Born and raised in the Nigerian port city of Calabar, Abasi Ene-Obong remembers the exact moment that changed the direction of his life. Sitting in an introductory genetics class in medical school in 2003, he heard the professor say that African genetic samples comprised less than 3% of health databases in the world, creating a staggering vacuum in its ability to detect diseases and develop effective treatments for hundreds of million people.
Ene-Obong dropped her plan to become a doctor and instead traveled to London and later Los Angeles to study genetics, eventually earning a master’s degree in business with a focus on the life sciences industry at the Keck Graduate School in California and a Ph. .D. in Cancer Biology at the University of London.
With that, he launched 54gene in 2019 – named after the 54 countries in Africa – with the mission of redressing the stark racial imbalance in global health data. Headquartered in Lagos, Nigeria and Washington, D.C., the startup was on TIME’s 2019 list of best healthcare innovations.
Three years later, Ene-Obong, 37, says every part of the mission has proven hugely challenging, from raising venture capital to explaining to Big Pharma companies what 54gene is trying to do.
TIME caught up with Ene-Obong in Paris in June to discuss how his company intends to grow its business, make money and the process of winning over investors—and the health issues at stake.
This interview has been condensed and edited for clarity.
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What is the major problem you are trying to solve?
This is a problem that affects everyone all over the world. This may interest you : Pelumi is the lone Nigerian woman traveling her journey around the world. We are all facing new diseases, and even current diseases, like cancer and cardiovascular disease, and there is a need to find cures, with advances in bio-computing and AI and genomics.
Due to the maturity of different technology verticals, where most groups are starting to look at genetics, it can mean better diagnostics and safer and more effective drugs for diseases. In order for us to understand human biology, we cannot simply look at one group of people and assume that that group represents all people.
Right now, most genetic [data in] databases worldwide are Caucasian.
I see 54Gene’s website says only 3% of the world’s genetic databases come from African genes.
Actually it’s less than 3%, that’s something my company is trying to solve. This may interest you : Larry Ellison’s latest ambition: to create a national health database.
Africans represent the most diverse population on Earth, and what that means from a genetic standpoint is that many of what we call variants, which we need to understand, what we’re looking for, are just differences.
We are not only talking between Africa and Caucasian, but also between [for example] Nigerians and Cameroonians. Nigeria has more than 300 ethno-linguistic groups. I am mixed, Efik and Igbo, from Calabar, which was one of the biggest exporters of slaves.
Is this vacuum the fault of Big Pharma? Or is it African countries and governments that have simply not collected genetic data?
It’s everyone’s fault. It is both the fault of governments not prioritizing this, in many cases not even understanding the need for this. See the article : California first to cover health care for all immigrants. And it’s also Big Pharma’s fault.
Big Pharma has been opportunistic. They have gone to where the data is. It has not really been their job to produce the data. But because of their role in the ecosystem, they could be a voice to really advance this part of medicine.
I would put a lot of the blame on the lack of research and development in Africa. I want to make sure we are honest with ourselves. If we as Africans take the initiative and leadership in this, then others will come to the table.
There was a lot of talk during the pandemic about vaccine nationalism and about African governments being cut out of any fair distribution. Is this part of the same problem—that Western pharmaceutical companies are basically rapacious?
I’m not an apologist for the West, but I think we need to take more ownership and more action. You don’t have to match the West and put $2 billion into COVID, but you can put part of your budget. What we see is that they [African governments] did not even put it in.
Most of the health care in Africa has typically been funded by international donors. So African governments have not owned their own health care. They have lots of international donors who put in the money and dictate the agenda for how the funds are to be used. And then after decades and decades of that type of behavior, they have to unlearn and practice health care the way it should be practiced. Now we are starting to see it in certain governments.
What’s 54gene’s business model? And how do you partner with Big Pharma and other entities?
Our goal is not so much to create the data and get someone to buy it. That would not be responsible. We have to solve systemic problems where people come in [to Africa] to pay for samples, take the samples to their countries, all outside of Africa, do research and development outside, make the drugs and they never come back to Africa .
Right now, it takes 10 to 20 years for a drug launched in the US or France to reach Africa. Our business model is one that I believe is more inclusive and sustainable and has Africans in mind. Instead of building a data set and sending it out, we do the R&D work, sometimes in partnership with pharmaceutical companies, and the goal is that we will develop drugs or our data will be used to improve diagnostics for Africans and non-Africans.
How are your discussions going with big pharmaceutical companies?
We have ongoing work with a few pharmaceutical companies, both American and European.
When you talk to CEOs, is the work you’re doing something they understand, or is it a jump for them?
We have some who understand the need to do this type of work in Africa, like doing the [genetic] sequencing on the continent that we’ve built a sequence with in the lab so we don’t have to send them overseas, or do they clinical trials in Africa, so that African patients can also have access to innovative medicines very early.
So we’re seeing some of these companies get it. A majority of them do not understand it because the majority of them are still looking at old business models. They will have access to biological samples, to research and to make the decisions the boardroom decides.
Do you see health crises, or disease, where the outcome would have been different if Africa had this kind of genetic data?
With COVID-19, we know that we should have very robust surveillance systems. But to do that, you need the technical capacity and infrastructure. Africa lacks quite a lot of that. Again, that’s one of the things we’re solving. But you know, there are 54 countries and 1.4 billion people. We could do much, much better. And yes, it can help prevent some infectious diseases.
But people are not yet calling the increase in non-communicable diseases, and we see that in the hospitals: Increases in cancer cases and cases of cardiovascular disease.
Most public funding has prioritized infectious diseases such as HIV, tuberculosis, malaria. That’s where all the money has gone. This has led to a lack of development in this treatment of non-infectious diseases.
I don’t think this is really understood. Are you saying that basically, to treat diseases like cancer, heart disease and diabetes, Africans might require treatment specific to them?
In many cancers, with the mutational driving factors, most of our understanding is based on studies conducted in purely Caucasian populations. There was a study a year ago at the University of Chicago where they looked at breast cancer among Yoruba women who found that there was another gene mutation that caused a number of cases. The women got more serious breast cancer in their 40s. The drugs we’ve used to treat breast cancer, and the diagnosis, haven’t really looked for this mutation.
How hard has it been for you to raise funds for 54gene?
We raise funds mostly through venture capital funding, where we provide some equity for investments. Last year we had raised $45 million. We attract really good investors.
I see the company becoming a major player in health technology, measured by impact, rather than monetary value. The work we do will improve health outcomes in various countries in Africa, potentially covering hundreds of millions of lives. Globally, it will help inform how diseases are looked at, how new medicines are developed.
What is the potential impact on Black Americans?
The work is going to affect all people of African descent, whether they are in Africa, France, Britain or the United States, Brazil or the Caribbean. Many of them came from West Africa. We know that Nigeria contributed about 25% during the slave trade. And we are seeing more and more Nigerians traveling. As the world becomes more diverse, this will only become more important.
And then, of course, Nigeria will soon have more people than the U.S.
Yes. And Africa will soon have more people than Asia.
Big Pharma is notoriously focused on its bottom line. What do you say when they ask, ‘what is in it for us?’
There are quite a few things in it for them. One is that it will improve the pipeline of new products, not only products sold in Africa but also globally. We are not saying that your entire focus should be Africa. We say that you can include Africa in your focus and it can also significantly affect your bottom line.
I will give you an example. There is a drug used to treat bad cholesterol. Much of the insight for the work came from Africans because the drug targets a rare mutation that is more common in African populations. The discovery actually came from African populations in the United States.
At what moment did you suddenly think to yourself ‘this is what I should do?’
A lot of it was serendipity. I studied medicine as an undergraduate in Nigeria. I saw how genetics held the possibility of finding cures for rare diseases such as Huntington’s and sickle cell disease. I became very interested in doing genetics at that age. When I was doing my PhD, I realized that I wanted to run a business that was global but also provided a platform for Africans to contribute globally to research and healthcare.
In 2013 I moved to LA. I worked in the USA as a management consultant for pharmaceutical and biotech companies. The first sets of data that came out showed how diverse African populations were and the lack of that data. So I knew that with my educational background and my work experience and being born in Nigeria, I could solve some of this problem. And then I went back to start it.
Why does 54gene have a Washington base? What’s the purpose of that?
It is a global company. There are a great many people, Africans and non-Africans, who want to contribute to this mission because it affects us all as human beings. Right now we have over 100 people in Nigeria and almost 30 in the US.
We’re sitting here at VivaTech, a tech conference in Paris, and there’s been a lot of talk for a long time about the tech industry being overwhelmingly white. How has your experience been?
People solve what they know. It’s the same for investors: Investors invest in what they know and what they associate with. When you don’t have a diverse group of people in key decision-making positions in the tech industry, you’re not going to get them investing in black businesses or businesses from diverse communities because they want to put their money into what they understand.
We need more diversity in the VC offices. Investments are emotional, you need to have an emotional connection.
I’m assuming when you are dealing with VCs it is mostly white men, correct?
Yes. I have reason to believe that investing is emotional from my own personal experience. It could mean that I am connected to the problem, or connected to the person who is solving the problem.
One way we solve that problem is to have people from different ethnic groups and experiences. When I talk to American or British or European VCs about the market in Africa and how it’s growing, many of them have never been to Africa. Many of them still have the same images you see on TV, of someone begging, of donating to charity. One investor meeting I had, he started mentioning what he does for charity. When I started talking, he kept interjecting. Some of his colleagues became unwell. At one point I said I didn’t come here to be offended. I’d rather not take your money. He had to take a step back and his colleagues apologized.
So, for an investor like that, there is no sense that maybe there could be a return on the investment?
When he stopped talking and started listening, he ended up saying, ‘oh, this is actually cool.’ But it was an experience I don’t want to repeat.