Unraveling the Ethical, Legal, and Social Implications of Neurobiobanking and Stroke Genomic Research in Africa: A Study Protocol of the African Neurobiobank for Precision Stroke Medicine ELSI Project.
Unraveling the Ethical, Legal, and Social Implications of Neurobiobanking and Stroke Genomic Research in Africa: A Study Protocol of the African Neurobiobank for Precision Stroke Medicine ELSI Project.
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DOI：
10.1177/1609406920923194
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发表时间：
2020-01
影响因子：
5.4
通讯作者：
Arulogun O
中科院分区：
文献类型：
--
作者：
Akinyemi RO;Jenkins C;Nichols M;Singh A;Wahab K;Akpalu A;Sarfo FS;Owolabi LF;Obiako R;Akinyemi J;Ojebuyi B;Adigun M;Musbahu R;Bello A;Titiloye M;Calys-Tagoe B;Ogunronbi M;Uvere E;Laryea R;Fakunle A;Adeleye O;Olorunsogbon O;Ojo A;Adesina D;Mensah N;Oguike W;Coleman N;Mande A;Uthman M;Kalaria RN;Jegede A;Owolabi M;Ovbiagele B;Arulogun O
新兴的神经生物库和数据资源的伦理，法律的和社会影响（ELSI）在非洲科学景观与独特的文化，语言和信仰体系尚不清楚。非洲神经生物库精准中风医学ELSI项目的总体目标是确定，检查和开发新的方法来解决撒哈拉以南非洲（SSA）生物库和中风基因组研究的ELSI问题。为了实现这一目标，我们将（1）探索与生物库和卒中基因组研究相关的影响ELSI问题的知识、态度、观念、障碍和促进因素;（2）利用获得的信息制定一个专注于ELSI问题的社区干预计划;和（3）建立与基因组学和生物库相关的能力和职业，以有效地参与客户/社区，同时加强监管，治理，和实施能力在生物库科学在SSA。将采用以社区为基础的参与性研究和混合方法，侧重于社会生态模式的各个层面，以查明和审查有关的环境和社会影响指数问题。将开发相关干预工具、平台和实践，以增强社区对卒中生物库和基因组学研究活动的理解和参与，同时促进持久的信任，以及公平和公正地利用生物库资源进行遗传和转基因组学研究。将为早期职业研究人员实施与遗传咨询和生物库相关的并行能力建设计划。非洲神经生物库和基因组学研究在推进适用于中风和其他神经系统疾病的精准医学方面的巨大潜力，需要解决ELSI挑战，同时在trans-omics和生物库科学方面建立可持续的研究，职业和监管能力。
The ethical, legal, and social implications (ELSI) of emerging neurobiobanks and data resources are unclear in an African scientific landscape with unique cultural, linguistic, and belief systems. The overarching goal of the African Neurobiobank for Precision Stroke Medicine—ELSI Project is to identify, examine, and develop novel approaches to address ELSI issues of biobanking and stroke genomic research in sub-Saharan Africa (SSA). To accomplish the goal we will (1) explore knowledge, attitude, perceptions, barriers, and facilitators influencing ELSI issues related to biobanking and stroke genomic research; (2) use information obtained to craft a community intervention program focused on ELSI issues; and (3) build capacity and careers related to genomics and biobanking for effective client/community engagement while enhancing regulatory, governance, and implementation competences in biobanking science in SSA. A community-based participatory research and mixed-methodological approach, focused on various levels of the social ecological model, will be used to identify and examine relevant ELSI issues. Contextual intervention tools, platforms, and practices will be developed to enhance community understanding and participation in stroke biobanking and genomics research activities while facilitating enduring trust, and equitable and fair utilization of biobanking resources for genetic and trans-omics research. A concurrent capacity building program related to genetic counseling and biobanking will be implemented for early career researchers. The huge potential for neurobiobanking and genomics research in Africa to advance precision medicine applicable to stroke and other neurological disorders requires addressing ELSI challenges while building sustainable research, career, and regulatory capacities in trans-omics and biobanking science.
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影响因子：
6.7
作者：
Akinyemi, Rufus O.;Sarfo, Fred S.;Ovbiagele, Bruce
通讯作者：
Ovbiagele, Bruce
影响因子：
5.7
作者：
Akpalu A;Sarfo FS;Ovbiagele B;Akinyemi R;Gebregziabher M;Obiako R;Owolabi L;Sagoe K;Jenkins C;Arulogun O;Adamu S;Appiah LT;Adadey MA;Agyekum F;Quansah JA;Mensah YB;Adeoye AM;Singh A;Tosin AO;Ohifemen O;Sani AA;Tabi-Ajayi E;Phillip IO;Isah SY;Tabari NA;Mande A;Agunloye AM;Ogbole GI;Akinyemi JO;Akpa OM;Laryea R;Melikam SE;Adinku D;Uvere E;Burkett NS;Adekunle GF;Kehinde SI;Azuh PC;Dambatta AH;Ishaq NA;Arnett D;Tiwari HK;Lackland D;Owolabi M;SIREN as part of the H3Africa Consortium
通讯作者：
SIREN as part of the H3Africa Consortium
影响因子：
2.7
作者：
de Vries, Jantina;Munung, Syntia Nchangwi;Tindana, Paulina
通讯作者：
Tindana, Paulina
影响因子：
5.2
作者：
Harden SM;Smith ML;Ory MG;Smith-Ray RL;Estabrooks PA;Glasgow RE
通讯作者：
Glasgow RE
影响因子：
2.7
作者：
Moodley K;Sibanda N;February K;Rossouw T
通讯作者：
Rossouw T