This story is a collaboration with Biography.com.
In March 2024, Tuskegee University unveiled a monument commemorating Henrietta Lacks
and her contributions to the fight against polio. Just days later, submissions closed for the Henrietta Lacks Hometown Initiative’s contest to design a memorial in her native Halifax County, Virginia.
It’s not surprising that Lacks, whose “immortal” HeLa cells were pivotal in developing treatments for diseases such as polio, HIV/AIDS, and COVID-19, continues to be honored more than 70 years after her death. But Lacks’ legacy is complicated due to the ethical concerns surrounding the use of her special cells.
Lacks, who died of cancer at age 31 in 1951, was never aware that her cells led to significant medical advancements—or that they were taken without her consent. And even now, her strange case raises questions about the the morally dubious methods through which we achieved unquestionably positive breakthroughs in medicine.
The Immortal Life of Henrietta Lacks
Though her cells live on in labs across the world, Henrietta Lacks’ life was short and full of challenges, and she remained largely unrecognized during her lifetime. It wasn’t until author Rebecca Skloot investigated the origins of the famous HeLa cells that Lacks’ story gained widespread attention with the bestselling 2010 book, The Immortal Life of Henrietta Lacks.
Thanks to Skloot and the descendants of Lacks, who have worked to retell her story through initiatives like HeLa100, we now know more about the life of the woman often referred to as “the mother of modern medicine.”
On August 1, 1920, Lacks was born in Roanoke, Virginia. According to Biography, following her mother’s death in 1924, Henrietta moved to her grandfather’s log cabin, a former slave quarters on a plantation. There, she lived with her cousin, David “Day” Lacks. At 14, she gave birth to their first child, Lawrence, and the couple married in 1941. Before moving to Maryland, they had a second child, Elsie, in 1939, and later expanded their family with three more children: David Jr., Deborah, and Joe.
Henrietta had been experiencing “abnormal pain and bleeding in her abdomen” when she visited The Johns Hopkins Hospital in Baltimore on February 1, 1951. Lacks had to travel to Hopkins for treatment because, as Hopkins Medicine’s own website notes, at the time, the hospital “was one of only a few hospitals to treat poor African-Americans.”
Lacks was quickly diagnosed with cervical cancer by physician Howard Jones. She received radium treatments there, and without her consent, doctors extracted two cervical samples. Despite treatment, her condition worsened, leading to her readmission to the hospital on August 8. Lacks passed away on October 4, 1951, and was laid to rest in an unmarked grave in Clover, Virginia, where she spent her early years.
But unbeknownst to Lacks, or her family, the cervical samples taken without her consent revealed something extraordinary.
Lacks’ tumor cells were sent to the lab of Dr. George Otto Gey, a prominent cancer researcher. Gey collected cells “from all patients—regardless of their race or socioeconomic status—who came to The Johns Hopkins Hospital with cervical cancer,” according to the hospital’s website. But unlike previous samples that died within a day or two, Lacks’ cells amazingly doubled in number every 20 to 24 hours.
That discovery led to a medical revolution. As Biography summarizes:
“Gey isolated and multiplied a specific cell, creating a cell line. He dubbed the resulting sample HeLa, derived from the name Henrietta Lacks. The HeLa strain revolutionized medical research. Jonas Salk used the HeLa strain to develop the polio vaccine, sparking mass interest in the cells. As demand grew, scientists cloned the cells in 1955.
Since that time, over 10,000 patents involving HeLa cells have been registered. Researchers have used the cells to study disease and to test human sensitivity to new products and substances. More recently, the cells enabled the development of COVID-19 vaccines.”
It took nearly two decades for the Lacks family to learn about their relation to the immortal HeLa cells. During that time, the cells’ origin was mistakenly attributed in the media to fictitious names such as “Helen Lane” or “Helen Larson.”
In February 2010, Johns Hopkins addressed ethical concerns about the acquisition of the initial HeLa cells in a statement:
“It’s important to note that at the time the cells were taken from Mrs. Lacks’ tissue, the practice of obtaining informed consent from cell or tissue donors was essentially unknown among academic medical centers. Sixty years ago, there was no established practice of seeking permission to take tissue for scientific research purposes.”
But that’s not quite the full story. Skloot’s research in The Immortal Life of Henrietta Lacksrevealed that additional cell samples were taken from Lacks beyond the initial two.
Lacks’ cells were special, but by the time Gey hoped to collect more samples, she had died. “Though no law or code of ethics required doctors to ask permission before taking tissue from a living patient,” Skloot wrote, “the law made it very clear that performing an autopsy or removing tissue from the dead without permission was illegal.”
After Lacks’ death, doctors sought consent from her husband, Day, to perform an autopsy, but he initially refused. When they approached Day a second time, suggesting that the autopsy could yield test results that might benefit their children in the future, Day relented and gave his permission. Unfortunately, the promised test results were never provided to the Lacks family.
Johns Hopkins maintains that the obfuscation wasn’t for financial gain. The university says, “Johns Hopkins has never sold or profited from the discovery or distribution of HeLa cells and does not own the rights to the HeLa cell line. Rather, Johns Hopkins offered HeLa cells freely and widely for scientific research.”
But other companies have financially benefited from the HeLa cells. Notably, Thermo Fisher Scientific reached a settlement with the Lacks family in 2023 over products related to the HeLa cell line, as reported by NPR. This settlement acknowledges the commercial use and financial gains derived from Lacks’ cells.
Dr. Gey’s actions, which were typical of an era when the potential benefits to many patients took precedence over the rights of individual medical research subjects, could have been driven by the belief that prioritizing consent might impede scientific progress. It wasn’t until 15 years after Lacks’ cells were harvested that a landmark research paper changed that belief.
The Evolution of Medical Ethics in America
Ethical standards in American medical science have dramatically evolved over the past century, notably in the attitude toward eugenics, which is the science of promoting desirable qualities in the human race, usually through some kind of controlled breeding.
“When most people think of eugenics, they think of the unspeakable acts of Adolf Hitler and Dr. Josef Mengele,” Dr. Marilyn M. Singleton wrote in an article for the Journal of American Physicians and Surgeons. “But history tells us that some of America’s best and brightest promoted eugenics as settled science and necessary for the preservation of society.” (For example, Harvard professor W.E.B. DuBois supported selective breeding within the Black community, birth control pioneer Margaret Sanger advocated for “negative eugenics,” and even the NAACP ran “Better Baby” contests to fund its anti-lynching efforts.)
After World War II, the revelation of Nazi medical crimes during the Doctors’ Trials at Nuremberg, including the experiments by Mengele, radically changed American views on eugenics and led to the Nuremberg Code, which prioritized voluntary consent in medical research. But the U.S. didn’t legally adopt the Nuremberg Code, nor immediately recognize the similarities between Nazi human experiments and its own practices, such as collecting Lacks’ cells without her consent.
In 1966, two decades after the start of the Doctors’ Trial, and 15 years after the death of Henrietta Lacks, Dr. Henry K. Beecher published a paper in The New England Journal of Medicine titled, “Ethics and Clinical Research.” It’s also known within medical circles today colloquially as “Beecher’s Bombshell.”
The paper criticized the use of unwitting patients in experiments that offered no benefit and often harmed them, detailing 22 shocking cases including soldiers given placebos for rheumatic fever based solely on their serial number, and patients being injected with live cancer cells without their informed consent.
The experiments chronicled in Beecher’s report rocked the medical world, since these were conducted not by German men on trial, but by respected institutions, prestigious scientists, and the U.S. military. Years later, the Office of Human Research Protections stated that this paper contributed to “the impetus for the first [National Institutes of Health] and [Food and Drug Administration] regulations.”
Beecher’s paper strongly advocated for informed consent, challenging the prevailing notion among some circles that ethical scrutiny could hinder scientific progress.
How We Remember Henrietta Lacks
The story of Henrietta Lacks is often framed by the medical breakthroughs that her immortal cells facilitated, with a focus on the collective benefit rather than the ethical missteps that scientists took, and her family’s ignorance and lack of compensation. But decades before Lacks’ story became widely known, Beecher already argued against this idea:
“An experiment is ethical or not at its inception," Beecher concludes, “it does not become ethical post hoc—ends do not justify means. There is no ethical distinction between ends and means.”
It’s impossible to say whether Henrietta Lacks would have consented to the use of her cells, especially with the knowledge of the remarkable medical achievements they’d unlock—achievements even the doctors who collected the cells couldn’t have predicted.
We know now that those HeLa cells changed medicine forever, and though some tried to obscure their origins, Henrietta Lacks is immortalized in medical history. But we also know now that, regardless of the laws at the time, it should have been Lacks’ choice whether she was immortalized at all. If only someone had thought to ask.
Michael Natale is the news editor for Best Products, covering a wide range of topics like gifting, lifestyle, pop culture, and more. He has covered pop culture and commerce professionally for over a decade. His past journalistic writing can be found on sites such as Yahoo! and Comic Book Resources, his podcast appearances can be found wherever you get your podcasts, and his fiction can’t be found anywhere, because it’s not particularly good.
