IndyGeneUS AI Is Bringing Genomic Medicine to Underrepresented Populations
Founder Yusuf Henriques and Chief Scientific Officer Bradford Wilson, PhD, have combined their experience at the FDA, in the military, and in academia to drive the development of therapeutics that are effective in underrepresented populations.
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Challenge
While COVID-19 was devastating across the globe, it was particularly damaging for communities of color. African American, Latino, and Native American populations experienced disproportionately higher rates of infection and death than their European-American counterparts during the pandemic. This was in part due to underlying inequities in healthcare and increased exposure risks because of social and economic factors. While these disparities existed before COVID, the pandemic exacerbated them and made it painfully clear that healthcare reform was no longer a political debate, but a global necessity.
One of the roots of these health disparities lies in how and from whom data is gathered for research and new drug development. Historically DNA data banks, for genomics research, have overwhelmingly been made up of Caucasian males, which means that many populations from across the globe lack representation in genomics research. Currently, 87% of genomic data is of white, mostly male, origin. This means that the drugs and treatments being developed from this data do not have accurate biomarkers for the diverse patient population they are meant to treat.
Clinical trials face similar issues of lack of diversity. African Americans account for only 5% of clinical trial participants, which creates blind spots about the effectiveness of treatments. Every body metabolizes drugs at different rates based on a set of genetic variants and other factors including age, gender, medical history, and other environmental factors. The biomedical community is aware of the lack of diversity in research and clinical trials, which is evidenced by the new FDA recommendation that 25% of clinical trial participants be from diverse populations.
“Even if you can get people to sign up for studies, there’s a huge dropout of minorities because they can’t afford the transportation cost or take off from work to attend follow-up visits,” explains Yusuf N. Henriques, an interdisciplinary scientist and former combat-medic in the US Army.
Access to healthcare has been another major factor in creating the disparities we see. Boundaries to healthcare include socioeconomic barriers including health insurance and physical barriers including distance for people in urban and rural communities respectively Federal agencies like the National Science Foundation have launched initiatives encouraging innovation in patient-centered, decentralized healthcare platforms to address the issue.
Origin Story
Henriques knows all about the challenges of gathering health data from diverse populations. As a former FDA regulator, he reviewed clinical data packages for medical devices and drug products up for approval. He remembers noticing how these trials lacked participation from a diverse patient population, even for medical products primarily aimed at minority patients.
“Because these trials end up using data that primarily comes from white males of European descent, there ends up being a lot of trial and error to find the right effective dose for, say, a Black woman who metabolizes that blood pressure or diabetes medication differently.”
When the pandemic hit, Henriques was in NYC as part of the 2020 cohort of Apex, a nine-month incubator at NYU’s Veterans Future Lab. His focus during that time was on TruGenomix Health, Inc., the first Black-owned genomics company in the United States. He founded the company after his twin daughters’ summer camp counsellor, a US Marine, committed suicide. It was at TruGenomix that his current Chief Scientific Officer, Bradford Wilson, PhD, developed the PTSD gene expression assay (TruGen-1), after gaining exclusive rights to the patent from Henriques’ association with the Icahn School of Medicine at Mount Sinai (ISMMS) Psychiatry Department. Today, the gene expression assay helps identify individuals who might be at high risk for PTSD, anxiety, depression, and bipolar disorder.
During the peak of COVID, he left NYC to shelter in place with his family in Maryland and then quickly found himself on various task forces tackling COVID-19 logistical issues, like ventilator distribution and supply shortages. He did what he always did, first as a military combat medic and then in government service: respond to the pressing need in front of him. Then MIT offered him the opportunity to co-create a hackathon focused on dismantling racial injustice in healthcare systems.
The MIT Hacking Racism in Healthcare Challenge began in September of 2020. One of the verticals it addressed was lack of diversity in clinical trials, made more pressing by the sprint to develop COVID drugs that worked well for the people of color, who were most likely to contract and die from COVID-19. By that October, Henriques formed the idea for IndyGeneUS.
“MIT provided us with a platform and an initial network to leverage genomics to address these health disparities that COVID brought into focus. We came up with tangible ways to address the lack of representation in clinical trials, the barriers to access that exist, and to securely compile more diverse patient data, and create vaccines/drugs that work for more people.”
Under the Hood
IndyGeneUS (pronounced “indigenous”) is a precision medicine company using next-generation sequencing technologies to identify unique gene variants in diseases that affect underrepresented populations. By pairing a patient-centric approach and philosophy with a proprietary blockchain-encrypted precision health discovery platform, IndyGeneUS aims to become the trusted resource for delivering high-quality and reliable disease insights as well as molecular and cellular therapeutic development and bioprocessing that is inclusive of populations underrepresented in genetic research.
“We’re addressing the data issue for these communities and addressing the trust issue. This means we need to go where people are and not make this a burden for them to participate. We need labs in the ‘hood.’ We need health literacy communication to happen at the barbershop and on the street corners.”
To that end, IndyGeneUS established their first US lab on the historic campus of the old Walter Reed Medical Center, on Georgia Avenue in Washington, DC. This location helped establish their mission and model and holds sentimental value for Henriques, who used to walk the halls during his military days. By intentionally setting their services in an urban center, the company ensures that clinical trials and genetic testing take place in a comfortable, familiar setting for residents, and draw employees from the same community.
IndyGeneUS started with a focus on one of the largest underrepresented groups when it formed the Women’s Health Research Collaborative. In partnership with Endo Black, Inc., PCOS Challenge: The National Polycystic Ovary Syndrome Association, and The White Dress Project, IndyGeneUS is studying the genetics of endometriosis, PCOS, and uterine fibroids in diverse populations of affected women.
IndyGeneUS CSO Dr. Bradford Wilson explains, “This partnership gives us the potential to positively impact over 90% of women of all ethnicities who are affected by one or more of these conditions. Our advocacy partners tell us that there are women affected by all three of these conditions and there may be a genetic explanation.”
On the global front, IndyGeneUS has already expanded their operation to the African continent. Last year, IndyGeneUS forged a public-private partnership with Global Health Innovations (GHI), which is a subsidiary of The Aurum Institute NPC (Aurum) with its headquarters in Johannesburg, South Africa. This collaboration is expected to accelerate IndyGeneUS’s ability to engage up to two million patients, enroll participants in research studies, and empower Africans to securely access, control, and manage their genomic and medical data within the IndyGeneUS Precision Health Discovery platform. IndyGeneUS’ second lab is located in the Woodstock area of Cape Town which is historically urban. By creating the world’s largest repository of indigenous and diasporic African clinical and genomic data, and applying their proprietary AI/ML algorithms that integrate multi-omics data, electronic health records, and the latest scientific literature to its analysis, IndyGeneUS plans to accelerate the discovery, development, and manufacturing of precision therapeutics for diverse populations. It’s health equity on a global scale, which addresses the disparities in access and information that African diaspora populations face around the world.
The StartUp Health Assessment
StartUp Health is proud to support IndyGeneUS in their mission to drive precision medicine towards greater equity because of their community-centered, comprehensive approach that creates, collects, and codifies diverse genomics data to fuel real change. By thinking both locally and globally, they are better able to address the disparities that exist when it comes to what kind of genetic material is available for drug discovery and how new therapies are tested and proven.
This mindset has already given them the strategic partnerships and support to fuel rapid growth in the year ahead, making them a company to watch in the field of genomics. Johnson & Johnson partnered with them to back their first lab in DC, a result of their quickfire challenge, and Merck invited them to join their Q4 2022 Digital Science Studio Accelerator Cohort. Construction has already begun on their first sequencing facility in South Africa, the result of several relationships there with universities and health organizations.
Additionally, we’re proud to support the dynamic team behind the work. Yusuf Henriques has over 20 years of experience leading clinical research, data analytics, and drug evaluation as well as several startups under his belt. His co-founder and CSO, geneticist Bradford Wilson, PhD, brings over 15 years of health disparities research and genetic sequencing experience to the company. IndyGeneUS also leverages the experience of Chief Medical Officer Gordon Taylor, MD, a board-certified emergency physician, to oversee the clinical application of the data and expert communication, and brand strategist Angel N. Livas as their Chief Communications Officer. This group combines decades of achievement in their fields with a shared passion to make healthcare more equitable.
Join us in welcoming IndyGeneUS to the StartUp Health family. We can’t wait to see how their contributions to research and drug development help improve health outcomes for everyone.
Connect with the IndyGeneUS team via email
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Published: May 18, 2023