A massive bestseller when it was published in 2010 and the basis for an HBO miniseries of the same name, The Immortal Life of Henrietta Lacks tells the story of Henrietta Lacks, a young African-American woman killed by a particularly vicious form of cancer, and her incredible cancer cells, which opened up entirely new directions in scientific research due to their “immortality”—their capacity to grow rapidly and unstoppably outside of her body.
The author of the book, science reporter Rebecca Skloot, spent 10 years researching Henrietta Lacks, her family, and the scientific advances her indefatigable cells made possible. In the course of her reporting, Skloot became close with Deborah Lacks, Henrietta Lacks’s daughter, and much of The Immortal Life of Henrietta Lacks is devoted to Deborah’s struggles with her mother’s absence and scientific legacy.
Loretta Pleasant, called Henrietta, was born in 1920 in Roanoke, Virginia, and raised in a small town in Virginia called Clover. At fourteen, she gave birth to her first child, a son named Lawrence; the father was her cousin, David “Day” Lacks. Four years later, she had a second child by him named Lucile Elsie, whom everyone called Elsie and who evidenced traits of a developmental disability. (Elsie would later be institutionalized.)
Day and Henrietta were married in 1941, and shortly thereafter, they moved to Turner Station, a booming industrial neighborhood in Baltimore. They had three more children—David, Jr. (Sonny), Deborah, and Joe (later Zakariyya)—the last in 1950.
In 1951, Henrietta went to Johns Hopkins Hospital after discovering a lump on her cervix. Her doctor took a sample of the lump for a biopsy. The tumor proved malignant, and Henrietta began to undergo radiation treatments—which, at the time, consisted of radium plaques placed directly on the tumor. The surgeon performing the initial treatment, without telling Henrietta, excised two slivers of tissue from her tumor for a researcher at Hopkins named George Gey.
Growing human cells in “culture”—i.e., in test tubes in the lab—had been an elusive advance for scientific researchers; most human cells lasted a few days then died. Henrietta’s cells, however—dubbed “HeLa” by Gey’s lab technician—grew at a constant rate, doubling every 24 hours. Suddenly Gey had an inexhaustible supply of human cells on which to conduct experiments.
Henrietta’s cancer, meanwhile, seemed to be responding well to the radiation. The initial radium treatment had shrunk the tumor, and subsequent X-ray treatments caused the tumor to disappear entirely. Unfortunately, the radiation had a gruesome side effect: it burned the skin of her torso black.
Sometime after her course of treatment ended, Henrietta began to feel aches in her abdomen. Initially the doctors found nothing wrong, but after Henrietta returned to Hopkins several times, a doctor ordered an X-ray and found a mass blocking her urethra. It was inoperable. In a matter of weeks tumors colonized her body, and she was admitted to the hospital to undergo treatment to ease her pain and perhaps prolong her life. She died on October 4, 1951, less than a year after she first visited Hopkins.
After an autopsy, during which more samples were taken from Henrietta’s body without her family’s informed consent, Henrietta was buried in Clover in an unmarked grave.
In a cruel twist, as Henrietta’s health declined, HeLa cells were energizing cell research. George Gey had developed effective and reproducible cell culturing and preservation techniques, and he was sending HeLa cells all over the world.
Around the same time that Henrietta was buried, an ambitious study was launched to prove the effectivity of Jonas Salk’s polio vaccine. The study necessitated a tremendous number of cultured human cells—HeLa cells, initially provided by George Gey and grown in massive quantities at the Tuskegee Institute, the renowned black university.
HeLa cells were subsequently used in an array of research—genetics, virology, infectious and sexually transmitted diseases, even cosmetics. HeLa cells were the first cells to be cloned, and they were bombarded with radiation to see how they responded (it was the Cold War era, after all). They were also the first cells to be cultured commercially, for profit.
The Lacks family was oblivious to the scientific and commercial value of Henrietta’s cells—they didn’t even know her cells had been taken. While HeLa was growing all over the world, the Lacks family was dealing with the aftermath of Henrietta’s death.
Perhaps the most destructive outcome of Henrietta’s death was that Henrietta’s adult cousin, Galen, and his wife, Ethel, moved in with the Lackses. Deborah, only ten years old, was physically abused and pursued sexually by Galen, and all the children, but especially Joe, were beaten by Ethel. Ethel’s abuse of Joe would cause permanent emotional damage: Joe, who would later change his name to Zakariyya in jail after being found guilty of murder, would struggle with anger his entire life.
Having escaped Ethel and Galen by moving in with her brother Lawrence, Deborah had her first child at 16 and married the father when she was 18. After the birth of their second child, Deborah’s husband began using drugs and physically abusing her. When she started to contemplate killing him, she knew she had to leave; she took her children and moved back in with her father.
During this same period, while Henrietta’s children suffered, her cells were at the heart of a sequence of scientific crises both ethical and institutional.
In the early 1960s, a cancer researcher at Sloan-Kettering began injecting both cancer-afflicted and healthy patients with HeLa cells to determine their effects on human beings. Controversially, the doctor did not adequately explain—if he explained at all—what he was doing to the patients. When the doctor partnered with the director of medicine at a Jewish hospital in New York to inject its patients with HeLa, three doctors at the hospital objected and informed the press. The objecting doctors were steeped in the “Nuremberg Code”—the set of guidelines drafted for scientific researchers after the discovery of atrocities committed by Nazi doctors.
Then, in the mid-1960s, a geneticist shocked a cell-culture conference by presenting evidence that many of the ostensibly discrete cell lines which scientists had succeeded in culturing were actually HeLa—because of HeLa’s ubiquity and malignancy, it had contaminated most other cell lines. The discovery undermined an array of recent theories of cell behavior and negated decades of work and millions of dollars of funding.
The news surrounding HeLa in this era wasn’t all bad, however. HeLa cells were shot into space on both Russian and American satellites, and they were even fused with chicken and mice cells!
It was only in 1973 that the Lackses began to learn what had been done with Henrietta’s cells. A geneticist’s assistant called the family out of the blue to draw blood—the geneticist was attempting to fight the rampant HeLa contamination of cell cultures—and told Day that Henrietta’s cells were still living. However, Skloot’s reporting uncovered that the family didn’t fully understand either the significance of Henrietta’s cells or the geneticist’s reason for drawing blood. The family believed they were being tested for cancer—an impossibility at the time—not helping scientists in the fight against cell line contamination.
In 1975, a Rolling Stone reporter writing a story on the widespread contamination of cell lines with HeLa reached out to the family. He discovered that their understanding of HeLa was piecemeal at best and tried to explain cell science to them as well as he could. When the article came out, Lawrence and Sonny Lacks became even more interested in their mother’s cells: The article alluded to commercial businesses that sold vials of HeLa cells. (As of 2009, a company called Invitrogen was selling HeLa-derived products for anywhere from $100 to $10,000 per unit.)
Deborah, meanwhile, was simply trying to increase her knowledge about what had happened to her mother. She sought answers in biology textbooks and dictionaries and wrote wrenching diary entries that found her imagining the pain her mother endured while being treated.
When the article appeared in 1976, it had a major impact in the wider culture. It was the era of the Black Panthers, and scholars and activists had uncovered widespread abuses of research subjects and medical patients on the basis of their race. The Lacks family themselves had grown up in the shadow of Hopkins, hearing about “night doctors” who snatched African-Americans off the street for gruesome experiments. The cultivation of Henrietta’s cells without her or her family’s consent—and the economic difficulties of her kin—became a testament to the persistent power disparities between Blacks and Whites in the U.S.
The Lacks family continued to struggle in the 80s. Deborah’s son Alfred Jr. had been arrested several times although he was only 18; Zakariyya had been released from prison early, but he had trouble keeping a job and often slept on the street; and Deborah came across an article that detailed the suffering of Henrietta’s final days—somehow the author was given access to Henrietta’s medical records—which caused Deborah to have an emotional breakdown.
Although the family wasn’t aware of it, a lawsuit filed in 1984 had direct relevance to their situation. A patient with a rare kind of leukemia had had his cells removed and cultured without his informed consent, and his doctor had entered into million-dollar agreements to develop commercial products from the patient’s cell line.
The case eventually landed in the California Supreme Court, where the judges ruled in favor of the doctor. They determined that, once cells are removed from a person’s body, they’re no longer that person’s property, and that granting people’s ownership over their cells would hamper scientific research.
The court did agree with the patient on two points, however: The patient should have been informed of his doctor’s financial interests, and the doctor breached his fiduciary duty by misleading his patient.
In 1996, finally, the Lackses began to receive recognition on behalf of their mother. The BBC produced a documentary about Henrietta, for which the producers interviewed the Lacks family; and that same year, Roland Pattillo, one of George Gey’s few students of color, organized a HeLa conference at Morehouse School of Medicine. The Lackses attended the conference as guests of honor, and Deborah gave a speech to the attendees.
Around this time, Deborah was contacted by a con artist named Sir Lord Keenan Kester Cofield. Claiming to be a doctor and a lawyer as well as a distant relative of Deborah, he convinced her that Hopkins was guilty of medical malpractice and that the Lacks family was entitled to compensation. Soon Cofield was researching Henrietta’s case in the Hopkins archive and asking Deborah to grant him access to Henrietta’s medical records.
Hopkins staff became suspicious of Cofield and, after discovering his criminal history, notified Deborah. She signed documents denying Cofield access to her mother’s records. When Cofield found out, he sued the Lackses and Hopkins for a number of offenses. Hopkins handled the case on Deborah’s behalf, and it was dismissed. But the stress had taken a toll on Deborah: She suffered another breakdown, this time needing hospitalization for extremely high blood pressure and hives.
Skloot first reached Deborah a few weeks after she came home from the hospital. At first she seemed eager to help with Skloot’s project, but then she reconsidered and refused to talk to Skloot for a year. In the meantime, Skloot managed to interview Day, Sonny, and Lawrence and his wife; and she traveled to Clover and spoke with some of Henrietta’s surviving relatives. Every time she learned something new about Henrietta, she left a message on Deborah’s answering machine.
Deborah finally agreed to meet Skloot in 2000. They bonded almost immediately, and shortly thereafter Deborah took Skloot to meet Zakariyya. Even as Skloot and Deborah became friends, though, Deborah would occasionally become paranoid, accusing Skloot of working for Hopkins or trying to benefit financially off the family. And Zakariyya, for his part, resented the fact that medicine had gained so much from HeLa, but no one in his family could afford the medical procedures they needed. Although Deborah shared with Skloot most of the materials she’d accumulated on her mother, she refused to show Skloot her mother’s medical records.
In an attempt to allay Deborah’s fears, Skloot began inviting her on reporting trips. Skloot took Deborah (and Zakariyya) to see their mother’s cells at a Hopkins lab; and, in 2001, Skloot and Deborah traveled together to Crownsville, Maryland, where Elsie, Deborah’s older sister, had lived most of her life in what was then called the Hospital for the Negro Insane. (Deborah only knew the slightest details about her older sister.) Even though most of the records from the fifties and before had been destroyed, one of the few surviving volumes held an autopsy report for Elsie. Miraculously, it included a picture of Elsie. It was not a pleasant image, however: Elsie was visibly distraught, and her head was held at an unnatural angle by a pair of white hands.
At a hotel between Crownsville and Clover, Deborah finally allowed Skloot to look at her mother’s medical records. The records were in total disarray, and Skloot set to organizing them. At a certain point in the night, after having stared at Elsie’s picture for hours, Deborah asked about a word in Elsie’s autopsy report. When Skloot defined it, Deborah said she didn’t want the word to appear in Skloot’s book. Skloot smiled at Deborah’s protectiveness and agreed, but Deborah misunderstood. She accused Skloot of lying and shoved her up against a wall. Skloot, losing her patience, cursed at Deborah. They made up almost immediately, but Skloot was on her guard.
The next day, they drove to Clover. Overnight, Deborah had broken out in hives, and she swigged Benadryl from the bottle throughout the day. In Clover, at Deborah’s aunt’s house, it became clear that Deborah was manic—she paced and talked in an incoherent stream. Finally Gary, her cousin, rose from his chair, grasped Deborah’s head between his hands, and pulled her into an embrace. He begged God to release Deborah from the burden of her mother’s cells. After his prayer, Deborah felt better; but when she returned to Baltimore to see a doctor about her hives, the doctor told her her blood pressure was so high, she was in danger of having a stroke.
Shortly thereafter, and five days after 9/11, Deborah suffered a stroke during a church service. She survived and recovered fully.
In 2009, Skloot drove to Clover to conduct further research only to find the town had been razed. She called Deborah, with whom she’d only intermittently been in touch. In 2006, Deborah had gotten divorced from her second husband and was living on $732 a month from social security. When Skloot found Deborah’s voicemail box full, she called Sonny. Sonny told her that Deborah had died in her sleep just a week before.
With regard to the ethics of removing tissue samples and culturing cells, not much has changed from when Henrietta’s cells were excised in the 1950s. As of 2009, doctors still did not need to inform the people from whom cells were taken when doing research with those cells. Tissue-rights activists continue to argue that doctors should be required, by law, to acquire informed consent before using subjects’ cells (certain institutions’ guidelines require informed consent, but it’s not the law of the land).
Author Rebecca Skloot was introduced to Henrietta Lacks—or, rather, her remarkable cells—in a biology class when Skloot was 16.
Her teacher was describing the parts and functions of cells. Cells resemble nothing so much as fried eggs: the white of the egg is the cytoplasm, which contains water and proteins to nourish the yolk of the egg—the nucleus—which contains the genetic material that dictates the cell’s function.
Cells divide through a process called mitosis. If something goes wrong during mitosis, even something minuscule, it can result in a cell growing and dividing uncontrollably—cancer.
Scientists’ understanding of how cancer operates increased enormously through the study of a particularly robust set of cancer cells taken from an African-American woman named Henrietta Lacks, who died in 1951 from cervical cancer. (Henrietta has also been known as Helen Lane and Helen Larson.)
Henrietta’s cancer cells reproduced unlike any other cells in human history. Whereas all human cells prior to Henrietta’s died when removed from the human body and placed in a test tube or petri dish, Henrietta’s reproduced consistently and continuously in culture: They were “immortal.”
Henrietta’s cells, dubbed “HeLa” (pronounced hee-lah) cells, have been used widely in scientific research. They were integral to the development of drugs to treat diseases like herpes and Parkinson’s and to the study of ailments like STDs and appendicitis. In fact, HeLa cells have been so heavily relied upon that a scientist believes, if you lined up every HeLa cell ever grown, you’d be able to circle Earth three times. (For scale, Earth’s circumference is 131.48 million feet, a single HeLa cell has a diameter of approximately 20 micrometers, and 304,800 micrometers make a foot.)
Skloot’s impromptu introduction to Henrietta’s incredible cells when she was 16 spawned a lifetime obsession. As Skloot studied biology in college and writing in graduate school, she continued to hear about and research Henrietta, discovering that her surviving family (1) didn’t approve of the massive reproduction of HeLa cells and (2) had been researched themselves for reasons unknown to them.
Among Henrietta’s family, one person stood out to Skloot as she performed her research: Deborah, Henrietta’s daughter, whose voice was curiously absent from interviews and articles about the Lacks family.
Henrietta Lacks was born in 1920 in Roanoke, VA, the ninth child of Johnny Pleasant and Eliza Lacks Pleasant. Her birth name was Loretta; no one knows how she ended up being called Henrietta.
Henrietta was descended from slaves. On her father’s side, she descended from slaves owned by a tobacco farmer named Pleasants (the s was later dropped). On her mother’s side, she descended from a white owner of slaves and a former slave who’d continued to work on the Lacks tobacco farm after emancipation as a sharecropper. In their wills, both Henrietta’s white great-grandfather and his brother left land to their black heirs, and white and black Lackses were buried alongside one another in the tobacco farm’s graveyard.
(Shortform note: Skloot uses the word “slaves” rather than “enslaved people” and lowercases “black” and “white” when they denote race. We follow her usage in our summary.)
After Eliza died giving birth to her tenth child, Johnny packed up the entire family and moved them to the Lacks tobacco farm, which was located in Clover, VA.
Because there were so many Pleasant children, they were divided up among the relatives living on the farm. Henrietta, who by this time was four years old, ended up with her grandfather, Tommy Lacks, in the “home-house”—a log cabin with four rooms, gas lanterns, and no running water.
Tommy Lacks had another grandchild under his care at the time: a nine-year-old boy named David Lacks, whom everyone called “Day.” Day’s mother had abandoned him, and his father was an itinerant worker who’d once passed through town.
Day, Henrietta, and their many cousins spent their days farming: feeding and caring for livestock, tending a garden, and harvesting tobacco. Day was allowed to attend school through fourth grade; Henrietta, through sixth.
Although Henrietta had other suitors—she was considered the prettiest girl on the tobacco farm, which was called “Lacks Town”—she bore Day’s first child, a son named Lawrence, when she was 14. (She and Day had shared a room since Henrietta had moved to the farm, and so no one in the family was surprised when they became intimate.) Lucile Elsie, a second child, came when Henrietta was 18.
Elsie, as the daughter was called, suffered from a cognitive impairment. At the time, people referred to her as “simple.”
Henrietta and Day were married in 1941, when they were 20 and 25 respectively. Gladys, Henrietta’s sister, objected to the marriage because she thought Day would be a bad husband.
At the end of the year, a cousin who’d moved to Baltimore paid Lacks Town a visit. He’d gone north to work at the Bethlehem Steel plant at Sparrows Point, and he was living in Turner Station, a community of black steelworkers situated just outside of downtown Baltimore. The war effort, thrown into high gear by the bombing of Pearl Harbor, had created new opportunities for African-American workers—Sparrow’s Point would become the biggest steel plant in the world—and the cousin convinced Day and Henrietta to join him in Turner Station.
Day went first to establish himself and buy a home for Henrietta and the two children. Mere months after Day arrived, the cousin was drafted and gave his savings to Day to help move Henrietta and the kids to Turner Station.
In 1950, before she became pregnant with her fifth child, Joseph, Henrietta told two cousins that she felt a “knot” in her abdomen. Although the relatives suggested Henrietta see a doctor, she didn’t end up going. One of the relatives believed Henrietta didn’t go because she was afraid the doctor would remove her womb and prevent her from having more children. Shortly after Henrietta confided in her relatives, she became pregnant, and talk about the knot faded.
Four and a half months after Joseph was born, however, Henrietta discovered blood in her underwear. She ran a hot bath and performed a self-examination on her cervix. She found a lump next to the opening of her womb.
She told Day that she was bleeding but wasn’t menstruating, and he took her to see a local doctor. At first the doctor thought the lump was syphilis, but the syphilis test came back negative. The doctor recommended Henrietta visit the Johns Hopkins gynecology clinic.
Johns Hopkins had been founded as a charity hospital in 1889. By the 1950s, it was one of the most admired hospitals in the country. It was located in East Baltimore, and its public wards reflected its community: Most of the patients were poor African-Americans unable to pay for medical care. The hospital was also segregated, with black patients confined to colored wards.
(Shortform note: Skloot uses the terminology of the historical moments she’s describing. When her interview subjects use outdated terms like “colored,” she echoes their usage.)
Henrietta visited Johns Hopkins, where she was seen by a gynecologist named Howard Jones. Jones discovered in Lacks’s medical history an array of un- or undertreated illnesses, including asymptomatic neurosyphilis and gonorrhea. There was also abnormal vaginal bleeding and blood in Henrietta’s urine after her last two pregnancies.
Upon examining Henrietta, Jones quickly located the lump, whose color and consistency was unlike any other lesion he’d seen (he described it in his notes as “grape Jello”) Even though Joseph had been delivered at Hopkins scant months before, no one had noted any sort of cervical abnormality, either upon delivery or at Henrietta’s six-week checkup. Which meant the lump had grown exponentially in just three months.
A few days later, Jones received Henrietta’s biopsy results. The pathologists had found Stage 1 epidermoid carcinoma.
Coincidentally, Jones and his superior, an internationally renowned gynecologist named Richard Wesley TeLinde, were currently researching cervical cancer. TeLinde had become a controversial figure among gynecologists due to his aggressive treatment of “noninvasive” carcinomas, which are carcinomas that grow on the surface of the cervix (carcinomas that penetrate the cervix are “invasive”). Whereas most gynecologists in the field believed noninvasive carcinomas (or “carcinoma in situ”) would stay on the surface of the cervix and remain nonfatal, TeLinde believed noninvasive carcinomas could become invasive, and so he often treated them by removing the cervix, uterus, and part of the vagina.
Part of the reason there was disagreement about how to treat noninvasive carcinoma was that it was a relatively new field. Only ten years before Henrietta Lacks saw Howard Jones, a Greek researcher named George Papanicolaou had developed a test—now known as a Pap smear—that enabled doctors to diagnose carcinoma in situ.
Determined to prove that carcinoma in situ could morph into invasive carcinoma, TeLinde embarked on an ambitious study around the time Henrietta first visited Hopkins: He and his team compiled and reviewed the medical records of every Hopkins patient in the past ten years that had been diagnosed with invasive carcinoma to see if noninvasive carcinomas had been present first. Many of the patients in the study were included without their consent: The logic was that patients being treated for free in the public wards—largely African-Americans—“paid” for their treatment by being available to researchers as subjects (again, without their knowledge).
TeLinde’s study found that 62% of patients diagnosed with invasive cancer had tested positive for carcinoma in situ first, proving his hunch correct. But he wanted to seal his argument by comparing healthy cervical cells with both invasive and noninvasive carcinoma cells. If he proved that invasive and noninvasive carcinoma cells behaved similarly in the laboratory, he would have an open-and-shut case for treating them similarly as well. So he cut a deal with a tissue researcher at Hopkins named George Gey (pronounced like “guy”): If TeLinde provided Gey with tissue samples to experiment with, Gey would try to grow them in the lab he operated alongside his wife, a surgical nurse named Margaret.
Henrietta, unbeknownst to her, became one of TeLinde’s and the Geys’ subjects. When she returned to the hospital after receiving her diagnosis—rather than tell Day or her family that she’d been diagnosed with a malignant tumor, she simply told them the doctors needed to evaluate her and give her some medicine—she signed a consent form to be operated on, was subjected to a battery of tests, and eventually treated with radium, the gold standard for cancer treatment at the time. (It was later discovered to cause cancer itself.) Before her surgeon applied the radium to her cervix, however, he took a small sample of both healthy tissue and cancerous tissue and sent it off to the Geys’ lab.
There, a lab assistant put Henrietta’s tissue samples into test tubes designed by George Gey himself. The tubes were specially made to fit in a cylindrical roller drum that would rotate extremely slowly—two or fewer revolutions per hour. The thinking was that cell cultures needed to be in constant motion, like blood and other fluids in the human body, in order for the cells to replicate. The Geys had also experimented with culture media, using everything from chicken plasma to umbilical-cord blood in an attempt to get cells to grow; and Margaret, drawing on her experience in surgical theaters, had instituted strict guidelines for keeping the lab sterile. There was no set method for growing cells in the lab, because no researcher had been able to keep cells alive in culture for more than brief periods.
Henrietta’s cancer cells—labeled “HeLa” cells according to the lab’s sample-naming protocol— however, not only survived, they prospered. (Her healthy cells died after a few days.) The number of cells doubled every 24 hours, forcing the lab assistant to divide them into ever greater numbers of test tubes.
Henrietta, meanwhile, was recovering from her radium treatment. After two days in the hospital, the radium plaques that had been affixed to her cervix were removed, and she was sent home with instructions to return in two and a half weeks for a second treatment.
At first, the radium seemed to have worked. When Henrietta returned to Hopkins for her follow-up treatment, the doctors saw that the tumor had shrunk. And after her second radium treatment, the tumor completely vanished. The doctors were confident enough in her full recovery that they fixed some minor ailments that had been bothering her, for example a deviated septum that had affected Henrietta almost her entire life. Nevertheless, the doctors started Henrietta on X-ray therapy to ensure that they’d killed all the cancer cells.
About two weeks after her second radium treatment, Henrietta began menstruating heavily, and the bleeding wouldn’t stop. She was still bleeding when she began radiation. The bleeding ceased with the radiation, and, incredibly, she seemed not to experience any of radiation therapy’s side-effects (nausea, fatigue). During this stretch of time, Day, whom Henrietta still hadn’t told about the cancer, would drop her off at Hopkins in the morning, then go to work; after her treatment, Henrietta would go to her cousin Margaret’s house to wait for Day to finish his shift and take her home. (Henrietta had told Margaret.)
Near the end of her month of radiation, Henrietta asked her doctor when she would be well enough to have children again. Hopkins protocol was to notify patients that cancer treatment often led to infertility, but it seemed, in Henrietta’s case, the warning wasn’t given. Her medical record quotes her as saying that if she’d known the treatments would make her infertile, she wouldn’t have gone through with them. Henrietta loved her children deeply, and it had pained her to have to give up Elsie to an institution.
There were other physical complications as well. After three weeks of radiation, Henrietta complained of severe pain while urinating, and Day noticed a discharge of his own (which he blamed on Henrietta’s “sickness”). The culprit was gonorrhea; and Howard Jones, Henrietta’s gynecologist, opined that Day had likely given it to her. The radiation had also burned the skin of Henrietta’s abdomen black.
HeLa cells were unlike anything scientists had seen previously. They were truly “immortal”—properly cultured, HeLa cells would grow indefinitely.
The discovery of HeLa came at an important time in the history of cell science. Five years before Henrietta’s cancer cells thrived in Gey’s laboratory, a scandal had come to light involving a Nobel Prize–winning French surgeon named Alexis Carrel.
Although Carrel had won his Nobel for inventing a technique for suturing blood vessels, his notoriety was largely due to his breakthrough in the field of cell culture: He’d managed to maintain living chicken-heart cells in his laboratory.
This feat was greeted with all sorts of hyperbole: that Carrel had found the fountain of youth, that cell culture would lead humans to uncover the secrets to artistic and scientific genius.
Carrel himself, however, wasn’t much interested in the advancement of all humanity. He was a eugenicist and Nazi sympathizer, and he believed his work with cells would allow whites to outlive inferior peoples.
He was also an eccentric who, despite his scientific acumen, entertained mystical and occult beliefs. He thought telepathy and clairvoyance were real; and he turned his apartment into a house of worship, where he would give sermons on medical miracles.
And, as it turned out, he was a charlatan. After he died in 1944 awaiting trial for collaborating with the Nazis, it was discovered that his “immortal” chicken heart wasn’t immortal at all: The original chicken-heart tissue had likely died within days, and Carrel’s culture medium, which itself contained chicken-heart tissues, gave the culture the appearance of everlasting cells.
HeLa cells, on the contrary, were the genuine article. Once Gey made his discovery, he began sending the cells to any cancer researcher who asked for them. In short order, Henrietta’s cells reached scientists in Asia, Europe, and South America.
Of course, the cells’ resiliency, which made them so valuable to researchers, was less welcome in terms of Henrietta’s health. According to Henrietta’s doctors, the radium and X-ray treatments had rid her of cancer; yet she maintained the cancer was spreading: She said she could feel it. She returned to the hospital twice, first with abdominal discomfort, then with an ache along her sides, but the doctors sent her home each time, writing in her record that there was no evidence that her cancer had come back.
(Latter-day research has shown that African-American patients were treated differently from white ones at the time Lacks was under medical care: They were admitted to hospitals at later stages of illness than their white counterparts, and when they were finally hospitalized, they received less pain medication and had higher mortality rates. Henrietta’s doctor says Henrietta received the same care as white patients of the time, but it’s impossible to know for sure.)
A matter of weeks after her second visit, when she’d complained of an ache and the doctors sent her home, Henrietta returned to the hospital with sharp pain in her abdomen and difficulty urinating. A doctor administered a catheter to help her urinate and again sent her home. Two days later she was back, again with pain, and the doctor on duty felt a hard mass when he pressed on her belly. An X-ray revealed a tumor attached to her pelvic wall. When Howard Jones arrived, he declared the tumor terminal and sent Henrietta home to bed.
Shortly thereafter, one week after her 31st birthday, Henrietta was admitted to the hospital. At home she’d suffered from such severe pain that she screamed for God to help her; at her intervening appointments, doctors had discovered tumors on her uterus, urethra, and both kidneys.
She was again treated with radiation, not to cure her but rather to shrink the tumors and ease her pain. It didn’t work. She was also given powerful pain medications, including morphine, but these too were ineffective. Despite the radiation, tumors continued to appear in various parts of her body, her lymph nodes and hip bones among others. A doctor also harvested a tissue sample from her during this time, but her difficulty urinating had increased the toxicity of her body so significantly that her cancer cells were no longer viable in culture.
Day and the children came to visit at first, but the nurses soon told the family that it made Henrietta too upset—she would weep for hours after her family left. Day and the children took to playing on the lawn outside Henrietta’s window so she could watch them.
According to all but one of Skloot’s sources, George Gey never met Henrietta and didn’t come see her while she was dying. One colleague of Gey, however, remembers Gey visiting Henrietta and telling Henrietta that her cells would live on after she died and help save countless lives.
Henrietta died in October 1951. In the two months she was in the hospital, tumors had colonized her body, appearing as high as her diaphragm and lungs, and she’d needed constant blood transfusions because her kidneys were failing. The pain was tremendous. Her last words were to her sister Gladys. She implored her to make sure Day took care of the children.
Upon learning that Henrietta had passed, George Gey asked Henrietta’s doctors to perform an autopsy in the hope of extracting more “immortal” cells. But, whereas doctors could take cell samples from a living patient without permission, autopsies and extracting tissue from the dead did require permission. At first Day denied the doctors that permission, but he eventually relented.
The pathologist removed many of Henrietta’s organs, including her bladder, uterus, appendix, and heart; many of these organs were covered in tumors. The official cause of death was terminal uremia (blood poisoning): Tumors had entirely blocked Henrietta’s urethra, preventing her from passing urine and doctors from inserting a catheter.
Henrietta was buried in Clover. It rained for days leading up to her funeral, and on the day she was buried, as soon as her coffin was lowered into her grave behind the home-house, the sky turned black and a massive gust of wind tore the metal roof of a barn and sent it flying above Henrietta’s grave. The wind was so strong, according to the Lacks cousins that attended the funeral, that it tore one cousin’s cabin out of the ground, killing the cousin inside.
After Henrietta passed, Galen, Henrietta’s cousin, and his wife Ethel moved into the Lacks house in Turner Station to help take care of the children. At the time of Henrietta’s death, there were three children under the age of four—Sonny, Deborah, and Joe—and Lawrence, who was a teenager. (There was also Elsie, Lawrence’s younger sister, who had been institutionalized.)
It was known among the Lacks cousins that Ethel was jealous of Henrietta—Galen reportedly had much preferred Henrietta to Ethel—and Ethel proceeded to take out her anger at Henrietta on Henrietta’s children. Ethel’s abuse took many forms: She starved them, forced them to perform hard labor, and beat them with whatever was at hand—extension cords, shoes, or her fists. Joe, the youngest, received the worst of it. Ethel would tie him up and leave him in the basement for hours on end, even overnight, with instructions to stand on one foot. If she came downstairs and one foot wasn’t in the air, she would whip him.
Lawrence, meanwhile, though only 16, had been drafted into the military (he’d lied about his age to get into the local pool halls, but that lie also made him eligible for the draft). When he returned in 1953, he moved into his own house and so had no idea what Ethel was doing to his siblings. Day, too, was either unaware or in denial—rumor had it he was sleeping with Ethel.
In 1959, Lawrence moved in with his girlfriend, Bobbette Cooper, and she demanded that Lawrence’s siblings come live with them. This saved the boys from Ethel but didn’t save Deborah from Galen, who had begun touching her inappropriately. Deborah was only ten years old at the time, and she saw Galen as a surrogate father (Day was working two jobs, and Deborah felt closer to Galen than Day).
One day, when Deborah was 12, she was walking with a friend named Alfred “Cheetah” Carter when Galen pulled up in his car. He demanded that she get in the car with him. When she refused, he sped off. Soon he returned with Day in the passenger seat. Galen got out of the car, calling Deborah a “whore,” and threw her in the back seat of the car. Once she was in, he punched her in the face, splitting her eyebrow. Day just sat there.
When Deborah got back to Bobbette and Lawrence’s, Bobbette forced Deborah to tell her what had happened. Deborah told Bobbette that Galen had hit her and that he said inappropriate things to her, but she omitted the fact that he had molested her (she feared that Bobbette would kill Galen if she knew). Bobbette immediately went to Galen and Ethel’s house and threatened to kill them if either of them touched a Lacks child again.
Bobbette also told Deborah to fight off her cousins if they ever tried to have sex with her and to wait until she was an adult before she had babies. As Deborah grew, her male cousins did assault her, but she managed to fight them off.
Bobbette believed that Deborah’s sister Elsie’s disability might have had something to do with the fact that Day and Henrietta were first cousins. (All of the Lacks children suffered from hearing loss, which Bobbette also attributed to Day and Henrietta’s relation.) Deborah had long been disturbed by what had happened to her sister: For much of her childhood, Deborah hadn’t even known of Elsie’s existence; and when Day did tell her about Elsie, Deborah was afraid her sister, on account of her ignorance of sign language, had been abused and had no way to tell anyone.
The first major use of HeLa cells was in the fight against polio.
Jonas Salk announced his polio vaccine in 1952, but he couldn’t judge its effectiveness until it had been tested on a massive scale. The National Foundation of Infantile Paralysis (NFIP) developed a trial—it would inoculate 2 million children with Salk’s vaccine and then test the children’s blood for immunity.
To test for immunity, the children’s blood would have to be mixed with cells infected with poliovirus. In the past, these cells came from monkeys, but the extraction procedure killed the monkeys and monkeys were expensive. (Animal rights activism wasn’t as prominent in the 1950s as it is today.)
The NFIP contacted George Gey, who had discovered that HeLa cells could grow “in suspension”—that is, unlike previous cell cultures, which needed a glass surface to adhere to, HeLa cells could grow floating in a culture medium as long as they were continually stirred. This meant that they could grow in large vessels as long as there was ample medium.
Once Gey and a colleague from NFIP determined that HeLa cells were in fact susceptible to poliovirus—some cells were naturally resistant—the colleague was tasked with overseeing an industrial-level operation for growing HeLa cells. This operation was to be housed at the Tuskegee Institute, the renowned black university; the location had been advocated for by Charles Bynum, an executive of the NFIP, who was a science teacher and one of the first black foundation executives in the country.
In a matter of months, the HeLa Distribution Center was up and running. The operation began with six black scientists and technicians, but the staff eventually grew to 35, many of whom were women. The Center produced 20,000 tubes of HeLa cells—6 trillion total cells—a week, and those cells showed Salk’s vaccine to be effective. Ironically, at the same time that black scientists on Tuskegee’s campus were helping the American fight against polio, black Americans suffering from syphilis were being allowed to die on the same campus.
The Tuskegee Syphilis Study
In the 1930s, US Public Health researchers at the Tuskegee Institute were curious about exactly how syphilis killed its carriers. To track the progression of syphilis in the human body, the researchers lured hundreds of syphilitic African-American men to participate in the study with free exams and meals, as well as a burial stipend for their families for when they passed away. These men were largely poor and uneducated, and their deaths were slow, painful, and entirely preventable: The doctors at the time knew that penicillin could cure them.
Once the scientists at the Distribution Center realized there would be no shortage of HeLa cells for the polio study, they began to send the cells more widely and for a variety of studies.
HeLa cells were especially valuable for the study of viruses. Viruses reproduce by modifying the genetic material of the infected cell, and because HeLa cells grew so rapidly, scientists were able to observe viruses’ effects at an accelerated rate.
Using HeLa cells, scientists made a number of advances in a relatively brief period of time, including:
HeLa cells were exposed to high levels of radiation to explore the cellular effects of nuclear fallout—it was the era of the Cold War—and placed in centrifuges to simulate high- and low-gravity. They were also used by cosmetics manufacturers to test their products.
In its effort to standardize the recipe for culture medium and instructions for handling cell cultures, Gey’s lab partnered with a small biological supply company named Microbiological Associates. That company would become the first for-profit cell distribution firm, shipping out HeLa cells for less than 50 dollars a vial to customers like the National Institutes of Health (NIH).
Before long, the Tuskegee Center closed up shop, rendered obsolete by private, for-profit companies selling HeLa cells. And Gey, too, moved on from HeLa, attempting to culture cells from different patients. Intermittently, Gey lamented that HeLa cells had spread so widely—he’d failed to lay claim to his discovery by neglecting to publish his research and by sharing the strain so readily—but HeLa’s spread was well beyond his control.
Naturally, given HeLa cells’ ubiquity and their central role in medical research, journalists began to grow curious about the person from whom the cells were taken. Although no laws governed the release of Henrietta’s name to the press, Gey, Howard Jones, and the rest of Henrietta’s medical team at Hopkins resolved not to reveal her real name to the public—they reasoned that compelling human stories could be written using a fictitious name. A 1953 newspaper article erroneously referred to the patient as Henrietta Lakes, a mistake Gey didn’t correct. He also used a pseudonym for Henrietta when he was interviewed in 1954: “Helen L.” Eventually, though no one’s quite sure how, the name most commonly associated with HeLa cells became “Helen Lane.”
Thus Henrietta’s family, because Henrietta’s real name never appeared in any of the press surrounding the cells, were completely unaware that her cells were still living.
In 1954, a Sloan-Kettering cancer researcher and virologist named Chester Southam who’d worked extensively with HeLa cells began to wonder—and to worry—whether researchers could develop cancer through contact with HeLa cells. And so he began a series of experiments to determine HeLa cells’ effects on living human subjects.
His first experiments were conducted on patients who already had cancer. He injected HeLa cells into these patients’ arms, telling them that he was testing their immune systems, and then monitored the results. Within days, cancerous nodules formed on the patients’ arms. Some of these patients’ nodules went away on their own, others Southam had to remove. But in four patients, the nodules came back again and again after removal; and in one patient, the cancer spread to her lymph nodes.
Despite the obvious health risks, Southam continued to experiment with HeLa cells on human subjects. The shortcoming of the first experiment, according to him, was that it was conducted on patients who already had cancer. In order to get a true sense of the effects of HeLa cells, he needed to test them on healthy patients.
Which he did. In 1956, he recruited 150 inmates in the Ohio prison system to participate in a study similar to his first. (Later, prisoners would be considered a vulnerable population unable to give informed consent.) He injected the inmates with HeLa; but in this instance, the subjects were able to fight off the cancer. In fact, the more HeLa he injected, the more quickly the subjects were able to defeat the cancer.
In subsequent years, Southam injected HeLa cells into 600 people without their consent, some with cancer, some without. If he explained at all to the patient what he was doing, he said he was “testing for cancer.”
In 1963, Southam’s ethically questionable practices finally came to light. He’d partnered with Emanuel Mandel, the director of medicine at the Jewish Chronic Disease Hospital in Brooklyn, NY, to inject 22 patients with HeLa cells, but three Jewish doctors, who knew about the “research” Nazi doctors had performed on their patients as well as the Nuremberg Code, refused.
The Nuremberg Code
In 1947, seven Nazi doctors were sentenced to death by a US-led tribunal for performing monstrous experiments on imprisoned Jews. Among other horrors, these doctors had sewn siblings together in an effort to create Siamese twins and dissected living people to study organ function.
The tribunal proposed an ethical code, composed of ten points, to govern human experimentation across the globe. Dubbed the Nuremberg Code, the document’s first line mandates the “voluntary consent” of any human subject.
The problem was that the principles outlined in the Nuremberg Code weren’t law; in fact, at the time, there were no laws governing scientific research. For, although the notion of “informed consent” had been present in the law since 1957, it only applied to medical procedures, not scientific research.
So, over the objections of the doctors, the director of medicine ordered a resident to deliver the injections. The three doctors resigned and notified the press. Soon enough, the public outcry was vociferous enough to cause Southam’s and Mandel’s medical licenses to be suspended for a year.
Although the suspensions were stayed and Southam’s and Mandel’s punishment was downgraded to probation, the case made the public aware of researchers’ practices. The NIH discovered that only a small portion of their grantee institutions had policies to protect research subjects, and a study in the New England Journal of Medicine revealed that researchers had injected children with hepatitis and exposed anesthetized subjects to poisonous levels of carbon dioxide. In response, research institutions began to create and implement policies that protected subjects’ fundamental rights.
By the time Southam’s and Mandel’s licenses were being reviewed, HeLa cells—and cell cultures—were ubiquitous. HeLa cells accompanied both Russian and American astronauts into space (scientists wanted to study the effects of space travel on human cells). The magazine Scientific American even offered readers instructions on how to culture HeLa cells at home!
HeLa cells were also the impetus for major institutional changes in the way cell cultures were handled. By the 1960s, scientists had begun culturing all sorts of cells from all sorts of species and organs. But despite this diversity of origin, researchers discovered that these cultured cells all met the same end: They either died or spontaneously turned cancerous. And when they turned cancerous, they behaved exactly like HeLa.
A group of major cancer researchers suspected that the reason for this behavior was that the cell cultures were being contaminated somehow, potentially with HeLa cells. This suspicion spurred the NIH to form a Cell Culture Collection Committee (CCCC), which eventually led to the creation of a state-of-the-art cell bank that held uncontaminated samples of cells from their original source. The first deposit was an immortal mouse cell. The second was HeLa.
At the same time that the CCCC was working to identify and preserve unadulterated cells, researchers were stretching the limits of what cells could do in culture.
One especially controversial advance was the development of human-animal hybrid cells. Scientists had discovered that cells could be made to fuse in culture—that is, they would combine their genetic material, much like sperm fertilizes an egg. In 1965, two British researchers successfully fused HeLa cells with mouse cells.
The sensational newspaper headlines predicting hideous mouse people notwithstanding, the hybridization of human and animal cells resulted in significant advances in our knowledge of how genes work. Researchers discovered that, as time went on, the human-mouse hybrid cells would lose their human chromosomes. This behavior enabled researchers to track which chromosomes corresponded to which cell traits (because when a certain cell trait disappeared, researchers could correlate that disappearance to a lost chromosome).
In the 60s, while HeLa cells were occupying a central role in scientific research and being shot into space, Henrietta’s children were struggling with the repercussions of their traumatic childhood.
By 1966, 18-year-old Deborah had embarked on a relationship with Cheetah Carter, the boy she’d been walking with when Galen punched her, and become pregnant with their first child, Alfred, Jr. Deborah’s pregnancy notwithstanding, Bobbette insisted Deborah finish high school and get a job, and Bobbette helped take care of Alfred Jr. so Deborah could do so.
Lawrence, the eldest Lacks child, had a convenience store, and Sonny had joined the Air Force—they were thriving. Joe, however, the youngest, was struggling. The abuse Ethel had heaped on him had caused him to develop severe anger management issues. His tendency to pick fights resulted in his dropping out of high school and, later, getting thrown out of the army.
Back in Baltimore, Joe—who’d earned the nickname “Crazy Joe” around the neighborhood—began to be threatened by a local man named Eldridge Ivy. One night Ivy, who was taller and heavier than Joe, beat him severely for no reason. The following evening, Joe stabbed Ivy in the chest, killing him.
Joe fled to Clover, where he drank heavily and threatened to kill members of his own family. Eventually he decided to return to Baltimore and turn himself in. He was sentenced to 15 years rather than the maximum 30—there is some indication that the judge took his psychological difficulties into account—in a medium-security prison. There, he converted to Islam and changed his name to Zakariyya Bari Abdul Rahman.
Meanwhile, Deborah had married Cheetah. Shortly after the birth of their second child, LaTonya, Cheetah began using drugs and abusing Deborah. He also began selling drugs out of the house in front of their children.
One day Cheetah, drunk and high, began beating Deborah. On a previous occasion when Cheetah hit her she’d threatened him with a knife; now, when he stumbled toward the steps of their apartment, she pushed him down them. When she saw he was still alive, she dragged him outside—it was frigid and snowing—and left him on the ground without a coat to freeze.
When she woke the next morning, she found Cheetah still alive, sitting on their building’s front stoop. He thought he’d been jumped. Deborah put him in bed and then called Bobbette. She told Bobbette that she was going to kill Cheetah in his sleep with a monkey wrench. Bobbette convinced her not to, and the next day, while Cheetah was at work, Deborah and children moved out.
With the creation of the CCCC and its cell bank, the American Type Culture Collection (ATCC), scientists assumed that they’d protected their most cherished cell cultures from contamination.
But in 1966, at a major conference of cell scientists, a geneticist named Stanley Gartler announced that the 18 most-frequently-used cell cultures—which were ostensibly distinct from one another—all exhibited a rare genetic marker that had only been found in African Americans. Since some of these cell cultures had been taken from caucasian subjects, Gartler’s conclusion was that all of the cell cultures had been contaminated—with HeLa.
When Gartler revealed that six of his samples came directly from the ATCC, the mood at the conference shifted dramatically. Many of the scientists had believed they were working on discrete, unique cell cultures, when in fact they were just working on HeLa.
This revelation was especially devastating for scientists working under the assumption that healthy cells could “spontaneously transform” into cancerous ones. If cells could spontaneously become cancerous, scientists could study that process and, potentially, develop a therapy to stop it cold. Now, it was clear that that theory was wrong: Healthy cells didn’t spontaneously become cancerous; they simply became contaminated with HeLa. In the blink of an eye, decades of research and millions of dollars in funding had been rendered worthless.
After the conference, a cadre of the top cell scientists returned to their labs to test their cultures for the marker Gartler had found. Many of the cultures tested positive.
This group’s and Gartler’s findings notwithstanding, many cell scientists simply refused to believe their cultures were contaminated. It wasn’t until 1972 that the scientific community was presented with insurmountable evidence that HeLa contamination was a major threat to cell research, when a Naval researcher discovered that a Russian lab’s culture too was contaminated with HeLa.
With the discovery that HeLa contamination was a global phenomenon, the story made the leap from specialized science journals to the popular press. And with that transition came renewed interest in the woman behind the “immortal” cells.
As it happened, only a year before the Naval researcher discovered that HeLa had crossed the Atlantic, Henrietta’s real name had appeared in print for the first time. Her doctor, Howard Jones, and several of his colleagues had published a tribute to George Gey, who had passed away from pancreatic cancer in 1971. In that tribute, which ran in a little-known obstetrics journal, the authors revealed that (1) Henrietta’s cancer had been misdiagnosed—it was an adenocarcinoma, not an epidermoid carcinoma—and (2) HeLa’s real name was Henrietta Lacks. But it wasn’t until 1973 that Henrietta’s name became widely known: A journalist for Science, one of the most prestigious journals in the world, issued a correction that the “Helen Lane” she’d referred to in her article was actually “Henrietta Lacks.”
The Lacks family discovered Henrietta’s cells were still alive by chance, when Bobbette, in 1973, met a researcher at the National Cancer Institute who was working with HeLa cells and had recently read one of the articles that identified Henrietta. Bobbette immediately told Lawrence, who told Day. When Lawrence called Hopkins to ask about his mother, however, the switchboard operator couldn’t find any records for a patient with that name.
Soon enough, though, Hopkins contacted them. A Hopkins geneticist named Victor McKusick, who’d been one of the authors to first publish Henrietta’s real name, had volunteered to take the lead on addressing the contamination issue that was then upending cell science. His idea was that, if he could draw blood from Henrietta’s descendants, he could isolate certain gene markers that would allow him to determine which cells were HeLa and which weren’t. And since the Lackses were Hopkins patients, he had easy access to their medical records and contact information.
McKusick deputized a postdoctoral fellow named Susan Hsu to collect the blood samples from the Lackses. Hsu was Chinese and had recently immigrated to the United States; English was not her native language, and she spoke with a heavy accent. She called Day and explained that she needed to draw blood from him and his family to locate “HLA markers,” or particular proteins that could be used as genetic identifiers. Day, who’d only had four years of school in his life and spoke with a heavy southern accent that challenged even his own family, did not understand what Hsu was asking for; he thought Hsu wanted to test him and the Lacks children for cancer.
Neither Hsu nor McKusick got informed consent from the Lackses, either. At the time, NIH had mandated that all research it funded involving human subjects required informed consent—McKusick’s research was NIH funded—but the informed-consent requirement had yet to be made law. In fact, only months after Hsu first called Day, a proposed federal law mandating informed consent would be made available for public comment.
A few days after Hsu’s call to Day, the family gathered at Lawrence’s, and Hsu and another colleague drew the Lackses’ blood. Deborah, who was 24 at the time, was petrified: She knew that her mother had gotten cancer at thirty and worried that she would get terminally ill at the same age, leaving her two children motherless.
In the days following Hsu’s visit, Deborah called Hopkins repeatedly to ask about her “cancer results.” The operators could find no record of any test. Deborah’s fears worsened, and she began to worry that, rather than trying to help the Lackses, the Hopkins doctors were causing them harm. She’d read about the Tuskegee syphilis study and Chester Southam (see Part 2: Chapter 6), and she wondered if Hsu had actually infected the family with her mother’s blood to see if they developed cancer.
Her suspicions were helped along by the family’s incomplete picture of Henrietta’s illness. When Deborah asked Day about the timeline and details of her mother’s death, Day told her, essentially, that Henrietta had been perfectly fine up until she started going to Hopkins. It was only after she started receiving treatment that her skin burned and she wasted away.
In June of 1974, Deborah met McKusick for the first and only time. She had been called into Hopkins to give more blood, and she took the opportunity to ask McKusick questions about her mother and why the doctors were drawing blood from the family. Rather than answer her directly, McKusick spoke about the contribution Henrietta’s cells had made to science; he also gave Deborah a copy of a genetics textbook he’d written that featured a section on Henrietta. The language was far too technical for Deborah to understand, but she fixated on the picture of her mother printed in the book; it was one she’d never seen. She wondered how the doctors had gotten a hold of the picture.
Deborah’s blood was drawn for a second time without informed consent or the approval of an internal review board (IRB). The federal law mandating those elements for any federally funded research wouldn’t go into effect for another four days.
It wasn’t until a Rolling Stone reporter named Michael Rogers visited the family in 1975 that the Lackses finally understood the full significance of their mother’s cells.
Rogers knew immediately that the family had been kept in the dark about HeLa contamination and the doctors’ reasons for drawing blood. He explained cell culture and the stakes of the HeLa outbreak to the best of his ability.
At the time, no one besides Deborah was too disturbed by their mother’s cells’ wide spread. But that changed when Rogers’ story was published and the Lackses discovered that HeLa cells were not only distributed for free by nonprofit institutions but also sold by commercial firms.
This revelation caused Sonny and Lawrence to believe that Hopkins and George Gey had gotten rich selling their mother’s cells. The truth, however, was that Gey was a terrible businessman and never rich at all: He patented neither the HeLa cell line nor the roller drum he created to culture cells—either of which would have made him a multimillionaire—and at times had trouble making payments on his modest house. And Hopkins has issued multiple statements asserting the institution has received no financial reward from HeLa cells.
Other entities, however, have made fortunes on HeLa cells. Microbiological Associates, one of the first commercial cell culture companies and earliest sellers of HeLa, was later incorporated by two of the largest biotech companies in the world. One of these companies, Invitrogen, sells HeLa-derived products for anywhere from $100 to $10,000 per unit. And the ATCC, which still exists, currently sells HeLa cultures for $256 per vial.
Deborah, for her part, was more concerned with how her mother had been treated than recouping money. She bought books to educate herself on cell science and recorded heartbreaking journal entries imagining how lonely her mother must have been in the hospital. She also personified her mother’s cells, and every time she read about their being subjected to new diseases and experiments, she imagined it was her mother undergoing those trials.
With the appearance of the Rolling Stone article came further media inquiries, including from publications like Jet and Ebony that were marketed to African Americans. Given the historical moment, when memories of the Tuskegee syphilis study were still fresh and the Black Panthers were accusing the white-dominated medical establishment of racism, a story involving the improper collection and commodification of a black woman’s cells was timely news.
At the same time that Henrietta was becoming a known figure, McKusick and Hsu were publishing the results of their research into the Lacks’ genes. Incredibly, the authors presented the Lackses’ genetic information with labels like “Husband” and “Child 1” alongside Henrietta’s real name, which would allow anyone to know whose genetic information was whose. A breach of privacy like this would, in the present, be a crime under the 1996 Health Insurance Portability and Accountability Act (HIPAA) that could trigger fines of up to $250,000 or jail time.
The Lackses were totally oblivious to McKusick and Hsu’s publication. They didn’t even know that Hsu had drawn blood for a gene study; they thought the doctors were still researching cancer. If the Lackses had known what was going on and had the resources to consult and hire a lawyer, they might have been able to sue Hopkins. Unfortunately, they didn’t. But another human subject who’d been studied without consent, a white man named John Moore, did know what had been done to him; and he was about to bring the topic of scientific ethics into the mainstream.
John Moore was a hard-working surveyor working on the Alaska Pipeline when he discovered he had a rare cancer called hairy-cell Leukemia. This type of cancer caused his spleen to fill with cancerous blood cells.
He was referred by his local doctor to David Golde, a cancer researcher at UCLA, who told Moore that the only option was to remove the spleen. Moore consented, signing a form that allowed the hospital to dispose of any tissue by cremation.
Moore survived and started a new career in Seattle. Every few months, however, between 1976 and 1983, Golde had him fly down to Los Angeles for follow-ups. During these follow-ups, Golde would take samples of everything from bone marrow to semen. At a certain point, Moore got tired of all the travel and asked Golde if he could see a doctor closer to home. Golde offered to fly Moore down and pay for stays at a fancy hotel, an offer Moore thought was strange but accepted.
In 1983, however, when a nurse asked Moore to sign a form relinquishing his rights to any products the University of California developed from his cells, he became suspicious. The first time he was offered the form, he circled “do” and agreed to hand over his rights. When he was offered an identical form on a subsequent visit, he asked Golde if his treatment had commercial value. Golde denied it, but Moore circled “don’t” and retained his rights out of caution.
Almost immediately thereafter, Moore began receiving pressure from Golde to sign over his rights. Moore continued to refuse and notified a lawyer. That was when he discovered that Golde had recently filed a patent on a cell line called “Mo” developed from Moore’s cells, and that Golde was to receive over $3 million from a biotech company to make Mo into a commercial product. Mo’s market value at the time was estimated at $3 billion.
The patentability of biological matter had only recently been established in law. In 1980, a General Electric scientist had engineered a strain of bacteria that consumed oil and had been denied a patent because his “invention” was a living organism. The Supreme Court decided in the scientist’s favor, on account of the fact that oil-consuming bacteria weren’t naturally occurring and their existence was solely due to the scientist’s “ingenuity.”
And Golde had good reason to want to patent Moore’s cells. Although most cell lines contribute little to the study of disease and the development of medicines, Moore’s cells made rare proteins that could be used in cancer therapies. They also carried HLTV, a virus related to HIV, that could contribute to the development of an AIDS vaccine.
Once Moore learned what Golde had done, he sued Golde and UCLA for (1) using his tissue for research without his consent and (2) stealing his tissues. He was the first person in history to assert a claim over his own tissues and sue for damages.
The judge ended up throwing out Moore’s case. Part of his justification involved HeLa: He reasoned that if no one had sued to regain rights to the most famous cell line of all—HeLa—it showed that patients were OK with their cells being used commercially. Moore was an outlier.
After seesawing decisions on appeal, the case was finally decided in Golde’s and UCLA’s favor in 1990, when the California Supreme Court ruled that any tissues separated from one’s body, whether they’re removed with consent or not, cease to be considered the person’s property. They’re considered waste, and whatever someone does with them can be considered the product of “inventive effort.” To rule in Moore’s favor, the Court determined, would hinder scientific advance by eliminating the profit motive from research.
It wasn’t a total defeat for Moore, however. The Court did side with him on the question of informed consent: It found that Golde had failed to inform Moore of Golde’s financial interest and breached his fiduciary duty as a doctor. The upshot was the Court’s recommendation (rather than mandate) that researchers disclose any financial interest in patients’ tissues. But researchers weren’t required to share any financial proceeds with patients (Moore, a case in point, was awarded no profits).
The media attention surrounding Moore’s lawsuit notwithstanding, the Lackses were completely unaware of the legal drama concerning scientists’ obligations when it came to human tissue.
Deborah divorced Cheetah in 1976 and remarried in 1980. Her second husband, James Pullum, was a mechanic, and he’d been a petty criminal before finding Christianity. He’d begun moonlighting as a preacher shortly before he and Deborah wed.
Zakariyya, for his part, had been released from jail early, having served about half of his fifteen-year sentence. He was effectively homeless: His anger issues made keeping a job difficult, and he resented Day so intensely for leaving him to Ethel’s abuse that he refused to sleep in Day’s house. He would often sleep on the steps of a church across the street from Day’s; it wasn’t uncommon for Day to pass his own son sleeping on the concrete when he left the house.
Desperate for money, Zakariyya began volunteering for scientific studies at Hopkins. Among other experiments, he allowed himself to be infected with malaria to test a new drug. The researchers had no idea he was Henrietta Lacks’s son because of his new name.
Sonny, meanwhile, was in jail for selling drugs; and Deborah’s son, Alfred, had been arrested multiple times for crimes like breaking and entering. Alfred enlisted in the Marines but went AWOL, and even a stint in a minimum security prison did nothing to scare him straight: He continued to steal and frequently came home on drugs.
In 1985, while Deborah was struggling to deal with Alfred, she discovered a book written about the scientific community’s effort to contain the HeLa contamination. A chapter of the book drew heavily on Henrietta’s medical records—records which no one in the Lacks family had seen or had permitted others to see. The chapter narrated Henrietta’s excruciating decline and death in vivid detail, causing Deborah incredible anguish.
(When Skloot questioned Michael Gold, the journalist who’d written the book, he claimed that either McKusick or Jones had given him the medical records. When Skloot questioned Jones, Jones couldn’t remember the book or the journalist and denied his or McKusick’s sharing them.)
At the time, medical records weren’t confidential. Although various ethical codes, including the American Medical Association Code of Ethics and the Hippocratic Oath, stipulated that patient information be kept confidential, there was no federal law regarding its confidentiality. And although some states had passed laws of their own to protect patient information, Maryland wasn’t one of them.
Hippocratic Oath
Taken by doctors upon receiving their degree in medicine, the Hippocratic Oath includes several commitments Henrietta’s and her family’s doctors failed to uphold, including provisions for patients’ privacy and economic wellbeing.
“I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.”
While Henrietta’s surviving family was suffering, her cells were still thriving—and helping to study and treat viruses like Human Papilloma Virus (HPV) and Human Immunodeficiency Virus (HIV).
About a year before the appearance of Gold’s book, a german virologist discovered an especially virulent strain of HPV: HPV-18. Once he discovered that the HeLa cells in his lab tested positive for the strain, he requested a sample from Henrietta’s original tissue to rule out the possibility his HeLa cells were contaminated. He found that Henrietta had been infected with multiple copies of HPV-18.
As HPV research progressed throughout the 80s—the German virologist would eventually be awarded the Nobel Prize for developing an HPV vaccine—scientists were able to determine precisely how Henrietta’s cancer started. HPV infects cells by inserting its DNA into its host and causing the host to turn cancerous; in Henrietta’s case, the HPV DNA in her cervical cells turned off a tumor suppressor gene.
Although scientists were able to discover the root cause of Henrietta’s cancer, they were at a loss to explain why her cells flourished so incredibly in culture. Henrietta’s Clover relatives, however, had their own theories: Divine punishment for leaving Clover or original sin, or malevolent spirits. Henrietta’s cousin Sadie even wondered whether Henrietta’s insides had been colonized by something from outer space.
Ironically, some scientists at the time were asking a related question: Were HeLa cells even still human? The scientists argued that HeLa cells, because they’d been reproducing (through cell division) and evolving separately from the human species for so long, had become their own species. (Most scientists dismissed this argument, with one observing that, if Henrietta were still alive and able to provide a sample, her DNA would match HeLa’s.)
HeLa cells also contributed to renewed speculation about the possibility of everlasting life. Whereas healthy human cells inevitably died in culture after dividing about fifty times, cancerous cells—as exemplified by HeLa—divided indefinitely. One indication that healthy cells are nearing their end is the progressive shortening of their chromosomes’ “telomeres”—strings of DNA at the end of each chromosome. In the early 90s, a Yale researcher studying HeLa cells discovered that HeLa produces a particular enzyme that prevents the telomeres from shortening, thereby enabling the cell to continue dividing.
1996 was a triumphant year in the Lacks family story. The BBC began filming a documentary about Henrietta and HeLa, and Roland Pattillo, a gynecologist at Morehouse School of Medicine and one of George Gey’s only African-American students, organized the inaugural HeLa Cancer Control Symposium. The symposium featured research presentations on cancer in minority populations, and Pattillo even managed to get the city of Atlanta to declare October 11, 1996, Henrietta Lacks Day.
The Lacks family was invited to the conference and welcomed as honored guests; people even asked for their autographs. It was a pivotal moment for Deborah, who gave a heartfelt speech about how much she missed her mother.
The BBC filmed the conference, and shortly thereafter visited Turner Station to interview residents about Henrietta. Their presence piqued the interest of Courtney Speed, the owner of a local grocery store and beauty parlor, who’d just founded an organization devoted to raising Turner Station’s profile by touting famous residents of the past.
Speed and a colleague named Barbara Wyche began writing letters to federal and state politicians, as well as the Smithsonian museum, urging them to recognize Henrietta’s contribution to science. After an intimate event at the Smithsonian, which the Lackses attended, a curator advised Speed and Wyche to found a museum in Turner Station devoted to African-American health. Speed and Wyche created the Henrietta Lacks Health History Museum Foundation with Speed as president and began planning events and making Henrietta Lacks merchandise. Deborah wasn’t given an official position in the foundation, but she spoke at the group’s events and grudgingly gave her blessing to their using her mother’s name and fundraising (she hoped their efforts would help her learn more about her mother).
Speed and Wyche’s lobbying on Henrietta’s behalf continued to bear fruit: The Maryland State Senate offered an “official congratulations” to Henrietta Lacks, and, in 1997, a congressman from Maryland paid formal tribute to Henrietta in the US House of Representatives. Speed and Wyche had also petitioned Hopkins for help in celebrating Henrietta’s life, and although the institution wasn’t sure what role to play, a small committee began meeting informally to discuss ways to commemorate Henrietta’s contribution to science.
Their efforts were derailed, unfortunately, by the appearance of Sir Lord Keenan Kester Cofield. Cofield claimed to be distantly related to Deborah by marriage—the family wasn’t exactly sure how—and when he called Deborah out of the blue, he told her he was a lawyer and that the family should copyright “Henrietta Lacks” and sue Hopkins for medical malpractice. He believed that Hopkins had made millions off of HeLa and that the Lackses were entitled to their share. (In his response to Speed and Wyche’s petition about Henrietta, an assistant to the president of Johns Hopkins emphasized that the school had never made any money from the culture and distribution of HeLa.) If the Lackses wanted his help, Cofield would work for free and only accept payment if he won.
Soon enough Deborah was introducing Cofield as the family’s lawyer. He began visiting Hopkins daily to search through the medical school’s archives. He reported terrifying details to the Lackses: That Henrietta had been treated by unqualified or incompetent doctors, that her cancer had been misdiagnosed, that her death might have been caused by a radiation overdose rather than the cancer.
One day Cofield attempted to view Henrietta’s medical records. When he was denied—only doctors and family members were allowed access to the records—he claimed he was a doctor. This tipped off a Hopkins lawyer, who discovered Cofield was neither a lawyer nor a doctor but a long-time conman who’d spent time in prison for fraud and sued anyone he could to make a buck. The lawyer immediately notified Deborah, and Cofield was barred from seeing Henrietta’s records.
Realizing his relationship with the Lackses was over, Cofield sued everybody: Deborah and Lawrence, Courtney Speed and her foundation, and a host of Hopkins employees. Among Cofield’s many accusations, the most absurd was that, because Henrietta Lacks’s birth name was Loretta Pleasant and no official record existed of her changing her name, Henrietta Lacks didn’t truly exist and her family had no right to her records.
As Deborah received legal document after legal document, she took out her fear and frustration on Speed. One day she barged into Speed’s Grocery, yelled at Speed, and demanded everything she owned related to Henrietta Lacks. The irony was that Speed herself was frightened. She too had received mountains of legal documents—they were piling up in the store’s backroom.
Around this time the BBC documentary aired, and Deborah began fielding calls and requests from reporters. She decided that she needed to see her mother’s medical records for herself and went to Hopkins to request a copy. While she was there, she met with the Hopkins lawyer who had warned her about Cofield, and he assured her that Hopkins would handle Cofield’s litigation (Hopkins eventually would get the case dismissed). Unfortunately, Cofield’s behavior had worried the small group hoping to commemorate Henrietta, and the group dropped the idea.
The ugly episode with Cofield took a toll on Deborah. Even though the case had been dismissed, Deborah worried that Cofield might try to steal from her to hurt her further. She became a shut-in, only leaving the house to work her job as a bus driver for children with special needs. After a teenager on the bus attacked her on two separate occasions, the second time injuring her spine, her mood darkened even further.
During this period, Deborah read her mother’s medical records. She discovered the name of the institution that her sister, Elsie (Lacks’s second child), had been committed to: Crownsville. When she called the institution for Elsie’s records, a staff member related that most of the facility’s documents prior to 1955—the year of Elsie’s death—had been destroyed. Deborah feared that the institution was hiding something terrible from her, just as she feared Hopkins was.
Mere hours after she got off the phone with the institution, she broke out in hives all over her body and became disoriented and short of breath. She went to the hospital, where her doctor discovered that her blood pressure was high enough to have caused a stroke.
Around the same time that Deborah was learning about the traumas her mother and sister had endured, Skloot was conducting research into Henrietta. In 1999, on her twenty-seventh birthday, Skloot came across a collection of papers delivered at Pattillo’s conference dedicated to Henrietta.
Skloot immediately called Pattillo. She explained she was writing a book on Henrietta Lacks and asked Pattillo if he could put her in touch with Henrietta’s surviving family. Pattillo, skeptical of Skloot’s intentions, asked her what she knew about African-Americans’ historical experience with medical researchers in the US. Skloot described the Tuskegee syphilis study, “Mississippi Appendectomies,” and the lack of funding for sickle-cell anemia.
Mississippi Appendectomies
An outgrowth of the eugenics movement of the 1920s and 1930s in the US, “Mississippi Appendectomies” were involuntary hysterectomies performed on black women, typically in the Deep South. These surgeries were performed to prevent African-Americans from reproducing as well as to allow doctors “practice” in performing the procedure. Between the 1930s and 1970s, thousands of African-Americans, men and women, were sterilized involuntarily.
Sickle-Cell Anemia
Sickle-cell anemia is a hereditary blood condition that causes fatigue, pain, swelling of the extremities, and other symptoms in the affected. Between 8% and 10% of African-Americans carry the sickle-cell trait (due to intraracial procreation, not biological difference). Despite sickle-cell anemia’s affecting millions of Americans of a variety of races, nationalities, and ethnicities, its research is chronically underfunded.
Pattillo wasn’t convinced immediately, but after three more days of Skloot’s persuading, he relented and gave Skloot Deborah Lacks’s number.
The first time Skloot called Deborah, mere weeks after her breakdown, Deborah was extremely enthusiastic about the book and alluded to all sorts of events in the family’s history—Skloot could barely keep up. The second time, Deborah was reticent. Deborah told Skloot that she couldn’t continue talking to her unless Skloot spoke to the men in the family: Day, Lawrence, and Sonny.
For days Skloot couldn’t get in touch with any of them. Finally, when she reached Day, he told her to leave him alone and hung up.
Tired of seeing Skloot’s number on his pager, Sonny finally agreed to meet her. He’d spoken to Pattillo—although Skloot didn’t know this at the time—to ask about Skloot, and he promised to take Skloot to meet Lawrence, Day, and, possibly, Deborah, when they met up.
Skloot travelled to Baltimore from Pittsburgh. Unable to get in touch with Sonny upon her arrival, she decided to visit Turner Station and see if she could locate the Lackses’ old house (she’d come across the address in an old newspaper article). The article had also mentioned Courtney Speed’s foundation and her grocery store.
Turner Station in 1999 was no longer the bustling neighborhood it was in the 40s. The streets had been rezoned for commercial purposes—there was now a massive power plant in the middle of the neighborhood—and most of the residents had moved elsewhere.
Skloot drove around the small neighborhood several times, passing by both Henrietta’s old home and a run-down mobile home where Speed’s Grocery was supposed to be. Through a chance meeting with a local pastor, she discovered that the mobile home was Speed’s Grocery, and she was quickly thereafter introduced to Courtney Speed.
When Skloot mentioned that she was writing about Henrietta, Speed clammed up, referencing the trouble with Cofield. Although Speed refused to say anything more about the Lackses until Skloot met with the family, she did supply Skloot with the BBC documentary, which Skloot had been trying to find for months. The documentary featured Henrietta’s cousins from Clover, and when Sonny finally returned Skloot’s calls, saying that the family had decided not to meet her after all, Skloot resolved to visit Clover herself.
The population of Clover had dwindled to around 200 when Skloot arrived in 1999. What she found was nearly a ghost town: Although all the stores were seemingly abandoned, there was still brand new merchandise in the clothing stores, and there were half-full shopping carts in the aisles of the grocery store.
Lacks Town, the Lacks’s ancestral farm, was separated from the rest of Clover by a two-lane road. Lacks Town consisted of a single road fronted by dozens of houses of various styles and in various conditions—alongside collapsed shacks that once housed enslaved people were cinder-block homes with modern accoutrements like satellite dishes.
Skloot drove the length of Lacks Town several times before being flagged down by Hector Henry—“Cootie”—Henrietta’s first cousin, who invited Skloot into his home.
Cootie told Skloot that Henrietta was kind and generous—Cootie had had polio in his youth, and Henrietta always told him she wanted to fix it. Cootie also told Skloot that Henrietta’s sickness might have been the result of voodoo, cast either by a person or an evil spirit. Cootie believed that spirits haunted Lacks Town.
Another cousin, who lived just down the road from Cootie and whom Cootie recommended Skloot talk to, took Skloot to see Henrietta’s grave. It was unmarked, and the cousin couldn’t tell Skloot exactly where Henrietta lay.
While Skloot was in Clover, she encountered firsthand the racism that persisted in the South. When she visited the oldest white Lackses still living in Clover—they were distantly related to Henrietta Lacks’s great-great-grandfather and so distantly related to Henrietta Lacks herself—they denied their kinship with the black Lackses and disdained the mixing of the races. And when Skloot spoke with Henrietta’s sister Gladys, she informed Skloot that their youngest sister Lillian had “converted to Puerto Rican”—Lillian was light-skinned and had married a Puerto Rican man, and she was tired of being black.
On New Year’s Day 2000, two months after Skloot initially went to Baltimore to meet Sonny Lacks and he turned her down, Skloot was finally able to meet the Lacks men.
The first Lacks she met was Sonny, who picked her up at her hotel to bring her to Lawrence’s. He was about 5’9”, with a manicured mustache and a kind affect.
In the car, Sonny told Skloot that he didn’t remember his mother; everything he knew he’d learned second-hand. He’d been told she was “nice” and attractive and a good cook. And he knew that her cells had played a role in medical advances like the vaccine for polio.
Sonny brought Skloot to Lawrence’s but didn’t come inside—he drove off immediately after Skloot exited the car. Inside Lawrence’s, Skloot found Lawrence cooking pork chops. He was six feet tall and close to 300 pounds.
Skloot accepted Lawrence’s offer of food, and while he cooked, he told Skloot about life in Clover and tobacco farming. Whenever Skloot brought up Henrietta, Lawrence changed the subject. Finally, he admitted that he’d repressed his memories of his mother, and that the only thing he remembered about her was that she was strict with him.
They sat at a table in the living room, and Lawrence described what he knew about his mother’s cells. His understanding was that they were still growing, and he thought they would be turned into a serum that would allow a human being to live until he or she was 800 years old. When it became apparent that Lawrence didn’t know exactly what a cell was, Skloot explained it to him.
In the middle of their conversation, Sonny returned—with Day. Day was silver-haired and wrinkled with age, and he was forced to wear sandals due to gangrene in his toes. The doctors wanted to amputate the affected toes because the gangrene was spreading, but Day refused on account of what the doctors had done to his wife. Sonny, too, needed an operation but was set against it for the same reason. While the Lacks men and Skloot were talking, Bobbette, Lawrence’s wife, descended the stairs and walked past everyone into the kitchen without saying a word.
Presently Sonny handed Day Skloot’s tape recorder and told him to say what he knew about his wife. Rather than talk about Henrietta’s life, however, Day told the story of the day he went to Hopkins and signed off on Henrietta’s autopsy. He said that no one told him anything about keeping her cells alive; the doctors only said that, by performing the autopsy, they might be able to save Day’s children and grandchildren from cancer.
As Day spoke, Sonny and Bobbette chimed in, expressing their skepticism of the doctors’ intentions. According to them, Hopkins was known for experimenting on African Americans during that time, even going so far as to abduct them. Bobbette told Skloot that, as a child, she was forbidden from going near Hopkins after dark for fear of being kidnapped.
Unfortunately, Bobbette’s fears reflected the historical and sometimes monstrous mistreatment of African Americans by the American medical establishment.
Since the early 19th century, African Americans had traded tales of “night doctors” who would abduct people in the middle of the night for gruesome experiments. These tales weren’t just the product of superstition: During slavery, doctors would in fact test new drugs or surgical procedures—the latter without anesthesia—on slaves.
Later, in the early twentieth century, deceased African Americans were exhumed from their graves and sent north to medical schools desperate for cadavers to study. Hence the belief among African-American Baltimoreans that Hopkins was built among poor black people to have easy access to research subjects.
The irony was that Johns Hopkins Hospital was founded to help poor people and especially African Americans. Johns Hopkins’s father, a Maryland plantation owner, freed his slaves long before emancipation, and Johns Hopkins himself donated $7 million of his fortune to establish a medical school and charity hospital. In letters to the trustees he’d chosen for the board of the hospital, he mandated that the hospital treat those who couldn’t otherwise afford medical care and set aside funds for the express purpose of serving orphaned African-American children.
Despite its founding mission, Hopkins did indeed, at various times, breach the trust of the community it was meant to serve. In 1969, a researcher examined blood samples from 7,000 neighborhood children without consent in an effort to determine whether there was a gene for criminality. And in the ’90s, researchers intentionally exposed black children to lead to study lead-abatement techniques.
The gravest offense of all, however, according to black Baltimoreans, was how the doctors at Hopkins had exploited Henrietta Lacks. The Lacks family, for their part, were furious over and devastated by how they’d been treated. They told Skloot that they were given no information about what was happening with Henrietta’s cells and hadn’t been compensated. (Even though Hopkins had said on numerous occasions they’d given the cells away, the family suspected that the hospital had turned a profit.) That Henrietta’s cells had played such an outsize role in medical advances was especially painful given that the Lackses themselves were in poor health and could only afford insurance intermittently.
Although Skloot had already met many of Henrietta’s relatives and descendants, it would take almost a year for Deborah to consent to meeting Skloot. During that time, Skloot would call Deborah regularly, leaving messages that described the aspects of Henrietta’s life she was uncovering through her research and reporting.
Finally, in July of 2000, Skloot and Deborah met. Deborah was around five feet tall and 200 pounds, and she walked with a cane. She joked that her hair was gray because she was the one member of the family worrying about her mother.
Deborah had come to Skloot’s B&B, and the two went up to Skloot’s room, where Skloot gave Deborah a gift. Skloot had published an article on the Lacks men in Johns Hopkins Magazine, and a Hopkins cancer researcher named Christoph Lengauer had read the article and gotten in touch with her. Lengauer had used HeLa cells to develop a technique for “painting” chromosomes with fluorescent dye, which, when viewed under fluorescent light, revealed aspects of the DNA that wouldn’t otherwise be detectable. Lengauer wanted to thank the Lacks family for Henrietta’s contribution to science, so he framed a picture of HeLa cells brilliantly lit by fluorescent light and gave it to Skloot for Deborah.
Deborah was delighted and expressed her desire to learn as much as she could about HeLa cells. Then she dumped out her bag onto the bed: She’d brought along the results of her own research into Henrietta Lacks—newspaper clippings, journal articles, and videotapes with uncut footage from the BBC documentary, among other items.
Soon it became clear that Deborah didn’t distinguish completely between science fiction and reality. When she told Skloot that there were women walking around London that looked just like her mother, she presented as evidence not only a newspaper article that spoke about the cloning of HeLa cells but also videotapes of Jurassic Park and another movie called The Clone.
Skloot and Deborah spent the next three days together. They explored Baltimore as they got to know each other and visited Deborah’s childhood homes.
And they spent hours together on Skloot’s bed in her B&B, poring over articles and documents concerning Henrietta. One day, when Skloot noticed a sizable manila folder on her pillow, she reached for it, asking Deborah if it was Henrietta’s medical records. Deborah screamed and dived onto the folder, and in an instant she’d packed her bag and was speeding toward the door. As she left, she told Skloot she didn’t know who to trust.
The next day Deborah came to Skloot’s B&B as though nothing had happened and took Skloot to see Zakariyya. Skloot was worried—she knew about Zakariyya’s history of anger, and that he was the least inclined of the Lackses to talk about his mother—but Deborah assured her that if she noticed anything wrong, she’d remove them from the situation. Along with them for the visit were eight-year-old Davon and four-year-old Alfred, Deborah’s grandsons.
Zakariyya lived in an assisted-living facility—he had significant hearing loss and, without corrective lenses, he was nearly blind—where he was on probation for intimidating the other residents. He greeted his visitors in the parking lot in a surly mood: He said wasn’t ready to see them yet and smacked Davon across the face with some newspapers he was carrying for no reason. Zakariyya was average height but weighed about 400 pounds.
Zakariyya sat on a bench in front of the building and ignored his guests, who went to sit on a bench about fifteen feet away. Finally Zakariyya asked to see the Johns Hopkins Magazine article Skloot had written. Deborah informed Skloot that he wanted Skloot to be there when he read it, so Deborah took her grandkids upstairs to Zakariyya’s room and told Skloot to sit with Zakariyya on his bench.
At a certain point in his reading, Zakariyya became agitated. He rose to his feet and yelled at Skloot about how the doctors stole his mother’s cells and created cures and cloned her, all without compensating—or even telling—the family. Deborah reappeared to make sure everything was OK, and the three started heading for the building entrance. As they did so, Zakariyya echoed his brothers and father: He told Skloot that Henrietta’s cells had only done good for wealthy people and that he and Deborah couldn’t even afford to see doctors.
Zakariyya’s room was spartan: Two chairs, a small TV with a VCR, a full-size bed with no sheets or pillows. On the wall were photocopied pictures of Lacks and Elsie, as well as diplomas for training in specific trades.
Once everyone was in the room, Zakariyya vented. When he began to remember what Ethel had done to him, he said, he felt like he could kill her and his father, too. He said that, even though his mother’s cells had helped people, he’d rather have had her alive to raise him.
Then Deborah stood and led the group back outside to the car. She dug into the trunk of her jeep and emerged with the picture of Henrietta’s cells Lengauer had made for the family. She gave it to Zakariyya, and Skloot mentioned that Lengauer had invited the family to visit his lab. Zakariyya softened for the first time all day. With tears in his eyes, he said that the family should accept Lengauer’s invitation.
Although by now Skloot and Deborah had developed a friendship, Deborah still occasionally suspected Skloot of trying to take advantage of her and her family. There was a racial component to Deborah’s suspicions—people would advise her not to trust a white person, especially considering how white people had treated her mother.
When Deborah would confront Skloot, asking her how much money she was being paid to write her book and how much she would give Deborah, Skloot told her that she wasn’t being paid anything—she hadn’t sold the book yet and was financing her reporting herself—and that journalistic ethics forbade her from paying for the story. She promised that if the book was ever published, she would found a scholarship for the descendants of Henrietta Lacks.
To further earn Deborah’s trust, Skloot promised to share everything she discovered with Deborah. She sent Deborah packages of research material, with notes that explained the significance of the items and warnings if some of the material might be upsetting. These tokens seemed to work: Deborah started calling Skloot “Boo,” which was her nickname for her own daughter, and urged Skloot to get a cell phone so she could keep in touch with her while she was on the road.
Deborah eventually allowed Skloot to visit her home. There, the two spent most of their time in Deborah’s office, where Deborah often slept (she and Pullum tended to fight, and it helped them both to have their own space). The room was small, and the walls were covered with photographs of animals torn from calendars. She kept videotapes of infomercials for luxuries—a Jacuzzi, an RV, a trip to Disneyland—to watch with Davon. She would ask him, “Where do you want to go on vacation?” and watch whatever video he chose.
Skloot showed Deborah how to get online with an old computer someone had given her, and Deborah stayed up late on Ambien researching Henrietta. Davon would often find Deborah asleep with her head on the keyboard. Once, Deborah called Skloot at three in the morning, her speech affected by the sleeping aid, to describe a discovery she’d made online about Henrietta.
At the time, Deborah was taking around 14 pills a day, and her prescription costs were $150 a month after Pullum’s insurance. When a prescription’s cost went up or her husband’s insurance stopped covering a particular medication, she either stopped taking the drug or began rationing what she already had. She’d been diagnosed with all sorts of ailments, from mental health conditions like anxiety and depression to diabetes, osteoporosis, and high blood pressure.
In April 2001, almost a year after Skloot and Deborah finally met in person, Deborah received an invitation to the National Foundation for Cancer Research’s annual conference. The conference would be held in Henrietta’s honor, and the president would present Deborah a plaque to commemorate her mother’s contribution to science. Deborah decided that she needed to see her mother’s cells before she attended the conference.
Unfortunately, on the same day that Deborah called Skloot about the conference, she also learned her son Alfred had been arrested. He and a friend had robbed several liquor stores at gunpoint, and the police apprehended Alfred at his house in front of his son, Alfred Jr.
A month later Deborah, Zakariyya, and Skloot met on Hopkins campus to visit Lengauer’s lab. The others Skloot had invited weren’t in attendance. Even though Day had long wanted to see his wife’s cells, he wasn’t able to join them. His health was in bad decline—he was eighty-five, had heart problems and high blood pressure, and had had a leg amputated due to Diabetes. Sonny had to go to his job, and Lawrence, for his part, had become convinced that Skloot was working with Hopkins to spy on the family.
First, Lengauer brought his visitors to the freezer room, where Henrietta’s cells were stored. Lengauer approached a particular floor-to-ceiling freezer and opened it, releasing a cloud of vapor. Inside the freezer were thousands of vials, each filled with HeLa cells.
Lengauer explained that there was always the danger of contamination—which Deborah knew about from her research—then gave Deborah a vial to hold. She began blowing on it and warming it between her hands, saying that her mother was cold.
Their next stop was the small lab where Lengauer incubated HeLa cells. There were gallon-sized jugs in the room, and he explained that, once the cells were incubated, they would start growing indefinitely, filling the jugs. He removed a dish of cells from the incubator and placed it under a microscope. The microscope was fitted with a monitor, and as Lengauer increased the magnification, the HeLa cells came into greater focus.
Deborah asked about the difference between DNA and cells, and Lengauer explained that DNA were in the cells, in the cell’s nucleus. He also explained how Henrietta’s cancer developed: Her HPV virus caused a change in her cells’ DNA that turned them cancerous. When it became clear that Deborah thought some of the cells they were looking at were normal and others cancerous, Lengauer informed her they were all cancerous.
After a bit of searching, Lengauer was able to find a cell in the middle of dividing. Zakariyya and Deborah were transfixed. The conversation shifted to Hopkins’s ill-treatment of the Lackses, and Lengauer agreed with Deborah and Zakariyya that Hopkins had done wrong by them. Showing them the catalog from which he ordered HeLa cells, which were priced at $167 a vial, he compared the cells to crude oil and said the Lackses should be getting at least a cut of the proceeds.
In addition to accompanying Deborah to see her mother’s cells, Skloot had promised to help Deborah find information on her sister Elsie. The day after the visit to Lengauer’s lab, Skloot and Deborah began a weeklong trip that would take them to Crownsville, MD, Clover, and Roanoke, to the house where Henrietta was born.
The institution where Elsie lived most of her life, the Hospital for the Negro Insane, was now the Crownsville Hospital Center, a state-of-the-art medical facility. As Skloot and Deborah walked the halls, the place appeared to be abandoned; and when they came across room labeled “Medical Records,” they found that the room was empty.
Eventually they found someone to help them: a bushy-bearded man named Paul Lurz. After Deborah told him about Elsie—that people thought she was disabled but that Deborah suspected she was just deaf—Lurz rose and went to a storage cabinet. Although most of Crownsville’s medical records from between 1910 and the late fifties had been destroyed—the documents had become contaminated with asbestos—Lurz had saved some clothbound books full of autopsy reports.
Miraculously, he had a book that contained reports from 1955. Even more miraculously, there was a record for Elsie Lacks. And even more miraculously than that, the record contained a picture of Elsie as a girl. In the picture, Elsie is screaming and crying, her head held in place against height measurements on a wall by a white staff member. The report itself revealed that Elsie was diagnosed with “idiocy” likely because she and/or her mother was syphilitic, and that, for six months prior to her death, she’d forced herself to vomit by sticking her fingers down her throat.
As Skloot, Deborah, and Lurz were reading the report, a man burst into the room and questioned them. Deborah presented documents proving she was a relative of Elsie’s and had a right to view her medical records.
Deborah submitted a request to have copies made of Elsie’s records, and Lurz left Skloot and Deborah with some archival documents to look through while he made the copies. A 1958 article from the Washington Post revealed that Crownsville in the ’50s was more awful than Skloot and Deborah had imagined. In 1955, the facility was 800 patients over capacity. Patients with all sorts of diagnoses—from dementia and TB to “low self-esteem”—were grouped together in airless rooms, and many patients had to share beds, sleeping head to toe on twin mattresses. Some rooms had drains on the floor rather than toilets.
Skloot would later learn that doctors had performed experiments on Crownsville patients without their consent. One study concerned pneumoencephalography, a procedure that allowed for crisp X-rays of the brain by draining the natural fluid that surrounds and protects the brain. The side-effects of pneumoencephalography were many, including seizures, nausea, headaches, and permanent brain damage. When Skloot consulted Lurz about the study, he said that, given the years the study was conducted, it was likely Elsie had been one of the subjects.
After learning about Crownsville and what had happened to Elsie, Deborah was surprisingly upbeat. Lurz had informed them the Maryland State Archives in Annapolis had any surviving records that weren’t on the Crownsville grounds, and Deborah was keen to go there immediately (despite Skloot’s gentle probing of her emotional state).
There were no further records concerning Elsie in Annapolis, so Deborah and Skloot drove on to Clover. Each time they stopped, Deborah would approach strangers and, apropos of nothing, present them with the picture of Elsie and introduce Skloot as her “reporter.” Deborah would also pull over occasionally to relate to Skloot her latest idea about her mother’s legacy; on one occasion, Deborah was near tears: She said she couldn’t keep her eyes on the road because she kept looking at the copy of the picture of Elsie.
Meanwhile, Deborah had promised that when they stopped for the night, she would let Skloot look at her mother’s records. When they checked into a hotel, she gave the records to Skloot before going to her own room to sleep.
Minutes after Skloot closed the door to her room, Deborah reappeared: She wanted to look through the records with Skloot.
The records filled an entire bag. When Deborah upended the bag over the bed, Skloot saw a hundred-plus pages in complete disarray fall onto the coverlet. And Deborah refused to allow Skloot to photocopy the materials: She insisted that Skloot sort through the papers and take notes in front of her.
As they sorted through the documents, Deborah alternated between excitement and panic; sometimes she would hand Skloot documents to read, other times hide documents under Skloot’s pillow. Finally, she curled up on Skloot’s bed, staring at the picture of Elsie and occasionally providing comment about what she thought Elsie must have been feeling.
After hours of reviewing the material, Skloot sat back, exhausted. Deborah, who had been poring over her sister’s autopsy, came across an unfamiliar word and asked Skloot what it meant. When Skloot told her, Deborah asked that Skloot not put the word in her book. Skloot agreed and smiled at Deborah’s protectiveness of her sister. But Deborah, who was already out of sorts over Skloot’s review of her mother’s records, misinterpreted Skloot’s smile. She thought Skloot was lying about not putting the word in and began throwing her mother’s records back into the bag.
Skloot attempted to calm Deborah down, but suddenly Deborah charged Skloot and pushed her up against the wall. She interrogated Skloot, asking her if she was working for Johns Hopkins and, if not, who was paying her.
At first, Skloot tried to explain as she’d done before, but then she lost her temper. She freed herself from Deborah’s grasp and cursed her. To Skloot’s surprise, Deborah calmed down; she even straightened Skloot’s hair. As an explanation for her paranoia, Deborah told Skloot for the first time about Cofield.
After Deborah made Skloot promise not to copy down all the information from her mother’s records—she wanted some aspects of her mother to remain private—she went back to her room. She was still agitated, however, and she appeared intermittently at Skloot’s door, making a number of excuses for her visits. The final time she summoned Skloot to the door before finally going to sleep, she’d broken out in hives from anxiety.
Skloot was able to sleep only one hour before Deborah woke her at six for the hotel’s complimentary breakfast. Once they were in the lobby, Deborah told Skloot that they were “OK.” Skloot concurred, but she wasn’t sure she believed it.
By the time Skloot and Deborah arrived in Clover, Deborah’s hives had worsened and she was swigging from a bottle of Benadryl to manage the reaction. Their first stop was the home-house, where Henrietta had grown up. Deborah had Skloot take pictures of her holding up Elsie’s pictures—in front of the home-house, by Henrietta’s favorite tree, and in the family graveyard near where Henrietta was supposed to have been buried.
They then visited Deborah’s aunt, Gladys. Even though it was relatively warm outside, inside Gladys had a large wood stove burning so hot she perspired. Soon after Skloot and Deborah’s arrival, Gladys’s son, Gary, came through the front door. Deborah immediately showed Gary the newly discovered picture of Elsie and began pacing around the room, rambling about Elsie and Henrietta and random news headlines.
Gary, who’d sat in a large recliner, attempted to calm Deborah. He managed to get her to sit, but only for an instant—soon enough she was up and pacing again, talking a blue streak about what she and Skloot had learned about her mother. Gary made frequent references to scripture, urging Deborah to trust in God and worry more about her herself and less about her mother.
When it became clear that Deborah was losing control, Gary, rising from his chair, explained that God was speaking to him. He approached Deborah with his arms open, and once she touched him, he clasped her head between his hands and brought it to his chest. He began shaking, singing, and preaching, inviting God into Deborah’s body to heal her. He summoned God because Deborah needed help “lifting the burden” of her mother’s cells.
Soon Deborah and Gary were crying and beseeching God together, begging him to take the cells from her. Then Gary looked at Skloot and said that God had sent Skloot to lift Deborah’s burden—to take the cells. Skloot was shocked.
Immediately Deborah separated from Gary and sighed with relief. She thanked Gary, but Gary gave all the credit to God. At that moment, the rain, which had been a drizzle when Gary first embraced Deborah, suddenly became a downpour. Gary said it was a sign that the Lord had been listening.
The next morning Deborah returned to Baltimore—her hives had improved, but there was still swelling around her eyes and she wanted to see her doctor.
Skloot stayed in Clover to speak to Gary about the previous day’s events. Shortly after she entered Gary’s home, he handed her a bible and commanded her to read some passages aloud. As she read, Gary told Skloot that Henrietta had been chosen by God to do his work—that she was an angel.
One of the passages referenced the mortality of the physical body and the immortality of the spiritual body. Skloot asked Gary if he thought HeLa was Henrietta’s spiritual body and he nodded. And Skloot suddenly realized how and why some in the Lacks family believed Henrietta was an immortal being anointed by God. Counter-intuitively, that explanation was much simpler than the one McKusick—or any other scientist or doctor—had provided them with. Just like HeLa, angels were immortal, floated through the air, and cured diseases. These parallels were much easier to grasp than explanations involving DNA, HPV, and unusual malignancy.
Deborah, meanwhile, when she arrived at her doctor’s office, was told that her blood pressure and sugar levels were dangerously high—enough so that she was in danger of having a stroke. The doctor urged her to avoid any stress at all for the near future, so Deborah and Skloot decided that Deborah was better off staying at home when Skloot went on reporting trips. As Skloot’s knowledge developed over the subsequent months, she only told Deborah the positive things she discovered.
At the same time that Skloot was unearthing an array of details about Henrietta’s early life, Deborah was preparing for her speech at the National Foundation for Cancer Research. She was also determined to take college classes—to understand better the science of what happened with her mother—and was taking placement tests and signing up for classes to help her reach tenth-grade reading and math proficiency (which would allow her to register for community college).
Deborah seemed calm and eager, but other aspects of her life weren’t as hopeful. Her son was in prison and would be put on trial shortly after the conference, and one of Lawrence’s sons had been arrested for robbery as well. And then, the day after she heard about Lawrence’s son and mere days before the conference, terrorists attacked the World Trade Center and the Pentagon. It was 9/11.
Skloot, who’d left early that morning to drive from Pittsburgh to Washington D.C., had to turn back. She and Deborah processed the attacks together over the phone, and Deborah worried that the conference, which had been cancelled, would never be rescheduled.
The Sunday after 9/11, Deborah was in church. Pullum was preaching, and her grandson, nine-year-old Davon, sat with the church choir. At a certain point in the service, Deborah realized that she couldn’t move her arm. She noticed Davon looking at her and tried to signal him that something was wrong but couldn’t. When the service ended and the parishioners stood, Deborah fell to one knee just as Davon rushed off the choir platform, yelling that something was wrong with his grandma.
Pullum immediately recognized what was ailing Deborah: a stroke. As soon as Davon heard the word, he dug Deborah’s car key from her purse and raced outside. He opened all of the car doors wide and started the car himself. Pullum drove them in the direction of a nearby fire station; while he drove, Davon kept slapping Deborah to keep her awake.
When they arrived at the fire station, the firefighters administered emergency treatment and put Deborah in an ambulance. They told Davon that he’d saved Deborah’s life by keeping her awake.
The day Deborah left the hospital was Skloot’s birthday. Deborah called Skloot and left a calmly delivered message letting her know she’d had a stroke and wouldn’t be able to meet Skloot in Clover, as they’d planned. Though she wasn’t yet fully recovered, the doctors believed she would eventually regain full function.
Deborah told Skloot that her doctor had told her she needed to learn to control her blood pressure and blood sugar; otherwise, a second stroke, which would likely be worse than the first, was probable. Deborah took the doctor’s advice as another sign she needed to go back to school: She could take a nutrition class to learn how to eat healthily.
Unfortunately, the obstacle to Deborah’s returning to school wasn’t her health or drive but poverty: Her social security benefits simply weren’t enough to cover both her living expenses and classes and books. Eventually she set aside her own dreams of higher education and began concentrating on making sure her own and her siblings’ grandchildren had the opportunities she and her siblings hadn’t.
Shortly after Deborah’s discharge from the hospital, Skloot joined her at her church to watch the baptism of Sonny’s nine-month-old granddaughter. Pullum was the preacher that day, and almost as soon as the service began, he called Skloot to the pulpit. Surprised and nervous, Skloot resisted, but Pullum compelled her to join him.
Once she stood beside him, Pullum announced that Skloot was going to tell the congregation what happened with Henrietta, Johns Hopkins, and Henrietta’s children. Skloot did just that, gaining confidence as the congregation answered her speech with “Amen” and “Hallelujah.” When Pullum took back the microphone, he said that Henrietta’s story was no longer about her children, but her children’s children—the baby being baptized that day, Davon, and the rest of Henrietta’s grandchildren.
In 2009, eight years after Deborah’s stroke, Skloot drove to Clover. When she got there, she found she was disoriented—the road into town seemed longer than it had the last time she visited. All of a sudden she realized what had happened: The town had been razed. She collected some of the debris from the vanished houses to give to Deborah.
Skloot hadn’t been in touch with Deborah for months, though Skloot had called her a number of times. In the years since the baptism, the Lackses had endured considerable hardship: Sonny had a quintuple bypass without insurance, a surgery that landed him $125,000 in debt; Zakariyya had been expelled from his assisted-living facility and a Section Eight housing project, the latter because he struck a woman with a forty-ounce beer bottle; and Deborah had divorced Pullum and moved into an assisted-living facility herself. In 2006, when Deborah’s divorce was finalized, she had no money in her checking account, and her entire monthly income was $742: $732 from social security and $10 in food stamps.
When Skloot returned from Clover, she called Deborah again and found her voicemail box full. Clover’s disappearance was too important to wait, so Skloot called Sonny. She announced herself, and Sonny said that he’d been searching for her phone number. Immediately Skloot knew that Deborah had died. Sonny told her the story. About a week before, Sonny had gone over to check on Deborah when she didn’t answer a call from Davon. He’d found her in bed, smiling, dead from a heart attack. It was just a few days after Mother’s Day.
The last time Skloot had seen Deborah, she’d made Skloot and Davon watch Roots and Spirit, an animated film about a wild horse, back to back. She wanted them to see the similarities between Kunta Kinte and Spirit, how they both fought for their freedom.
When the films were done, Deborah played one of the tapes of unaired footage from the BBC documentary on her mother. A much younger Deborah appeared on the TV screen with her mother’s bible in her lap. Deborah kept a long lock of her mother’s hair in the bible—the lock of hair and the bible were all Deborah had of her mother—and Deborah stroked it as she spoke into the camera. The young Deborah on screen said that Henrietta had been watching all that had happened with her cells, so that when Deborah died, she wouldn’t need to fill her in on anything.
Watching the screen, Deborah wondered aloud to Skloot and Davon whether, when she died, she would come back as some HeLa cells, so she and her mother could help people in the world together.
(As of 2009)
Afterword
Skloot is often asked whether Gey’s taking of Henrietta’s cells without consent was illegal. It wasn’t in 1951—and, as of 2009, it still wasn’t.
When Americans go to the doctor to have blood drawn, a mole removed, or any sort of “ectomy” (i.e., tissue or organs excised), it’s perfectly legal for doctors and hospitals to keep samples of that tissue for research. A 1999 study from the RAND Corporation estimated that tissue from more than 178 million Americans was stored in the US and that the library of tissues was growing by more than 20 million samples a year. The samples are stored in a number of places—hospitals, laboratories, federal agencies, military facilities—and include everything from appendixes to blood to fat cells to foreskins from circumcisions.
And the tissue industry is only growing. For example, 23andMe, the company that provides customers with genealogical information based on a saliva sample, will only analyze samples if the customer agrees to allow their samples to be used for further research.
In the debate over people’s rights to their tissues, there are two issues of prime importance: consent and remuneration.
In terms of consent, the Federal Policy for the Protection of Human Subjects—more commonly known as the “Common Rule”—mandates that researchers must have informed consent before conducting studies or experiments on human subjects. The problem is that most tissue research isn’t federally funded and the researcher never comes into contact with the actual human who provided the samples: the subject is the sample, not the human. Doctors must get informed consent from a potential subject if they want to remove tissue for research, but if they want to conduct research on already-removed tissue, they don’t.
While the medical establishment believes there are sufficient mechanisms and rules in place—institutional review boards, various guidelines, and ethical codes—tissue-rights activists argue that actual legislation is necessary to protect people’s tissue. These activists believe that donors should have a say in who gets access to those tissues and what kinds of research their tissues are used for.
Some unwitting tissue donors have tested these theories in the courts. In 2005, 6,000 patients sued Washington University to have their tissue samples removed from the institution’s cell bank. The patients lost their initial lawsuit as well as their appeal; the judges in both cases argued that patient ownership of tissue samples would stifle scientific research. In 2008, the patients appealed to the Supreme Court, which refused to hear the case.
Hopkins’s release of Henrietta’s name and medical records, however, would be illegal now: HIPAA protects patients’ privacy. And the Common Rule features guidelines for naming and/or coding samples that renders them anonymous (i.e., samples are no longer named, like HeLa, using the subject’s real name).
Contemporary bioethicists and scientists are divided on the issue of consent. Some believe patients should have complete knowledge of and control over how their tissues are used, whereas others argue the complexity of a robust consent regime would have significant negative consequences for the advance of science.
The other facet of the debate concerns money—whether patients should be informed if their tissues will be used in commercial enterprise and whether they should be compensated.
Under current law, it is illegal to sell human organs and tissues for research or transplants. However, companies turn profits processing those organs and tissues that humans donate freely.
Analysts in favor of compensating patients have proposed various systems for paying patients back: direct payments for donations, royalties on future earnings from donated samples, and tax write-offs are just a few.
Those arguing against compensating patients fear that, if patients can sell their tissues, they will begin to withhold samples to achieve better financial terms, thereby stifling research. But Skloot finds that very few tissue-rights activists seek cash awards for themselves. Rather, they want to ensure that whatever treatments or medicines are derived from their tissues are freely available to all (rather than patented for profit).
When Skloot was writing, the most contentious area of commercial science was gene patenting. As of 2005, the use of approximately 20% of known human genes had been patented. This meant that laboratories or institutions that wanted to conduct research on those genes had to pay a licensing fee. For example, to study the gene that caused hereditary hemochromatosis, a blood disorder, academic institutions were required to pay a $25,000 licensing fee to the company that had patented it (commercial enterprises had to pay $250,000). Myriad Genetics, which held patents on two genes responsible for breast cancer, had a monopoly on the test for those genes (which cost $3,000 per patient) and charged peer companies and institutions to research those genes.
(Shortform note: The ACLU sued Myriad Genetics in 2009, arguing, ironically, that instead of spurring research, patenting discrete strands of DNA stifled research. After a number of appeals and a remand from the Supreme Court, the case was finally heard by the Supreme Court and decided in favor of the ACLU: The Court held that companies couldn’t patent isolated strands of DNA found in nature.)
Members of the scientific community, as they are on the topic of a far-reaching consent regime, are divided on the topic of commercializing science. More capitalistic scientists believe that the possibility of profit incentivizes research and innovation, whereas less profit-driven researchers believe patents undermine the spirit and mission of science—to increase the world’s store of knowledge.
In terms of the patient’s interests in commercial science, the scientists Skloot interviews believe patients should have ownership of their tissues. Wayne Grody, a lab director at UCLA, argues that if patients can leverage their tissues to make a profit, more power to them.
The problem, though, is that the majority of patients don’t know their tissues are valuable until after they’ve already been (legally) taken. Thus the only way they can reap the benefits of their tissues is if doctors and researchers voluntarily include them in any commercial venture—or if those doctors and researchers must get their consent.
John Moore’s lawsuit against David Golde and UCLA resulted in case law that recommended patients be notified if their tissues have commercial value. No legislation resulted from the judge’s decision, however, so institutions have no obligation to inform their patients about the potential for commercial use. And despite congressional hearings and federal reports on bioethics, no clear policy has emerged.
Although Lawrence and Zakariyya have expressed interest intermittently in suing Hopkins, no Lacks family member has actually filed suit. There are merits to their case—since HeLa cells are anything but anonymous, the family ought to be covered by the Common Rule; and since Henrietta’s descendants share DNA with HeLa cells, they ought, under the Common Rule, to be able to remove HeLa cells from circulation—but given the disruption a ruling like this would cause, legal experts are skeptical the suit would succeed. According to Sonny, the Lackses aren’t eager to keep HeLa cells from being used in research anyway. He believes Deborah would want their mother’s cells to continue helping people. HeLa’s miraculous role in 20th-century science is a source of pride for the family.
Explore the ethical dilemmas raised by Henrietta Lacks’s story.
Should Henrietta’s doctors have notified her that they were taking a sample of her cancer cells for research? Why or why not?
Should the Lackses have been compensated for the discovery and/or sale of HeLa cells? Why or why not?
Do you think doctors and scientists should be legally obligated to notify and/or get consent from the people whose tissues they intend to use?
Would you like to be notified and/or asked for consent if your tissues were to be used for research? Why or why not?