Genes for Life: Biobanking for Genetic Research in Africa

Sarah, MayneElizabeth; CroxtonTalishiea,; AbimikuAlash'le,; JolobaMoses,; KyobeSamuel,; BeiswangerChristine, M; WideroffLouise,; GuyerMark,; TroyerJennifer,; KaderMukthar,

doi:10.1089/bio.2017.0007

Cited by 11 publications

(8 citation statements)

References 15 publications

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“…The interaction with H3Africa researchers and experts, through the H3Africa Consortium and two other regional H3Africa biorepositories, 25,26,27,28,29,30,31 has been invaluable in developing international policies and practices now in place at I-HAB. A number of collaborative manuscripts from the H3Africa Biorepository Working Group have highlighted several relevant concepts, including the role of genomics in African health, how biorepositories in Africa directly support African genomics research, the value of piloting biorepository operations across national boundaries and the complex governance of ‘sharing’ biospecimens for secondary research.…”

Section: Context Successes Challenges and Future Plansmentioning

confidence: 99%

“…A number of collaborative manuscripts from the H3Africa Biorepository Working Group have highlighted several relevant concepts, including the role of genomics in African health, how biorepositories in Africa directly support African genomics research, the value of piloting biorepository operations across national boundaries and the complex governance of ‘sharing’ biospecimens for secondary research. 28,29,30,31…”

Section: Context Successes Challenges and Future Plansmentioning

confidence: 99%

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Blueprint for building a biorepository in a resource-limited setting that follows international best practices

Abimiku

Croxton

Ozumba

et al. 2019

African Journal of Laboratory Medicine

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BackgroundGenetic diversity is abundant on the African continent. However, genomic research has been hampered by a lack of high quality and extensively annotated biospecimens and the necessary infrastructure to support such a technology-intensive effort.ObjectiveThe Institute of Human Virology Nigeria (IHVN) partnered with the H3Africa Consortium and the Coriell Institute for Medical Research to build an internationally recognised biorepository for the receipt, processing, storage and distribution of biospecimens for biomedical research. Here, the authors describe the procedures, challenges and results encountered.ResultsKey requirements for a high-quality biorepository were identified: (1) institutional support of infrastructure and services, (2) on-site trained staff with primary commitment to the biorepository, (3) reliance on best practices from globally recognised biorepository groups, (4) early implementation of a quality management system, (5) adoption of a laboratory information management system with demonstrated versatility in functions, (6) collaboration with external experts and sharing of experience through abstracts, newsletters, published manuscripts, and attendance at meetings and workshops, (7) strict adherence to local and national ethical standards and (8) a sustainability plan that is reviewed and updated annually.ConclusionUtilising published best practices of globally recognised experts in the biorepository field as a benchmark, IHVN expanded and reorganised its existing laboratory facility and staff to take on this new purpose.

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Section: Context Successes Challenges and Future Plansmentioning

confidence: 99%

Section: Context Successes Challenges and Future Plansmentioning

confidence: 99%

Blueprint for building a biorepository in a resource-limited setting that follows international best practices

Abimiku

Croxton

Ozumba

et al. 2019

African Journal of Laboratory Medicine

Self Cite

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“…Africa has historically been underrepresented in the biobanking revolution (Vaught, 2016a(Vaught, , 2016b. However, with the Human, Heredity and Health in Africa (H3Africa) Initiative biorepository science has been bolstered and biobankingrelated activities are growing on the continent Akinyemi et al, 2018;Mayne et al, 2017). Biobanking is a rapidly evolving field of biomedical science that involves the collection, processing, storage, and distribution of biospecimens along with creating necessary policies and procedures for each stage of the process.…”

Section: Introductionmentioning

confidence: 99%

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

Akinyemi

Jenkins

Nichols

et al. 2020

International Journal of Qualitative Methods

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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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“… 8 However, with the Human, Heredity, and Health in Africa (H3Africa) initiative, 9 biobank science has been bolstered, regional biobanks are springing up, and awareness about biobanks is growing on the continent. 10–12 …”

Section: Introductionmentioning

confidence: 99%

Biobanking in a Challenging African Environment: Unique Experience from the SIREN Project

Akinyemi

Akinwande

Diala

et al. 2018

Biopreservation and Biobanking

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Africa was previously insufficiently represented in the emerging discipline of biobanking despite commendable early efforts. However, with the Human, Heredity, and Health in Africa (H3Africa) initiative, biorepository science has been bolstered, regional biobanks are springing up, and awareness about biobanks is growing on the continent. The Stroke Investigative Research and Educational Network (SIREN) project is a transnational, multicenter, hospital and community-based study involving over 3000 cases and 3000 controls recruited from 16 sites in Ghana and Nigeria. SIREN aims to explore and unravel the genetic and environmental factors that interact to produce the peculiar phenotypic and clinical characteristics of stroke as seen in people of African ancestry and facilitate the development of new diagnostics, therapeutics, and preventative strategies. The aim of this article is to describe our experience with the development of the procedure for collection, processing, storage, and shipment of biological samples (blood, serum, plasma, buffy coat, red cell concentrates, and DNA) and brain imaging across coordinating and participating sites within the SIREN Project. The SIREN network was initiated in 2014 with support and funding from the H3Africa Initiative. The SIREN Biobank currently has 3015 brain images, 92,950 blood fractions (serum, plasma, red cell concentrates, and buffy coat) accrued from 8450 recruited subjects, and quantified and aliquoted good-quality DNA extracts from 6150 study subjects. This represents an invaluable resource for future research with expanding genomic and trans-omic technologies. This will facilitate the involvement of indigenous African samples in cutting-edge stroke genomics and trans-omics research. It is, however, critical to effectively engage African stroke patients and community members who have contributed precious biological materials to the SIREN Biobank to generate appropriate evidence base for dealing with ethical, legal, and social issues of privacy, autonomy, identifiability, biorights, governance issues, and public understanding of stroke biobanking in the context of unique African culture, language, and belief systems.

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Genes for Life: Biobanking for Genetic Research in Africa

Cited by 11 publications

References 15 publications

Blueprint for building a biorepository in a resource-limited setting that follows international best practices

Blueprint for building a biorepository in a resource-limited setting that follows international best practices

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

Biobanking in a Challenging African Environment: Unique Experience from the SIREN Project

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