To improve healthcare, startup IndyGeneUS is building a more equitable genomic data repository

In the early days of the COVID-19 pandemic, many people picked up an indoor hobby or two. For DC founder Yusuf Henriques, it was hackathons.

At the time, Henriques co-created a virtual hackathon on racism and healthcare from the Massachusetts Institute of Technology, which led him to look closer at a particular aspect of healthcare.

“We started looking at the structural racism that has been built into the system, lack of access, not enough women and minorities in clinical trials,” Henriques told Technical.ly. “I led that track in the lack of diversity in clinical trials.”

Following the hackathon, he decided to take matters into his own hands by creating IndyGeneUS (pronounced like “indigenous”). The DC-based genomics startup looks to drive health equity with sequencing — protected by blockchain — while also trying to create more effective treatments by increasing people of color and women’s participation in clinical trials. Currently, the company is a lab resident at Johnson and Johnson’s JLABs and also created a lab in Cape Town, South Africa (presently, fewer than 2% of sequenced genomes worldwide are African). All in all, he wants to create the world’s largest repository of diasporic African clinical and genomic data, all of which is blockchain-secured.

During the hackathon and the company’s earliest stages, Henriques said that he knew he needed to find a way to inspire some of these groups to participate in gene sequencing. He noted that many patients of color distrust the medical system due to systematic inequities and cases like those of Henrietta Lacks, a Black woman whose genes were immortalized without her consent — and whose family has never been compensated. To combat this, he wanted to create a more transparent system, where patients could see a ledger with time-stamped information on everywhere their sample has gone and how it contributed to science.

Creating this ledger and transparency, Henriques thinks, will encourage more participants.

“It’s not going to solve anything, but it will help provide that trust and transparency that I think the minority population would like to see so that they could at least trust the process,” Henriques said. “Because the current process, they have no trust in.”

When he first created IndyGeneUS, Henriques partnered with and eventually acquired a company known as EncrypGen, a blockchain-based free market for genetic data. The marketplace allows participants to bring their data from 23andMe and release it onto the marketplace, along with IndyGeneUS’ own genomics work, which can boost the amount of data available on patients of color.

Increasing the amount of gene data available from people of color is crucial, Henriques said, because of the huge current disparity in clinical trial testing. People of color make up only 2% to 16% of patients in clinical trials in the US. In the COVID-19 vaccine trials, 42% of participants for Pfizer and 35% of participants for Moderna were people of color, even though many in those groups were disproportionately affected by the virus.

Henriques noted that without proper trial and study of all groups, providers cannot have genuinely effective drugs and treatments.

“I don’t see how you can have precision medicine without equity and inclusion,” Henriques said. “[Without it], the fundamental flaw that you’re trying to fix will never be fixed.”

Since the company’s founding, IndyGeneUs has partnered with Johnson and Johnson as a resident company, as well as The Aurum Institute. The company has raised just under $2 million in pre-seed funding, according to Henriques, which includes funds from its partner orgs. It was also just admitted into the Endless Frontier Labs out of New York University and plans to launch its seed round in the next two months.

Henriques’ presence in Maryland’s tech scene goes dates back to before he created IndyGeneUS. In 2015, he founded TruGenomix (now known as Polaris Genomics), which is currently based in Gaithersburg. When he set out to create his new company in 2020, Henriques admitted he was torn about embracing the Maryland life sciences scene again and starting his new company in the district. But, ultimately, he picked DC because his is one of the few genomics companies in the area, as well as due to DC’s commitment to maternal health and the health disparities in the area that he’s trying to tackle.

“I’m deeply committed to DC,” Henriques said.