African Neurobiobank for Precision Stroke Medicine - (ELSI) Project

非洲精准中风医学神经生物库 - (ELSI) 项目

基本信息

批准号：
10197183
负责人：
OYEDUNNI SOLA ARULOGUN
金额：
$ 10.03万
依托单位：
COLLEGE OF MEDICINE, UNIVERSITY OF IBADAN
依托单位国家：
美国
项目类别：
财政年份：
2018
资助国家：
美国
起止时间：
2018-09-21 至 2023-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10197183
关键词：
Address Affect Africa Africa South of the Sahara African Applications Grants Attitude Belief Belief System Biocompatible Materials Blood Brain Brain imaging CDKN2A gene Candidate Disease Gene Caregivers Caucasians Cause of Death Committee Members Communities Competence DNA Data Dementia Development Diagnosis Diagnostic Education Environmental Risk Factor Erythrocytes Ethical Issues Ethics Committees Ethnography Faith Healing Family Funding Future Genes Genetic Genetic Counseling Genetic Materials Genetic Research Genetic Variation Genomics Ghana Goals HDAC9 gene Health Health Personnel Heredity Hospital Administrators Human Incidental Findings Indigenous Individual Infrastructure Interleukin-6 Intervention Knowledge Lacunar Infarctions Linguistics Medicine Mental Depression Methods Modeling Molecular Nigeria Operating System Outcome Participant Pathway interactions Patients Perception Phenotype Plasma Population Preventive Process Questionnaires Religious Belief Reporting Research Research Activity Research Methodology Risk Factors Sampling Science Scientist Serum Services Stroke Surveys TRUST principles Therapeutic Trust United States National Institutes of Health base biobank blood fractionation brain research brain tissue career case control community engagement data resource disability ethical legal social implication genetic counselor genetic resource genetic risk factor genetic testing human tissue individual patient intervention program multimodality nervous system disorder novel novel strategies open data personalized medicine precision medicine prevent social stroke incidence stroke therapy tissue resource tool willingness

项目摘要

African Neurobiobank for Precision Stroke Medicine: ELSI Project: Project Summary Africa had, hitherto, been under-represented in the biobanking revolution. However, with the Human, Heredity and Health in Africa (H3Africa) initiative, biorepository science has been bolstered and biobanking - related activities are growing on the continent. In Sub - Saharan Africa (SSA), stroke incidence rates are rising, outcomes are worse, and relatively younger people are affected compared to Caucasian populations. Developing trans-omics approaches to predict, prevent, diagnose and treat stroke in the framework of current emphasis on precision/personalized medicine requires a clear understanding of the interplay of environmental and genomic risk factors. However, the ethical, legal, and social implications (ELSI) of the emerging neurobiobank and data resources are unclear in an emerging African scientific landscape with unique cultural, linguistic, and belief systems operating in a global ‘open science’ research community that increasingly supports the principles of trust, openness, storage, sharing and secondary use of biological materials. The overarching goal of the African Neurobiobank for Precision Stroke Medicine - Ethical, Legal, and Social Implications (ELSI) Project is to identify, examine and develop novel approaches to address ELSI issues of stroke biobanking in SSA. We intend to use a community-based participatory mixed methods research (CBPR) approach involving the various levels of the social ecological model to develop novel, context- relevant and culture-appropriate interventions. We will identify and examine relevant stroke biobanking ELSI issues and develop contextual intervention tools, platforms and practices to enhance community understanding and participation in stroke biobanking activities in a way that will facilitate enduring trust, equitable and fair utilization of biobanking resources for genetic and trans-omics research. The huge potential for neuro-biobanking in Africa to advance precision medicine applicable to stroke and other neurological disorders requires that important ELSI challenges be addressed while building sustainable research and regulatory capacity, careers and infrastructure in trans-omics and biobanking science

非洲精准中风医学神经生物库：ELSI 项目：项目摘要迄今为止，非洲在生物银行革命中的代表性不足。非洲遗传与健康 (H3Africa) 倡议、生物样本库科学和生物样本库得到加强在撒哈拉以南非洲 (SSA)，相关活动不断增多。上升，结果更糟，与白种人相比，相对年轻的人受到影响开发跨组学方法来预测、预防、诊断和治疗人群中的中风。当前强调精准/个性化医疗的框架需要清楚地了解然而，环境和基因组风险因素的相互作用。（ELSI）新兴的神经生物库和数据资源在新兴的非洲科学中尚不清楚具有独特文化、语言和信仰系统的景观，在全球“开放科学”研究中运作越来越支持信任、开放、存储、共享和二次利用原则的社区的生物材料。非洲神经生物库精准中风医学的总体目标 - 伦理、法律和社会 Implications (ELSI) 项目旨在识别、检查和开发新方法来解决 ELSI 问题我们打算在 SSA 中使用基于社区的参与性混合方法研究。（CBPR）方法涉及社会生态模型的各个层面，以开发新颖的、情境化的我们将确定并检查相关的中风生物样本库。 ELSI 发布并开发情境干预工具、平台和实践以增强社区以促进持久信任的方式理解和参与中风生物库活动，公平合理地利用生物样本库资源进行遗传和跨组学研究。非洲神经生物库在推进适用于中风和中风的精准医学方面具有巨大潜力其他神经系统疾病需要在构建时解决重要的 ELSI 挑战跨组学和生物样本库的可持续研究和监管能力、职业和基础设施科学