H3Africa: a tipping point for a revolution in bioinformatics, genomics and health research in Africa

Adoga, Moses P; Fatumo, Segun; Agwale, Simon M

doi:10.1186/1751-0473-9-10

Cited by 76 publications

(55 citation statements)

References 3 publications

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“…There is also a need for genetic counselors to be included on translational research teams, as such enterprises as the Human Heredity and Health in Africa (H3Africa) initiative evolves (Adoga, Fatumo, & Agwale, 2014). Genetic counselors can assist with engaging various community stake-holders and with traversing ethical and practical challenges of genomics research (Zierhut & Austin, 2011).…”

Section: Research Recommendationsmentioning

confidence: 99%

Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana

Treadwell

Anie

Grant

et al. 2014

Journal of Genetic Counseling

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Sickle cell disease (SCD), sickle cell trait (SCT) and related conditions are highly prevalent in sub-Saharan Africa. Despite the public health implications, there is limited understanding of the unique needs regarding establishing and implementing extensive screening for newborns and appropriate family counseling. We sought to gain understanding of community attitudes and beliefs about SCD/SCT from counselors and potential counselors in Ghana; obtain their input about goals for counseling following newborn screening; and obtain guidance about developing effective counselor education. Five focus groups with 32 health care providers and health educators from 9 of 10 regions in Ghana were conducted by trained facilitators according to a structured protocol. Qualitative data were coded and categorized to reflect common themes. Saturation was achieved in themes related to genetics/inheritance; common complications of SCD; potential for stigmatization; marital strain; and emotional stress. Misconceptions about SCT as a form of SCD were prevalent as were cultural and spiritual beliefs about the causes of SCD/SCT. Potential positive aspects included affected children's academic achievement as compensation for physical limitations, and family cohesion. This data informed recommendations for content and structure of a counselor training program that was provided to the Ministry of Health in Ghana.

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Section: Research Recommendationsmentioning

confidence: 99%

Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana

Treadwell

Anie

Grant

et al. 2014

Journal of Genetic Counseling

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“…The establishment of these platforms will lead to the training of individuals on the respective techniques for using and maintaining such infrastructure. There is commendable training in bioinformatics that has been put in place (Adoga et al, 2014;Bishop et al, 2014). Indeed, this is one of the current success stories of H3Africa which, as a potential to revolutionalize genomics research, however, we hope for more.…”

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confidence: 99%

H3Africa and the African Life Sciences Ecosystem: Building Sustainable Innovation

Dandara

Huzair

Borda-Rodriguez

et al. 2014

OMICS: A Journal of Integrative Biology

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Interest in genomics research in African populations is experiencing exponential growth. This enthusiasm stems in part from the recognition that the genomic diversity of African populations is a window of opportunity for innovations in postgenomics medicine, ecology, and evolutionary biology. The recently launched H3Africa initiative, for example, captures the energy and momentum of this interest. This interdisciplinary socio-technical analysis highlights the challenges that have beset previous genomics research activities in Africa, and looking ahead, suggests constructive ways H3Africa and similar large scale science efforts could usefully chart a new era of genomics and life sciences research in Africa that is locally productive and globally competitive. As independent African scholars and social scientists, we propose that any serious global omics science effort, including H3Africa, aiming to build genomics research capacity and capability in Africa, needs to fund the establishment of biobanks and the genomic analyses platforms within Africa. Equally they need to prioritize community engagement and bioinformatics capability and the training of African scientists on these platforms. Historically, the financial, technological, and skills imbalance between Africa and developed countries has created exploitative frameworks of collaboration where African researchers have become merely facilitators of Western funded and conceived research agendas involving offshore expatriation of samples. Not surprisingly, very little funding was allocated to infrastructure and human capital development in the past. Moving forward, capacity building should materialize throughout the entire knowledge co-production trajectory: idea generation (e.g., brainstorming workshops for innovative hypotheses development by African scientists), data generation (e.g., genome sequencing), and high-throughput data analysis and contextualization. Additionally, building skills for political science scholarship that questions the unchecked assumptions of the innovation performers be they funders, scientists, and social scientists, would enable collective innovation that is truly sustainable, ethical, and robust.

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“…Although efforts to rectify this imbalance are now underway (102), they will take considerable time to bear fruit. Meanwhile, the negative impacts of this imbalance are evident from ethnic disparities in genomic medicine (103).…”

Section: Remaining Challengesmentioning

confidence: 99%

Living laboratory: whole‐genome sequencing as a learning healthcare enterprise

Angrist

Jamal

2014

Clinical Genetics

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With the proliferation of affordable large-scale human genomic data come profound and vexing questions about management of such data and their clinical uncertainty. These issues challenge the view that genomic research on human beings can (or should) be fully segregated from clinical genomics, either conceptually or practically. Here we argue that the historical sharp distinction between clinical care and research is especially problematic in the context of large-scale genomic sequencing of people with suspected genetic conditions. Core goals of both enterprises (e.g., understanding genotype-phenotype relationships; generating an evidence base for genomic medicine) are more likely to be realized at a population scale if both those ordering and those undergoing sequencing for clinical reasons are routinely and longitudinally studied. Rather than relying on expensive and lengthy randomized clinical trials and meta-analyses, we propose leveraging nascent clinical-research hybrid frameworks into a broader, more permanent instantiation of exploratory medical sequencing. Such an investment could enlighten stakeholders about the real-life challenges posed by whole-genome sequencing, e.g., establishing the clinical actionability of genetic variants, returning “off-target” results to families, developing effective service delivery models and monitoring long-term outcomes.

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H3Africa: a tipping point for a revolution in bioinformatics, genomics and health research in Africa

Cited by 76 publications

References 3 publications

Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana

Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana

H3Africa and the African Life Sciences Ecosystem: Building Sustainable Innovation

Living laboratory: whole‐genome sequencing as a learning healthcare enterprise

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