Henrietta Lacks: A Moral Wrong That May Never Be Righted
Her name may not be a household name, but ‘HeLa cells’ from Henrietta Lacks's cervix changed the world.
On Jan. 29, 1951, a young woman named Henrietta Lacks visited The Johns Hopkins Hospital in Baltimore, complaining of painful vaginal bleeding. She was examined by a gynecologist named Dr. Howard Jones and the diagnosis was devastating: Lacks had a large, malignant tumor on her cervix. It was cancer.
Johns Hopkins was one of the few medical institutions in the U.S. at that time that treated low-income African Americans like Lacks, and she was able to begin treatment right away. And that's where the second part of this story begins.
Lacks’s medical records show that she initially underwent radium treatments—common for cancers at the time. But her records also show that—without her knowledge or consent—a sample of Lacks's cancer cells, collected during a biopsy, was sent to a tissue lab, managed by a Dr. George Gey.
What happened to Lacks’s cells in Gey’s lab would forever change the course of medical research. Her cells would be used over and over again in scientific experiments, vaccine development and, at various points, would even be sold by labs for financial gain. Today the world has Lacks (and her cells) at least in part to thank for the polio and Covid-19 vaccines; for research on Parkinson’s, AIDS, HPV, cancer and leukemia. Lacks's cells have been used to study the effects of zero gravity in space. They have, in short, fundamentally redefined the parameters of science.
But the taking of those cells for commercial gain demonstrates an exploitation of an individual, a breakdown of moral and ethical codes even despite the fact that medical consent was not really practiced at the time. (Indeed it was not even until the late 1950s that phrase was used.) Still by today’s standard it wouldn’t just be immoral, it would be illegal.
A Medical Game Changer in the 1950s
Gey, a seasoned expert on cancer, had been collecting cancerous cervical cells from patients for years. But every sample he’d collected thus far had died quickly in his lab. Observing Lacks’ cancer cells, however, he noticed something remarkable. The cells didn’t just survive; they doubled every 20 to 24 hours. It was the closest thing to a medical miracle Gey had ever seen.
It also meant, of course, that the cancer cells still within Lacks’ body were particularly pernicious. In August 1951, having undergone the initial radium treatment and then several follow-up X-ray treatments, Lacks complained of severe abdominal pain during one of her appointments. She received blood transfusions and ended up staying at the hospital for several weeks. Lacks died on Oct. 4, 1951, barely nine months after her diagnosis. She was 31 and left behind five children. An autopsy revealed that her cervical cancer had metastasized throughout her body.
While Lacks was fighting her cancer, the medical world, unbeknownst to Lacks, was learning about her remarkable cells—later nicknamed “HeLa cells” in reference to the first two letters of her first and last names.
In the decades after Lacks’ death, her cells were cultivated and to this day they're used by researchers to study the effects of toxins, drugs, hormones and viruses on cancer cells. Their discovery meant that experiments could be conducted on the cells themselves rather than directly on humans. Genetically modified variants of the cells were later commercialized and sold in batches for $10,000.
Lacks’s family, meanwhile, only became aware of the commercial value that was being derived from her cells when scientists from Johns Hopkins University Hospital requested familial blood samples in 1973 following contamination of the original cells.
A Long-Overdue Reckoning
An editorial published in the journal Nature in 2020 powerfully sums up the morally problematic case of Lacks and her revolutionary cells: “The story of Henrietta Lacks [...] illustrates the racial inequities that are embedded in the U.S. research and health-care systems. Lacks was a Black woman. The hospital where her cells were collected was one of only a few that provided medical care to Black people.”
The editorial continues: “None of the biotechnology or other companies that profited from her cells passed any money back to her family. And, for decades after her death, doctors and scientists repeatedly failed to ask her family for consent as they revealed Lacks’s name publicly, gave her medical records to the media, and even published her cells’ genome online.”
In recent years—and especially as the Covid-19 pandemic and the #BlackLivesMatter movement helped catalyze a collective reckoning with past racial injustices—some attempts have been made to pay tribute to Lacks and to her family—to make up for what some have termed the exploitation of her cells.
In 2023, the Lacks family reached a settlement, the terms of which were not made public, with the Massachusetts-based science and technology company Thermo Fisher Scientific that the family said used her cells to develop products it then sold for a profit. (Johns Hopkins, by contrast, had distributed them for free.)
What Might Have Been Forgotten
The exploitation of Henrietta Lacks as a case study hardly stands alone.
There are other examples of practices that catalyzed considerable change to medical regulation and ethical frameworks, most egregiously the Untreated Syphilis Study at Tuskegee.
Conducted between 1932 and 1972 in Alabama, and enrolling only Black men, the study was ostensibly designed to observe what happens when syphilis is left untreated. Researchers did not collect informed consent from participants and they didn’t offer treatment to study participants who had syphilis, even after it had become easily available—a clear violation of human rights. Many participants suffered and died.
In 1972, after a news article appeared revealing the abhorrent conditions in which the study participants were being held, the study was finally ended. There was mass public outrage, and the National Association for the Advancement of Colored People launched a class action lawsuit against the United States Public Health Service, which had conducted the studies. Two years later, it settled the suit for $10 million and agreed to pay the medical treatments of all surviving participants and infected family members, the last of whom died in 2009.
In 1997, President Clinton issued a formal presidential apology. In it he acknowledged that “the United States government did something that was wrong—deeply, profoundly, morally wrong,” adding that “it was an outrage to our commitment to integrity and equality for all our citizens.”
In the case of Lacks, her cells that went on to change the parameters of the medical world, but who is to say how many other patients' exploitations have been entirely forgotten, obscured by history, because their cells or bodies did not yield anything of widespread interest? How often do we hear any of the names of the men who suffered through the Tuskegee study?
Can It Ever Be Made Right?
Johns Hopkins has, in recent years, become more public about the role that it played in Lacks’s story. An article on its website reads: “Having reviewed our interactions with Henrietta Lacks and with the Lacks family over more than 50 years, we found that Johns Hopkins could have—and should have—done more to inform and work with members of Henrietta Lacks’s family out of respect for them, their privacy and their personal interests.”
It adds: “Though the collection and use of Henrietta Lacks's cells in research was an acceptable and legal practice in the 1950s, the laws protecting research subjects have evolved. We at Johns Hopkins have been supportive of legal changes since 1951 that protect research subjects, and we are compliant with these requirements, including those related to informed consent.”
At the end of October 2024, Johns Hopkins University and Johns Hopkins Medicine, joined by descendants of Henrietta Lacks, broke ground on what will become a new building to honor Lacks.
There has been other recognition, too. In 2010, a New York Times bestselling book about Lacks’s life was published. It later won a slew of awards, introducing many to the remarkable and immortal life of Henrietta Lacks. A movie followed in 2017 starring Oprah Winfrey and Rose Byrne. In 2021 and 2023, statues of Henrietta Lacks were unveiled in Bristol, England, and Roanoke, Virginia, respectively. Also in 2021, the World Health Organization honored Lacks for her contributions to science and medicine.
Is it justice? Not quite. But is it a start? Opinions will, as always, vary.
As for us, we can do our part by remembering and retelling the story of one very remarkable mother, a wife and daughter—a woman who loved to wear red nail polish, who loved to cook, and who just happened to change the world. A woman named Henrietta Lacks.
Ruchika T. Malhotra
Josie Cox
Emma Haslett
