Edition OO1 - Her Cells, Our Data

Henrietta Lacks was an African-American cancer patient at Johns Hopkins Hospital in the 1950s. During a biopsy, her doctor harvested a sample of her cancer cells. Later, those cells—now called HeLa cells —were widely shared and used without her permission. On the Johns Hopkins’ website, the institution explains that such use of cells was perfectly legal at the time, and it was.[1] But Henrietta Lacks did not consent to what happened to her cells, and HeLa were unlike any other human cells that had been discovered at the time. They could survive and multiply outside of the body indefinitely.[2] In essence, they were immortal. Henrietta Lacks died. But her cells did not.

For the next seven decades, HeLa cells were widely shared, and because of their extraordinary nature, they propelled many of the major medical advances of the modern era, including the polio vaccine[3] along with cancer[4] and Covid-19 research.[5] HeLa cells have been inside laboratories around the globe.[6] They even have been launched into space.[7]

Henrietta Lacks’s story gained prominence through a critically acclaimed book.[8] But it was a neighbor of ours, singer-songwriter Susan Anders, who invited my mother and me to a concert, and then sang a gutting song about Henrietta Lacks that made a stunning, albeit artistically phrased, observation:

Her DNA is in all of us—what happened to her was wrong.

HeLa cells, in effect, through the medical advances they drove are in the bodies of people alive today—so that people who have never heard Henrietta Lacks’s name nevertheless carry something of her forward without knowing it. And what was done to make that possible was wrong. It was a violation. Her cells were converted, without her consent, into a resource that generated enormous wealth for institutions and gave her nothing. She was commodified in the most literal and irreversible sense possible. A human being was turned into a product.

The acknowledgment that Susan’s song insisted upon—that Henrietta Lacks is in us, that what happened to her was wrong — is not primarily a legal argument, though it has legal dimensions. It is something simpler and more fundamental. It is the moral argument that no person should disappear into a product, and that the people who benefit from what was taken—primarily, the institutions—carry a debt that cannot fully be repaid. But something is owed, and it’s the kind of debt that does not expire and does not become less real because the system that created it has no way to pay it back.

***

What was done to Henrietta Lacks — the extraction without consent, the conversion of a person into a product, the accumulation of enormous wealth and power by institutions that acknowledged no obligation to the individual whose body made it possible — is not a historical anomaly. It is a template that is still running, at a scale and speed, but now to something even more intimate than cells.

Our data is being harvested. Our thoughts. Our languages. Our accumulated knowledge.

Every book scanned. Every article ingested. Every photograph indexed. Every video transcribed. Every social media post, every blog comment, every forum thread, every search query, every line of code, every translated phrase, every lullaby uploaded to YouTube, every poem posted at midnight— all of it was used as training material for AI systems without consent, without compensation, and without any obligation to the people who produced it.

And the purpose of this system is not to serve you, but to model you, to predict you, and to convert you, like Henrietta Lacks before you, into a resource. The extraction does not pause between generations. It is continuous, total, and accelerating.

Our system was not built for this. It was not built for us. It was built around transactions, around property, around the interests of the people with the power to design it. And a system built around those things will keep producing the same outcome — people converted into products, debts that never can be collected, and violations that are perfectly legal.

That is not inevitable. It is a design choice that implicates our economy, our laws, our culture, our education system, and, certainly, the technologies that are shaping our lives. And design choices can be changed.

[1] “The Legacy of Henrietta Lacks.” Johns Hopkins Medicine, www.hopkinsmedicine.org/henrietta-lacks. Accessed 22 Apr. 2026.

[2]See “Henrietta Lacks.” Encyclopædia Britannica, www.britannica.com/biography/Henrietta-Lacks. Accessed 22 Apr. 2026; and “The Immortal Life of Henrietta Lacks.” National Library of Medicine, pmc.ncbi.nlm.nih.gov/articles/PMC3516052. Accessed 22 Apr. 2026.

[3]See “Henrietta Lacks: How her ‘immortal’ cells advanced modern science,” BBC Bitesize, BBC, http://www.bbc.co.uk/bitesize/articles/zv6cydm. Accessed 22 Apr. 2026.

[4]See “What Are HeLa Cells?” WebMD, webmd.com/cancer/cervical-cancer/hela-cells-cervical-cancer

[5]See “The Importance of HeLa Cells.” Johns Hopkins Medicine, hopkinsmedicine.org/henrietta-lacks/importance-of-hela-cells; and “Vessels for Collective Progress: The Use of HeLa Cells in COVID-19 Research.” Science in the News (Harvard), 4 Sept. 2020, sitn.hms.harvard.edu/flash/2020/vessels-for-collective-progress-the-use-of-hela-cells-in-covid-19-research/

[6]See “UN Honours Henrietta Lacks, Whose Cells Transformed Medical Research Worldwide.” UN News, 13 Oct. 2021; and “The HeLa and SiHa Cell Lines.” Teal Health, getteal.com/research/the-hela-and-siha-cell-lines-recognizing-a-history-of-harm-to-envision-a-future-without-cervical-cancer.

[7]See “The Importance of HeLa Cells.” Johns Hopkins Medicine.

[8]See Skloot, Rebecca. The Immortal Life of Henrietta Lacks. Crown Publishers, 2010.

Thanks to Susan Anders for providing me with a link to her song: https://susanandersmusic.com/henrietta-lacks