIMS

To ascertain the awareness, perspectives and predictors regarding biological sample donation, sharing and informed consent preferences among community members in Ghana and Nigeria.

METHODS

A questionnaire cross-sectional survey was conducted among randomly selected community members from seven communities in Ghana and Nigeria.

RESULTS

Of the 1015 respondents with mean age 39.3 years (SD 19.5), about a third had heard of blood donation (37.2%, M: 42.4%, F: 32.0%, p = 0.001) and a quarter were aware of blood sample storage for research (24.5%; M: 29.7%, F: 19.4%, p = 0.151). Two out of ten were willing to donate brain after death (18.8%, M: 22.6%, F: 15.0%, p<0.001). Main reasons for unwillingness to donate brain were; to go back to God complete (46.6%) and lack of knowledge related to brain donation (32.7%). Only a third of the participants were aware of informed consent (31.7%; M: 35.9%, F: 27.5%, p<0.001). Predictors of positive attitude towards biobanking and informed consent were being married, tertiary level education, student status, and belonging to select ethnic groups.

CONCLUSION

There is a greater need for research attention in the area of brain banking and informed consent. Improved context-sensitive public education on neurobiobanking and informed consent, in line with the sociocultural diversities, is recommended within the African sub region.

摘要

简介

基因组研究和神经生物库在全球范围内不断扩展。关于撒哈拉以南非洲地区神经生物库扩展方面,人们对生物样本捐献和共享意识以及意愿的实证证据尚不清楚。

目的

确定加纳和尼日利亚社区成员对生物样本捐献、共享和知情同意偏好的认识、看法和预测因素。

方法

在加纳和尼日利亚的七个社区中,随机选择社区成员进行了问卷调查横断面研究。

结果

在 1015 名年龄平均为 39.3 岁(标准差 19.5)的受访者中,约三分之一听说过献血(37.2%,男性:42.4%,女性:32.0%,p = 0.001),四分之一听说过为研究储存血样(24.5%;男性:29.7%,女性:19.4%,p = 0.151)。十分之二的人愿意在死后捐献大脑(18.8%,男性:22.6%,女性:15.0%,p<0.001)。不愿意捐献大脑的主要原因是:归还给上帝完整(46.6%)和缺乏与大脑捐献相关的知识(32.7%)。只有三分之一的参与者知道知情同意(31.7%;男性:35.9%,女性:27.5%,p<0.001)。对生物库和知情同意持积极态度的预测因素包括已婚、高等教育水平、学生身份和属于特定族群。

结论

在脑库和知情同意领域,需要更多的研究关注。建议在非洲次区域内,根据社会文化多样性,开展关于神经生物库和知情同意的针对性和敏感性更强的公众教育。