54gene’s CEO Wants to Fix Health Data’s Racial Imbalance

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Born and raised in the Nigerian port city of Calabar, Abasi Ene-Obong remembers the exact moment that changed his life’s direction. Sitting in an introductory genetics class at medical school, in 2003, he heard the professor say that African genetic samples comprised less than 3% of health data bases in the world, creating a stunning vacuum in its ability to detect diseases and develop effective treatments for hundreds of millions of people.

Ene-Obong ditched his plan to become a doctor, and instead left for London, and later Los Angeles, to study genetics, finally earning a Master’s degree in business focusing on the bioscience 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 for the 54 countries in Africa—with the mission to right the sharp racial imbalance in global health data. Headquartered in Lagos, Nigeria, and Washington, D.C., the startup was on TIME’s 2019 list of best health innovations.

Three years on, Ene-Obong, 37, says every part of the mission has proved hugely challenging, from raising venture-captial funds to explaining to Big Pharma companies what 54gene is trying to do.

TIME met 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 problems 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 across the world. We’re all faced with new diseases, and even current diseases, like cancers and cardiovascular diseases, and there’s a need to find cures, with advancements in bio-computing, and AI and genomics.

Because of the maturity of various tech verticals, where most groups are beginning to look at genetics, that could mean better diagnostics, and safer and more effective drugs for diseases. In order for us to understand human biology, we can’t just look at one group of people and assume that group represents all people.

Right now most of the genetic [data in] databases across the world is 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 is something my company is trying to solve.

Africans represent the most diverse population on Earth, and what that means from a genetic standpoint is that lots of what we call variants that we need to understand, what we’re looking for is just differences.

We’re 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 everybody’s fault. It’s both the fault of governments not prioritizing this, in many cases, not even understanding the need for this. And it’s also the fault of Big Pharma.

Big Pharma has been opportunistic. They’ve gone to where the data exists. 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 quite a lot of the fault on the lack of research and development in Africa. I want to make sure we are being honest with ourselves. If we as Africans take the initiative and the 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 a portion of your budget. What we’re seeing is that they [African governments] were not even putting in that.

Most of 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 funds should be used. And so after decades and decades of that type of behavior, they have to unlearn, and practice healthcare in the way it should be practiced. Now we’re beginning to see that 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 have anybody buy it. That would not be responsible. We have to fix systemic issues, where people come in [to Africa] to pay for samples, take the samples to their countries, all outside Africa, do the 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 U.S., or France, to come to Africa. Our business model is one that I believe is more inclusive and sustainable, and has Africans in mind. Rather than building a data set and sending it out, we are doing the R&D work, sometimes in partnership with pharma companies, the goal being 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 do have works in progress with a few pharmaceutical companies, both U.S. 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 that understand the need to do this type of work in Africa, such as doing the [genetic] sequencing on the continent, with which we’ve built a sequence in the lab so that we don’t have to send them abroad, or doing the clinical trials in Africa such that African patients can also get access to innovative drugs very early on.

So we see that some of these companies get it. A majority of them do not get it, because the majority of them are still looking at old business models. They want access to biological samples, to do the research and make whatever 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 we should have very robust surveillance systems. But in order to do that, you need to have the technical capability and infrastructure. Africa lacks quite a lot of that. Again, that is one of the things we are solving. But you know, there are 54 countries and 1.4 billion people. We could do much, much better. And yes, it could help prevent some infectious diseases.

But people are not yet calling out the rise in non-infectious diseases, and we are seeing that in hospitals: Rises in cancer cases and cardiovascular disease cases.

Most public funders have prioritized infectious diseases like HIV, tuberculosis, malaria. That’s where all the money has gone to. That has led to a lack of development in this non-infectious disease care management.

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 a lot of cancers, with the mutational drivers, most of our understanding is based on studies done in purely Caucasian populations. There was a study a year ago at the University of Chicago where they looked at breast cancers amongst Yoruba women, which found there was a different gene mutation causing a number of cases. The women got more severe breast cancer in their 40s. The drugs we’ve been using to treat breast cancer, and the diagnosis, have not 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 give some equity, for investments. As of last year, we had raised $45 million. We are attracting very good investors.

I see the company becoming a major player in the health tech space, measured by impact, rather than the monetary value. The work we are doing is going to improve health outcomes in various countries in Africa, covering hundreds of millions of lives, potentially. Globally, it’s going to help inform how diseases are looked at, how new drugs are developed.

What is the potential impact on Black Americans?

The work is going to impact all people of African origin, whether they are in Africa, France, the U.K., or the U.S., Brazil, or the Caribbeans. Many of them came from West Africa. We know Nigeria contributed about 25% during the slave trade. And we still see more Nigerians leaving. As the world gets more diverse, this is only going to get even 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?’

Quite a few things are in it for them. One is it’s going to improve the pipeline of new products, not just products sold in Africa, but also globally. We’re not saying that your entire focus should be Africa. We are saying you can include Africa in your focus, and it could also impact your bottom line significantly.

I’ll give you an example. There is a drug used to treat bad cholesterol. A lot 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 came from African populations in the U.S., actually.

At what moment did you suddenly think to yourself ‘this is what I should do?’

A lot of it was serendipity. I was studying medicine as an undergraduate in Nigeria. I saw how genetics held the possibility of finding cures for rare diseases like Huntington’s and sickle cell disease. I got very interested at that age in doing genetics. By the time I was doing my Ph.D., I realized that I wanted to be running a company 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 U.S. as a management consultant for pharmaceutical and biotech companies. The first sets of data coming 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, that I could solve some of this problem. And so I went back to start it.

Why does 54gene have a Washington base? What’s the purpose of that?

It’s a global company. There are a lot of people, Africans and non-Africans, who want to contribute to this mission because it affects all of us as human beings. Right now we have over 100 people in Nigeria, and nearly 30 in the U.S.

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 is the same for investors: Investors invest in what they know, and what they connect to. When you don’t have a diverse group of people in key decision-making positions in the tech industry, you are not going to get them to invest in Black businesses, or businesses from diverse communities, because they want to put their money in what they understand.

We need to have more diversity in the VC [venture capitalist] offices. Investments are emotional, you have 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 investment is emotional, from my own personal experience. It could mean I am connected to the problem, or connected to the person who is solving the problem.

One way we solve that problem is having people who are of diverse ethnic groups and experiences. When I talk to U.S. or U.K. 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 pictures that you see on TV, of somebody begging, of donating to charity. One investor meeting I had, he started mentioning what he does for charities. As I started talking, he was interjecting all the time. Some of his colleagues were getting uncomfortable. At some point I said, I didn’t come here to be insulted. I would 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 this is actually cool.’ But that was an experience I do not want to repeat.

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