The HeLa Cell Line and Henrietta lacks: Communication, Impact, and the Human Cost of Scientific Progress

The HeLa Cell Line and Henrietta lacks: Communication, Impact, and the Human Cost of Scientific Progress
The HeLa cell line stands as a powerful example of how choices in scientific communication ripple outward—affecting not just our understanding of research outcomes, but the lives of those whose bodies become part of that research. We can learn a lot from the story of the HeLa cell line, but we can learn much more from the life of Henrietta Lacks.
Rebecca Skloot's The Immortal Life of Henrietta Lacks tells the story of a woman who, during a colposcopy at Johns Hopkins, had cancerous cervical cells collected without her knowledge or consent. These cells became the first immortal human cell line—one that has fundamentally shaped modern biomedical research. To call HeLa's impact on science "incredible" may actually understate its significance.
The power of clear understanding
What struck me most powerfully in Skloot's book was her work as a science journalist to connect with Henrietta Lacks' descendants. When her children first learned about the HeLa cell line, they understood the news to mean their mother was somehow still alive—a revelation that was simultaneously confounding and profound, especially for those who had lost her when they were young.
The Lacks family drew great strength from their faith, and within that framework, learning that part of their mother's body continued living created a foundational confusion. This wasn't scientific misunderstanding—it was the collision of two different ways of making sense of the world. 
It's interesting to think about how this has been dramatized as well, not just reported. 
The Gap Between Doing and Communicating
This moment reveals something critical about scientific work: what feels functional, routine, even clinical to researchers can fundamentally rock another person's understanding of reality. The gap between what is being done and how we talk about it holds immense power.
What seems quotidian to you may require someone else to completely restructure their worldview—a shift that can be physically difficult when it conflicts with beliefs that help them function in the world.
Why This Matters for Your Work
As you conduct your research, consider: How does your communication enter the world? Who does it impact? The way we talk about our work isn't separate from the work itself—it shapes who benefits, who is harmed, and who is excluded from the conversation entirely.
Behind Every Dataset
There are human beings whose lives and legacies deserve our thoughtful attention
Not Just Conducting
But how we communicate about our science matters deeply
The HeLa Lesson
Every cell line, every data set, connects to real human stories
The HeLa story, Henrietta's reminds us that behind every cell line, every dataset, every experimental subject, there are human beings whose lives and legacies deserve our thoughtful attention—not just in how we conduct science, but in how we communicate about it.
The Human at the Heart of the Data
We see extraordinary levels of hype around artificial intelligence - both utopian and dystopian. I believe there's only one other field that generates this same intensity of hope and fear: biomedical research.
Why these two? Because they connect to the two halves of what makes us human.
Medicine connects immediately to our physical bodies - how we might live better, live longer. AI connects to our intelligence - how we reason, how we navigate the world through our minds.
These are the two fundamental aspects of human existence: our bodies, which are how we enter the world, and our intelligence, which allows us to navigate it.
The biological conversation is simply older. Even the earliest AI pioneers - Babbage and Lovelace - were working long after Lamarck. So those of us working in artificial intelligence can learn from how the biomedical conversation has unfolded.
And here's what we must remember: At the root of every dataset is a human being.
Just as in biology, every data point represents a life somehow connected to the world, to human experience. Every point in our datasets came from a question asked by a person, or the experience of a human being moving through the world. Our datasets are human subjects. That data is human data.
If we keep this in mind, we will make better, more informed, more generous, more careful choices about how we approach the information we use and the questions we ask about it.
One story illustrates both the promise and the peril: Henrietta Lacks and the HeLa cell line. It shows us not just the scientific events that unfolded, but how the story was communicated, how it impacted people, how it's been reported and dramatized, and how we think about research ethics today.
It's a touchstone - a reminder of what's at stake when we forget the human beings at the heart of our data.