Rebecca Ihilchik is Manager, Communications at CCRM supporting OmniaBio Inc. Drawing on a decade of experience in healthtech, non-profits, and higher education, she is most passionate about the storytelling aspect of professional communications. Rebecca holds a BA Hons in Creative Writing from York University, an MA in Religion from the University of Toronto, and a certificate in Digital Marketing Management from the University of Toronto School of Continuing Studies.
Multiphoton fluorescence image of HeLa cells. Wikimedia Commons.
This past summer, the family of Henrietta Lacks—sometimes described as the “mother of modern medicine”—announced they had reached a settlement with biotechnology giant Thermo Fisher Scientific Inc., who they accused of unjustly profiting from its use of Lacks’ cell line.
Lacks was a Black patient treated for cervical cancer at The John Hopkins Hospital in 1951. Without her knowledge or consent, a researcher took a sample from Lacks’ tumour before she died. The sample became the first human cells on record to continuously reproduce in petri dishes, becoming known as the famed “immortal” HeLa cell line. (For more background, read this Signals post.)
Since then, the HeLa line has been foundational for significant innovations in science and medicine – think genetic mapping, polio vaccine, even coronavirus vaccines.
Seventy years after her death, in 2021, Lacks’ descendants filed a suit against Thermo Fisher, arguing the company had been “unjustly enriched” by commercializing products made possible by HeLa cells. The family says they have never been compensated for their matriarch’s contribution, even well after the origins of the HeLa line became known.
The terms of the settlement are confidential, but the legal saga could become a harbinger of things to come for other patients or families who feel they’ve been exploited in the name of scientific research. (In fact, a week after news of the Thermo Fisher settlement broke, the Lacks family announced they were suing Ultragenyx for the same reasons.)
The issue is further compounded for people of colour.
“Black suffering has fueled innumerable medical progress and profit, without just compensation or recognition,” the Lacks family lawsuit argued. “Various studies, both documented and undocumented, have thrived off the dehumanization of Black people.”
What does this mean for me?
Henrietta Lacks’ medical team is one in an unfortunately long line of researchers in positions of systematic power who took advantage of vulnerable marginalized people “available” to them.
Nineteenth-century American physician James Marion Sims performed notoriously horrific operations on enslaved Black women and children. Closer to home, in the 1940s and ’50s, the Canadian government conducted dangerously unethical nutritional experiments on Indigenous children in residential schools.
And yet—legacies of corrupt research are inextricable from our scientific and medical foundations. Gynecologists still use vaginal speculums (a Sims invention). We still put stock in the Canada Food Guide. And some cell and gene therapies continue to rely on the HeLa line.
Where does this leave the wider regenerative medicine community?
It can be challenging to know how to action organizational commitments to equity, diversity and inclusion (EDI)—but it’s possible even on an individual level.
Starting points may include:
- Supporting groups working within diverse communities to address health disparities. Support can take many forms: volunteering, donating, providing access to networks, or partnering on an initiative. For example, Sylvia Okonofua of Stem Cell Club creates awareness about the need for more Black stem cell donors on Canada’s stem cell registry through Canadian Blood Services—in fact, she wrote about her work in a previous Signals blog.
- Self-educating and encouraging dialogue around issues of real-world affordability and access. Can any individual singlehandedly increase affordability to cell and gene therapies? No. Does educating oneself about it still matter? I would like to think so. One might start with the 2020 Council of Canadian Academies (CCA) report entitled From Research to Reality.
- Championing leadership opportunities for colleagues of diverse backgrounds. We know that representation truly does matter both from a health outcomes point of view as well as a societal and educational one. For those involved in thought leadership activities: if the makeup of your conference line-up looks and feels too homogenous, it probably is. If you’re a speaker on such a panel, work with event organizers to ensure the roster reflects a real-world diversity of thought and lived experience.
As we grapple with certain episodes in our scientific history—which will only hit the news more as our collective understanding of ethics deepens—using a contemporary EDI lens can be helpful. We can’t recoup the losses of the Lacks family. But we can take a tiny step toward making our own regenerative medicine bubble a little more equitable.
What would you add? Let us know in the comments.
Guest
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