[3 of 5] The Immortal Life of Henrietta Lacks, Chapters 16-22, by Rebecca Skloot (2010) - Sloan/2023

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.