TY - JOUR
T1 - Unraveling the Ethical, Legal, and Social Implications of Neurobiobanking and Stroke Genomic Research in Africa
T2 - A Study Protocol of the African Neurobiobank for Precision Stroke Medicine ELSI Project
AU - Akinyemi, Rufus O.
AU - Jenkins, Carolyn
AU - Nichols, Michelle
AU - Singh, Arti
AU - Wahab, Kolawole
AU - Akpalu, Albert
AU - Sarfo, Fred S.
AU - Owolabi, Lukman F.
AU - Obiako, Reginald
AU - Akinyemi, Joshua
AU - Ojebuyi, Babatunde
AU - Adigun, Muyiwa
AU - Musbahu, Rabiu
AU - Bello, Abiodun
AU - Titiloye, Musibau
AU - Calys-Tagoe, Benedict
AU - Ogunronbi, Mayowa
AU - Uvere, Ezinne
AU - Laryea, Ruth
AU - Fakunle, Adekunle
AU - Adeleye, Osi
AU - Olorunsogbon, Olorunyomi
AU - Ojo, Adebayo
AU - Adesina, Deborah
AU - Mensah, Nathaniel
AU - Oguike, Wisdom
AU - Coleman, Nathaniel
AU - Mande, Aliyu
AU - Uthman, Muhammed
AU - Kalaria, Rajesh N.
AU - Jegede, Ayodele
AU - Owolabi, Mayowa
AU - Ovbiagele, Bruce
AU - Arulogun, Oyedunni
N1 - Publisher Copyright:
© The Author(s) 2020.
PY - 2020
Y1 - 2020
N2 - 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.
AB - 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.
KW - Africa
KW - ELSI
KW - biobanking
KW - ethical
KW - legal
KW - neurobiobanking
KW - precision medicine
KW - social issues
KW - stroke; genomics
UR - http://www.scopus.com/inward/record.url?scp=85086774558&partnerID=8YFLogxK
U2 - 10.1177/1609406920923194
DO - 10.1177/1609406920923194
M3 - Article
AN - SCOPUS:85086774558
SN - 1609-4069
VL - 19
JO - International Journal of Qualitative Methods
JF - International Journal of Qualitative Methods
ER -