Sustainability Working Group
Sustaining the Human Hereditary and Health in Africa (H3Africa) Consortium
Exploring Africa’s Genetic Diversity for Improved Health
The H3Africa Consortium is arguably Africa’s largest biomedical research network and currently has researchers from the majority of the 55 African countries. The H3Africa Consortium is funded jointly by The Welcome Trust (UK) and the National Institutes of Health (USA). One important feature of H3Africa is that the principal investigators are African scientists based in Africa. This has meant that the research projects tackle diseases that are most important to the health of Africans. H3Africa also strongly supports collaborations among scientists in Africa and outside. Accordingly, H3Africa scientists have reached out to scientists of African origin in the diaspora to collaborate with their colleagues in developing genomic research on the continent. There has also been a gratifying willingness of scientists in high income countries to collaborate in this endeavor. All of this means that the health of people in Africa will benefit from the rapid advances in genomic medicine that are currently taking place.
Currently H3Africa has more than 51 projects with over $170 million n funding, over 700 investigators and has recruited between 80000 to 100,000 research participants. The major areas of research are stroke, septicemia, cardiovascular disease, diabetes, sickle cell disease, cardiometabolic disorders, trypanosomiasis, kidney disease, nasopharyngeal and respiratory disease, tuberculosis, rheumatic heart disease, schizophrenia, deafness and inherited neurologic disorders. These research projects are underpinned by a bioinformatics network and biorepositories in Africa, reflecting the interest of the program in improving research infrastructure in Africa.
The H3Africa Consortium has already made a huge impact on ways in which the ethical, social and legal implications of genomic research in Africa can be addressed. For example, H3Africa has engaged national research ethics boards of most African countries where there are research projects. This has allowed the establishment of the important principles governing the autonomy of the research subject. Similarly, wide-spread engagement of the communities in which research is being undertaken has helped to refine the ethical principles of informed consent, issues of broad consent for secondary studies and data and biospecimen sharing to ensure that local needs and issues relating to genomic research are addressed.
TRAINING/CAPACITY DEVELOPMENT: Crucial to developing and sustaining genomic science in Africa is training and this is occurring at all the levels that allow the development of research. Although we just mention a few categories of vocational education and upgrades here – there is reference made under ‘Strategic Partners’ where we do need to be involved with the design of curricula at junior and high school level. H3Africa has led to the training of a cadre of people including:
- Clinical research nurses
- Laboratory technicians
- Data entry clerks
- Clinical research training for doctors
- Training in genomics and bioinformatics at the graduate and postgraduate level. Currently 200 individuals have been or are being trained for PhD (114), MSc (67) and BSc (17) and at least an equivalent number have already been trained.
- H3ABionet has trained 1420 people in 31 African Countries.
TECHNOLOGIES: In terms of developing technologies, H3Africa has developed an African-specific chip for use in genome-wide association studies (GWAS) that adequately captures common variation in the African population in ways in which previously available chips (based on data from non-African populations) do not. This is now available and being used to study the unique genetic basis of disease in Africa. In addition, the generous funding provided by both the NIH and WT has resulted in a significant number of specialized genomic laboratories – which were not there previously, being established on the continent. In this regard and most notable, perhaps is the extensive ‘Cape to Cairo’ H3A-bioinformatics (H3ABio) network, which in addition to acquiring the necessary hardware and software, has been responsible for the training of thousands of individuals on courses ranging from 3 days to PhD residency programs. Furthermore, the establishment of three Biobanks (in Abuja, Kampala and Johannesburg) on African soil for the safe and organized storage of biological material according to international standards, bodes extremely well for sustaining African genomic research. All of the above has been achieved in 5 short years – with funding from the NIH and WT.
The H3Africa Consortium has now entered its second cycle of 5 years of research activity – as a result of the funding agencies being adequately impressed with momentum and outputs of H3A researchers. As the program has a total lifespan of 10 years, its continuation will depend on funding sources beyond the WT and the NIH. In particular, it is critical to obtain a commitment from African governments to engage in support for the further development of genomic, and more general biomedical research in health in Africa.
The Sustainability Working Group of H3Africa fully recognizes the importance of sustainability in developing and strengthening our mission (of the expansion of genomic resources) towards the vision of improved human health on the continent. Our approach aims to take a leadership role by advancing the continental understanding of genomics and human health, developing strategic partnerships and implementing best practice to positively impact on human health while ensuring that our operations produce minimal negative outcomes on the environment and people.
STRATEGIC PARTNERS: An important issue in considering sustainability of H3A is an understanding of the most important African and non-African stakeholders who are likely to amplify the impact of the project – i.e. improving human health. The SWG has undertaken to identify and map potential partners and important stakeholders ranging from the network of academic institutions on the continent, including e.g. the World Bank African Centers of Excellence Programme, Continental Academies of Science, National and Regional Funding Agencies, strategic Ministers of Health, Science and Technology (and perhaps Higher Education), other sources of funding e.g. Gates Foundation and African Philanthropists.
Sustainability also means growing the timber we want from seedlings, by extending our value chain of influence e.g. involving learners at schools. As is clear in large swathes of developing regions of the world – there is a concerted effort being made at Universities to introduce biologists to bioinformaticians and computational scientists to biology, often at postgraduate level; with some resistance and suboptimal results. It is important for universities to influence the curriculum in junior and high schools in line with the emerging career opportunities of tomorrow, so that students get into University and are inclined to do Computational Sciences and Genomics from first year towards majors and postgraduate studies. The potential content of junior school curricula to introduce topics on ‘human origins in Africa’, ‘population migration and settlement’, ‘environmental impact and selection’, ‘basic concepts in family history and relevance to health’ – ‘basic concepts of genomics, DNA and inheritance’; ‘computational genomics’ using the latest age appropriate informatics tools to engage children ‘in their element’ is an opportunity we should not miss out on. We should attempt to attract both left-brained and ‘right brained’ children into the world of genomics – in order to embed ‘genomics and human health’ as a solid long term programme e.g. ‘from the womb to the grave’ on our continent. The point that is being made is that this is not just a competency of the Department of Health; it is also that of the Department of Science and Technology, and perhaps more importantly, the Department of Basi and Higher Education (using South African nomenclature).
How do we envision a sustainable H3Africa Consortium?
H3Africa provides a forum for trans-continental biomedical and genomic research initiatives that aim to provide significant insights into improved health for Africans. Through its combined resources, generated by non-communicable and infectious disease research, H3Africa has the potential to explore the rich biological, cultural and behavioral diversity across the continent.
H3Africa is premised on the joint commitment of its members to share resources, including data and samples, to maximize knowledge generation and the translation of discoveries in clinical settings. Access to resources is managed through a DBAC with specific terms of reference.
Members of the Consortium are held accountable to ethical principles of beneficence, non-maleficence, respect for autonomy and justice, through its policies and guidelines.
The governance structure includes an elected H3Africa Steering Committee, independent advisory committee and a DBAC. A selection of strategic working groups assure a participative cohesive forum to address cross-consortium initiatives such as the development of H3Africa policies and guidelines, education and training, phenotype and data harmonization, and joint analyses and publications. A formal membership structure ensures that there is value to being a member of H3Africa.
What will remain at the end of the funding period?
- H3Africa Coordinating Center
- H3Africa Bionet
- Data and Biospecimen Access Committee
- Policies and Guidelines
How will membership of the H3Africa Consortium be determined?
H3Africa Consortium members are held accountable the high research standards and an inclusive philosophy to work together to raise the quality of genomics research in Africa.
- Research groups actively supported under an H3Africa funding opportunity
- Research groups previously supported by H3African funding and who continue to work in the same area
- Research groups doing genomic research in Africa Research groups with analytical capability in genomic research who focus on African population research
Members commit to the following:
- Adhering to the policies and guidelines of the H3Africa Consortium.
- Sharing data and biospecimens
- Acknowledging the H3Africa consortium in an appropriate manner
- Protect the privacy and dignity of the research participants
- Ensuring that the name and reputation of H3Africa is not brought into disrepute
Benefits of membership:
- Belonging to a pan-African genomics research Consortium
- Access to samples, data and partnerships or collaborations within Africa
- Leverage on the resources of the Consortium to enhance grant applications and provide confidence in the proposed studies
- Access to training courses and workshops to enhance skills and capabilities