‘The field of human ancestry is rife with racism': pioneering project to build cancer database in Africa

The Guardian

26-03-2025

When Yaw Bediako lost his father to liver cancer, it set the Ghanaian immunologist on a journey to know more about the disease. He quickly realised the burden of cancer in Africa was much greater than he had thought – accounting for about 700,000 deaths every year – and that very few scientific papers about the disease on the continent were available.
'I realised that cancer is this huge disease in Africa that doesn't really get much research attention,' he says. 'But it's not just an African problem, it's global … It stands out as a problem that does not distinguish between geographies or socioeconomic class.'
Fifteen years after his father's death, Bediako is leading Yemaachi Biotech, a company he co-founded in 2020 in Ghana's capital, Accra, dedicated to building the largest, and possibly the first, database of genetic and clinical information in Africa from up to 7,500 cancer patients.
Its employees are young, most in their mid- to late-20s, and drawn from across the continent. More than half of the workforce is female.
The African Cancer Atlas will provide insights into cancer in African populations, invaluable for drug discoveries and treatment research, while helping to address disparities in cancer outcomes. It will be available for free to African researchers. Last month, the Swiss pharmaceutical multinational Roche announced it would back the project with funding and technical support.
The initiative will include a subset of data on children. An estimated 85% of paediatric cancers occur in low- and middle-income countries (LMICs) with survival rates estimated to be 30%, compared with 80% among children living in high-income countries.
Less than 2% of human genomes (which contain all of people's genetic information) analysed so far have been those of Africans, despite the continent comprising 17% of the world's population and possessing the most diverse genomes.
This disparity has hindered global understanding of cancer and its treatment, particularly for African populations.
Dr Patrick Kafui Akakpo, a pathologist at the University of Cape Coast teaching hospital who has a particular interest in breast cancer, is only too aware of this. In Ghana, women are susceptible to triple-negative breast cancer, a fast-growing and aggressive type that is hard to treat.
'We are aware that the African genome is not as well-studied as the European one,' he says. 'We have very few clinical trials going on and most of them are in infectious diseases and not cancer. It means that we don't have the experience or data to support the efficacy of drugs in our people.'
Bediako, a Ghanaian-Briton who studied in the US, believes the paucity of Africa's genomic data is partly down to structural inequalities.
'The field of human ancestry is rife with racism and with discrimination,' he says. 'You cannot overlook those as possible reasons why certain groups have been understudied.'
With so little data for non-European populations, Bediako adds, drugs have been developed that are not as effective for all people. But the problem transcends ethnicity, he says.
'You can find Europeans whose genomes will have certain traits that are more common in Africans,' he points out. 'So by being more inclusive in the genomes we study, we will have the opportunity to develop solutions.'
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Pharmaceutical companies are keen to see scientific research into genetic diversity in Africa. In 2021, GSK and Novartis announced they would collaborate on research exploring links between genetic diversity and African patients' response to malaria and tuberculosis drugs. And in 2023, four pharma companies donated $20m (£15m) to sequence 500,000 African and African American genomes.
Bediako is looking to them to fund more of the expensive work at Yemaachi Biotech, albeit with some trepidation.
'I'm not naive,' he says. 'We all know the stories of when things have not gone well or have not been in the best interest of people, but I also believe there are good people who work in big pharma companies and we would not have any drugs if it weren't for them.'
At present, funding is mostly from investors – in and outside Africa – as well as grants and philanthropy. Bediako's aim for Yemaachi Biotech is to be able to fund more of the work through commercial partnerships.
That brings with it ethical issues around the use of patients' data for financial gain. Aida Manu, the company's director of operations, says: 'We realise we have to do something. It's very complicated. The participants are vulnerable because they have an illness we are interested in and many are vulnerable economically. It's still early days but we make it clear we are looking to find a way to have this community benefit from the research coming out.'
The team has to work hard to convince foreign investors. 'We call it the Africa tax, or the black tax,' says David Hutchful, a co-founder of the company and its chief technology officer. 'It's not overt but it comes through when investors ask certain questions which sometimes show they have little working knowledge of Africa.' He says, as an example, that people have asked him whether there's enough electricity to power the freezers for samples.
Despite the challenges, the team is excited both about potential drug breakthroughs and breaking stereotypes. 'My hope with this company beyond all the science and work we do is to portray the Africa I know now exists, that I love and want to contribute to,' says Bediako.
'My dream is one day there will be drugs used to treat cancer around the world that will be derived from knowledge that was generated from this continent – and that shows Africa has something to offer the world.'