[3 of 5] The Immortal Life of Henrietta Lacks, Chapters 16-22, by Rebecca Skloot (2010)

Author: Rebecca Skloot

“Chapters 16-22.” The Immortal Life of Henrietta Lacks, by Rebecca Skloot, Broadway Paperbacks, an Imprint of the Crown Publishing Group, a Division of Random House, Inc., 2011.

16 – “Spending Eternity in the Same Place” (1999)

During my first visit with Henrietta’s cousin Cootie, as we sat drinking juice, he told me that no one ever talked about Henrietta. Not when she was sick, not after she died, and not now. “We didn’t say words like cancer,” he told me, “and we don’t tell stories on dead folks.” At that point, he said, the family had gone so long without talking about Henrietta, it was almost like she’d never existed, except for her children and those cells.

“It sound strange,” he said, “but her cells done lived longer than her memory.”

If I wanted to know anything about Henrietta, he told me, I’d need to go up the road and talk to her cousin Cliff, who’d grown up with her like a brother.

When I pulled into Cliff’s driveway, he figured I was a Jehovah’s Witness or an insurance sales rep, since the only white people who visited him were usually one or the other. He smiled and waved just the same, saying, “How you doin?”

Cliff was in his seventies and still minding the tobacco barn behind the farmhouse his father had built decades earlier, checking the furnaces several times a day to make sure they stayed at 120 degrees. Inside Cliff’s house, the electric-blue and white walls were darkened with smudges of oil and dirt. He’d blocked the stairs to the second floor with cardboard and blankets to keep warm air from going up and out through missing windows, and he’d patched holes in his ceiling, walls, and windows with newspaper and duct tape. He slept downstairs on a thin, sheetless twin bed across from the refrigerator and woodstove, next to a folding table where he’d piled so many pills, he’d forgotten what they were all for. Maybe the prostate cancer, he said. Maybe the pressure.

Cliff spent most of his time on his porch, sitting in a plaid recliner so worn down it was mostly just exposed foam and springs, waving at each car that passed. He was about six feet tall, even with several inches of slouch, his light brown skin dry and weathered like alligator, his eyes sea green at the center, with deep blue edges. Decades in shipyards and tobacco fields had left his hands coarse as burlap, his fingernails yellowed, cracked, and worn to the cuticles. As Cliff talked, he stared at the ground and twisted his arthritic fingers, one over the other like he was crossing them all for good luck. Then he untwisted them and started again. When he heard I was writing a book about Henrietta, he got up from his recliner, pulled on a jacket, and walked over to my car, yelling, “Come on then, I’ll show you where she buried!” About a half-mile down Lacks Town Road, Cliff had me park in front of a cinder block and pressboard house that couldn’t have been more than three hundred square feet inside. He jerked open a log-and-barbed-wire gate that led into a pasture and motioned for me to walk through. At the end of the pasture, hidden in the trees, stood a slave-time log cabin covered in boards with gaps wide enough to see through. Its windows had no glass and were covered by thin pieces of wood and rusted Coke signs from the fifties. The house slanted, its corners resting on piles of rocks of varying sizes that had been holding it above ground for more than two hundred years, its base high enough off the ground for a small child to crawl under.

“That there is the old home-house where Henrietta grew up!” Cliff yelled, pointing. We walked toward it through red dirt and dried leaves that cracked under our feet, the air smelling of wild roses, pine, and cows.“ Henrietta kept it nice—a real home-house. Now I can’t hardly recognize it.”

The floors inside were covered with straw and manure; they’d collapsed in several places under the weight of cows that now roamed free on the property. Upstairs, in the room Henrietta once shared with Day, a few remnants of life lay scattered on the floor: a tattered work boot with metal eyes but no laces, a TruAde soda bottle with a white and red label, a tiny wo-man’s dress shoe with open toes. I wondered if it was Henrietta’s.

“Could be!” Cliff said. “Sure look like her shoe.”

He pointed toward what used to be the back wall, which had fallen years earlier, leaving little more than the frames of two tall windows. “This is where Henrietta slept.”

She used to lie on her stomach and stare out those windows, looking at the woods and the family cemetery, a small quarter-acre clearing where a few strands of barbed wire now surrounded a scattering of tombstones. The same cows that had trampled the home-house floor had destroyed several sections of the cemetery fence. They’d left manure and hoof prints on graves, crushed flower arrangements into piles of stems, ribbon, and Styrofoam, and knocked over several tombstones, which now lay flat on the ground next to their bases.

When we got outside, Cliff shook his head and picked up fragments of a broken sign. One piece said WE LOVE, the other said MOM.

Some of the family tombstones were homemade from concrete; a few were store-bought and marble. “Them’s the folks with some money,” Cliff said, pointing to a marble one. Many graves were marked with index-card-sized metal plates on sticks with names and dates; the rest were unmarked.

“Used to be we’d mark them graves with a rock so we could find em,” Cliff told me. “But the cemetery got cleaned out one time with a bulldozer, so that pretty much cleared those rocks on away.” There were so many people buried in the Lacks cemetery now, he said, they’d run out of room decades ago and started piling graves on top of each other.

He pointed at an indentation in the ground with no marker beside it. “This was a good friend of mine,” he said. Then he started pointing around the graveyard to other body-sized indentations in the dirt. “See that sunk in right there … and that sunk right there … and there … Them’s all unmarked graves. They sink after a time when the dirt settle around the bodies.” Occasionally he’d point to a small plain rock poking through the earth and say it was a cousin or an aunt.

“That there’s Henrietta’s mother,” he said, pointing to a lone tombstone near the cemetery’s edge, surrounded by trees and wild roses. It was several feet tall, its front worn rough and browned from age and weather. The inscription said this:

ELIZA
WIFE OF J.R.
PLEASANT
JUL 12, 1888
OCTOBER 28, 1924
GONE BUT NOT FORGOTTEN

Until I read those dates, I hadn’t done the math: Henrietta was barely four years old when she lost her mother, about the same age Sonny was when Henrietta died.

“Henrietta used to come talk to her mother, took real good care of her grave. Now Henrietta somewhere in here with her,” Cliff said, waving his arms toward the clearing between Eliza’s stone and the next tree a good fifteen feet away. “Never did get a marker, so I couldn’t tell you exactly where she at, but the immediate family be buried next to each other. So she probably round in here somewhere.”

He pointed to three body-sized indentations in the clearing and said, “Any one of those could be Henrietta.”

We stood in silence as Cliff kicked at the dirt with his toe.

“I don’t know what happened on that deal with them cells from Henrietta,” he said eventually. “Don’t nobody say anything about it round here. I just knowed she had something rare, cause she been dead a pretty good while, but her cells still living, and that’s amazing.” He kicked at the ground. “I heard they did a lot of research and some of her cells have develop a lot of curing other diseases. It’s a miracle, that’s all I can say.”

Then suddenly he yelled at the ground, as if he was talking directly to Henrietta. “They named them HeLa! And they still living!” He kicked at the dirt again.

A few minutes later, seemingly out of nowhere, he pointed to the dirt and said, “You know, white folks and black folks all buried over top of each other in here. I guess old white granddaddy and his brothers was buried in here too. Really no tellin who in this ground now.” Only thing he knew for sure, he said, was that there was something beautiful about the idea of slave-owning white Lackses being buried under their black kin.

“They spending eternity in the same place,” he told me, laughing. “They must’ve worked out their problems by now!

Henrietta’s great-great-grandmother was a slave named Mourning. A white man named John Smith Pleasants inherited Mourning and her husband, George, from his father, one of the first slaveholders in Clover. Pleasants’ father came from a family of Quakers, and one of his distant relatives had been the first to fight successfully to free his own slaves through the Virginia courts. But Pleasants hadn’t carried on the family’s antislavery tradition.

Mourning and George were enslaved on a tobacco plantation in Clover. Their son, Henrietta’s paternal great-grandfather Edmund, took his owner’s last name, which lost the s to be-come Pleasant. He was eventually freed from slavery at the age of forty, only to be committed later to an asylum for dementia. But before he was freed, he fathered many children, all of them born into slavery, including a daughter named Henrietta Pleasant—the great-aunt of Henrietta Lacks.

On the other side of Henrietta’s family, her maternal great-grandfather was a white man named Albert Lacks, who’d inherited part of the Lacks Plantation in 1885, when his father divided his land among his three white sons: Winston, Benjamin, and Albert.

Winston Lacks was a burly man with a beard that grew to his belly—he drank almost every night in a saloon hidden in the basement beneath the general store. When Winston got drunk and started fighting, the locals knew it was time for the soberest man to ride and get Fannie. There are no records of Fannie’s life, but she was most likely born a slave on the Lacks property, and like most Lacks slaves who stayed on the plantation as sharecroppers, she never left. She often rode beside Winston in his wagon, and when he got drunk, she’d march into the saloon, snatch him off the barstool by his long beard, and drag him home.The other brothers, Albert and Benjamin, led more private lives and left behind little history aside from their wills and land deeds. Most of the black Lackses I talked to over the years referred to Benjamin Lacks as “old white granddaddy,” though some still called him “Massuh Ben,” as their parents had.

When Albert died on February 26, 1889, slavery had been abolished, but few black people owned land of their own. Albert’s will left land to five “colored” heirs, most of it in ten-acre chunks, and one of those heirs was Henrietta and Day’s grandfather, Tommy Lacks. Albert’s will said nothing of his relation to his heirs, but folks in Lacks Town knew they were children he’d had with a former slave named Maria.

After Albert’s death, his brother Benjamin sued to take some of that land away from Albert’s black heirs, saying that since it was his father’s land originally, he had the right to choose whichever plot he wanted. The court agreed and divided the original Lacks plantation into two plots “of equal value.” The lower section—on the river—went to Benjamin Lacks; the upper plot—now known as Lacks Town—went to the black Lackses.

Sixteen years after the court case, when Benjamin Lacks dictated his own will days before his death, he gave small plots of land to each of his sisters, then divided the remaining 124 acres and his horses between seven “colored” heirs of his own, including his nephew Tommy Lacks. There’s no record of Benjamin or Albert Lacks marrying or having any white children, and as with Albert, there’s no record that the black children in Benjamin’s will were his own. But he called them his “nigger children,” and according to black Lacks oral history, everyone living on the land in Clover that was once the Lacks Plantation descended from those two white brothers and their black mistresses who were once slaves.

When I arrived in Clover, race was still ever-present. Roseland was “the nice colored fellow” who ran Rosie’s before it shut down; Bobcat was “the white man” who ran the mini-mart; Henrietta went to St. Matthew’s, “the colored church.” One of the first things Cootie said when I met him was, “You don’t act strange around me cause I’m black. You’re not from around here.”

Everyone I talked to swore race relations were never bad in Clover. But they also said Lacks Town was only about twelve miles from the local Lynch Tree, and that the Ku Klux Klan held meetings on a school baseball field less than ten miles from Clover’s Main Street until well into the 1980s.

Standing in the cemetery, Cliff told me, “The white Lackses know their kin all buried in here with ours cause they family. They know it, but they’ll never admit it. They just say, ‘Them Black Lackses, they ain’t kin!’”

When I went to visit Carlton and Ruby Lacks, the oldest white Lackses in Clover, they smiled and chitchatted as they led me from their front door into a living room filled with pastel-blue overstuffed chairs and Confederate flags—one in each ashtray, several on the coffee table, and a full-sized one on a stand in the corner. Like Henrietta and Day, Carlton and Ruby were first cousins before they became husband and wife. They were both related to Robin Lacks, the father of Albert, Ben, and Winston Lacks, which made them Henrietta and Day’s distant cousins.

Carlton and Ruby had been married for decades and had more children, grandchildren, and great-grandchildren than they could count. All they knew for sure was that there were more than one hundred of them. Carlton was a frail man in his late eighties, with skin so pale it looked almost translucent. Tufts of hair like overgrown cotton sprouted from his head, brow, ears, and nostrils as he sat in his easy chair, mumbling about his years working the bank at a tobacco warehouse.

“I wrote out the checks,” he said, mostly to himself. “I was the tobacco king.”

Ruby was in her late eighties too, with a sharp mind that seemed decades younger than her frail body. She talked right over Carlton, telling me about their grandfather who’d farmed the Lacks Plantation, and their relation to Ben and Albert Lacks. When I mentioned that Henrietta came from Lacks Town, Ruby straightened in her chair.

“Well, that was colored!” she snapped. “I don’t know what you talking about. You’re not talking about coloreds are you?”

I told her I wanted to learn about both the white and black Lackses.

“Well, we never did know each other,” she said. “The white and the black didn’t mix then, not like they do now, which I can’t say I like because I don’t think it’s for the best.” She paused and shook her head. “Mixing them like that, during school and church and everything, they end up white and black get together and marry and all… I just can’t see the sense in it.”

When I asked how she and Carlton were related to the black Lackses, they looked at each other from across the coffee table like I’d asked if they were born on Mars.

“My daddy’s uncle kept a lot of the colored Lackses as slaves,” Ruby said. “That must be where they got their name. Evidently they took it when they left the plantation. That’s the only thing I can figure.”

Later, I asked Henrietta’s sister Gladys what she thought of their theory. Though she’d lived about a mile from Carlton and Ruby Lacks most of her ninety years, Gladys said she’d never heard of them.

“Black and white Lacks is kin,” Gladys said, “but we don’t mix.” She pointed under the couch where I was sitting.

“Get Lillian’s letter,” she said to her son Gary.

As far as Gladys knew, all of Henrietta’s other siblings were dead, except maybe Lillian, the youngest. The last anyone had heard from Lillian was a letter she’d sent sometime in the eighties, which Gladys kept in a shoebox under the couch. In it, Lillian wrote, “I heard daddy died in a fire,” and she asked if it was true. It was: He’d died in 1969, two decades before she sent that letter. But what Lillian really wanted to know was who’d been talking to people about her life. She’d won the lottery, she said, and she believed someone was trying to kill her because white folks had been coming around asking questions about her life in Clover and her family, especially Henrietta. “They knew things I didn’t even know,” she wrote. “I don’t think anybody should talk about other people.” No one in the family had heard from her since.

“Lillian converted to Puerto Rican,” Gladys said, holding the letter to her chest. I looked at Gary, who sat beside her.

“Lillian’s skin was real light, even lighter than mom’s,” Gary explained. “She married a Puerto Rican somewhere in New York. Since she could pass, she disowned her blackness—converted to Puerto Rican because she didn’t want to be black no more.”

17 – Illegal, Immoral, and Deplorable (1954-1966)

As HeLa grew like crabgrass in laboratories around the world, a virologist named ChesterSoutham had a frightening thought: What if Henrietta’s cancer cells could infect the scientists working on them? Gey and several others had already shown that some rats grew tumors when injected with live HeLa. Why not humans?

Researchers were breathing in the air around HeLa cells, touching them and transferring them from vial to vial, even eating lunch at lab tables beside them. One had used them to grow a vaccine for a common-cold-like virus, which he’d injected—along with bits of HeLa—into more than four hundred people. Yet no one knew whether a person could actually catch cancer from HeLa or other cancer cells.

“There is the possible danger,” Southam wrote, “of initiating neo-plastic disease by accidental inoculation during laboratory investigation, or by injection with such cells or cell products if they should be used for production of virus vaccine.”

Southam was a well-respected cancer researcher and chief of virology at Sloan-Kettering Institute for Cancer Research. He and many other scientists believed that cancer was caused by either a virus or an immune system deficiency, so Southam decided to use HeLa to test those theories.

In February 1954, Southam loaded a syringe with saline solution mixed with HeLa. He slid the needle into the forearm of a woman who’d recently been hospitalized for leukemia, then pushed the plunger, injecting about five million of Henrietta’s cells into her arm. Using a second needle, Southam tattooed a tiny speck of India ink next to the small bump that formed at the HeLa injection site. That way, he’d know where to look when he reexamined the woman days, weeks, and months later, to see if Henrietta’s cancer was growing on her arm. He repeated this process with about a dozen other cancer patients. He told them he was testing their immune systems; he said nothing about injecting them with someone else’s malignant cells.

Within hours, the patients’ forearms grew red and swollen. Five to ten days later, hard nodules began growing at the injection sites. Southam removed some of the nodules to verify that they were cancerous, but he left several to see if the patients’ immune systems would reject them or the cancer would spread. Within two weeks, some of the nodules had grown to two centimeters—about the size of Henrietta’s tumor when she went in for her radium treatments.

Southam eventually removed most of the HeLa tumors, and those he didn’t remove vanished on their own in a few months. But in four patients, the nodules grew back. He removed them, but they returned again and again. In one patient, Henrietta’s cancer cells metastasized to her lymph nodes.

Since those patients had all had cancer to begin with, Southam wanted to see how healthy people reacted to the injections, for comparison’s sake. So, in May 1956, he placedan ad in the Ohio State Penitentiary newsletter: Physician seeks 25 volunteers for cancer research. A few days later he had ninety-six volunteers, which quickly increased to 150.

He chose the Ohio prison because its inmates had cooperated in several other studies without resistance, including one in which they’d been infected with a potentially deadly disease called tularemia. Research on inmates would come under scrutiny and start being heavily regulated about fifteen years later, because they’d be considered a vulnerable population unable to give informed consent. But at the time, prisoners nationwide were being used for research of all kinds—from testing chemical warfare agents to determining how X-raying testicles affected sperm count.

Southam began injecting prisoners in June 1956 using HeLa cells that his colleague, Alice Moore, carried from New York to Ohio in a handbag. Sixty-five prisoners—murderers, embezzlers, robbers, and forgers—lined up on wooden benches for their injections. Some wore white hospital garb; others came off work gangs wearing blue dungarees.

Soon tumors grew on the prisoners’ arms just as they’d grown in the cancer patients. The press ran story after story about the brave men at the Ohio Penitentiary, praising them as “the first healthy human beings ever to agree to such rigorous cancer experiments.” They quoted one man saying, “I’d be lying if I said I wasn’t worried. You lie there on your bunk knowing you’ve got cancer in your arm. … Boy, what you think about!”

Again and again reporters asked, “Why did you volunteer for this test?”

The prisoners’ replies were like a refrain: “I done a girl a great injustice, and I think it’ll pay back a little bit what I did to her.”

“I believe the wrong that I have done, in the eyes of society, this might make a right on it.” Southam gave multiple cancer cell injections to each prisoner, and unlike the terminally ill

patients, those men fought off the cancer completely. And with each new injection, their bodies responded faster, which seemed to indicate that the cells were increasing the inmates’ immunity to cancer. When Southam reported his results, the press hailed them as a tremendous breakthrough that could someday lead to a cancer vaccine.

In the coming years, Southam injected HeLa and other living cancer cells into more than six hundred people for his research, about half of them cancer patients. He also began injecting them into every gynecologic surgery patient who came to Sloan-Kettering’s Memorial Hospital or its James Ewing Hospital. If he explained anything, he simply said he was testing them for cancer. And he believed he was: Since people with cancer seemed to reject the cells more slowly than healthy people did, Southam thought that by timing the rejection rate, he might be able to find undiagnosed cases of cancer.

In a statement he’d later repeat again and again during hearings about his research, Southam wrote, “It is, of course, inconsequential whether these are cancer cells or not, sincethey are foreign to the recipient and hence are rejected. The only drawback to the use of cancer cells is the phobia and ignorance that surrounds the word cancer.“

Because of that “phobia and ignorance,” Southam wrote, he didn’t tell patients the cells were cancerous because he didn’t want to cause any unnecessary fear. As he would say, “To use the dreaded word ‘cancer’ in connection with any clinical procedure on an ill person is potentially deleterious to that patient’s well-being, because it may suggest to him (rightly or wrongly) that his diagnosis is cancer or that his prognosis is poor. … To withhold such emotionally disturbing but medically nonpertinent details … is in the best tradition of responsible clinical practice.”

But Southam wasn’t their doctor, and he wasn’t withholding upsetting health information. The deception was for his benefit—he was withholding information because patients might have refused to participate in his study if they’d known what he was injecting. And Southam probably would have continued doing this for years had he not made an arrangement on July 5, 1963, with Emanuel Mandel, director of medicine at the Jewish Chronic Disease Hospital in Brooklyn, to use the hospital’s patients for his research.

The plan was that Mandel would have doctors on his staff inject twenty-two JCDH patients with cancer cells for Southam. But when he instructed his staff to give the injections without telling patients they contained cancer cells, three young Jewish doctors refused, saying they wouldn’t conduct research on patients without their consent. All three knew about the research Nazis had done on Jewish prisoners. They also knew about the famous Nuremberg Trials.

Sixteen years earlier, on August 20, 1947, a U.S.-led international war tribunal in Nuremberg, Germany, had sentenced seven Nazi doctors to death by hanging. Their crime was conducting unthinkable research on Jews without consent—sewing siblings together to create Siamese twins, dissecting people alive to study organ function.

The tribunal set forth a ten-point code of ethics now known as the Nuremberg Code, which was to govern all human experimentation worldwide. The first line in that code says, “The voluntary consent of the human subject is absolutely essential.” The idea was revolutionary. The Hippocratic Oath, written in the fourth century BC, didn’t require patient consent. And though the American Medical Association had issued rules protecting laboratory animals in 1910, no such rules existed for humans until Nuremberg.

But the Nuremberg Code—like other codes that would come after it—wasn’t law. It was, essentially, a list of recommendations. It wasn’t routinely taught in medical schools, and many American researchers—including Southam—clamied not to know it existed. Those who did know about it often thought of it as “the Nazi code,” something that applied to barbarians and dictators, not to American doctors.

When Southam began injecting people with HeLa cells in 1954, there was no formal research oversight in the United States. Since the turn of the century, politicians had been introducing state and federal laws with hopes of regulating human experimentation, but physicians and researchers always protested. The bills were repeatedly voted down for fear of interfering with the progress of science, even though other countries—including, ironically, Prussia—had enacted regulations governing human research as early as 1891.

In the United States, the only way to enforce research ethics was in the civil courts. There, lawyers could use the Nuremberg Code to establish whether a scientist was acting within the ethical boundaries of the profession. But taking a researcher to court required money, know-how, and the knowledge that you were being used for research in the first place.

The term informed consent first appeared in court documents in 1957, in a civil court ruling on the case of a patient named Martin Salgo. He went under anesthesia for what he thought was a routine procedure and woke up permanently paralyzed from the waist down. The doctor hadn’t told him the procedure carried any risks at all. The judge ruled against the doctor, saying, “A physician violates his duty to his patient and subjects himself to liability if he withholds any facts which are necessary to form the basis of an intelligent consent by the patient to the proposed treatment.” He wrote that there needed to be “full disclosure of facts necessary to an informed consent.”

Informed consent focused on what doctors were required to tell their patients; there was little mention of how it might apply to research like Southam’s, in which subjects weren’t the researcher’s patients. And it would be decades before anyone thought to ask whether informed consent should apply in cases like Henrietta’s, where scientists conduct research on tissues no longer attached to a person’s body.

But to the three doctors who refused to help with Southam’s research, injecting cancer cells into a person without consent was a clear violation of basic human rights and the Nuremberg Code. Mandel didn’t see it that way. He had a resident give the injections in their place, and on August 27, 1963, the three doctors wrote a resignation letter citing unethical research practices. They sent it to Mandel and at least one reporter. When Mandel got the letter, he called a meeting with one of the doctors, and accused them of being overly sensitive because of their Jewish ancestry.

One member of the hospital’s board of directors, a lawyer named William Hyman, didn’t think they were being overly sensitive. When he heard about the doctors’ resignation, he asked to see the records of patients in the study. But his request was denied. Meanwhile, just days after the doctors resigned, the New York Times ran a tiny news item deep in the paper under the headline SWEDEN PENALIZES CANCER SPECIALIST, about a cancer researcher named Bertil Björklund. He’d been giving himself and patients intravenous injections of vaccines made from HeLa cells, which he’d gotten from George Gey’s lab in such enormous quantities, they joked that instead of injecting them, Björklund could just fill a pool with HeLa—or maybe even a lake—and swim around in it for immunity. Björklund’s HeLa injections got him expelled from his laboratory, and Hyman hoped for similar results with Southam. So, in December 1963 he sued the hospital for access to medical records related to the study. Hyman compared Southam’s study to Nazi research and got affidavits from the three doctors who’d resigned—they described Southam’s research using words like illegal, immoral, and deplorable. Hyman also got an affidavit from a fourth doctor explaining that the patients in the study wouldn’t have been capable of giving informed consent even if Southam had asked: one had advanced Parkinson’s disease and couldn’t talk, others spoke only Yiddish, one had multiple sclerosis and “depressive psychosis.” Regardless, Hyman wrote, “I was informed that consent was not necessary … that it was unlikely that Jewish patients would agree to live cancer cell injections.”

That caught the media’s attention. The hospital called the suit “mis leading and fallacious.” But newspapers and magazines ran headlines saying:

PATIENTS INJECTED WITH CELLS NOT TOLD THEY
WERE CANCER … SCIENTIFIC EXPERTS CONDEMN
ETHICS OF CANCER INJECTION

They said the Nuremberg Code didn’t seem to apply in the United States, and that there were no laws protecting research subjects. Science magazine called it “the hottest public debate on medical ethics since the Nuremberg trials,” and said, “The situation at present appears rather perilous for everyone.” A reporter from Science asked Southam why, if the injections were as safe as he swore they were, he didn’t inject himself.

“Let’s face it,” Southam responded, “there are relatively few skilled cancer researchers, and it seemed stupid to take even the little risk.”

Patients who’d unknowingly been injected with cancer cells by Southam read the articles and began contacting reporters. New York State Attorney General Louis Lefkowitz learned about Southam’s research through the media as well, and immediately launched his own investigation. In a scathing five-page document filled with exclamation points, he accused Southam and Mandel of fraud and unprofessional conduct, and demanded that the Board of Regents of the University of the State of New York revoke their medical licenses. Lefkowitz wrote, “Every human being has an inalienable right to determine what shall be done with his own body. These patients then had a right to know … the contents of the syringe: and if this knowledge was to cause fear and anxiety or make them frightened, they had a right to be fearful and frightened and thus say NO to the experiment.”

Many doctors testified before the Board of Regents and in the media on Southam’s behalf, saying they’d been conducting similar research for decades. They argued that it was unnecessary to disclose all information to research subjects or get consent in all cases, and that Southam’s behavior was considered ethical in the field. Southam’s lawyers argued, “If the whole profession is doing it, how can you call it ‘unprofessional conduct’?”

This rattled the Board of Regents. On June 10, 1965, its Medical Grievance Committee found Southam and Mandel guilty of “fraud or deceit and unprofessional conduct in the practice of medicine” and recommended that their medical licenses be suspended for one year. The Board wrote, “There is evidenced in the record in this proceeding an attitude on the part of some physicians that they can go ahead and do anything … and that the patient’s consent is an empty formality. With this we cannot agree.”

Their decision called for more specific guidelines in clinical research, saying, “We trust that this measure of discipline will serve as a stern warning that zeal for research must not be carried to the point where it violates the basic rights and immunities of a human person.”

The suspensions of Southam’s and Mandel’s licenses were stayed, leaving them both on one-year probation instead. And the case seemed to have little impact on Southam’s professional standing: soon after the end of his probationary period, Southam was elected president of the American Association for Cancer Research. But his case brought about one of the largest research oversight changes in the history of experimentation on humans.

Before the Board of Regents announced its decision, the negative press about Southam’s work had gotten the attention of the NIH, which funded his research and required its investigators to get consent for all studies involving humans. In response to the Southam situation, the NIH investigated all their grantee institutions and found that only nine out of fifty-two had any policy in place to protect the rights of research subjects. Only sixteen used consentforms. The NIH concluded: “In the setting in which the patient is involved in an experimental effort, the judgment of the investigator is not sufficient as a basis for reaching a conclusion concerning the ethical and moral set of questions in that relationship.”

As a result of its investigation, the NIH said that to qualify for funding, all proposals for research on human subjects had to be approved by review boards—independent bodies made up of professionals and laypeople of diverse races, classes, and backgrounds—to ensure that they met the NIH’s ethics requirements, including detailed informed consent.

Scientists said medical research was doomed. In a letter to the editor of Science, one of them warned, “When we are prevented from attempting seemingly innocuous studies of cancer behavior in humans … we may mark 1966 as the year in which all medical progress ceased.”

Later that year, a Harvard anesthesiologist named Henry Beecher published a study in the New England Journal of Medicine showing that Southam’s research was only one of hundreds of similarly unethical studies. Beecher published a detailed list of the twenty-two worst offenders, including researchers who’d injected children with hepatitis and others who’d poisoned patients under anesthesia using carbon dioxide. Southam’s study was included as example number 17.

Despite scientists’ fears, the ethical crackdown didn’t slow scientific progress. In fact, research flourished. And much of it involved HeLa.

18 – “Strangest Hybrid” (1960-1966)

By the 1960s, scientists joked that HeLa cells were so robust that they could probably survive in sink drains or on doorknobs. They were everywhere. The general public could grow HeLa at home using instructions from a Scientific American do-it-yourself article, and both Russian and American scientists had managed to grow HeLa in space.

Henrietta’s cells went up in the second satellite ever in orbit, which was launched by the Russian space program in 1960, and almost immediately afterward, NASA shot several vials of HeLa into space in the Discoverer XVIII satellite. Researchers knew from simulated zero-gravity studies using animals that space travel could cause cardiovascular changes, degradtion of bone and muscle, and a loss of red blood cells. They also knew radiation levels were higher beyond the ozone layer. But they didn’t know what effects any of this would have on humans: Would it cause cellular changes, or even cell death?

When the first humans went into orbit, Henrietta’s cells went with them so researchers could study the effects of space travel, as well as the nutritional needs of cells in space, and how cancerous and noncancerous cells responded differently to zero gravity. What they found was disturbing: in mission after mission, noncancerous cells grew normally in orbit, but HeLa became more powerful, dividing faster with each trip.

And HeLa cells weren’t the only ones behaving strangely. Since the start of the decade, researchers had been noticing two new things about all cultured cells. First, it seemed that all normal cells growing in culture eventually died or underwent spontaneous transformation and became cancerous. This phenomenon was exciting for researchers trying to understand the mechanisms of cancer, because it suggested that they might be able to study the moment a normal cell becomes malignant. But it was disturbing for those trying to use cell culture to develop medical therapies.

George Hyatt, a Navy doctor working with the National Cancer Institute, had experienced this phenomenon firsthand. He’d cultured human skin cells for treating badly burned soldiers, then created a wound on a young volunteer officer’s arm and smeared the cells across it, hoping they’d grow to form a new layer of skin. If it worked, it might mean doctors could use skin-cell transplants to treat wounds in the field. The cells did grow, but when Hyatt biopsied them a few weeks later, they were all cancerous. He panicked, removed the cells, and hadn’t tried transplanting skin cells since.

The other unusual thing scientists had noticed about cells growing in culture was that once they transformed and became cancerous, they all behaved alike—dividing identically and producing exactly the same proteins and enzymes, even though they’d all produced different ones before becoming malignant. Lewis Coriell, a renowned cell culturist, thought he might have an explanation. He published a paper suggesting that perhaps “transformed” cells behaved the same not because they’d become cancerous, but because they’d been contaminated by something—most likely a virus or bacterium—that made them behave similarly. Almost as an aside, he pointed out one possibility that other researchers hadn’t considered: all transformed cells seemed to behave identically to HeLa, he wrote, which could mean that HeLa was the contaminant.

Soon after his paper was published, Coriell and a few other top tissue culturists called an urgent meeting to talk about the state of their field, which they worried was becoming a disaster. They’d mastered the techniques of cell culture and simplified them to such a degree that, as one researcher put it, they’d “made it possible for even the rank amateur to grow a few cultures.”

In recent years, using tissue samples from themselves, their families, and their patients, scientists had grown cells of all kinds—prostate cancer, appendix, foreskin, even bits of human cornea—often with surprising ease. Researchers were using that growing library of cells to make historic discoveries: that cigarettes caused lung cancer; how X-rays and certain chemicals transformed normal cells into malignant ones; why normal cells stopped growing and cancer cells didn’t. And the National Cancer Institute was using various cells, including HeLa, to screen more than thirty thousand chemicals and plant extracts, which would yield several of today’s most widely used and effective chemotherapy drugs, including Vincristine and Taxol.

Despite the importance of this research, many scientists seemed cavalier about their cultures. Few kept clear records of which cells grew from which donors, and many mislabeled their cultures, if they labeled them at all. For scientists doing research that wasn’t cell-specific, like investigating the effects of radiation on DNA, not knowing what kind of cell they were working on might not affect the outcome of their research. But if cells were contaminated or mislabeled in research that was cell-specific—as much research was—the results would be worthless. Regardless, the culturists who called the meeting said, precision was essential in science, and researchers should know what cells they were using, and whether they were contaminated.

According to Robert Stevenson, one of the scientists involved in the meeting, their goal was to keep the field from “degenerating into complete chaos.” The group encouraged researchers to use protective measures, like working under hoods with suction that pulled air and potential contaminants into a filtration system. And they recommended that the NIH establish a reference collection of cells: a central bank where all cultures would be tested, cataloged, and stored under maximum security, using state-of-the-art sterile techniques. The NIH agreed, and formed a Cell Culture Collection Committee made up of tissue culturists, including William Scherer, Lew Coriell, and Robert Stevenson. Their mission was to establish a nonprofit federal cell bank at the American Type Culture Collection (ATCC), which had been distributing and monitoring the purity of bacteria, fungi, yeast, and viruses since 1925, but never cultured cells.

The scientists on the Collection Committee set out to create the Fort Knox of pure, uncontaminated cell culture. They transported cultures in locked suitcases and developed a list of criteria all cells had to meet before being banked: each had to be tested for any possible contamination, and they all had to come directly from the original source.

Cell number one in the ATCC’s collection was the L-cell, the original immortal mouse cell line grown by Wilton Earle. For cell number two, the committee contacted Gey asking for a sample from the original HeLa culture. But in his initial excitement, Gey had given all of the original HeLa cells to other researchers and kept none for himself. He eventually tracked some down in the lab of William Scherer, who’d used some of the original HeLa sample in their polio research.

Initially the committee could only test samples for viral and bacterial contamination, but soon a few of its members developed a test for cross-species contamination, so they could determine whether cultures labeled as being from one animal type were actually from another. They quickly found that of ten cell lines thought to be from nine different species—including dog, pig, and duck—all but one were actually from primates. They promptly relabeled those cultures, and it seemed they’d gotten the situation under control without attracting any bad publicity.

The media, it turned out, was far more interested in a bit of HeLa-related news that was almost as sensational as Alexis Carrel’s immortal chicken heart. And it all started with cell sex.

In 1960, French researchers had discovered that when cells were infected with certain viruses in culture, they clumped together and sometimes fused. When they fused, the genetic material from the two cells combined, as with sperm meeting egg. The technical name for this was somatic cell fusion, but some researchers called it “cell sex.” It was different from sperm-and-egg sex in several important ways: somatic cells were cells of the body, like skin cells, and their union produced offspring every few hours. Perhaps most important, cell sex was entirely controlled by researchers.

Genetically speaking, humans are terrible research subjects. We’re genetically promiscuous—we mate with anyone we choose—and we don’t take kindly to scientists telling us who to reproduce with. Plus, unlike plants and mice, it takes us decades to produce enough offspring to give scientists much meaningful data. Since the mid-1800s, scientists had studied genes by breeding plants and animals in specific ways—a smooth pea with a wrinkled one, abrown mouse with a white one—then breeding their offspring to see how genetic traits passed from one generation to the next. But they couldn’t study human genetics the same way. Cell sex solved that problem, because it meant researchers could combine cells with any traits they wanted and study how those traits were passed along.

In 1965 two British scientists, Henry Harris and John Watkins, took cell sex an important step further. They fused HeLa cells with mouse cells and created the first human-animal hybrids—cells that contained equal amounts of DNA from Henrietta and a mouse. By doing this, they helped make it possible to study what genes do, and how they work.

In addition to the HeLa-mouse hybrid, Harris fused HeLa with chicken cells that had lost their ability to reproduce. His hunch was that when those deactivated chicken cells fused with HeLa, something inside HeLa would essentially turn the chicken cell back on. He was right. He didn’t know how it worked yet, but his discovery showed that something in cells regulated genes. And if scientists could figure out how to turn disease genes off, they might be able to create a form of gene therapy.

Soon after Harris’s HeLa-chicken study, a pair of researchers at New York University discovered that human-mouse hybrids lost their human chromosomes over time, leaving only the mouse chromosomes. This allowed scientists to begin mapping human genes to specific chromosomes by tracking the order in which genetic traits vanished. If a chromosome disappeared and production of a certain enzyme stopped, researchers knew the gene for that enzyme must be on the most recently vanished chromosome.

Scientists in laboratories throughout North America and Europe began fusing cells and using them to map genetic traits to specific chromosomes, creating a precursor to the human genome map we have today. They used hybrids to create the first monoclonal antibodies, special proteins later used to create cancer therapies like Herceptin, and to identify the blood groups that increased the safety of transfusions. They also used them to study the role of immunity in organ transplantation. Hybrids proved it was possible for DNA from two unrelated individuals, even of different species, to survive together inside cells without one rejecting the other, which meant the mechanism for rejecting transplanted organs had to be outside cells.

Scientists were ecstatic about hybrids, but throughout the United States and Britain, the public panicked as the media published one sensational headline after the next:

MAN-ANIMAL CELLS ARE BRED IN LAB … THE NEXT STEP COULD BE TREE MEN … SCIENTISTS CREATE MONSTERS

The Times of London called the HeLa-mouse cells the “strangest hybrid form of life ever seen in the lab—or out of it.” A Washington Post editorial said, “We cannot afford any artificially induced mouse-men.” It called the research “horrendous” and said the researchers should leave humans alone and “go back to their yeasts and fungi.” One article ran with an image of a half-human, half-mouse creature with a long, scaly tail; another ran with a cartoon of a hippopotamus-woman reading the newspaper at a bus stop. The British press called the HeLa hybrids an “assault on life,” and portrayed Harris as a mad scientist. And Harris didn’t help the situation: he caused near-pandemonium when he appeared in a BBC documentary saying that the eggs of man and ape could now be joined to create a “mape.”

Harris and Watkins wrote letters to editors complaining they’d been quoted out of context, their story sensationalized to “distort, misrepresent and terrify.” They assured the public that they were just creating cells, not “trying to produce centaurs.” But it didn’t help. A public survey about their research was overwhelmingly negative, calling it pointless and dangerous, an example of “men trying to be gods.” And the PR problem for cell culture was only going to get worse from there.

19 – “The Most Critical Time on This Earth Is Now” (1966-1973)

When Deborah was a junior in high school, at the age of sixteen, she got pregnant with her first child. Bobbette cried when she found out. Deborah stopped going to school and Bobbette said, “Don’t get too comfortable cause you’re goin to graduate.” Deborah yelled right back, saying she couldn’t go to school all big and pregnant.

“That don’t matter,” Bobbette said, “you’re goin to that special girls school where all the pregnant girls have big bellies just like you.”

Deborah refused, but Bobbette filled out the application for her and dragged her there for her first day of class. On November 10, 1966, Deborah gave birth to Alfred Jr., who she named after his father, Alfred “Cheetah” Carter, the boy Galen had once been jealous of. Each morning, Bobbette made Deborah’s lunch, got her to school, then took care of Alfred all day and most of the night so Deborah could go to class and study. When Deborah graduated, Bobbette made her get her first job—whether Deborah liked it or not, Bobbette was going to help her and that baby.

Deborah’s older brothers were doing fine on their own. Lawrence went into business for himself, opening a convenience store in the basement of an old townhouse; Sonny had graduated from high school, joined the air force, and grown into a handsome ladies’ man. He did some running around, but pretty much stayed out of trouble. Their younger brother, Joe, was another story.

Authority didn’t agree with Joe. He argued with teachers and brawled with other students. He dropped out of school in the seventh grade and ended up in court for “assault by striking” right after his seventeenth birthday. He joined the military at eighteen, but his anger and attitude got him in even more trouble there. He fought his superiors and other soldiers. Sometimes he ended up in the hospital, but more often than not, his fighting landed him in solitary confinement, a dark hole with dirt walls ominously similar to the basement where Ethel once locked him as a child. He preferred being in the hole because it meant no one would bother him. As soon as they let him out, he’d fight another soldier or get belligerent with an officer and they’d throw him back in. He spent nine months in the service, most of it sitting in the hole, growing angrier and angrier. After multiple psychiatric evaluations and treatments, Joe was discharged for an inability to adjust emotionally to military life.

His family had hoped the military would help control his rage and teach him some discipline and respect for authority. Instead, he came out of the military angrier than ever.

A week or so after Joe got home from the military, a tall, skinny neighborhood kid named Ivy walked up to him with a knife and asked if he wanted to start something. Most people wouldn’t have done that. At nineteen, Joe was at least four inches shorter than Ivy and only 155 pounds, but people in the neighborhood called him Crazy Joe because he seemed to enjoy violence. Ivy didn’t care. He’d been drinking heavily and shooting heroin for years, and he was covered in scars from fighting. He told Joe he was going to kill him.

Joe ignored Ivy the first time. Then, about three months later, on September 12, 1970, Joe was walking down an East Baltimore street with his friend June. It was Saturday night, they'd been drinking, and they’d just started talking up a group of young girls when three other men walked up the street toward them. One of those men was Eldridge Lee Ivy.

When Ivy saw Joe and June talking to the girls, he yelled, saying one of them was his cousin, and they’d better stop messing with her.

“I’m tired of your junk,” June yelled back.

The two started arguing, and when Ivy threatened to punch June in the face, Joe jumped between them, calmly telling Ivy he would do no such thing.

Ivy grabbed Joe by the neck, choking him while his two friends tried to pull him off. Joe kicked and yelled, “I’m going to kill your mother fuckin ass!” But Ivy beat him bloody while June watched, terrified.

That night, Joe knocked on Deborah’s door. He stared ahead, covered in blood, eyes burning with hate as she cleaned his face and put him on her couch to sober up with some ice packs. He glared at the wall all night, looking scarier and angrier than Deborah had ever seen a person look.

The next morning, Joe went into Deborah’s kitchen and took her good carving knife with the black wood handle. Two days later, on September 15, 1970, Joe went to work at his job driving for a local trucking company. By five o’clock, he and a coworker had shared a fifth of Old Granddad whiskey, then another pint. It was still daylight out when Joe got off work and walked to the corner of Lanvale and Montford Avenues in East Baltimore, where Ivy stood on the front stoop of his house, talking to some friends. Joe crossed the street and said, “Hi Ivy,” then stabbed him in the chest with Deborah’s knife. The blade went straight through Ivy’s heart. He staggered down the street and into a neighbor’s house with Joe close behind, then collapsed facedown into a pool of his own blood, yelling, “Oh, I’m dying—call an ambulance!” But it was too late. When a fireman arrived a few minutes later, Ivy was dead.

Joe walked away from the murder scene, dropped the knife in a nearby alley, and headed to a pay phone to call his father, but the police had beaten him to it. They’d told Day his son had killed a boy. Sonny and Lawrence told their father to get Joe to Clover, back to the tobacco farms, where he could hide from the law and be safe. Deborah said they were crazy.

“He’s got to turn himself in,” she told them. “The police got a warrant out saying he wanted dead or alive.”

But the men didn’t listen. Day gave Joe twenty dollars and put him on a Trailways bus to Clover.

In Lacks Town, Joe drank all day, picked fights with his cousins, and threatened to kill several of them, including Cootie. By the end of Joe’s first week, Cootie called Day saying somebody had better come get Joe before he killed someone else or got himself shot. Sonny borrowed Day’s car, picked Joe up in Clover, and took him to D.C. to stay with a friend. But Joe couldn’t get along there either. The next morning he called Sonny and said, “Come pick me up, I want to turn myself in.”

On the morning of September 29, 1970, Joe walked into the Baltimore police headquarters and calmly said, “I’m Joe Lacks. I’m wanted cause I killed Ivy.” Then he filled out this form:

After that, Joe waited. He knew he was going to plead guilty—he just wanted to get on with it. After five months awaiting trial in a cell, Joe wrote this letter to the criminal court judge:

Dear Sir or Your Honor,

In the most critical time on this earth is now on this atmosphere today of my missteak no I’ll say wronge com prehendion of corruption that I’ve place on myself. A very miss lead problem that was not ment to be. Feel so frustration in making me obnoxious within me, Asking for a (speedly trial) to Let me know what lays ahead in the future, I feel as thod I sure be castigate or chastise for the wronge I’ve did, So I’m ready to get it over now with it.

Joe Lacks (Speedly trial)
(Thank you)
(Your Honor)

Finally, on April 6, 1971—seven months after Ivy’s death—Joe stood in a courtroom and pleaded guilty to murder in the second degree, with Sonny watching nearby. The judge warned Joe repeatedly that a guilty plea meant waiving his right to a trial, his right to testify, and his right to appeal her ruling. As the judge spoke, he said “yes ma’am” and “no ma’am.” He told her the alcohol had made him do it and that he hadn’t meant to kill Ivy.

“I tried to hit on top of his shoulder, and he panicked and turned and caught it in the chest,” Joe said. “I was trying to wound him so I wouldn’t let him hurt me. … He told me he was going to kill me that Saturday night me and him got into the argument. I just hope you see I was trying to protect my life. I was not really wanting any trouble out of no one at all.” But Ivy’s fourteen-year-old neighbor, who’d seen the whole thing, said Joe had walked right up and stabbed Ivy in the chest, then tried to stab him again in the back as he staggered away.

When Joe stepped from the stand, his court-appointed lawyer approached the judge to make this final point:

The only thing I would add, Your Honor, is that I talked to his brother about the young man, and the problem that he also had in the Army, is a problem that possibly got him into the situation he is in Court for today. For some reason, somewhere in his life, he has gotten an inferiority complex. And it seems to be a sizable one. It seems that whenever he is confronted by any individual, he sort of takes it rather aggressively, more so than the average individual… for the record, [he] had some psychiatric help in the service, but he has never been in any hospital.

Without knowing anything about Joe’s life or the abuse he experienced as a child, his lawyer said, “He feels it more necessary to protect himself than the average individual. And possibly, this sets him off, where it would not set off the average person.”

“Do people call you Crazy Joe?” the judge asked. “There was a few friends that called me that,” Joe said. “Do you know why they call you that?”

“No ma’am,” he said.

The judge accepted Joe’s guilty plea, but asked to see medical and psychiatric reports before deciding his sentence. Those records are sealed, but whatever they contained led her to give him a sentence of only fifteen years out of a possible thirty. The state sent Joe to the Mary land Correctional Institution in Hagerstown, a medium-security prison about seventy-five miles west of Baltimore.

In the beginning, Joe spent his time in prison much as he’d spent it in the military: in the hole for insubordination and fighting. But eventually he stopped fighting and focused his energy inward. Joe found Islam and began spending all his time studying the Koran in his cell. Soon he changed his name to Zakariyya Bari Abdul Rahman.

Meanwhile, on the outside, things were looking pretty good for the other Lacks brothers. Sonny had just been honorably discharged from the Air Force, and Lawrence had a good job working for the railroad. But things weren’t so good for Deborah. By the time Zakariyya ended up in prison, Deborah had married Cheetah in a blue chiffon dress in Bobbette and Lawrence’s living room. She was eighteen. When Deborah and Cheetah first met, he threw a bowling ball at her on the sidewalk in front of her house. She thought he was playing, but things only got worse after they married. Soon after their second child, LaTonya, was born, Cheetah fell into drugs and started beating Deborah when he was high. Then he started running the streets, disappearing with other women for nights on end, and coming back only to sell drugs out of the house while Deborah’s children sat and watched.

One day, as Deborah stood at the sink doing dishes, her hands covered in soap bubbles, Cheetah ran into the kitchen yelling something about her sleeping around on him. Then he smacked her.

“Don’t do that again,” Deborah said, standing stone-still, her hands still in the dishwater. Cheetah grabbed a plate from the drying rack and broke it across the side of her face. “Don’t put your hand back on me no more!” Deborah screamed, her hand shooting out of the dishwater, gripping a serrated steak knife.

Cheetah raised his arm to hit her again, but he was clumsy from the drugs and booze. Deborah blocked him with her empty hand and pinned him against the wall. She stuck the tip of the knife into his chest just deep enough to break the skin, then dragged it down past his navel as Cheetah screamed, calling her crazy.

He left her alone for a few days after that, but eventually came home drunk and high and started beating her again. As Cheetah kicked her one night in the living room, Deborah yelled, “Why you always have to be arguing and fussing with me?” When he didn’t answer, Deborah decided right then she wanted him dead. He turned and staggered toward the stairs of their apartment, still yelling, and Deborah pushed him hard as she could. He tumbled to the bottom, where he lay bleeding. Deborah stared at him from the top of the stairs, feeling nothing—no fear, no emotion. When he moved, she walked down the steps and dragged him through their basement onto the sidewalk outside. It was the middle of winter and snowing. Deborah dropped him on the ground in front of the house without a coat, slammed the door, and went upstairs to sleep.

The next morning she woke up hoping he’d frozen to death, but instead he was sitting on their front stoop, bruised and cold.

“I feel like some guys jumped me and beat me up,” he told her.

She let him in the house and got him washed and fed, all the while thinking what a damn fool he was. While Cheetah slept it off, Deborah called Bobbette, saying, “This is it, he gonna die tonight.”

“What are you talking about?” Bobbette asked.

“I got the monkey wrench,” Deborah said. “I’m gonna splatter his brains all over the wall. I’m sick of it.”

“Don’t do it, Dale,” Bobbette said. “Look where it got Zakariyya—he’s in jail. You kill that man, then what about your children? Now get that monkey wrench outta there.”

The next day, after Cheetah left for work, a moving van pulled up to the house. Deborah took the children and everything they owned, then hid at her father’s house until she could find her own apartment. As Deborah worked two jobs and struggled to settle into her new life as a single mother, she had no idea she was about to get news that would be harder to handle than anything Cheetah had done.

20 – The HeLa Bomb (1966)

In September 1966, a geneticist named Stanley Gartler walked up to the podium at a hotel in Bedford, Pennsylvania. There, in front of George Gey and the other giants of cell culture, Gartler announced that he’d found a “technical problem” in their field.

He was at the Second Decennial Review Conference on Cell Tissue and Organ Culture with more than seven hundred other scientists. They’d come from biotech companies and academia; they’d traveled from New York, England, the Netherlands, Alaska, Japan, and everywhere between to discuss the future of cell culture. The room buzzed with excitement as everyone talked about cell cloning and hybrids, mapping human genes, and using cultures to cure cancer.

Few there had heard of Stanley Gartler, but that was about to change. Gartler leaned into the microphone and told the audience that, in the process of looking for new genetic markers for his research, he’d found that eighteen of the most commonly used cell cultures had one thing in common: they all contained a rare genetic marker called glucose-6-phosphate dehydrogenase-A (G6PD-A), which was present almost exclusively in black Americans. And even among them it was fairly rare.

“I have not been able to ascertain the supposed racial origin of all eighteen lines,” Gartler told the audience. “It is known, however, that at least some of these are from Caucasians, and that at least one, HeLa, is from a Negro.” He knew this, because a few months earlier, he’d written George Gey:

I am interested in the racial origin of the person from whom your HeLa cell line was initiated. I have checked a number of the early papers describing the development of the HeLa cell line but have not been able to find any information pertaining to the race of the donor.

When Gey responded that HeLa cells had come from “a colored woman,” Gartler knew he’d found the source of the problem.

“It seems to me the simplest explanation,” he told the audience, “is that they are all HeLa cell contaminants.”

Scientists knew they had to keep their cultures free from bacterial and viral contamination, and they knew it was possible for cells to contaminate one another if they got mixed up in culture. But when it came to HeLa, they had no idea what they were up against. It turned out Henrietta’s cells could float through the air on dust particles. They could travel from one culture to the next on unwashed hands or used pipettes; they could ride from lab to lab on researchers’ coats and shoes, or through ventilation systems. And they were strong: if just one HeLa cell landed in a culture dish, it took over, consuming all the media and filling all the space.

Gartler’s findings did not go over well. In the fifteen years since George Gey had first grown HeLa, the number of published articles involving cell culture had more than tripled each year. Scientists had spent millions of dollars conducting research on those cells to study the behavior of each tissue type, comparing one to another, testing the unique responses of different cell types to specific drugs, chemicals, or environments. If all those cells were in fact HeLa, it would mean that millions of dollars had been wasted, and researchers who’d found that various cells behaved differently in culture could have some explaining to do.

Years later, Robert Stevenson, who became president of the American Type Culture Collection, described Gartler’s talk to me this way: “He showed up at that meeting with no background or anything else in cell culture and proceeded to drop a turd in the punch bowl.”

Stevenson and other members of the Cell Culture Collection Committee sat stunned in the audience as Gartler pointed to a chart on the wall listing the eighteen cell lines that had been contaminated by HeLa, along with the names of the people or places he’d gotten them from. At least six of the contaminated lines came from the ATCC. HeLa had penetrated Fort Knox. At that point, the ATCC’s collection had grown to dozens of different types of cells, all guaranteed to be free from viral and bacterial contamination, and tested to ensure that they hadn’t been contaminated with cells from another species. But there was no test to see if one human cell had contaminated another. And, to the naked eye, most cells growing in culture look the same.

Now Gartler was essentially telling the audience that all those years researchers thought they were creating a library of human tissues, they’d probably just been growing and regrowing HeLa. He pointed out that a few years earlier, when scientists started taking protective measures against cross-species contamination—such as working under sterile hoods—it had suddenly become harder to grow new cell lines. And in fact, “very few [new human cell lines] have been reported since.” Not only that, he said, but there had been no new examples of “so-called spontaneous transformed human cell cultures” since.

Everyone in the audience knew what that meant. On top of saying they’d possibly wasted more than a decade and millions of research dollars, Gartler was also suggesting that spontaneous transformation—one of the most celebrated prospects for finding a cure for cancer—might not exist. Normal cells didn’t spontaneously become cancerous, he said; they were simply taken over by HeLa.

Gartler concluded his talk by saying, “Where the investigator has assumed a specific tissue of origin of the cell line, i.e., liver … or bone marrow, the work is open to serious question, and in my opinion would be best discarded.”

The room sat silent, dumbfounded, until T. C. Hsu, the chair of Gartler’s conference session, spoke. Hsu was the University of Texas geneticist whose earlier work with HeLa and other cells had made it possible to discover the correct number of human chromosomes.

“A few years ago I voiced some suspicion about cell-line contamination,” Hsu said. “So I am happy about the paper by Dr. Gartler and am also sure he has made many people unhappy.”

He was right, and those people quickly began asking questions.

“How long did you keep them in your laboratory?” one scientist asked, suggesting that Gartler had contaminated the cells himself after they arrived in his lab.

“They were analyzed before being grown in my laboratory,” Gartler responded.

“They didn’t send them to you frozen?” the scientist asked, knowing that contamination could have occurred while they thawed.

Gartler said that didn’t matter—the cells didn’t have to be thawed to be tested.

Another scientist wanted to know if the similarity Gartler was seeing between cell lines was just the effect of spontaneous transformation making all cells act the same.

Eventually Robert Stevenson of the Cell Culture Collection Committee spoke up, saying, “It looks like more detective work is needed to see … whether we are going to have to start all over again to isolate some new human cell lines.”

Hsu stepped in and said, “I would like to give particular priority to those who initiated the cell lines, whom Dr. Gartler has attacked. If there is any defense, we would like to hear it.”

Harvard’s Robert Chang—whose widely used Chang Liver Cell line was listed as a HeLa contaminant on Gartler’s chart—glared from his seat. Chang had used those cells to discover enzymes and genes specific to liver cells. If Gartler was right and the cells were actually from Henrietta’s cervix, Chang’s liver research using them was worthless.

Leonard Hayflick had an especially personal connection with his cell line, WISH, which Gartler had listed as contaminated: he’d grown it using cells from the amniotic sac in which his unborn daughter had once floated. He asked Gartler whether it was possible to find G6PD-A in samples from white people.

“Caucasian subjects with G6PD-A have not been reported,” Gartler told him.

Later that day—in a talk chaired by George Gey—Hayflick delivered a paper, on the “facts and theories” of spontaneous transformation of cells in culture. Before beginning his talk, Hayflick stood at the podium and announced that, since WISH cells supposedly tested positive for a genetic marker found only in black people, he’d called his wife during the break to ask if he was, in fact, his daughter’s father. “She assured me that my worst fears were unfounded,” Hayflick said. The room erupted in laughter, and no one said anything else publicly about Gartler’s findings.

But a few people took Gartler seriously: before leaving the conference, Stevenson met several of the top cell culturists for lunch. He told them to go back to their labs after the conference and start testing cells for the G6PD-A genetic marker, to see how widespread this problem might be. Many of their cell lines tested positive, including the skin cells George Hyatt had transplanted onto a soldier’s arm years earlier. Since Hyatt had no HeLa cells in his lab at the time, the cells in his experiment must have been contaminated before they arrived. And though few realized it, the same thing was happening in laboratories around the world.

Still, many scientists refused to believe HeLa contamination was real. After the conference where Gartler dropped what became known as “the HeLa bomb,” most researchers kept right on working with the cells he’d said were contaminated. But Stevenson and a few other scientists realized the potential scope of the HeLa contamination problem, so they began working to develop genetic tests that could specifically identify HeLa cells in culture instead of just testing for the presence of G6PD-A. And those genetic tests would eventually lead them to Henrietta’s family.

21 – Night Doctors (2000)

Two months after Sonny Lacks stood me up, I sat waiting for him again, this time in the lobby of the Baltimore Holiday Inn. It was New Year’s Day, and he was nearly two hours late. I figured he’d backed out again, so I started packing to leave. Then I heard a man’s voice yell, “So you’re Miss Rebecca!”

Suddenly, Sonny was standing beside me with a sweet and bashful gap-toothed grin that made him look like a fifty-year-old teenager. He laughed and patted me on the back.

“You just won’t give up, will you?” he said. “I got to tell you, only person I know more hard-headed than you is my sister Dale.” He grinned and straightened his black driving cap. “I tried to convince her to come meet you today, but she won’t listen.”

Sonny had a loud laugh and mischievous eyes that squinted nearly closed when he smiled. His face was warm and handsome, open to the world. He was thin, five foot nine at most, with a carefully manicured mustache. He reached for my bag.

“Okay then,” he said, “we best get this thing goin.”

I followed him to a Volvo he’d left unlocked and idling in the parking lot next to the hotel. He’d borrowed it from one of his daughters. “Nobody wants to ride in my old raggedy van,” he said, easing the car into gear. “You ready to go see the Big Kahuna?”

“The Big Kahuna?”

“Yep,” he said, grinning. “Deborah says you got to talk to our brother Lawrence before anybody else talk to you. He’ll check you out, decide what’s what. If he say it’s okay, maybe then the rest of us will talk to you.”

We drove in silence for several blocks.

“Lawrence is the only one of us kids who remembers our mother,” Sonny said eventually. “Deborah and I don’t know nothing about her.” Then, without looking from the road, Sonny told me everything he knew about his mother.

“Everybody say she was real nice and cooked good,” he said. “Pretty too. Her cells have been blowed up in nuclear bombs. From her cells came all these different creations—medical miracles like polio vaccines, some cure for cancer and other things, even AIDS. She liked takin care of people, so it make sense what she did with them cells. I mean, people always say she was really just hospitality, you know, fixing everything up nice, make a good place, get up, cook breakfast for everybody, even if it’s twenty of them.”

He pulled into an empty alley behind a row of red brick townhouses and looked at me for the first time since we’d gotten in the car.

“This is where we take scientists and reporters wanting to know about our mother. It’s where the family gangs up on them,” he said, laughing. “But you seem nice, so I’ll do you a favor and not go get my brother Zakariyya this time.”

I got out of the car and Sonny drove away, yelling, “Good luck!” out the window.

All I knew about Sonny’s brothers was that they were angry and one of them had murdered someone—I wasn’t sure which one, or why. A few months earlier, when Deborah gave me Lawrence’s phone number and swore she’d never talk to me, she’d said, “Brother gets mad when white folks come askin about our mother.”

As I walked through a narrow, half-cement yard from the alley to Lawrence’s house, a wisp of smoke seeped through the screen door of his kitchen, where static blared from a small television on a folding table. I knocked, then waited. Nothing. I stuck my head into the kitchen, where fat pork chops sat burning on the stove. I yelled hello. Still nothing.

I took a deep breath and walked inside. As I closed the door be hind me, Lawrence appeared, seeming bigger than two of me, his 275-pound, six-foot frame spanning the width of the narrow kitchen, one hand on the counter, the other on the opposite wall.

“Well hello there, Miss Rebecca,” he said, giving me a once-over. “You wanna taste the meat I cooked?”

It had been a decade or so since I’d eaten pork, but suddenly that seemed irrelevant. “How could I resist?” I said.

A sweet grin spread across Lawrence’s face. He was sixty-four, but aside from his gray curls, he seemed decades younger, with smooth hazelnut-brown skin and youthful brown eyes. He hiked up his baggy blue jeans, wiped his hands on his grease-stained T-shirt, and clapped.

“Okay then,” he said, “that’s good. That’s real good. I’m gonna fry you up some eggs too. You’re too damn skinny.”

While he cooked, Lawrence talked about life down in the country. “When older folks went to town to sell tobacco, they’d come back with a piece of bologna for us kids to share. And sometimes if we were good, they’d let us sop up the bacon grease with a piece of bread.” His memory for detail was impressive. He drew pictures of the horse-drawn wagon Day had made out of two-by-fours. He showed me, with string and napkins, how he tied tobacco into bundles for drying when he was a child.

But when I asked about his mother, Lawrence fell silent. Eventually he said, “She was pretty.” Then he went back to talking about tobacco. I asked about Henrietta again and he said, “My father and his friends used to race horses up and down Lacks Town road.” We went in circles like this until he sighed and told me he didn’t remember his mother. In fact, he said, he didn’t remember most of his teen years.

“I blacked it out of my mind because of the sadness and hurting,” he told me. And he had no intention of unblocking it.

“The only memory I have about my mother is her being strict,” he told me. He remembered her making him hand-wash diapers in the sink; he’d hang them to dry, then she’d dump them back in the water, saying they weren’t clean enough. But the only times she whipped him were for swimming off the pier in Turner Station. “She’d make me go fetch a switch to get a beatin with, then send me back out sayin get a bigger one, then a bigger one, then she’d wrap all them together and haul off on my tail.”

As he talked, the kitchen filled with smoke again—we’d both forgotten he was cooking. Lawrence shooed me from the kitchen table into the living room, where he sat me in front of a plastic Christmas placemat with a plate of fried eggs and a chunk of charred pork the size of my hand, only thicker. Then he collapsed into a wooden chair beside me, put his elbows on his knees, and stared at the floor in silence while I ate.

“You’re writing a book about my mama,” he said finally. I nodded as I chewed.

“Her cells growin big as the world, cover round the whole earth,” he said, his eyes tearing as he waved his arms in the air, making a planet around him. “That’s kinda weird … They just steady growin and growin, steady fightin off whatever they fightin off.”

He leaned forward in his chair, his face inches from mine, and whispered, “You know what I heard? I heard by the year 2050, babies will be injected with serum made from my mama’s cells so they can live to eight hundred years old.” He gave me a smile like, I bet your mama can’t top that. “They’re going to get rid of disease,” he said. “They’re a miracle.”

Lawrence fell back in his chair and stared into his lap, his smile collapsing. After a long quiet moment, he turned and looked into my eyes.

“Can you tell me what my mama’s cells really did?” he whispered. “I know they did something important, but nobody tells us nothing,”

When I asked if he knew what a cell was, he stared at his feet as if I’d called on him in class and he hadn’t done his homework.

“Kinda,” he said. “Not really.”

I tore a piece of paper from my notebook, drew a big circle with a small black dot inside, and explained what a cell was, then told him some of the things HeLa had done for science, and how far cell culture had come since.

“Scientists can even grow corneas now,” I told him, reaching into my bag for an article I’d clipped from a newspaper. I handed it to him and told him that, using culturing techniques HeLa helped develop, scientists could now take a sample of someone’s cornea, grow it in culture, then transplant it into someone else’s eye to help treat blindness.

“Imagine that,” Lawrence said, shaking his head. “It’s a miracle!”

Suddenly, Sonny threw open the screen door, yelling, “Miss Rebecca still alive in here?” He leaned in the doorway between the kitchen and living room.

“Looks like you passed the test,” he said, pointing at my half-empty plate.

“Miss Rebecca telling me about our mother cells,” Lawrence said. “She told me fascinating stuff. Did you know our mother cells gonna be used to make Stevie Wonder see?”

“Oh, well, actually, it’s not her cells being put into people’s eyes,” I said, stammering. “Scientists are using technology her cells helped develop to grow other people’s corneas.” “That’s a miracle,” Sonny said. “I didn’t know about that, but the other day President Clinton said the polio vaccine is one of the most important things that happened in the twentieth century, and her cells involved with that too.”

“That’s a miracle,” Lawrence said.

“So is this,” Sonny said, slowly spreading his arms and stepping aside to reveal his eighty-four-year-old father, Day, teetering on unsteady legs behind him.

Day hadn’t left the house in nearly a week because of a nosebleed that wouldn’t stop. Now he stood in the doorway in faded jeans, a flannel shirt, and blue plastic flip-flops, even though it was January. He was thin and frail, barely able to hold himself upright. His light brown face had grown tough with age, cracked but soft, like a pair of well-worn work boots. His silver hair was covered with a black driving cap identical to Sonny’s.

“He’s got the gangrene in his feet,” Sonny said, pointing to Day’s toes, which were several shades darker than the rest of him and covered with open sores. “His feet hurt too much in regular shoes.” Gangrene was spreading from Day’s toes to his knee; his doctor said his toes needed amputating, but Day refused. He said he didn’t want doctors cutting on him like they did Henrietta. At fifty-two, Sonny felt the same way; his doctors said he needed angioplasty, but he swore he’d never do it.

Day sat beside me, brown plastic sunglasses shading his constantly tearing eyes. “Daddy,” Lawrence yelled, “did you know mama’s cells gonna make Stevie Wonder see?” Day shook his head in what looked like slow motion. “Nope,” he mumbled. “Didn’t know that till just now. Don’t surprise me none though.”

Then there was a thump on the ceiling and the rustling of someone walking around, and Lawrence jumped from the table and ran into the kitchen. “My wife is a fire dragon without morning coffee,” he said. “I better make some.” It was two in the afternoon.

A few minutes later, Bobbette Lacks walked down the stairs and through the living room slowly, wearing a faded blue terrycloth robe. Everyone stopped talking as she passed and headed into the kitchen without saying a word or looking at anyone.

Bobbette seemed like a loud person being quiet, like a woman with an enormous laugh and temper who might erupt with either at any moment. She exuded Don’t mess with me, her face stern and staring straight ahead. She knew why I was there, and had plenty to say on the subject, but seemed utterly exhausted at the idea of talking to me, yet another white person wanting something from the family.

She disappeared into the kitchen and Sonny slid a crumpled piece of paper into Day’s hand, a printout of the picture of Henrietta with her hands on her hips. He grabbed my tape recorder from the center of the table, handed it to Day, and said, “Okay, Miss Rebecca got questions for you, Pop. Tell her what you know.”

Day took the recorder from Sonny’s hand and said nothing.

“She just want to know everything Dale always askin you about,” Sonny said.

I asked Sonny if maybe he could call Deborah to see if she’d come over, and the Lacks men shook their heads, laughing.

“Dale don’t want to talk to nobody right now,” Sonny said.

“That’s cause she’s tired of it,” Day grumbled. “They always askin questions and things, she keep givin out information and not gettin nuthin. They don’t even give her a postcard.”

“Yep,” Sonny said, “that’s right. All they wants to do is know everything. And that’s what Miss Rebecca wants too. So go on Daddy, tell her, just get this over with.”

But Day didn’t want to talk about Henrietta’s life.

“First I heard about it was, she had that cancer,” he said, repeating the story he’d told dozens of reporters over the years, almost verbatim. “Hopkins called me, said come up there cause she died. They asked me to let them have Henrietta and I told them no. I said, ‘I don’t know what you did, but you killed her. Don’t keep cuttin on her.’ But after a time my cousin said it wouldn’t hurt none, so I said okay.”

Day clenched his three remaining teeth. “I didn’t sign no papers,” he said. “I just told them they could do a topsy Nothin else. Them doctors never said nuthin about keepin her alive in no tubes or growin no cells. All they told me was they wanted to do a topsy see if they could help my children. And I’ve always just knowed this much: they is the doctor, and you got to go by what they say. I don’t know as much as they do. And them doctors said if I gave em my old lady, they could use her to study that cancer and maybe help my children, my grandchildren.”

“Yeah!” Sonny yelled. “They said it would help his kids in case they come down with cancer. He had five kids, what was he going to do?”

“They knew them cells was already growin when I come down there after she died,” Day said, shaking his head. “But they didn’t tell me nuthin bout that. They just asked if they could cut her up see about that cancer.”

“Well what do you expect from Hopkins?” Bobbette yelled from the kitchen, where she sat watching a soap opera. “I wouldn’t even go there to get my toenails cut.”

“Mmm hmm,” Day yelled back, thumping his silver cane on the floor like an exclamation point.

“Back then they did things,” Sonny said. “Especially to black folks. John Hopkins was known for experimentin on black folks. They’d snatch em off the street…”

“That’s right!” Bobbette said, appearing in the kitchen door with her coffee. “Everybody knows that.”

“They just snatch em off the street,” Sonny said.

“Snatchin people!” Bobbette yelled, her voice growing louder. “Experimentin on them!” Sonny yelled.

“You’d be surprised how many people disappeared in East Baltimore when I was a girl,” Bobbette said, shaking her head. “I’m telling you, I lived here in the fifties when they got Henrietta, and we weren’t allowed to go anywhere near Hopkins. When it got dark and we were young, we had to be on the steps, or Hopkins might get us.”

The Lackses aren’t the only ones who heard from a young age that Hopkins and other hospitals abducted black people. Since at least the 1800s, black oral history has been filled with tales of “night doctors” who kidnapped black people for research. And there were disturbing truths behind those stories.

Some of the stories were conjured by white plantation owners taking advantage of the long-held African belief that ghosts caused disease and death. To discourage slaves from meeting or escaping, slave owners told tales of gruesome research done on black bodies, then covered themselves in white sheets and crept around at night, posing as spirits coming to infect black people with disease or steal them for research. Those sheets eventually gave rise to the white hooded cloaks of the Ku Klux Klan.

But night doctors weren’t just fictions conjured as scare tactics. Many doctors tested drugs on slaves and operated on them to develop new surgical techniques, often without using anesthesia. Fear of night doctors only increased in the early 1900s, as black people migrated north to Washington, D.C., and Baltimore, and news spread that medical schools there were offering money in exchange for bodies. Black corpses were routinely exhumed from graves for research, and an underground shipping industry kept schools in the North supplied with black bodies from the South for anatomy courses. The bodies sometimes arrived, a dozen or so at a time, in barrels labeled turpentine.

Because of this history, black residents near Hopkins have long believed the hospital was built in a poor black neighborhood for the benefit of scientists—to give them easy access to potential research subjects. In fact, it was built for the benefit of Baltimore’s poor.

Johns Hopkins was born on a tobacco plantation in Maryland where his father later freed his slaves nearly sixty years before Emancipation. Hopkins made millions working as a banker and grocer, and selling his own brand of whiskey, but he never married and had no children. So in 1873, not long before his death, he donated $7 million to start a medical school and charity hospital. He wrote a letter to the twelve men he’d chosen to serve as its board of trustees, outlining his wishes. In it he explained that the purpose of Hopkins Hospital was to help those who otherwise couldn’t get medical care:

The indigent sick of this city and its environs, without regard to sex, age, or color, who require surgical or medical treatment, and who can be received into the hospital without peril to other inmates, and the poor of the city and State, of all races, who are stricken down by any casualty, shall be received into the hospital without charge.

He specified that the only patients to be charged were those who could easily afford it, and that any money they brought in should then be spent treating those without money. He also set aside an additional $2 million worth of property, and $20,000 in cash each year, specifically for helping black children:

It will be your duty hereafter to provide … suitable buildings for the reception, maintenance and education of orphaned colored children. I direct you to provide accommodations for three or four hundred children of this class; you are also authorized to receive into this asylum, at your discretion, as belonging to such class, colored children who have lost one parent only, and in exceptional cases to receive colored children who are not orphans, but maybe in such circumstances as to require the aid of charity.

Hopkins died not long after writing that letter. His board of trustees—many of them friends and family—created one of the top medical schools in the country, and a hospital whose public wards provided millions of dollars in free care to the poor, many of them black.

But the history of Hopkins Hospital certainly isn’t pristine when it comes to black patients. In 1969, a Hopkins researcher used blood samples from more than 7,000 neighborhood children—most of them from poor black families—to look for a genetic predisposition to criminal behavior. The researcher didn’t get consent. The American Civil Liberties Union filed suit claiming the study violated the boys’ civil rights and breached confidentiality of doctor-patient relationships by releasing results to state and juvenile courts. The study was halted, then resumed a few months later using consent forms.

And in the late nineties, two women sued Hopkins, claiming that its researchers had knowingly exposed their children to lead, and hadn’t promptly informed them when blood tests revealed that their children had elevated lead levels—even when one developed lead poisoning. The research was part of a study examining lead abatement methods, and all families involved were black. The researchers had treated several homes to varying degrees, then encouraged landlords to rent those homes to families with children so they could then monitor the children’s lead levels. Initially, the case was dismissed. On appeal, one judge compared the study to Southam’s HeLa injections, the Tuskegee study, and Nazi research, and the case eventually settled out of court. The Department of Health and Human Services launched an investigation and concluded that the study’s consent forms “failed to provide an adequate description” of the different levels of lead abatement in the homes.

But today when people talk about the history of Hopkins’s relationship with the black community, the story many of them hold up as the worst offense is that of Henrietta Lacks—a black woman whose body, they say, was exploited by white scientists.

Sitting in Lawrence’s living room, Sonny and Bobbette yelled back and forth for nearly an hour about Hopkins snatching black people. Eventually, Sonny leaned back in his chair and said, “John Hopkin didn’t give us no information about anything. That was the bad part. Not the sad part, but the bad part, cause I don’t know if they didn’t give us information because they was making money out of it, or if they was just wanting to keep us in the dark about it. I think they made money out of it, cause they were selling her cells all over the world and shipping them for dollars.”

“Hopkins say they gave them cells away,” Lawrence yelled, “but they made millions! It’s not fair! She’s the most important person in the world and her family living in poverty. If our mother so important to science, why can’t we get health insurance?”

Day had prostate cancer and asbestos-filled lungs. Sonny had a bad heart, and Deborah had arthritis, osteoporosis, nerve deafness, anxiety, and depression. With all that plus the whole family’s high blood pressure and diabetes, the Lackses figured they pretty much supported the pharmaceutical industry, plus several doctors. But their insurance came and went. Some were covered through Medicare, others on and off by spouses, but they all went stretches with no coverage or money for treatment.

As the Lacks men talked about Hopkins and insurance, Bobbette snorted in disgust and walked to her recliner in the living room. “My pressure’s goin up and I’m not gonna die over this, you know?” The whole thing just wasn’t worth getting riled up over, she said. But she couldn’t help herself. “Everybody knew black people were disappearing cause Hopkins was experimenting on them!” she yelled. “I believe a lot of it was true.”

“Probably so,” Sonny said. “A lot might a been myth too. You never know. But one thing we do know, them cells about my mother ain’t no myth.”

Day thumped his cane again.

“You know what is a myth?” Bobbette snapped from the recliner. “Everybody always saying Henrietta Lacks donated those cells. She didn’t donate nothing. They took them and didn’t ask.” She inhaled a deep breath to calm herself. “What really would upset Henrietta is the fact that Dr. Gey never told the family anything—we didn’t know nothing about those cells and he didn’t care. That just rubbed us the wrong way. I just kept asking everybody, ‘Why didn’t they say anything to the family?’ They knew how to contact us! If Dr. Gey wasn’t dead, I think I would have killed him myself.”

22 – “The Fame She So Richly Deserves” (1970-1973)

One afternoon in the late spring of 1970, George Gey stood in his favorite waders on the bank of the Potomac River, where he and several other Hopkins researchers had been fishing together every Wednesday for years. Suddenly Gey was so exhausted, he could hardly hold his fishing rod. His buddies dragged him up the embankment to the white Jeep he’d bought using money from a cancer research award.

Soon after that fishing trip, at the age of seventy-one, Gey learned he had the disease he’d spent his entire life trying to fight. And he had one of its most deadly forms: pancreatic cancer. If doctors didn’t operate, Gey knew he would die within months. If they did, it might buy him a little time. Or it might not.

On August 8, 1970, around 6:00 a.m., Margaret called each member of the Gey lab’s staff, including a postdoctoral student who’d just flown in on a red-eye from Europe.

“Come down to the lab as fast as you can,” she told them. “There’s going to be an emergency procedure this morning.” She didn’t tell them what that procedure would be.

Before going into the operating room, George told his surgeons that he wanted them to take samples of his tumor, just as Dr. Wharton had done with Henrietta’s tumor decades earlier. Gey gave his lab staff careful instructions for growing GeGe, a line of cancer cells taken from his pancreas. He hoped that his cells, like Henrietta’s, would become immortal.

“Work all day and night if you have to,” he told his postdocs and assistants. “Make this happen.”

Soon, with Gey anesthetized on the operating table, surgeons opened him up and found that the cancer was inoperable—growths covered his stomach, spleen, liver, and intestines. They worried that cutting into the cancer might kill him. Despite Gey’s wishes, they sewed him up without taking any samples. When he awoke from anesthesia and found out there would be no GeGe line, he was furious. If this cancer was going to kill him, he wanted it to help advance science in the process.

As soon as he’d recovered enough from his surgery to travel, Gey began contacting cancer researchers around the country, asking who was doing research on pancreatic cancer and needed a patient to experiment on. He was flooded with replies—some from scientists he didn’t know, others from friends and colleagues.

In the three months between his surgery and his death, Gey went to the Mayo Clinic in Minneapolis for a week of treatments with an experimental Japanese drug that made him violently ill. His son, George Jr., who had just finished medical school, sat with Gey through the whole thing and made sure he had a freshly pressed suit each day. After leaving the Mayo Clinic, Gey spent several days in New York City at Sloan-Kettering for another study, and he underwent chemotherapy at Hopkins using a drug not yet approved for use in humans.

Gey was six and a half feet tall and about 215 pounds when he was diagnosed, but he withered quickly. He often doubled over from abdominal pain, he vomited constantly, and the treatments soon left him confined to a wheelchair. But he continued showing up at the lab and writing letters to his colleagues. At some point not long before his death, he told his former assistant Mary Kubicek that it was fine to release Henrietta’s name if anyone asked, since it hadbeen so many years. But Mary never told a soul. George Gey died on November 8, 1970.

A few months after Gey’s death, Howard Jones and several Hopkins colleagues—including Victor McKusick, a leading geneticist—decided to write an article about the history of the HeLa cell line as a tribute to Gey’s career. Before writing the article, Jones pulled Henrietta’s medical records to remind himself of the details of her case. When he saw the photographs of her biopsy, he immediately realized her tumor had been misdiagnosed. To be sure, he dug out the original biopsy sample, which had been stored on a shelf since 1951.

In December 1971, when Jones and his colleagues published their tribute to Gey in the journal Obstetrics and Gynecology, they reported that the original pathologist had “misinterpreted” and “mislabeled” Henrietta’s cancer. Her tumor was invasive, but not an epidermoid carcinoma as originally diagnosed. Rather, the article said, it was “a very aggressive adenocarcinoma of the cervix,” meaning it originated from glandular tissue in her cervix instead of epithelial tissue.

A misdiagnosis of this type was not uncommon at the time. In 1951, the same year Jones biopsied Henrietta’s tumor, researchers from Columbia University reported that the two types of cancer were easily and often confused.

According to Howard Jones and other gynecologic oncologists I talked with, the correct diagnosis wouldn’t have changed the way Henrietta’s cancer was treated. By 1951, at least twelve studies had found that cervical adenocarcinomas and epidermoid carcinomas responded the same to radiation, which was the treatment of choice for both types.

Though it wouldn’t have changed Henrietta’s treatment, this new diagnosis could help explain why the cancer spread throughout her body so much faster than her doctors expected. Cervical adenocarcinomas are often more aggressive than epidermoid. (Her syphilis, it turns out, could have been a factor as well—syphilis can suppress the immune system and allow cancer to spread faster than normal.)

Regardless, Jones and his colleagues wrote, the new diagnosis was “but a footnote to the abiding genius of George Gey. … It has been often said that scientific discovery results when the right man is in the right place at the right time.” Gey, they said, was precisely that man. And HeLa was the result of that luck. “If allowed to grow uninhibited under optimal cultural conditions, [HeLa] would have taken over the world by this time,” they wrote. “The biopsy …has secured for the patient, Henrietta Lacks as HeLa, an immortality which has now reached 20 years. Will she live forever if nurtured by the hands of future workers? Even now Henrietta Lacks, first as Henrietta and then as HeLa, has a combined age of 51 years.”

This was the first time Henrietta’s real name appeared in print. Along with it, for the first time, ran the now ubiquitous photograph of Henrietta standing with her hands on her hips. The caption called her “Henrietta Lacks (HeLa).” With that publication, Henrietta’s doctor and his colleagues forever linked Henrietta, Lawrence, Sonny, Deborah, Zakariyya, their children, and all future generations of Lackses to the HeLa cells, and the DNA inside them. And Henrietta’s identity would soon spread from lab to lab as quickly as her cells.

Just three weeks after Henrietta’s name was first published, Richard Nixon signed the National Cancer Act into law and launched the War on Cancer, designating $1.5 billion for cancer research over the next three years. In a move many believe was intended to distract attention from the Vietnam War, Nixon announced that scientists would cure cancer within five years, just in time for the United States Bicentennial.

With this new funding came intense political pressure for scientists to meet the president’s deadline. Researchers raced to find what they believed to be the elusive cancer virus, with hopes of developing a vaccine to prevent it. And in May 1972, Nixon pledged that American and Russian scientists would work together in a biomedical exchange program to find the virus.

Though much of the War on Cancer hinged on research using cell cultures, few people knew that those cultures had been contaminated with HeLa. A Washington Post reporter had been at the conference when Gartler announced the contamination problem, but he hadn’t covered it, and most scientists were still denying that the problem existed. Some were even conducting studies aimed at disproving Gartler’s findings.

But the problem wasn’t going to go away. Near the end of 1972, when Russian scientists claimed they’d found a cancer virus in cells from Russian cancer patients, the U.S. government had samples of the cells hand-delivered to the Naval Biomedical Research Laboratory in California for testing. It turned out those cells weren’t from Russian cancer patients at all. They were from Henrietta Lacks.

The man who discovered that fact was Walter Nelson-Rees, a chromosome expert who was director of cell culture at the Naval laboratory. Nelson-Rees had been in the audience when Gartler presented his infamous research, and he was one of the few scientists who believed it. Nelson-Rees had since been hired by the National Cancer Institute to help stop the contamination problem. He would become known as a vigilante who published “HeLa Hit Lists” in Science, listing any contaminated lines he found, along with the names of researchers who’d given him the cells. He didn’t warn researchers when he found that their cells had been contaminated with HeLa; he just published their names, the equivalent of having a scarlet H pasted on your lab door.

Despite all the evidence, most researchers still refused to believe there was a problem. And the media didn’t seem to notice, until news hit that the Russian cells had been contaminated by American ones. Only then did newspapers in London, Arizona, New York, and Washington run headlines saying things like CANCER CELLS FROM LONG-DEAD WOMAN INVADE OTHER CULTURES. They reported “serious confusion,” “misguided research,” and millions of wasted dollars.

Suddenly, for the first time since the Collier’s article in the fifties, the press was very interested in the woman behind those cells. They wrote about her “unusual kind of immortality” in one article after another; they called her Helen Larsen or Helen Lane, but never Henrietta Lacks, because Jones and McKusick had published her name in a small science journal few people read.

Rumors spread about the identity of this mysterious Helen L. Some said she’d been Gey’s secretary, or maybe his mistress. Others said she was a prostitute off the streets near Hopkins or a figment of Gey’s imagination, a fictitious character he’d created to hide the true identity of the woman behind the cells.

As Helen showed up in articles again and again with different last names, a few scientists began feeling the need to set the record straight. On March 9, 1973, the journal Nature published a letter from J. Douglas, a biologist at Brunel University:

It is twenty-one years since George Gey established the famous HeLa cells in culture. It has been estimated that the weight of these cells in the world today exceeds that of the American negro from whose cervical tumour they originated. That lady has achieved true immortality, both in the test-tube and in the hearts and minds of scientists the world over, since the value of HeLa cells in research, diagnosis, etc., is inestimable. Yet we do not know her name! It has been widely stated that He and La are the first letters of her names but whereas one textbook says the names were Helen Lane another says Henrietta Lacks. My letters to the authors, inquiring the source of their information, like the letter to the hospital from which Gey’s paper emanated, remain unanswered. Does anyone know for sure? Would it be contrary to medical ethics in the HeLa cell’s coming-of-age year to authenticate the name and let He … La … enjoy the fame she so richly deserves?

Douglas was flooded with responses. There’s no record of readers addressing his question about medical ethics, but they did correct his grammar and his use of the word “negro” in place of “negress.” Many replies offered the names of women they believed were behind the HeLa cells: Helga Larsen, Heather Langtree, even the actress Hedy Lamarr. In a follow-up letter on April 20, 1973, Douglas announced that all those women should “withdraw as gracefully as they can,” because he’d received a letter from Howard W. Jones that left “no doubt that HeLa cells were named after Henrietta Lacks.”

And Jones wasn’t the only one setting the record straight about Henrietta’s name: soon Victor McKusick, one of Jones’s coauthors, would send a similar letter to a reporter from Science, correcting her misuse of the name Helen Lane. In response, the journalist wrote a short follow-up article in Science titled “HeLa (for Henrietta Lacks).” In it she explained that she’d inadvertently “repeated the lore about the origin of those cells.” Then, in one of the most widely read science journals in the world, she corrected her error: “Helen Lane, it seems, never lived. But Henrietta Lacks did, long protected by the pseudonym Helen Lane.” She also reported that Henrietta’s tumor had been incorrectly diagnosed.

“None of this alters the validity of the work done with HeLa cells,” she wrote, “but it may be worth noting—for the record.”

DMU Timestamp: February 12, 2021 19:33