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

Born and raised in the Nigerian port city of Calabar, Abasi Ene-Obong remembers the exact moment that changed his life’s direction. In 2003, Abasi Ene-Obong was sitting in an introduction to genetics class in medical school. He heard a professor tell him that African genetics made up less than 3 percent of all health data bases worldwide. This created a remarkable vacuum in Africa’s ability to diagnose diseases and provide effective treatment for millions.

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.

Ene Obong, 37 years old, said that every step of the mission was extremely difficult, starting with raising venture-capital funds, and ending up explaining to Big Pharma companies exactly what 54gene was trying to accomplish.

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.

The following interview was edited and condensed for clarity.

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Which is your biggest problem?

It is an issue that impacts everyone around the globe. 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.

The maturity of different tech verticals means that many groups now look at genetics. This could lead to better diagnosis and safer, more effective treatments for disease. 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.

The majority of genetic material is available right now. [data in]All databases 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 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, Cameroonians. Nigeria is home to more than 300 ethnic-linguistic groups. I am mixed from Calabar (one of the most important slave exporters) and Efik and Igbo.

Big Pharma or is this a result of the vacuum? Is it Africa’s governments or African countries who haven’t collected genetic data at all?

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 is a shrewd company. They’ve gone to where the data exists. Producing the data hasn’t been their responsibility. Their role in the system could allow them to be an influencer for improving this aspect of medicine.

A lot of blame would go to Africa’s lack of development and research. It is important to be honest with oneself. Africans can take initiative, and others will follow.

The pandemic was full of talk about vaccination nationalism, and how African governments were being excluded from 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]They didn’t put in any of that.

International donors have funded most of Africa’s health care. African countries have never owned their health care. Many international donors provide the funds and set the guidelines for the use of the funds. After decades or decades of this type of behaviour, they must learn to stop and practice healthcare the right way. Now we’re beginning to see that in certain governments.

What’s 54gene’s business model? What are the best ways to partner with Big Pharma or other entities?

We don’t want to sell data. This would be irresponsible. This would not be responsible. [to Africa]They pay for the samples and then take them to Africa to do research.

It takes between 10 and 20 years to bring a drug from the U.S. or France to Africa. My business model is inclusive, sustainable and focuses on Africans. 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.

What are the results of your negotiations with large pharmaceutical companies?

We are working with some European and U.S. pharmaceutical companies.

Where? you talk to CEOs, is the work you’re doing something they understand, or is it a jump for them?

There are some who understand that this kind of work is necessary in Africa. [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 can see some companies getting it. The majority don’t get it because they are stuck with old business models. They need access to biological samples so they can do research and take the necessary decisions.

Is there a health crisis or disease that you think would be different if Africa had such genetic data?

COVID-19 has made it clear that you need to have robust surveillance systems. You need the infrastructure and technical capabilities to achieve this. This is a major problem in Africa. That is something we are trying to fix. There are 54 nations and over 1.4 billion people. It could be done better. Yes, this could be a way to help avoid certain infections.

However, people have not yet spoken out about the increase in non-infectious disease. We are already seeing it in hospitals with rises in both cancer and heart attacks.

The priority of public funding has been to fight infectious diseases, such as HIV/AIDS, Tuberculosis, and Malaria. That’s where all the money has gone to. This has resulted in a dearth of innovation in non-infectious diseases care management.

I don’t think this is really understood. Is it possible that Africans would need treatment to combat diseases like heart disease, cancer, and diabetes?

A lot of cancers are caused by mutational drivers. Our understanding of these causes is limited to studies that were done only in Caucasians. One year ago, the University of Chicago conducted a study on breast cancers in Yoruba women. They found that there was an additional gene mutation. In their 40s, the women developed more serious breast cancer. The drugs we’ve been using to treat breast cancer, and the diagnosis, have not really looked for this mutation.

What was it like to raise money for 54gene

Venture capital financing is where we invest some of our equity. This allows us to raise money mainly through fundraising. Last year we raised $45million. We attract very high-quality investors.

The company will be a significant player in the space of health technology, as measured not by monetary value but rather its impact. Our work is helping improve the health of many African countries, potentially saving hundreds of millions. Globally, it’s going to help inform how diseases are looked at, how new drugs are developed.

Is there any potential effect on Black Americans from this?

All people from Africa will be affected by the work, regardless of where they live in the U.S. or Brazil. Many came from West Africa. According to estimates, Nigeria was responsible for 25% of the slave trade. We still witness more Nigerians fleeing. This will only get more significant as the world grows more diverse.

The USA will have fewer people in Nigeria than Nigeria.

Yes. Yes. And Africa is expected to have more people soon than Asia.

Big Pharma’s bottom line is a well-known fact. What do you say when they ask, ‘what is in it for us?’

There are quite a few benefits 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. It is possible to include Africa within your overall focus. However, this could impact your bottom line in a big way.

I’ll give you an example. Bad cholesterol can be treated with a medication. Because the drug is a rare variant, which is much more prevalent in Africans, a lot of the research was done by Africans. The U.S. African population was the one that discovered this drug.

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

Much of this was luck. As an undergraduate, I studied medicine in Nigeria. I saw how genetics held the possibility of finding cures for rare diseases like Huntington’s and sickle cell disease. Genetics is something that I was very drawn to from an early age. When I finished my Ph.D. I knew that I wanted to run a global company, which would also provide a platform for Africans who want to make a difference in research and health care.

2013. I moved from the UK to LA. As a manager consultant in pharmaceutical and biotech firms, I was based out of Los Angeles. One of the first data sets that came out was a stark reminder of how varied African people were and what data they had. Because of my Nigerian heritage and education, as well as my experience at work, I realized that I had the ability to help solve some of these problems. It was then that I decided to return and continue it.

What is the purpose of 54gene having a Washington headquarters? What’s the purpose of that?

It’s a global company. Many people are interested in this cause, both Africans as well as non-Africans. It affects us all. Currently, we have more than 100 Nigerians and almost 30 Americans.

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. Your experience has been great.

They solve problems with what they are familiar with. This is also true of investors. They invest in their knowledge and the connections they make. 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.

There must be more variety in VC [venture capitalist] offices. You must have an emotional connection to invest.

I’m assuming when you are dealing with VCs it is mostly white men, correct?

Yes. From my own experience, there is reason to believe that investing is emotionally driven. This could be a sign that I’m connected to the problem or the person solving it.

A diverse group of people with different experiences and ethnic backgrounds can help solve the problem. 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 have images of people begging and donating money to charities that they see in TV. In one meeting with investors, he mentioned what he did for charity. He kept interrupting me as I spoke. Some of his coworkers were becoming uncomfortable. At some point I said, I didn’t come here to be insulted. Your money is my preference. Then he took a moment to think and then his coworkers apologised.

An investor such as this would not believe that the return could possibly be substantial.

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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