The Cells That Never Asked Permission

In 1951, a Baltimore hospital took a small sample of tissue from a dying woman and never told her. Seventy years later, a lawyer would argue that sample was still generating money.

In January 1951, Henrietta Lacks, a 31-year-old mother of five living in Turner Station, Maryland, felt a knot inside her and told her husband she thought something was wrong. She drove to Johns Hopkins Hospital in Baltimore, one of the only hospitals in the region that would treat Black patients at all in that era of segregated American medicine. A doctor examined her and found a lesion on her cervix — dark, firm, bleeding at the touch. A biopsy confirmed an aggressive cervical cancer. She began treatment with inserted tubes of radium, standard for the time. During that same procedure, a surgeon shaved two small samples from her cervix — one of cancerous tissue, one of healthy tissue — and sent them down the hall to a laboratory.

Henrietta was never asked whether she wanted to donate anything. Nobody at Johns Hopkins told her the samples had been taken, let alone what would be done with them. Under the medical norms of 1951, this was not unusual: there was no concept of informed consent as we think of it today, and tissue removed during treatment was, in practice, the hospital’s to use. George Gey, the researcher who ran the tissue lab down the hall, had spent more than two decades trying to grow human cells outside the body. Every sample his lab had ever worked with — hundreds of them by then, taken from patient after patient — had done the same thing: survived a few days in culture, then died.

Henrietta’s cells did not die.

Within twenty-four hours, Gey’s lab assistant Mary Kubicek noticed the culture had doubled. The next day, it had doubled again. The cells kept dividing, hour after hour, with no sign of slowing — the first human cells anyone had ever managed to keep alive and multiplying indefinitely outside a human body. Gey labeled the sample “HeLa,” using the first two letters of Henrietta’s first and last names, the convention his lab used for every specimen. He had no idea, at first, that he was holding something that would outlast everyone involved in its creation.

Henrietta’s own cancer, meanwhile, was moving fast. Radium treatment did not stop it. By the summer of 1951 it had spread through her abdomen; she was in severe pain, and doctors documented tumors that had fused her internal organs into what one later described as almost a solid mass. She died at Johns Hopkins on October 4, 1951, at the age of 31, leaving behind her husband, David “Day” Lacks, and five children, the youngest barely a toddler. She was buried in an unmarked grave in a family cemetery in Clover, Virginia, near the tobacco farm where she had grown up picking crops as a child.

The family’s grief did not end with her funeral. Henrietta’s second child, Elsie, had developmental and neurological difficulties that her family struggled to manage on their own, and at some point in the 1940s she was placed in what was then officially named the Hospital for the Negro Insane, a segregated Maryland state institution later renamed Crownsville State Hospital. Elsie died there in February 1955, around age fifteen; the hospital’s own records of her time there are incomplete, and Skloot’s research — drawing on what documentation survived — found conditions at the institution were badly overcrowded and poorly resourced, though the exact course of Elsie’s care and death has never been fully reconstructed. For decades, most of Henrietta’s grandchildren did not even know Elsie had existed.

Her cells did not go into the ground with her. Gey began giving samples away, free of charge, to any laboratory that asked. Because HeLa cells were hardy enough to survive shipping and durable enough to be grown in bulk — unlike anything researchers had worked with before — they spread through the scientific world at remarkable speed. Within a year, Jonas Salk’s team was using HeLa cells to test the first polio vaccine, since the cells were ideal hosts for growing and studying the virus safely in a lab. Demand grew so large that a dedicated production line was set up at the Tuskegee Institute in Alabama, churning out millions of HeLa cells a week just to keep pace with vaccine research. Within a few more years, HeLa cells had been sent into orbit aboard Soviet spacecraft to study how radiation and zero gravity affected living human tissue — among the first human cells, of any kind, to leave Earth.

The scientific record kept growing from there. HeLa cells became the basis for some of the first successful human cell cloning experiments. They were used to help map the human genome, to test the effects of toxins and new drugs before they reached human trials, and, decades later, in research that helped virologist Harald zur Hausen demonstrate that certain strains of HPV cause cervical cancer — the same disease that killed Henrietta — work that earned him a Nobel Prize in 2008 and helped lead to an HPV vaccine. HeLa cells have since been cited in tens of thousands of scientific papers and used in research connected to in vitro fertilization, gene mapping, and, far more recently, the development and testing of COVID-19 vaccines. An entire commercial industry grew up around them: companies cultured, packaged, and sold HeLa cells and HeLa-derived products to laboratories worldwide, a business that has continued, in various forms, for more than seventy years.

For a long time, almost none of this reached the Lacks family, and what little did was garbled or actively misleading. For years, some published scientific accounts didn’t even use Henrietta’s real name — early press materials and textbooks referred to the cell line’s donor using invented names like “Helen Lane,” obscuring who she had actually been even as her cells became world-famous under the HeLa label. Her husband and children had no idea, into the 1970s, that any part of her was still, in a very literal sense, growing in laboratories around the world. According to accounts compiled by Johns Hopkins and by journalist Rebecca Skloot, who spent years researching the family’s story, relatives learned the truth only when a researcher’s comment — made to a family acquaintance who happened to work in a scientific setting — filtered back to them: Henrietta’s cells were not just preserved, they were alive, multiplying, and being bought and sold.

What followed only deepened the family’s unease. Scientists, hoping to use the family’s blood to help distinguish genuine HeLa cells from other cell lines that had begun contaminating labs worldwide (a real and serious problem for researchers at the time), began contacting Henrietta’s husband and children asking to draw their blood. According to the family’s own later accounts, the explanations they were given were confusing at best — some relatives came away believing they themselves were being tested for the same cancer that had killed their mother. They consented to blood draws without a clear understanding of why, more than two decades after Henrietta’s tissue had been taken the same way: without a real explanation of what was being studied or why it mattered.

Henrietta’s daughter Deborah Lacks spent much of her adult life trying to understand what had actually happened to her mother — what HeLa cells were, why scientists wanted her family’s blood, and whether her mother had suffered in the process of becoming, unknowingly, one of the most consequential research subjects in the history of medicine. Her search eventually connected her with Skloot, and the two worked together for years gathering family history, hospital records, and interviews with the scientists involved. Deborah died in 2009, the year before their collaboration was published as “The Immortal Life of Henrietta Lacks,” a book that became a bestseller and brought Henrietta’s story to a wide public audience for the first time, nearly sixty years after her death.

Throughout this period, the disparity between what Henrietta’s cells had done for medicine and what her own descendants had access to became one of the story’s starkest details. By the time the book was published, a global industry built on culturing and selling HeLa cells and HeLa-derived products had been running for decades, and the cell line had helped generate findings behind vaccines, cancer treatments, and drugs used by millions of people. Multiple news outlets covering the family in the years since have reported that several of Henrietta’s own relatives went without health insurance and struggled to afford treatment for chronic illnesses of their own — including, in some cases, cancers similar to the one that killed her. Skloot used part of the proceeds from her book to establish the Henrietta Lacks Foundation in 2010, which has since made grants to Lacks family members and other research subjects’ descendants for health care, education, and other needs, though it operates independently of any of the companies that have profited from HeLa cells.

The reckoning did not stop there. In March 2013, a team of researchers in Germany published the complete genetic sequence of a strain of HeLa cells on a public database, without consulting the Lacks family at all. Because HeLa cells came from Henrietta’s own body, that sequence effectively exposed detailed genetic information about her descendants too — markers for inherited health risks that her living relatives had never agreed to make public. Skloot wrote about the episode for The New York Times, and the researchers, after an outcry, took the data down. The incident forced a reckoning at the National Institutes of Health, which spent months negotiating directly with Lacks family members. In August 2013, the NIH announced a formal agreement: researchers seeking access to HeLa whole-genome sequence data would have to apply through a controlled-access system, reviewed in part by a board that includes two members of the Lacks family. The arrangement gave the family a voice in how the genetic data tied to their mother and grandmother would be used going forward — but it included no financial compensation, and researchers remained barred from contacting the family directly.

Johns Hopkins, for its part, has said that it never patented the HeLa cell line and never sold or profited directly from distributing it — it gave the cells away for research, and other institutions and companies built commercial products and profitable businesses from there. The hospital has since named a research building after Henrietta Lacks, and in 2018 the Smithsonian’s National Portrait Gallery unveiled a portrait of her, painted by artist Kadir Nelson, as part of an exhibition on women who changed American history — “the mother of modern medicine,” as one of the accompanying descriptions called her. Critics, including some of her own descendants, have said that recognition is not the same as accountability, and that for decades institutions that profited from products built on HeLa cells never consulted the family at all.

In 2021, Henrietta’s estate filed suit against Thermo Fisher Scientific, one of the many biotechnology companies that had manufactured and sold HeLa-derived cell products for years, arguing that the company had been unjustly enriched by using her tissue without ever obtaining consent or paying her family. Thermo Fisher sought to have the case dismissed on procedural grounds; the family’s lawyers argued the company’s continued use and sale of the cells meant the harm was ongoing, not a single event from 1951. The case moved through federal court in Baltimore for two years. On August 1, 2023 — what would have been Henrietta Lacks’s 103rd birthday — both sides announced they had reached a settlement. The terms were kept confidential, and both parties said they were glad to resolve the matter.

No dollar figure, no court ruling, and no museum portrait can fully square the ledger here. A woman who picked tobacco as a child, worked hard, raised five children, and died in pain at 31 became, without her knowledge or consent, one of the most important research materials in the history of modern medicine — present in vaccine development, cancer research, cloning, spaceflight biology, and COVID-19 studies, decades after her death, while her own family went without the medical insurance that might have changed the outcome of their own health crises. Her cells crossed oceans and left the atmosphere before anyone outside a small circle of researchers knew her actual name.

The Cells That Never Asked Permission

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