“Diversity brings better science to the table”

After growing up in Jamaica, serving in the military and working in regulatory compliance for clinical trials, Yusuf Henriques founded IndyGeneUS AI. His company is on a mission to redress disparities in healthcare by creating the world’s largest blockchain repository of Indigenous genomic data.

Pharma IQ spoke to Henriques about his drive to improve the diversity of clinical research and develop drugs for diseases where there is unmet need.

Pharma IQ: When did you first get into genomics?

Yusuf Henriques: My career in genomics began in 2012 when I started looking at biomarkers for post-traumatic stress disorder among veterans, because of the high suicide rates in this community. I realized what the power of genomics was and how this could be the future of precision medicine.

My twin daughters were then diagnosed with retinitis pigmentosa, a rare eye condition that causes loss of vision. It became my personal mission to figure out how to save them from losing their sight before they turned 30.

We went to some of the most prominent eye doctors including the Wilmer Eye Institute, part of Johns Hopkins Medicine. I first found out that there isn’t any clinical research for 14-year-old African American girls in the US.

We were left with having to figure this out ourselves, because the only remedial action was to take vitamin A which would have damaged their reproductive systems. That was not a decision I could make for them when they were just 14.

Pharma IQ: What led you to create IndyGeneUS AI?

YH: As we moved into the Covid-19 pandemic I saw that we [African Americans] were still not represented in clinical research. Seeing that some vaccines gave women side effects like blood clots triggered me, because this is what I faced eight years ago with my daughters. Here we are in the 21st  century and there is still an issue with getting more diversity in clinical trials.

In October 2020, the Massachusetts Institute of Technology (MIT) approached me to do a hackathon about racism in healthcare and that was the inception of IndyGeneUS AI.   

Pharma IQ: How did the Covid-19 pandemic influence awareness of this lack of diversity?

YH: The lack of diversity in clinical trials is not really new but during the pandemic we saw more consideration toward the issue. There also has not been any economic incentive for big companies to change their behavior.

I have seen businesses get a drug approved, and later approve a generic version. Then a big pharma company buys it and does not release it. It is a practice I noticed when I worked for the Food and Drug Administration (FDA) and it really concerned me.

Unfortunately, usually the ones driving innovation are individuals who have suffered tragedies like cancer. We all get stuck in the fundraising game and a lot of projects do not come to fruition.

What worries me is that big pharma has to feed shareholders and publicly traded companies have no incentive to drive this precision health equity the way it should be because it will cut into some of their bottom line.

Pharma IQ: Do you think more people are having these conversations now, after the events of the last two years?

YH: There are a few companies working on clinical trials and increasing participation on the African continent and there are a couple focusing on making sure there are more diverse cancer cells in research. These are few and far between however, and I do not feel there is competition because they usually feel enormous pressure to go back to the status quo.

It is never going to be a perfect world and I understand the bureaucracy as I have worked for the federal government. There are people who want to do good work but they are not at the top.

Diversity and inclusion bring better science to the table. We need a few champions willing to put profit aside and look at the fact that we have medicines that just do not do anything for certain populations. That is what really bothers me about precision medicine – who is it for exactly?  

Pharma IQ: What qualities do you think someone in a leadership role should have, particularly to lead diversity and inclusion efforts?

YH: There are multiple leadership styles and diversity has to be at the forefront. We need more women in boardrooms to add some level-headed thinking to groups who are traditionally white men.

Over the course of 45 years, participants in drug trials have been European white males 95 percent of the time. How do you expect to get any type of novel thinking if most of the individuals at the table are the same?

It is going to take some radical thinking to change this. That is what IndyGeneUS AI has to do. We are not saying we want to exclude people, but we know there is a gap in terms of women and minorities, so why are we collecting more samples from white males?

Pharma IQ: What is IndyGeneUS AI working on at the moment?

YS: You cannot do everything at once so we look at areas of impact where we can enter the market. We know we have to do the [patient] recruitment ourselves and that it needs to be focused around some of the health disparity areas we are aware of.

Immunology, cardiovascular disease and retinal conditions are the three areas we are really drilling in on. Hopefully later we can start to expand into other areas like diabetes and hypertension.

We are going to approach this a little differently. The huge exploitation that a lot of different ethnic groups have experienced has created a sense of distrust when it comes to the government and pharmaceutical companies, so I have to tread a fine line. In my work in the regulatory field I have always asked questions and this has helped me gain people’s trust.

This is truly where I am supposed to be because I am passionate about what I am doing for my daughters to get the therapies they need. I am sternly opposed to letting companies manufacture products that are unsafe for some populations. 

We know where the gaps are, we need to fill those in and it has to be intentional. Once we level the playing field then we can go out and recruit clinical trial candidates the way it should be done. Right now, however, we have 40 or 50 years of bias in medical research to catch up on.

Quick links

• How big pharma is focusing on diversity, equity and inclusion
• Meet Pharma IQ’s advisory board: Jennifer Jones-McMeans
• Why diversity in pharma leadership matters

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