If you didn’t already know Henrietta Lacks’ story, you might have heard it this week.
In the 1950s, doctors at Johns Hopkins Hospital in Baltimore removed the cancerous cells of the Black Maryland woman to use for medical research before her death. The cells have since been cloned countless times and used in the development of medical breakthroughs such as vaccines and genetic mapping. However, her family and descendants have not received any compensation for the use of Lacks’ cells, and in just the past few days, her estate announced a lawsuit in Baltimore over the nonconsensual use of the cells.
Lacks’ story and the struggle for “genetic justice,” as Lacks estate attorney Ben Crump termed it, is resonating beyond Baltimore: It is an inspiration for LucasPye Bio founder Tia Lyles-Williams in her work to make life sciences more equitable for Black people and disrupt the pharmaceuticals industry. She thinks that can happen with her forthcoming Philly life sciences workspace HelaPlex.
Lyles-Williams — recently named one of Inc.’s Female Founders 100 — explained that the original purpose of HelaPlex was to recruit customers for the Philly-based biologic drug manufacturer LucasPye, only for her to find that while some companies were financially ready for growth, they lacked the tools to develop their businesses.
“When I looked in the market, there’s nothing that allows life science startups to build prototypes like tech app people,” she told Technical.ly.
In addition to a full-scale workspace, HelaPlex will have a small-scale Current Good Laboratory Practices processing facility and a makerspace designed with medical research in mind, as well as an accelerator for life science companies. It will include a 50,000-square-foot wet lab and office for African diaspora genome mapping company IndyGeneUs.
Lyles-Williams said she is currently in discussion with lawyers representing the Lacks estate to get the family compensated for the use of Henrietta Lacks’ cells, and hopes to eventually help create policies to better protect and compensate research participants. She cited the NCAA’s recent landmark decision to allow college athletes to get paid as an example she wants to copy.
“I look at the NCAA and how athletes can finally receive payment,” she said. “Our sport is medical research and [participants] should be fairly compensated.”
For Lyles-Williams’ business partner and IndyGeneUs founder Yusuf Henriques, building trust with Black patients has been a top priority. Using Lacks’ mistreatment and moments like the Tuskegee experiments that saw Black research participants not receive treatment for syphilis as examples, he said he understands the distrust Black people have with medical research. There’s more work to be done.
One strategy from IndyGeneUs: By signing up with the By Us, For All website, Black people can share their personal health information for research and help build a pool of patients. After research participants share their personal information, they would be compensated via blockchain.
According to Henriques, 80 to 90% of drug trials are done on European white males. By integrating Black people who have historically been omitted from research into the process, better drugs could be created through the research resulting in less expensive medication and medicine that could be useful for people of all backgrounds.
Unlike most life sciences centers, Lyles-Williams wants to consider immediate community health needs by partnering with an urgent care center near HelaPlex’s future Philly site to provide healthcare services to research participants.
“It could be somebody right there in the neighborhood to take care of that and make sure African Americans are being treated appropriately,” she said. “They’re at a quality lab, not how we’ve historically been treated as lab rats. Their samples are not sold.”
As for HelaPlex, Lyles-Williams plans for the space to have a two-pronged business model: The workspace itself will function as a center for life sciences research, while HelaPlex 2.0 will be a franchise model replicated elsewhere.
Michael Butler is a 2020-2022 corps member for Report for America, an initiative of The Groundtruth Project that pairs young journalists with local newsrooms. This position is supported by the Lenfest Institute for Journalism. -30-
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