Henrietta Lacks’ family had no idea her cells were alive in laboratories around the world until more than two decades after her death. The discovery came not as a deliberate disclosure, but through a confusing phone call in 1973 from a researcher who wanted blood samples from her husband and children. For years afterward, the family struggled to piece together what had actually happened, and it took decades before they fully understood the scope of their mother’s unwitting contribution to science.
Twenty Years of Silence
Henrietta Lacks died of cervical cancer at Johns Hopkins Hospital in 1951. Before her treatment, cells from her tumor were removed for research without her knowledge or permission, which was standard practice at the time. Those cells, labeled “HeLa,” turned out to be extraordinary. They survived and multiplied in the lab when other human cells died, making them invaluable for medical research. Within years, HeLa cells were being shipped to laboratories worldwide.
Her husband, David Lacks, was told little after her death. The family had no reason to suspect that anything unusual had happened with Henrietta’s tissue. For more than twenty years, they went on with their lives in Baltimore while her cells became one of the most widely used tools in biomedical research, helping develop the polio vaccine, advance cancer treatments, and support countless other breakthroughs.
A Confusing Phone Call in 1973
The reason researchers finally contacted the family had nothing to do with transparency or ethics. It was a scientific crisis. By the early 1970s, mounting evidence showed that HeLa cells had contaminated and overgrown other cell cultures in labs around the world. Samples that scientists believed were breast cancer cells, mouse cells, or other tissue types turned out to be HeLa. The contamination problem threatened to invalidate years of research.
To identify which cultures were truly HeLa and which were something else, researchers needed genetic markers from Henrietta’s living relatives. A researcher named Susan Hsu called David Lacks and gave him a highly technical explanation for why she wanted to draw his blood, using terms like “genetic marker profile” and “genotype.” David had a fourth-grade education. He didn’t understand what she was telling him. Years later, he told journalist Rebecca Skloot that he believed he had been tested for cancer.
This was effectively the moment the family first learned something was going on with Henrietta’s cells, but the communication was so poor that they didn’t grasp what it meant. No one sat them down and said, “Your wife’s cells have been growing in laboratories for over two decades and are used in research worldwide.” Instead, they gave blood samples and were left more confused than informed.
The 1976 Rolling Stone Article
The fuller picture arrived a few years later, and it came not from doctors or scientists but from a magazine. In 1976, journalist Michael Rogers published an article in Rolling Stone that revealed the existence of the HeLa cell line and connected it to a real woman. Up until that point, many in the scientific community used the pseudonym “Helen Lane” when referring to the cells’ origin. The article used Henrietta’s real name.
When members of the Lacks family read or heard about the piece, they were stunned and confused. They couldn’t understand how Henrietta’s cells could have been taken without consent, how those cells could still be alive 25 years after her death, or why no one had ever told them. The revelation raised questions the family would wrestle with for decades: Had their mother been exploited? Were they owed something? Why had the medical establishment kept them in the dark?
A Scientist Who Treated Them Like People
For years after the Rolling Stone article, the family’s interactions with the scientific world remained frustrating and dehumanizing. Researchers and journalists would contact them seeking information or access, but rarely took the time to explain what had happened or acknowledge the family’s pain. That changed when Dr. Roland Pattillo, a gynecological cancer researcher at Morehouse School of Medicine, entered their lives.
Pattillo tracked down Henrietta’s daughter, Deborah Lacks, who was then in her 40s and living in Baltimore, and invited her and her brothers to a scientific conference. For Deborah, this was a turning point. Pattillo was the first scientist to explain what had happened to her mother in terms the family could understand. Rebecca Skloot, who later wrote the definitive book on the Lacks story, described Pattillo as “the first person from the world of science to take a step back and say, ‘These cells came from a Black woman who had a family, and she needs recognition, and they need peace.'” He treated Deborah not as a research subject or a curiosity, but as a daughter who was desperate to learn about the mother she had lost as a baby.
Rebecca Skloot and the Full Story
Even after the Rolling Stone article and Pattillo’s efforts, the Lacks family’s understanding of Henrietta’s legacy remained fragmented. That began to change in 1999, when Rebecca Skloot, then a young science writer, called Deborah Lacks to propose writing a book about her mother. The process was slow and difficult. Skloot first contacted Pattillo, who grilled her for months about her intentions, her journalistic experience (which was minimal at the time), and her understanding of the history of medical exploitation of Black Americans. He had made it his mission to protect Deborah from what he saw as the carelessness and ethical failures of white scientists and journalists who had previously reached out to the family.
When Pattillo was finally satisfied, he introduced Skloot to Deborah. The research and writing process took more than a decade. The resulting book, “The Immortal Life of Henrietta Lacks,” was published in 2010 and gave the family what they had never fully received from the scientific community: a complete, honest account of what had been done with Henrietta’s cells, why it mattered, and who their mother had been as a person.
Members of the Lacks family have spoken publicly about what the book meant to them. As one family member put it, the book allowed them to finally understand their grandmother’s contributions to science and to learn about her as a woman, a person, and a mother. It also allowed the elders in the family to begin healing and to face things they had long avoided. The discovery of what happened to Henrietta Lacks was not a single moment but a slow, painful process that unfolded over nearly 40 years, from a bewildering phone call in 1973 to a book published in 2010.