Western institutions remain the main champions and may eventually be forced to take ownership of data if African apathy continues. A dearth of political will, scarce funding for research and development, limited local supporting infrastructure, and lack of human resources are impeding progress.
The scientists and data produced by H3Africa, may become dispersed after the programme concludes in June 2022 if there are no new sponsors willing to maintain the current format.
In fact, the issue is now no longer about how African genomics is important or its huge economic potential but rather to ensure that an inequity is not fixed via another inequity
Considering the huge economic potential of African genomics, it would be more than a tad surprising if that happens. At the moment, the loci of programmes like H3Africa are on the continent. Qualified African institutions and scientists receive funding and support to pursue their own research interests and then share the research findings for global benefit. For the system to endure, however, African governments and investors must be similarly enthused.
But of course, there are private ventures like 54gene, which are already reaping profits. For-profit ventures will not suffice, however. Research by academia supported by governments and global pharma will be required to complement such ventures. Incidentally, the NIH launched the Harnessing Data Science for Health Discovery and Innovation in Africa in October 2021, a $74.5 million initiative (LeMieux, 2021). Besides, global genetics research firms like Illumina and Regeneron are increasingly interested in African genomics and its potential for advancing the medical sciences, owing in part to initiatives such as H3Africa (LeMieux, 2021).
In fact, the issue is now no longer about how African genomics is important or its huge economic potential but rather to ensure that an inequity is not fixed via another inequity. The history of colonial exploitation and the business model that sustained it should not be repeated with African genomics research. To ensure that this is not the case, a great deal of investment would be required from the firms and governments of African countries and their international partners.
The economic potential of African genomics is huge
The real potential of genomics lies in pooling genetic and clinical data from across the world. The Covid-19 pandemic has accelerated progress in genome sequencing, as data from every corner of the globe has been sought to effectively check the spread of the coronavirus and manage future pandemics. Hitherto, however, so-called whole genome sequencing (WGS) required for such surveillance was expensive and capacity was both scarce and sparse. Thus it was available only in a few selected centres around the world.
This is no longer the case. Based on work by scientists from 16 countries led by Neil Hall at the Earlham Institute, the so-called 10,000 Salmonella genomes research consortium (10KSG), which successfully “sequenced and analysed 10,000 Salmonella genomes from Africa and Latin America,” efficient large-scale genome sequencing is now accessible.
Furthermore, mechanisms have to be put in place by governments and other stakeholders to enable easier acquisition of genomic data from clinical records, which should also ensure a good balance is struck with legacy ethical and cultural considerations. There are also more basic constraints; the huge cost of data storage, for instance, which could range from as little as 2EB to as much as 40EB annually, that is, about as much as all of YouTube’s video data.
Challenging as it is, there is a “real need to link clinical records to genomic data”; a federated data system that enables the sharing of data across borders with security, privacy, and interoperability, argues the World Economic Forum.
Apart from pre-existing power and telecommunications infrastructure constraints African genomic data would ultimately reside in foreign-owned local servers without investment by African governments and firms in the continent’s cloud storage infrastructure. A global consortium that allows for the seamless sharing and analysis of genomic data from clinical records will ultimately leave Africa at the mercy of developed countries yet again. There is already a recognition of this weakness by the likes of China, which is not only building the Africa CDC headquarters in Addis Ababa but has its firms like Huawei building data centres across the continent, most recently in Senegal.
The worry about potential Western exploitation is not without precedent. According to an investigative report published by The Telegraph in February 2019, Ebola blood samples from West Africa that were supposedly destroyed ended up in Europe and America. An international protocol to prevent such mishaps was put in place in 2014. The so-called Nagoya Protocol on Access to Genetic Resources and the Fair and Equitable Sharing of Benefits Arising from their Utilization or “Nagoya Protocol” in short, is worth rallying around. It has thus far not enjoyed universal support.
To the global pharmaceutical industry a person’s genetic data is worth $1,900.
When combined with medical records its value can go up to as much as $6,400 each, according to research on the United Kingdom’s National Health Service (NHS) by EY, a global consulting firm. The indicative market value of the integrated genetic and clinical data of the estimated 55 million patient records in the UK NHS database could be as much as $6.4 billion per annum, with benefits of about $5.8 billion to patients yearly, EY estimates.
Read also: The economic potential of African genomics (2)
An integrated African genetics and clinical records database will likely be more valuable as it will harbour secrets to many potentially ground-breaking innovations in medicine. In fact, we could be talking of indicative market values to the tune of $17.5 billion per annum for a country the size of Nigeria. For this to be realised, however, the identified myriad challenges must first be overcome.
An edited version was first published by the NTU-SBF Centre for African Studies at Nanyang Business School, Singapore. References, figures and tables are in the original article. See link viz. https://www.ntu.edu.sg/cas/news-events/news/details/the-economic-potential-of-african-genomics
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