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54gene CEO Abasi Ene-Obong wants to fix racial imbalance in health data

Born and raised in the port city of Calabar, Nigeria, Abasi Ene Obon remembers the exact moment that changed the course of his life. While sitting in an introductory genetics class at medical school in 2003, he learned that a professor had told him that African genetic samples were less than 3% of his global health database, and that he could detect diseases and develop effective treatments. I've heard you say that it creates an amazing vacuum in your abilities. Hundreds of millions of people.

Ene-Obong abandoned his plans to become a doctor and moved to London and later Los Angeles to study genetics, eventually taking up business at Keck Graduate School with a focus on the bioscience industry. obtained a master's degree in He completed his PhD in California. He holds a PhD in Cancer Biology from the University of London.

Thenhe launched his 54gene in his 2019. It is named after his 54 countries in Africa. It is on a mission to correct the sharp racial imbalance in global health data. Lagos, Nigeria and Washington D.C. C. The New York-based start-up was named TIME Magazine's Best Health Innovation

of 2019. It has proven to be very difficult to explain to big pharmaceutical companies how

TIME said in June that he met Ene-Obong in Paris and discussed how his company grew its business, made a profit, and the process of attracting investors, as well as the process at stake. We discussed the health issues we were having.

This interview has been condensed and edited for clarity.

(For the future of work, visit TIME.com/charter and Free Charter Newsletter)

What is the main problem you are trying to solve?

This is an issue that affects people all over the world. We are all facing new diseases, even current ones such as cancer and cardiovascular disease, and with advances in biocomputing, AI and genomics, we need to find a cure.

As the various tech industries mature, with most groups starting to turn their attention to genetics, this could mean better diagnostics and safer and more effective medicines for diseases. There is a nature. To understand human biology, we cannot just look at one group of people and assume that that group represents all people.

Currently, most genetic databases worldwide are of Caucasian origin.

54Gene's website states that only 3% of the world's gene database comes from African genes.

Less than 3% in practice. That's what my company is trying to solve.

Africans represent the most diverse population on earth, and what that means from a genetic point of view is that many of what we have to understand are called variants, What you're looking for is just a difference.

We are talking not only between Africans and Caucasians, but [for example] between Nigerians and Cameroonians. Nigeria has over 300 ethnic linguistic groups of hers. I am a mixed Efik and Igbo from Calabar where he was one of the largest exporters of slaves.

Is this vacuum cleaner the fault of Big Pharma? Or are African countries and governments simply not collecting genetic data?

Everyone's fault. This is also to blame for governments not prioritizing and often not understanding the need. And it's the big pharmaceutical companies' fault, too.

Big Pharma is opportunistic. They went where the data was. Creating data wasn't really their job. But its role within the ecosystem could make it the voice that really moves this part of healthcare forward.

I take a lot of responsibility for the lack of R&D in Africa. I want to make sure that I am honest with myself. If we Africans take the initiative and show leadership, others will come to the table.

During the pandemic, there has been much talk of vaccine nationalism and the exclusion of African governments from their fair distribution. Is this part of the same problem that Western pharmaceutical companies are basically greedy?

I am not trying to defend the West, but I think we need to act more proactively. He doesn't have to put $2 billion into COVID to match the West, but he can put some of the budget into it. What we see is that they [African governments] haven't even put it in.

Most healthcare in Africa is usually funded by international donors. As such, African governments do not own their own healthcare. They have many international donors who provide funding and set the agenda for how the funds should be used. So, after decades of such behavior, they must abandon their studies and practice medicine the way it should. Now we're starting to see that in certain governments.

What is 54gene's business model? And how do you partner with big pharmaceutical companies and other organizations?

Our goal is not to create data for someone to buy. it will not be held responsible. We want a systematic system in which people come [to Africa] to pay for samples, take samples out of Africa, do R&D abroad, make drugs, and never come back to Africa. The problem should be resolved.

Currently, it takes 10 to 20 years for a drug launched in the US or France to reach Africa. I believe our business model is more inclusive, sustainable and has Africans in mind. Rather than building and sending datasets, they are doing R&D work, sometimes working with pharmaceutical companies to develop medicines or use data to diagnose Africans and non-Africans. is intended to improve -African.

What's going on with the big pharmaceutical companies?

We are working with several pharmaceutical companies in both the US and Europe.

When you talk to CEOs, is the work you're doing something they understand or is it a leap forward for them?

Some see the need to do this kind of research in Africa. For example, doing [gene] sequencing on a continent. There is no need to send them abroad or conduct clinical trials in Africa to ensure that African patients have access to innovative medicines at a very early stage.

So some of these companies understand that. Most of them still see the old business model and don't understand. They want access to biological samples, conduct research, and make decisions that the board decides.

Do you see any health crises or diseases that would have had different outcomes had Africa had this kind of genetic data?

COVID-19 has shown us the need for a very robust surveillance system. But to do that, we need technology and infrastructure. Africa is sorely lacking. Again, that's one of the things we're trying to solve. But as you know, there are 54 countries and her 1.4 billion population. You can do much better. Yes, it may help prevent some infections.

But people are not yet pointing to an increase in non-communicable diseases, and we are seeing it in hospitals: increasing cases of cancer and cases of cardiovascular disease.

Most public funders prioritize infectious diseases such as HIV, tuberculosis and malaria. All the money went there. This has led to a lack of progress in care management for this noncommunicable disease.

I don't think this is really understood. Are you basically saying that Africans may need treatments specific to them to treat diseases such as cancer, heart disease, and diabetes?

In many cancers, there is a mutational factor, and most of our understanding is based on studies done in purely Caucasian populations. A year ago, a study at the University of Chicagolooked at breast cancer in Yoruba women and found that different genetic mutations caused many cases. A woman had more serious breast cancer in her 40s. None of the drugs or diagnostics we've used to treat breast cancer actually look for this mutation.

How difficult was it to raise funds for 54gene?

We raise funds primarily through venture capital funding and offer some equity for investment purposes. As of last year, we had raised $45 million for her. We attract very good investors.

I believe this company is on its way to becoming a major player in health technology, measured by influence rather than monetary value. The work we do is improving health across different African countries, potentially covering hundreds of millions of lives. Globally, it helps inform how diseases are viewed and how new drugs are being developed.

What are the possible consequences for black Americans?

This effort will affect all people of African descent, whether they are in Africa, France, the United Kingdom, the United States, Brazil or the Caribbean. Many of them came from West Africa. We know that Nigeria contributed about 25% to the slave trade. And we are still seeing many Nigerians leaving. As the world becomes more diverse, this will become increasingly important.

And of course, Nigeria's population will soon exceed that of the United States

Yes. And Africa will soon have more people than Asia.

Large pharmaceutical companies are notorious for their focus on profitability. What do you say when they ask, "What does it mean to us?" One is to improve our pipeline of new products that are sold globally as well as in Africa. We are not saying that all your focus should be on Africa. You say you can include Africa in your focus, but that could have a big impact on your bottom line as well.

Let me give you an example. There are drugs that treat bad cholesterol. Many of the insights in this study came from Africans. Because the drug targets a rare mutation that is more common in Africans. This discovery was actually from an African population in the United States.

At what moment did you suddenly think, "This is what I should do"?

Much of it was accidental. I was studying medicine as an undergraduate in Nigeria. I learned that genetics had the potential to find cures for rare diseases like Huntington's disease and sickle cell disease. I became very interested in genetics at that age. By the time I completed my PhD, I wanted to not only run a global company, but also provide a platform for Africans to contribute globally to research and medicine.

Moved to Los Angeles in 2013. I worked in the US as a management consultant for pharmaceutical and biotechnology companies. The first set of data released showed how diverse and scarce Africa's population is. So I knew that my education and work experience and being born in Nigeria would solve some of this problem. So I went back to start it.

Why is 54gene based in Washington? what is its purpose?

We are a global company. There are many Africans and non-Africans who want to contribute to this mission because it affects us all as human beings. Today, there are over 100 employees in Nigeria and nearly 30 of her employees in the United States.

We are at the technology conference VivaTech in Paris and the technology has been discussed for a long time. The industry is overwhelmingly white. how was your experience

People work out what they know. The same is true for investors. Investors invest in what they know and what they are connected to. If you don't have a diverse group of people in key decision-making positions in the tech industry, you can't get them to invest in black companies and companies from diverse communities. they understand

VC [venture capitalist] offices need more diversity. Investing is emotional and requires an emotional connection.

If you're dealing with VCs, you'd expect most of them to be white men.

Yes. From my own personal experience, I have reason to believe that investing is emotional. It can mean that I am connected to someone who is connected to a problem or solving a problem.

One way to solve this problem is to employ people from diverse ethnic groups and experiences. When I talk to US, UK or European VCs about the African market and its growth, many of them have never been to Africa. Many of them still have the same pictures you see on TV of someone begging, donating to charity. At one investor meeting I had, he started mentioning what he was doing for the charity. When I started talking, he kept interrupting me. Some of his colleagues became uncomfortable. At one 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 colleague apologized.

Therefore, there is no sense for such investors that there may be a return on investment.

When he stopped speaking and began to listen, he finally said:

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