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We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish, and with some measure of triumph. —ELIE WIESEL from The Nazi Doctors and the Nuremberg Code
Though radium often causes relentless nausea, vomiting, weakness, and anemia, there’s no record of Henrietta having any side effects, and no one remembers her complaining of feeling sick.
Poor Henrietta
“Hennie made life come alive—bein with her was like bein with fun,” Sadie told me, staring toward the ceiling as she talked. “Hennie just love peoples. She was a person that could really make the good things come out of you.”
“We all mixed. And one of my mother sisters converted to Puerto Rican.”
Converted, ha!
But Carrel wasn’t interested in immortality for the masses. He was a eugenicist: organ transplantation and life extension were ways to preserve what he saw as the superior white race, which he believed was being polluted by less intelligent and inferior stock, namely the poor, uneducated, and nonwhite. He dreamed of never-ending life for those he deemed worthy, and death or forced sterilization for everyone else. He’d later praise Hitler for the “energetic measures” he took in that direction.
“I’ll never forget it,” Aurelian said. “George told me he leaned over Henrietta’s bed and said, ‘Your cells will make you immortal.’ He told Henrietta her cells would help save the lives of countless people, and she smiled. She told him she was glad her pain would come to some good for someone.”
Speed made them calculate how much change she owed them—they got a free Hershey’s kiss for each correct answer.
Courtney Speed, being the whole town’s mama. 💙
“February first is Henrietta Lacks day here in Baltimore County,” she said. “This February first is going to be the big kickoff event here at the library!
What rolled in front of me on that television screen was a one-hour BBC documentary about Henrietta and the HeLa cells, called The Way of All Flesh, which I’d been trying to get a copy of for months.
I wonder if it is accessible now?!
“Now I don’t know for sure if a spirit got Henrietta or if a doctor did it,” Cootie said, “but I do know that her cancer wasn’t no regular cancer, cause regular cancer don’t keep on growing after a person die.”
“Henrietta gonna die tonight,” she told him. “She wants you to take care of them kids—I told her I’d let you know. Don’t let nuthin happen to them.” Henrietta died at 12:15 a.m. on October 4, 1951.
Though no law or code of ethics required doctors to ask permission before taking tissue from a living patient, the law made it very clear that performing an autopsy or removing tissue from the dead without permission was illegal.
“Hennie never was what you’d call a beatin-around-the-bush woman,” he said. “We shoulda knew she was tryin to tell us somethin with that storm.”
They could grow floating in a culture medium that was constantly stirred by a magnetic device, an important technique Gey developed, now called growing in suspension.
Mary had to take several trolleys to get there, but she made it. And so did the cells: When the package arrived in Minneapolis about four days later, Scherer put the cells in an incubator and they began to grow. It was the first time live cells had ever been successfully shipped in the mail.
Black scientists and technicians, many of them women, used cells from a black woman to help save the lives of millions of Americans, most of them white. And they did so on the same campus—and at the very same time—that state officials were conducting the infamous Tuskegee syphilis studies.
Slowly, a multibillion-dollar industry selling human biological materials was born.
And Henrietta’s family still hasn’t received anything..?! Shameful…
Watching HeLa cells divide on a screen, Davidson wrote, “was like a glimpse at immortality.” Because of cell culture, he said, the world was “on the threshold of a hopeful new era in which cancer, mental illness and, in fact, nearly all diseases now regarded as incurable will cease to torment man.” And much of that was thanks to cells from one woman, “an unsung heroine of medicine.”
Deborah wasn’t thinking about having babies anytime soon, but by the time she turned thirteen she was thinking about marrying that neighbor boy everyone called Cheetah, mainly because she thought Galen would have to stop touching her if she had a husband.
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.
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.
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.”
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.
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.
The Nuremburg Code/HIPPA… patients didn’t have these rights until about the 1950s?! And the doctors concerned about not telling patients are being “too sensitive “?!
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.
Go Beecher!
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.
Henrietta go to go into space?!
“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.”
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
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What?!
If our mother so important to science, why can’t we get health insurance?”
Moore appealed, and in 1988 the California Court of Appeals ruled in his favor, pointing to the Protection of Human Subjects in Medical Experimentation Act, a 1978 California statute requiring that research on humans respect the “right of individuals to determine what is done to their own bodies.”
Then, in 1985, a university press published a book by Michael Gold, a reporter from Science 85 magazine, about Walter Nelson-Rees’s campaign to stop HeLa contamination. It was called A Conspiracy of Cells: One Woman’s Immortal Legacy and the Medical Scandal It Caused.
There are more than one hundred strains of HPV in existence, thirteen of which cause cervical, anal, oral, and penile cancer—today, around 90 percent of all sexually active adults become infected with at least one strain during their lifetimes.
Rifkin and many others believed that any manipulation of DNA, even in a controlled laboratory setting, was dangerous because it might lead to genetic mutations and make it possible to engineer “designer babies.” Since there were no laws limiting genetic engineering, Rifkin regularly sued to stop it using any existing laws that might apply.
Van Valen explained this idea years later, saying, “HeLa cells are evolving separately from humans, and having a separate evolution is really what a species is all about.” Since the species name Hela was already taken by a type of crab, the researchers proposed that the new HeLa cell species should be called Helacyton gartleri, which combined HeLa with cyton, which is Greek for “cell,” and gartleri, in honor of Stanley Gartler, who’d dropped the “HeLa Bomb” twenty-five years earlier.
Only cells that had been transformed by a virus or a genetic mutation had the potential to become immortal.
“Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it. I’m a walking drugstore! I can’t say nuthin bad about science, but I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells probably helped make.”
Deborah is right…
“My mother was just getting back at scientists for keepin all them secrets from the family,” Deborah said. “You don’t mess with Henrietta—she’ll sic HeLa on your ass!”
“Those mistakes can happen when you get exposed to chemicals or radiation,” Christoph said. “But in your mother’s case, the mistake was caused by HPV, the genital warts virus. The good news for you is that children don’t inherit those kinds of changes in DNA from their parents—they just come from being exposed to the virus.”
Christoph said he thought that was wrong. Why not treat valuable cells like oil, he said. When you find oil on somebody’s property, it doesn’t automatically belong to them, but they do get a portion of the profits.
Pneumoencephalography involved drilling holes into the skulls of research subjects, draining the fluid surrounding their brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays of the brain through the skull. The side effects—crippling headaches, dizziness, seizures, vomiting—lasted until the body naturally refilled the skull with spinal fluid, which usually took two to three months.
Oh my god…
“I mean to relax,” Gary said. “Do something to relax yourself.” “I can’t help it,” Deborah said, waving him off with her hand. “I worry all the time.” “Like the Bible said,” Gary whispered, “man brought nothing into this world and he’ll carry nothing out. Sometime we care about stuff too much. We worry when there’s nothing to worry about.” In a moment of clarity, Deborah nodded, saying, “And we bring our own body down by doing it.”
“HeLa?” I asked Gary. “You’re saying HeLa is her spiritual body?” Gary smiled and nodded.
We’d just finished watching two of Deborah’s favorite movies back-to-back: Roots and the animated movie Spirit, about a wild horse who’s captured by the U.S. Army. She wanted us to watch them together so we could see the similarities between the two—Spirit fought for his freedom just as Kunta Kinte did in Roots, she said. “People was always tryin to keep them down and stop them from doing what they want just like people always doin with me and the story about my mother,” she said.
It’s illegal to sell human organs and tissues for transplants or medical treatments, but it’s perfectly legal to give them away while charging fees for collecting and processing them. Industry-specific figures don’t exist, but estimates say one human body can bring in anywhere from $10,000 to nearly $150,000. But it’s extremely rare for individual cells from one person to be worth millions like John Moore’s.
“You can’t ignore this issue of who gets the money and what the money is used for,” says Clayton. “I’m not sure what to do about it, but I’m pretty sure it’s weird to say everybody gets money except the people providing the raw material.”
And some enforce their patents aggressively: Myriad Genetics, which holds the patents on the BRCA1 and BRCA2 genes responsible for most cases of hereditary breast and ovarian cancer, charges $3,000 to test for the genes. Myriad has been accused of creating a monopoly, since no one else can offer the test, and researchers can’t develop cheaper tests or new therapies without getting permission from Myriad and paying steep licensing fees.
“It’s ironic,” she told me. “The Moore court’s concern was, if you give a person property rights in their tissues, it would slow down research because people might withhold access for money. But the Moore decision backfired—it just handed that commercial value to researchers.”
