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[4 of 5] The Immortal Life of Henrietta Lacks, Chapters 23 - 31, by Rebecca Skloot (2010) - Sloan-2023

Author: Rebecca Skloot

“Chapters 23-31.” 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.


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23 – “It’s Alive” (1973 to 1974)

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Mar 3
Nickel D Nickel D (Mar 03 2023 11:51AM) : Summary more

Bobbette finds out from one of her friends that it’s a doctor that Henriettas cells are being sourced to hospitals, studies, and doctors all over the country. Doctors also want to conduct more research on the lacks family and Deborah is worried that her or her children will have the same condition as Henrietta. She is also worried that the doctors will inject Henriettas cancer cells into their family so that they conduct more research on them unethically. Deborah decides to speak with the doctors and they give her a research book with a photo of Henrietta that none of them have ever seen before.

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On a hazy day in 1973, in a brown brick row house five doors down from her own, Bobbette Lacks sat at her friend Gardenia’s dining room table. Gardenia’s brother-in-law was in town from Washington, D.C., and they’d all just finished having lunch. As Gardenia clanked dishes in the kitchen, her brother-in-law asked Bobbette what she did for a living. When she told him she was a patient aide at Baltimore City Hospital, he said, “Really? I work at the National Cancer Institute.”

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They talked about medicine and Gardenia’s plants, which covered the windows and counters. “Those things would die in my house,” Bobbette said, and they laughed.

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“Where you from anyway?” he asked. “North Baltimore.”

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“No kidding, me too. What’s your last name?”

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“Well, it was Cooper, but my married name is Lacks.” “Your last name is Lacks?”

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“Yeah, why?”

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“It’s funny,” he said, “I’ve been working with these cells in my lab for years, and I just read this article that said they came from a woman named Henrietta Lacks. I’ve never heard that name anywhere else.”

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Bobbette laughed. “My mother-in-law’s Henrietta Lacks but I know you’re not talking about her—she’s been dead almost twenty-five years.”

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“Henrietta Lacks is your mother-in-law?” he asked, suddenly excited. “Did she die of cervical cancer?”

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Bobbette stopped smiling and snapped, “How’d you know that?”

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“Those cells in my lab have to be hers,” he said. “They’re from a black woman named Henrietta Lacks who died of cervical cancer at Hopkins in the fifties.”

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“What?!” Bobbette yelled, jumping up from her chair. “What you mean you got her cells in your lab?”

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He held his hands up, like Whoa, wait a minute. “I ordered them from a supplier just like everybody else.”

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“What do you mean, ‘everybody else’?!” Bobbette snapped. “ What supplier? Who’s got cells from my mother-in-law?”

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It was like a nightmare. She’d read in the paper about the syphilis study at Tuskegee, which had just been stopped by the government after forty years, and now here was Gardenia’s brother-in-law, saying Hopkins had part of Henrietta alive and scientists everywhere were doing research on her and the family had no idea. It was like all those terrifying stories she’d heard about Hopkins her whole life were suddenly true, and happening to her. If they’re doing research on Henrietta, she thought, it’s only a matter of time before they come for Henrietta’s children, and maybe her grandchildren.Gardenia’s brother-in-law told Bobbette that Henrietta’s cells had been all over the news lately because they’d been causing problems by contaminating other cultures. But Bobbette just kept shaking her head and saying, “How come nobody told her family part of her was still alive?”

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“I wish I knew,” he said. Like most researchers, he’d never thought about whether the woman behind HeLa cells had given them voluntarily.

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Bobbette excused herself and ran home, bursting through the screen door into the kitchen, yelling for Lawrence, “Part of your mother, it’s alive!”

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Mar 3
Nickel D Nickel D (Mar 03 2023 11:52AM) : Personification/hypwebole [Edited] more

Henrietta is not actually alive.

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Lawrence called his father to tell him what Bobbette had heard, and Day didn’t know what to think. Henrietta’s alive? he thought. It didn’t make any sense. He’d seen her body at the funeral in Clover himself. Did they go dig it up? Or maybe they did something to her during that autopsy?

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Lawrence called the main switchboard at Hopkins, saying, “I’m calling about my mother, Henrietta Lacks—you got some of her alive in there.” When the operator couldn’t find a record of a patient named Henrietta Lacks in the hospital, Lawrence hung up and didn’t know who else to call.

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Soon after Lawrence called Hopkins, in June 1973, a group of researchers gathered around a table at Yale University at the First International Workshop on Human Gene Mapping, a first step toward the Human Genome Project. They were talking about how to stop the HeLa contamination problem, when someone pointed out that the whole mess could be sorted out if they found genetic markers specific to Henrietta and used them to identify which cells were hers and which weren’t. But doing that would require DNA samples from her immediate family—preferably her husband as well as her children—to compare their DNA to HeLa’s and create a map of Henrietta’s genes.

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Victor McKusick, one of the scientists who’d first published Henrietta’s name, happened to be at that table. He told them he could help. Henrietta’s husband and children were still pa-tients at Hopkins, he said, so finding them wouldn’t be difficult. As a physician on staff, McK-usick had access to their medical records and contact information.

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The geneticists at the conference were thrilled. If they had access to DNA from Henrietta’s children, they could not only solve the contamination problem but also study Henrietta’s cells in entirely new ways. McKusick agreed, so he turned to one of his postdoctoral fellows, Susan Hsu, and said, “As soon as you get back to Baltimore, get this done.”

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McKusick didn’t give Hsu instructions for explaining the research to the Lackses. All she knew was that Victor McKusick had told her to call the family.

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“He was like a god,” Hsu told me years later. “He was a famous, famous man, he trained most of the other famous medical geneticists in the world. When Dr. McKusick said, ‘You go back to Baltimore, get this blood drawn,’ I did it.”

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When Hsu got home from the conference, she called Day to ask if she could draw blood from his family. “They said they got my wife and she part alive,” he told me years later. “They said they been doin experiments on her and they wanted to come test my children see if they got that cancer killed their mother.”

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But Hsu hadn’t said anything about testing the children for cancer. There was no such thing as a “cancer test,” and even if there had been, McKusick’s lab wouldn’t have been doing one, because he wasn’t a cancer researcher. McKusick was a renowned geneticist who’d founded the world’s first human genetics department at Hopkins, where he maintained a catalog of hundreds of genes, including several he’d discovered himself in Amish populations. He compiled information about known genes and the research done on them into a database called Mendelian Inheritance in Man, the bible of the field, which now has nearly twenty thousand entries and is still growing.

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Nickel D Nickel D (Mar 03 2023 11:54AM) : quotations
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McKusick and Hsu were hoping to use somatic-cell hybridization to test the Lacks family for several different genetic markers, including specific proteins called HLA markers. By testing Henrietta’s children, they hoped to find out what Henrietta’s HLA markers might have been, so they could use those to identify her cells.

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Hsu had only recently come to America from China, and English wasn’t her native language. According to Hsu, when she called Day in 1973, she told him this: “We come to draw blood to get HLA androgen, we do genetic marker profile because we can deduce a lot of Henrietta Lacks genotype from the children and the husband.”

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When I asked her if Day seemed to understand, Hsu said, “They are very receptible to us when I made phone call. They are pretty intelligent. I think Mr. Lacks pretty much already knew that his wife made a contribution and are very aware of the value of HeLa cells. They probably heard people talking that the cell line is such important thing. Everybody talking about HeLa back then. They are a very nice family, so they very nicely let us draw blood.” Hsu’s accent was strong, and so was Day’s—he spoke with a Southern country drawl so thick his own children often had a hard time understanding him. But language wasn’t their only barrier. Day wouldn’t have understood the concept of immortal cells or HLA markers coming from anyone, accent or not—he’d only gone to school for four years of his life, and he’d never studied science. The only kind of cell he’d heard of was the kind Zakariyya was living in out at Hagerstown. So he did what he’d always done when he didn’t understand something a doctor said: he nodded and said yes.

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Years later, when I asked McKusick if anyone had tried to get informed consent from the Lacks family, he said, “I suspect there was no effort to explain anything in great detail. But I don’t believe anyone would have told them we were testing for cancer because that wasn’t the case. They would have just said, ‘Your mother had cancer, the cells from that cancer have been growing all over the place and studied in great detail, in order to understand that better, we would like to have that blood from you people.’

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When I asked Susan Hsu the same question she said, “No. We never gave consent form because you just go to draw blood. We are not doing some kind of medical research, you know, not long term. All we wanted is a few tubes of blood and to do genetic marker test. It’s not involved in a human research committee or things like that.”

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Although this attitude wasn’t uncommon at the time, NIH guidelines stipulated that all human subject research funded by NIH—as McKusick’s was—required both informed consent and approval from a Hopkins review board. Those guidelines had been implemented in 1966, in the aftermath of the Southam trial, and then expanded to include a detailed definition of informed consent in 1971. They were in the process of being codified into law when Hsu called Day.

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McKusick began his research on the Lacks family at a time of great flux in research oversight. Just one year earlier, in response to Tuskegee and several other unethical studies, the Department of Health, Education, and Welfare (HEW) had launched an investigation into federal oversight of human-subject research and found it to be inadequate. As one government report said, it was a time filled with “widespread confusion about how to assess risk,” as well as “refusal by some researchers to cooperate” with oversight, and “indifference by those charged with administering research and its rules at local institutions.” After halting the Tuskegee study, HEW proposed new Protection of Human Subjects regulations that would require, among other things, informed consent. A notice inviting public comment on that proposed new law would be published in the Federal Register in October 1973, just a few months after Hsu called Day.

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After Day got off the phone with Hsu, he called Lawrence, Sonny, and Deborah, saying, “You got to come over to the house tomorrow, doctors from Hopkins coming to test everybody’s blood to see if you all got that cancer your mother had.”

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When Henrietta died, Day had agreed to let her doctors do an autopsy because they’d told him it might help his children someday. They must have been telling the truth, Day thought. Zakariyya was in Henrietta’s womb when she first got the cancer, and he’d had all those anger problems ever since. Now Deborah was almost twenty-four, not much younger than Henrietta had been when she died. It made sense they were calling saying it was time for her to get tested.

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Deborah panicked. She knew her mother had gotten sick at thirty, so she’d long feared her own thirtieth birthday, figuring that whatever happened to her mother at that age would happen to her too. And Deborah couldn’t stand the idea of her own children growing up motherless like she had. At that point, LaTonya was two, Alfred was six, and Cheetah had never paid child support. Deborah had tried welfare for three months but hated it, so now she was working days at a suburban Toys “R” Us that took more than an hour and three buses to get to, then nights at a hamburger place called Gino’s behind her apartment.

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Mar 3
Nickel D Nickel D (Mar 03 2023 11:55AM) : Speculation
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Since Deborah couldn’t afford a babysitter, her boss at Gino’s let Tonya and Alfred sit in the corner of the restaurant at night while Deborah worked. On her eight-thirty dinner break, Deborah would run behind the building to her apartment and put the children to bed. They knew not to open the door unless they heard her secret knock, and they never put the kerosene lamps near a curtain or blanket. Deborah practiced fire drills with them in case something went wrong while she was at work, teaching them to crawl to the window, throw out a sheetrope she kept tied to the bed leg, and climb to safety.

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Those children were all Deborah had, and she wasn’t going to let anything happen to them. So when her father called saying Hopkins wanted to test to see if she had her mother’s cancer, Deborah sobbed, saying, “Lord don’t take me away from my babies, not now, not after everything we been through.”

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A few days after Susan Hsu’s phone call, Day, Sonny, Lawrence, and Deborah all sat around Lawrence’s dining room table as Hsu and a doctor from McKusick’s lab collected tubes of blood from each of them.

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For the next several days, Deborah called Hopkins again and again, telling the switchboard operators, “I’m calling for my cancer results.” But none of the operators knew what tests she was talking about, or where to send her for help.

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Soon, Hsu wrote a letter to Lawrence asking if she could send a nurse out to Hagerstown to collect samples from Zakariyya in prison. She included a copy of the George Gey tribute written by McKusick and Jones, saying she thought Lawrence would like to see an article about his mother’s cells. No one in the family remembers reading that article—they figure Lawrence just put it in a drawer and forgot about it.

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The Lacks men didn’t think much about their mother’s cells or the cancer tests. Lawrence was working full-time on the railroad and living in a house filled with children, Zakariyya was still in jail, and times had gotten tough for Sonny, who was now busy selling drugs.

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But Deborah couldn’t stop worrying. She was terrified that she might have cancer, and consumed with the idea that researchers had done—and were perhaps still doing—horrible things to her mother. She’d heard the stories about Hopkins snatching black people for research, and she’d read an article in Jet about the Tuskegee study that suggested doctors might have actually injected those men with syphilis in order to study them. “The injection of disease-causing organisms into unaware human subjects has occurred before in American medical science,” the article explained. “It was done eight years ago in New York City by Dr. Chester Southam, a cancer specialist who injected live cancer cells into chronically ill elderly patients.”

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Deborah started wondering if instead of testing the Lacks children for cancer, McKusick and Hsu were actually injecting them with the same bad blood that had killed their mother. She started asking Day a lot of questions about Henrietta: How’d she get sick? What happened when she died? What did those doctors do to her? The answers seemed to confirm her fears: Day told her that Henrietta hadn’t seemed sick at all. He said he took her into Hopkins, they started doing treatments, then her stomach turned black as coal and she died. Sadie said the same thing, and so did all the other cousins. But when she asked what kind of cancer her mother had, what treatments the doctors gave her, and what part of her was still alive, the family had no answers.

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So when one of McKusick’s assistants called Deborah and asked her to come into Hopkins to give more blood, she went, thinking that if her family couldn’t answer questions about her mother, maybe the scientists could. She didn’t know the blood was for a researcher in California who wanted some samples for his own HeLa research, and she didn’t know why McKusick’s assistant was calling her and not her brothers—she figured it was because the problem her mother had didn’t affect boys. She still thought she was being tested for cancer.

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Deborah went into McKusick’s office to give more blood on June 26, 1974, four days before the new federal law went into effect requiring IRB approval and informed consent for all federally funded research. The new law—published in the Federal Register one month earlier—applied to all “subjects at risk,” meaning “any individual who may be exposed to the possibility of injury, including physical, psychological, or social injury, as a consequence of participation as a subject.” But what constituted “injury” and “risk” was heavily debated. Numerous researchers had appealed to HEW, asking that collection of blood and tissues be exempt from the new law. After all, doctors had been drawing blood for centuries for diagnostic testing, and aside from the pain of a needle stick, there seemed to be no risk. But HEW did not exempt those procedures; in fact, it later clarified the law to specifically include them.

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McKusick’s research on the Lacks family coincided with the beginning of a new era of genetic research, in which the concept of risk to patients would change completely. With the ability to identify genes from a blood sample or even a single cell, the risk of a blood draw was no longer just a minor infection or the pain of a needle stick—it was that someone could uncover your genetic information. It was about violation of privacy.

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Deborah met McKusick only once, when she went into Hopkins to give blood. He shook her hand and said that Henrietta had made an important contribution to science. Then Deborah bombarded him with questions: What made her mother sick? How was part of her still living? What did that mean? What did Henrietta do for science? And did all those blood tests he was doing mean Deborah was going to die young like her mother?

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McKusick did not explain why he was having someone draw blood from Deborah. Instead he told her about Henrietta’s cells being used for the polio vaccine and genetic research; he said they’d gone up in early space missions and been used in atomic bomb testing. Deborah heard those things and imagined her mother on the moon and being blown up by bombs. She was terrified and couldn’t stop wondering if the parts of her mother they were using in research could actually feel the things scientists were doing to them.

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When she asked McKusick to explain more about the cells, he gave her a book he’d edited called Medical Genetics, which would become one of the most important textbooks in the field. He said it would tell her everything she needed to know, then autographed the inside front cover. Beneath his signature he wrote a phone number and told her to use it for making appointments to give more blood.

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McKusick flipped to the second page of the introduction. There, between graphs of “Disease Specific Infant Mortality” and a description of “the homozygous state of Garrodian inborn errors,” was the photograph of Henrietta with her hands on her hips. He pointed to the paragraph that mentioned her: Parenthetically, medical geneticists making use of the study of cells in place of the whole patient have “cashed in” on a reservoir of morphologic, biochemical, and other information in cell biology derived in no small part from study of the famous cell line cultured from the patient pictured on this page, Henrietta Lacks.

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The book was filled with complicated sentences explaining Henrietta’s cells by saying, “its atypical histology may correlate with the unusually malignant behavior of the carcinoma,” and something about the “correlate of the tumor’s singularity.”

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Reading magazines took Deborah a long time because she had to stop often to look words up in her dictionary. Now she sat in the clinic gripping McKusick’s book, not even trying to read the words. All she could think was that she’d never seen that photograph of her mother before. What happened to her to make her end up in there? she wondered. And how did he get that picture? Day swore he’d never given it to McKusick or any of Henrietta’s doctors; Deborah’s brothers swore they hadn’t either. The only thing Day could figure was that maybe Howard Jones had asked Henrietta for a picture, then stuck it in her medical record. But as far as Day knew, no one had ever asked permission to publish it.

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When I talked to McKusick several years before his death in 2008, he was seventy-nine and still conducting research and training young scientists. He didn’t recall where he’d gotten the photo, but he imagined Henrietta’s family must have given it to Howard Jones or another doctor at Hopkins. Though McKusick remembered the research he conducted on the Lacks family, he didn’t remember meeting Deborah or giving her his book, and said he’d never had firsthand contact with the family. He’d left that up to Hsu.

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When I talked to Susan Hsu, now a director of medical genetics at the American Red Cross, she told me that working with McKusick on HeLa cells was a highlight of her career. “I’m very proud,” she told me. “I probably will Xerox these paper and tell my kids this is important.” But when I explained to her that the Lackses thought she was testing them for cancer, and that they were upset about scientists using the cells without their knowledge, she was shocked.

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“I feel very bad,” she said. “People should have told them. You know, we never thought at that time they did not understand.”

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She also told me she had a message she hoped I’d give to the Lacks family when I talked with them next: “Just tell them I’m really grateful,” she said. “They should be very proud of the mother or the wife—I think that if they are angry probably they didn’t realize how famous the cells are now in the world. It’s unfortunate thing what happened, they still should be very proud, their mother will never die as long as the medical science is around, she will always be such a famous thing.”

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Toward the end of our conversation, Hsu mentioned that she could learn much more from testing the family’s blood today, since DNA technology had advanced so much since the seventies. Then she asked if I’d tell the Lacks family one more thing for her: “If they are willing,” she said, “I wouldn’t mind to go back and get some more blood.”

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24 – “Least They Can Do” (1975)

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The Lackses didn’t know anything about the HeLa contamination problem that led McKusick and Hsu to them until Michael Rogers, a young reporter for Rolling Stone, showed up at their house with long hair and rock-and-roll clothes.

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Rogers was something of a journalism prodigy. By his nineteenth birthday he’d gotten a degree in creative writing and physics and published his first story in Esquire; by his early twenties, when he started looking into the HeLa story, he’d already published two books and joined the staff of Rolling Stone. In coming years he’d go on to be an editor at Newsweek, and later the Washington Post.

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Rogers first learned about HeLa cells after seeing “Helen Lane Lives!” written over a urinal in a medical school bathroom. He started reading news reports about HeLa cells and the contamination problem and realized it would make a great story for Rolling Stone—the perfect mix of science and human interest. So Rogers set out to find this mysterious Helen Lane.

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He called Margaret Gey, who was friendly and talkative until Rogers asked about Helen Lane. Then she told him it wouldn’t be a good idea for them to meet and hung up. Eventually Rogers found his way to Walter Nelson-Rees, who mentioned as an aside that Henrietta Lacks was the real name of the woman behind the cells. Soon, while sitting on his Baltimore hotel bed with the view of the B-R-O-M-O-S-E-L-T-Z-E-R clock, Rogers found Lawrence Lacks in the phone book.

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It was the winter of 1975, the streets were icy, and on his way to Lawrence’s house, Rogers’s taxi was hit by another car in the middle of an intersection. The cab spun in the road, doing five, then six full circles, as if some giant hand had reached down and spun it like a bottle. Rogers had done risky reporting all over the world; now he was sitting in the back of a cab, gripping the door handle, thinking, Damn it! It would be really stupid if I got killed in Baltimore working on this of all assignments. It’s not even a dangerous story!

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Decades later, as I talked with Rogers in his Brooklyn apartment, we agreed, only half joking, that the spinning cab was probably no accident. Deborah would later say that it was Henrietta warning him to leave her family alone, because he was about to tell them something upsetting. She’d also say that Henrietta started the famous Oakland, California, fire that later burned Rogers’s house, destroying all the notes and documents he’d collected about HeLa and Henrietta’s family.

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When Rogers made it to Lawrence’s house, he expected to interview the Lackses about Henrietta, but found himself bombarded with questions instead.

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“It was so clear they hadn’t been treated well,” Rogers told me. “They truly had no idea what was going on, and they really wanted to understand. But doctors just took blood samples without explaining anything and left the family worrying.”

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Lawrence asked, “What I was wondering was, about these cells … They say they’re stronger, they’re taking over—is that bad or good? Does that mean if we get sick, we’ll live longer?”

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Rogers told the Lackses that no, the cells being immortal didn’t mean they’d become immortal too, or that they’d die of cancer. But he wasn’t sure they believed him. He explained the concept of cells as best he could, told them about the media reports that had already appeared about HeLa, and promised he’d send them copies to read.

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At that point no one in Henrietta’s immediate family except Debo rah seemed particularly upset about Henrietta’s story or the existence of those cells.

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“I didn’t feel too much about the cells when I first found they was livin,” Sonny told me years later. “Long as it’s helpin somebody. That’s what I thought.”

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But that changed when he and his brothers read Rogers’s article and learned this:

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Cell lines are swapped, traded, forwarded, begged and borrowed among research institutions around the world. … The institutional sources of cells now range from [government]-supported facilities like Nelson-Rees’s to commercial outfits with toll-free 800 numbers, from whom one can order, for about $25, a tiny glass vial of HeLa cells.

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With that paragraph, suddenly the Lacks brothers became very interested in the story of HeLa. They also became convinced that George Gey and Johns Hopkins had stolen their mother’s cells and made millions selling them.

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But in fact, Gey’s history indicates that he wasn’t particularly interested in science for profit: in the early 1940s he’d turned down a request to create and run the first commercial cellculture lab. Patenting cell lines is standard today, but it was unheard of in the fifties; regardless, it seems unlikely that Gey would have patented HeLa. He didn’t even patent the roller drum, which is still used today and could have made him a fortune.

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In the end, Gey made a comfortable salary from Hopkins, but he wasn’t wealthy. He and Margaret lived in a modest home that he bought from a friend for a one-dollar down payment, then spent years fixing up and paying off. Margaret ran the Gey lab for more than a decade without pay. Sometimes she couldn’t make their house payments or buy groceries because George had drained their account yet again buying lab equipment they couldn’t afford. Eventually she made him open a separate checking account for the lab, and kept him away from their personal money as much as she could. On their thirtieth wedding anniversary, George gave Margaret a check for one hundred dollars, along with a note scribbled on the back of an aluminum oxide wrapper: “Next 30 years not as rough. Love, George.” Margaret never cashed the check, and things never got much better.

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Various spokespeople for Johns Hopkins, including at least one past university president, have issued statements to me and other journalists over the years saying that Hopkins never made a cent off HeLa cells, that George Gey gave them all away for free.

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There’s no record of Hopkins and Gey accepting money for HeLa cells, but many for-profit cell banks and biotech companies have. Micro biological Associates—which later became part of Invitrogen and BioWhittaker, two of the largest biotech companies in the world—got its start selling HeLa. Since Microbiological Associates was privately owned and sold many other biological products, there’s no way to know how much of its revenue came specifically from HeLa. The same is true for many other companies. What we do know is that today, Invitrogen sells HeLa products that cost anywhere from $100 to nearly $10,000 per vial. A search of the U.S. Patent and Trademark Office database turns up more than seventeen thousand patents involving HeLa cells. And there’s no way to quantify the professional gain many scientists have achieved with the help of HeLa.

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The American Type Culture Collection—a nonprofit whose funds go mainly toward maintaining and providing pure cultures for science—has been selling HeLa since the sixties. When this book went to press, their price per vial was $256. The ATCC won’t reveal how much money it brings in from HeLa sales each year, but since HeLa is one of the most popular cell lines in the world, that number is surely significant.

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Lawrence and Sonny knew none of this. All they knew was that Gey had grown their mother’s cells at Hopkins, someone somewhere was making money off of them, and that someone wasn’t related to Henrietta Lacks. So, in an attempt to get Hopkins to give them what they saw as their cut of the HeLa profits, they made handouts about Henrietta Lacks’s family being owed their due, and gave them to customers at Lawrence’s store. Deborah wanted nothing to do with fighting Hopkins—she was too busy raising her children and trying to teach herself about her mother’s cells. She got herself some basic science textbooks, a good dictionary, and a journal she’d use to copy passage after passage from biology textbooks: “Cell is a minute portion of living substance,” she wrote. “They create and renew all parts of the body.” But mostly she wrote diary entries about what was happening: going on with pain… we should know what’s going on with her cells from all of them that have her cells. You might want to ask why so long with this news, well its been out for years in and out of video’s papers, books, magazines, radio, tv, all over the world. … I was in shock. Ask, and no one answers me. I was brought up to be quiet, no talking, just listen. … I have something to talk about now, Henrietta Lacks what went out of control, how my mother went through all that pain all by her self with those cold hearted doctor. Oh, how my father, said how they cooked her alive with radiation treatments. What went on in her mind in those short months. Not getting better and slipping away from her family. You see I am trying to relive that day in my mind. Youngest baby in the hospital with TB oldest daughter in another hospital, and three others at home, and husband got to, you hear me, got to work through it all to make sure he can feed his babies. And wife dying … Her in that cold looking ward at John Hopkin Hospital, the side for Black’s only, oh yes, I know. When that day came, and my mother died, she was Robbed of her cells and John Hopkins Hospital learned of those cells and kept it to themselfs, and gave them to who they wanted and even changed the name to HeLa cell and kept it from us for 20+ years. They say Donated. No No No Robbed Self.

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My father have not signed any paper. … I want them to show me proof. Where are they. The more Deborah struggled to understand her mother’s cells, the more HeLa research

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terrified her. When she saw a Newsweek article called PEOPLE-PLANTS that said scientists had crossed Henrietta Lacks’s cells with tobacco cells, Deborah thought they’d created a human-plant monster that was half her mother, half tobacco. When she found out scientists had been using HeLa cells to study viruses like AIDS and Ebola, Deborah imagined her mother eternally suffering the symptoms of each disease: bone-crushing pain, bleeding eyes, suffocation. And she was horrified by reports of a “psychic healer” who, while conducting research into whether spiritual healing could cure cancer, attempted to kill HeLa cells by a laying on of hands. He wrote:As I held the flask, I concentrated on the picture I’d formed in my mind of the cells, visualizing a disturbance in the cell fields and the cells blowing up. … While I worked, I could feel a virtual tug-of-war going on between my hands and the cells’ powerful adhesive ability. … Then I felt the field give way, as I had broken through … the cells looked as though someone had put a tiny hand grenade into each one—the whole culture had just blown apart! The number of dead floating cells had increased twenty times!

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To Deborah, this sounded like a violent assault on her mother. But what bothered her most was the fact that so many scientists and journalists around the world continued to call her mother Helen Lane. Since they gone ahead and taken her cells and they been so important for science, Deborah thought, least they can do is give her credit for it.

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On March 25, 1976, when Mike Rogers’s Rolling Stone article hit newsstands, it was the first time anyone had told the true story of Henrietta Lacks and her family, the first time the mainstream media had reported that the woman behind HeLa was black. The timing was explosive. News of the Tuskegee study was still fresh; the Black Panthers had been setting up free clinics for black people in local parks and protesting what they saw as a racist healthcare system; and the racial story behind HeLa was impossible to ignore. Henrietta was a black woman born of slavery and sharecropping who fled north for prosperity, only to have her cells used as tools by white scientists without her consent. It was a story of white selling black, of black cultures “contaminating” white ones with a single cell in an era when a person with “one drop” of black blood had only recently gained the legal right to marry a white person. It was also the story of cells from an uncredited black woman becoming one of the most important tools in medicine. This was big news.

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Rogers’s article caught the attention of several other journalists, who contacted the Lackses. In the three months following Rogers’s story, Jet, Ebony, Smithsonian, and various newspapers published articles about Henrietta, “one of the pivotal figures in the crusade against cancer.”

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Meanwhile, Victor McKusick and Susan Hsu had just published the results of their research in Science: in a table that took up about half of a page, under the headings “Husband,” “Child 1,” “Child 2,” “H. Lacks,” and “HeLa,” McKusick, Hsu, and several coauthors mapped forty-three different genetic markers present in DNA from Day and two of the Lacks children, and used those to create a map of Henrietta’s DNA that scientists could use to help identify HeLa cells in culture.

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Today, no scientist would dream of publishing a person’s name with any of their genetic information, because we know how much can be deduced from DNA, including the risks of developing certain diseases. Publishing personal medical information like this could violate the 2006 Health Insurance Portability and Accountability Act (HIPAA) and result in fines up to $250,000 and up to ten years in jail. It could also violate the 2008 Genetic Information Nondiscrimination Act, created to protect people from losing their health insurance or employment due to genetic discrimination. But there was no such federal oversight at the time.

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A lawyer might have told the Lackses they could sue on the grounds of privacy violation or lack of informed consent. But the Lackses didn’t talk to a lawyer—they didn’t even know anyone had done research on their DNA, let alone published it. Deborah was still waiting to hear the results of what she thought was her cancer test, and Sonny and Lawrence were still busy trying to figure out how to get money from Hopkins. They didn’t know that on the other side of the country, a white man named John Moore was about to begin fighting the same battle. Unlike the Lacks family, he knew who’d done what with his cells, and how much money they’d made. He also had the means to hire a lawyer.

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25 – “Who Told You You Could Sell My Spleen?” (1976 – 1988)

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In 1976—the same year Mike Rogers published his article in Rolling Stone and the Lacks family found out people were buying and selling Henrietta’s cells—John Moore was working twelve-hour days, seven days a week, as a surveyor on the Alaska Pipeline. He thought the job was killing him. His gums bled, his belly swelled, bruises covered his body. It turned out that at the age of thirty-one, Moore had hairy-cell leukemia, a rare and deadly cancer that filled his spleen with malignant blood cells until it bulged like an overfilled inner tube.

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Moore’s local doctor referred him to David Golde, a prominent cancer researcher at UCLA, who said that removing his spleen was the only way to go. Moore signed a consent form saying the hospital could “dispose of any severed tissue or member by cremation,” and Golde removed his spleen. A normal spleen weighs less than a pound; Moore’s weighed twenty-two.

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After the surgery, Moore moved to Seattle, became an oyster salesman, and went on with his life. But every few months between 1976 and 1983, he flew to Los Angeles for follow-up exams with Golde. At first Moore didn’t think much of the trips, but after years of flying from Seattle to L.A. so Golde could take bone marrow, blood, and semen, he started thinking, Can’t a doctor in Seattle do this? When Moore told Golde he wanted to start doing his follow-ups closer to home, Golde offered to pay for the plane tickets and put him up in style at the Beverly Wilshire. Moore thought that was odd, but he didn’t get suspicious until one day in 1983—seven years after his surgery—when a nurse handed him a new consent form that said:

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I (do, do not) voluntarily grant to the University of California all rights I, or my heirs, may have in any cell line or any other potential product which might be developed from the blood and/or bone marrow obtained from me.

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At first, Moore circled “do.” Years later, he told Discover magazine, “You don’t want to rock the boat. You think maybe this guy will cut you off, and you’re going to die or something.”

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But Moore suspected Golde wasn’t being straight with him, so when the nurse gave him an identical form during his next visit, Moore asked Golde whether any of the follow-up work he was doing had commercial value. According to Moore, Golde said no, but Moore circled “do not,” just in case.

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After his appointment, Moore went to his parents’ house nearby. When he got there, the phone was ringing. It was Golde, who’d already called twice since Moore left the hospital. He said Moore must have accidentally circled the wrong option on the consent form, and asked him to come back and fix it.

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“I didn’t feel comfortable confronting him,” Moore told a journalist years later, “so I said, ‘Gee, Doctor, I don’t know how I could have made that mistake.’ But I said I couldn’t come back, I had to fly to Seattle.”

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Soon the same form appeared in Moore’s mailbox at home with a sticker that said “Circle I do.” He didn’t. A few weeks later he got a letter from Golde telling him to stop being a pain and sign the form. That’s when Moore sent the form to a lawyer, who found that Golde had devoted much of the seven years since Moore’s surgery to developing and marketing a cell line called Mo.

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Moore told another reporter, “It was very dehumanizing to be thought of as Mo, to be referred to as Mo in the medical records: ‘Saw Mo today’ All of a sudden I was not the person Golde was putting his arm around, I was Mo, I was the cell line, like a piece of meat.”

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Weeks before giving Moore the new consent form—after years of “followup” appointments—Golde had filed for a patent on Moore’s cells, and several extremely valuable proteins those cells produced. Golde hadn’t yet sold the rights to the patent, but according to the lawsuit Moore eventually filed, Golde had entered into agreements with a biotech company that gave him stocks and financing worth more than $3.5 million to “commercially develop” and “scientifically investigate” the Mo cell line. At that point its market value was estimated to be $3 billion.

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Nothing biological was considered patentable until a few years before Moore’s lawsuit, in 1980, when the Supreme Court ruled on the case of Ananda Mohan Chakrabarty, a scientist working at General Electric who’d created a bacterium genetically engineered to consume oil and help clean up oil spills. He filed for a patent, which was denied on the grounds that no living organism could be considered an invention. Chakrabarty’s lawyers argued that since normal bacteria don’t consume oil, Chakrabarty’s bacteria weren’t naturally occurring—they only existed because he’d altered them using “human ingenuity.”

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Chakrabarty’s victory opened up the possibility of patenting other living things, including genetically modified animals and cell lines, which didn’t occur naturally outside the body. And patenting cell lines didn’t require informing or getting permission from the “cell donors.”

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Scientists are quick to point out that John Moore’s cells were exceptional, and few cell lines are actually worth patenting. Moore’s cells produced rare proteins that pharmaceutical companies could use to treat infections and cancer. They also carried a rare virus called HTLV, a distant cousin of the HIV virus, which researchers hoped to use to create a vaccine that could stop the AIDS epidemic. Because of this, drug companies were willing to pay enormous sums to work with his cells. Had Moore known this before Golde patented them, he could have approached the companies directly and worked out a deal to sell the cells himself. In the early 1970s a man named Ted Slavin had done precisely that with antibodies from his blood. Slavin was born a hemophiliac in the 1950s, when the only available treatment involved infusions of clotting factors from donor blood, which wasn’t screened for diseases. Because of that, he’d been exposed to the hepatitis B virus again and again, though he didn’t find out until decades later, when a blood test showed extremely high concentrations of hepatitis B antibodies in his blood. When the results of that blood test came back, Slavin’s doctor—unlike Moore’s—told him his body was producing something extremely valuable. Researchers around the world were working to develop a vaccine for hepatitis B, and doing so required a steady supply of antibodies like Slavin’s, which pharmaceutical companies were willing to pay large sums for. This was convenient, because Slavin needed money. He worked odd jobs waiting tables and doing construction, but he’d eventually have another hemophilia attack and end up unemployed again. So Slavin contacted laboratories and pharmaceutical companies to ask if they wanted to buy his antibodies. They said yes in droves.

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Slavin started selling his serum for as much as ten dollars a milliliter—at up to 500 milliliters per order—to anyone who wanted it. But he wasn’t just after money. He wanted someone to cure hepatitis B. So he wrote a letter to Nobel Prize-winning virologist Baruch Blumberg, who’d discovered the hepatitis B antigen and created the blood test that found Slavin’s antibodies in the first place. Slavin offered Blumberg unlimited free use of his blood and tissues for his research, which began a years-long partnership. With the help of Slavin’s serum, Blumberg eventually uncovered the link between hepatitis B and liver cancer, and created the first hepatitis B vaccine, saving millions of lives.

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Slavin realized he probably wasn’t the only patient with valuable blood, so he recruited other similarly endowed people and started a company, Essential Biologicals, which eventually merged with another, larger biological-product corporation. Slavin was only the first of many who have since turned their bodies into businesses, including nearly two million Americans who currently sell their blood plasma, many of them on a regular basis.

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Moore, however, couldn’t sell the Mo cells because that would have violated Golde’s patent. So in 1984, Moore sued Golde and UCLA for deceiving him and using his body in research without consent; he also claimed property rights over his tissues and sued Golde for stealing them. With that, he became the first person to legally stake a claim to his own tissue and sue for profits and damages.

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When Judge Joseph Wapner, most famous for being the judge on The People’s Court television show, ended up refereeing the depositions, Moore figured no one would take the case seriously. But scientists worldwide panicked. If tissue samples—including blood cells—became patients’ property, researchers taking them without getting consent and property rights up front would risk being charged with theft. The press ran story after story quoting lawyers and scientists saying that a victory for Moore would “create chaos for researchers” and “[sound] the death knell to the university physician-scientist.” They called it “a threat to the sharing of tissue for research purposes,” and worried that patients would block the progress of science by holding out for excessive profits, even with cells that weren’t worth millions like Moore’s.

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But plenty of science was already on hold while researchers, universities, and biotech companies sued one another over ownership of various cell lines. Only two of those cases mentioned the people those cells came from: the first, in 1976, involved ownership of an important human-fetal-cell line. Leonard Hayflick, the researcher who’d originally grown the cells, argued that there were numerous parties with legitimate property interests in any cultured cells, including the scientist who grew them, the financers of any related work, and the “donors” of the original samples. Without any one of those contributions, he said, the cultured cells wouldn’t exist, and neither would any money resulting from their sale. That case set no precedent because it settled out of court, with rights to the cells being divided between the parties involved in the lawsuit, which didn’t include the cell “donor.” The same was true of another case soon after, in which a young scientist took a cell line he’d helped develop in the United States and fled with it to his native Japan, claiming ownership because the original cells had come from his mother.

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The public didn’t realize there was big money in cell lines until news of the Moore case hit, and headlines nationwide said things like:

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OWNERSHIP OF CELLS RAISES STICKY ISSUES … WHO SHOULD HAVE RIGHTS TO A PATIENT’S CELLS? … WHO TOLD YOU YOU COULD SELL MY SPLEEN?

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Scientists, lawyers, ethicists, and policymakers debated the issues: some called for legislation that would make it illegal for doctors to take patients’ cells or commercialize them without consent and the disclosure of potential profits; others argued that doing so would create a logistical nightmare that would put an end to medical progress.

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Ultimately the judge threw Moore’s suit out of court, saying he had no case. Ironically, in his decision, the judge cited the HeLa cell line as a precedent for what happened with the Mo cell line. The fact that no one had sued over the growth or ownership of the HeLa cell line, he said, illustrated that patients didn’t mind when doctors took their cells and turned them into commercial products. The judge believed Moore was unusual in his objections. But in fact, he was simply the first to realize there was something potentially objectionable going on.

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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.” The judges wrote, “A patient must have the ultimate power to control what becomes of his or her tissues. To hold otherwise would open the door to a massive invasion of human privacy and dignity in the name of medical progress.” But Golde appealed and won. And with each new decision in the suit, headlines flip-flopped:

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COURT RULES CELLS ARE THE PATIENT’S PROPERTY … COURT BACKS DOCTORS’ RIGHT TO USE PATIENT TISSUES

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Nearly seven years after Moore originally filed suit, the Supreme Court of California ruled against him in what became the definitive statement on this issue: When tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes. When you leave tissues in a doctor’s office or a lab, you abandon them as waste, and anyone can take your garbage and sell it. Since Moore had abandoned his cells, they were no longer a product of his body, the ruling said. They had been “transformed” into an invention and were now the product of Golde’s “human ingenuity” and “inventive effort.”

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Moore wasn’t awarded any of the profits, but the judge did agree with him on two counts: lack of informed consent, because Golde hadn’t disclosed his financial interests, and breach of fiduciary duty, meaning Golde had taken advantage of his position as doctor and violated patient trust. The court said researchers should disclose financial interests in patient tissues, though no law required it. It also pointed out the lack of regulation and patient protections in tissue research, and called on legislators to remedy the situation. But it said that ruling in Moore’s favor might “destroy the economic incentive to conduct important medical research,” and that giving patients property rights in their tissues might “hinder research by restricting access to the necessary raw materials,” creating a field where “with every cell sample a researcher purchases a ticket in a litigation lottery.”

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Scientists were triumphant, even smug. The dean of the Stanford University School of Medicine told a reporter that as long as researchers disclosed their financial interests, patients shouldn’t object to the use of their tissues. “If you did,” he said, “I guess you could sit there with your ruptured appendix and negotiate.”

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Despite the widespread media coverage of the Moore suit, the Lacks family had no idea any of this was happening. As the debate over ownership of human tissues played out around the country, the Lacks brothers continued to tell anyone who’d listen that Johns Hopkins had stolen their mother’s cells and owed them millions of dollars. And Deborah started handing out newsletters about her mother and the cells, saying, “I just want y’all read what’s on this paper! And tell everybody! Bring it around. We want everybody in the world to know about my mother.”

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26 – Breach of Privacy (1980 – 1985)

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Despite her fears, Deborah didn’t die on her thirtieth birthday. She just kept raising her kids, working various jobs as a barber, notary public, chemical mixer at a cement plant, grocery store clerk, limousine driver.

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In 1980, four years after divorcing Cheetah, Deborah took her car to a mechanic named James Pullum, who also worked at a local steel mill. They married in 1981, when Deborah was thirty-one and Pullum was forty-six, soon after he got called by the Lord to moonlight as a preacher. Pullum had some run-ins with the law before he was saved, but with him, Deborah felt safe. He rode around Baltimore on his Harley with a knife in his pocket and always had a pistol close. When he asked Deborah why he’d never met her mother, she laid the Rolling Stone article on the bed for him to read, and he said she should get a lawyer. She told him to mind his own business. Eventually they opened up a little storefront church, and for a while Deborah stopped worrying so much about her mother’s cells.

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Zakariyya was out of prison after serving only seven of his fifteen-year sentence. He’d gotten himself certified to fix air conditioners and work on trucks, but he still wrestled with anger and drinking, and on the rare occasions when he found jobs, he lost them quickly. He couldn’t afford rent, so he slept most nights on a bench on Federal Hill in downtown Baltimore, or on the steps of a church across the street from his father’s house. Day would sometimes look out his bedroom window and see his son lying on the concrete, but when he invited him in, Zakariyya snarled and said the ground was better. Zakariyya blamed his father for Henrietta’s death, hated him for burying her in an unmarked grave, and never forgave him for leaving the children with Ethel. Day eventually stopped inviting him in, even though it sometimes meant walking past Zakariyya sleeping on the sidewalk.

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At some point, Zakariyya noticed an ad seeking volunteers for medical studies at Hopkins, and he realized he could become a research subject in exchange for a little money, a few meals, sometimes even a bed to sleep on. When he needed to buy eyeglasses, he let researchers infect him with malaria to study a new drug. He volunteered for research on alcoholism to pay for a new job-training program, then signed up for an AIDS study that would have let him sleep in a bed for nearly a week. He quit when the researchers started talking about injections, because he thought they’d infect him with AIDS.

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None of the doctors knew they were doing research on Henrietta Lacks’s son, because he’d changed his name. Zakariyya and Deborah always figured that if Hopkins had found out he was a Lacks, they wouldn’t have let him leave.

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The biggest payday any of the Lacks children ever saw came when Day and other workers got a settlement from a class-action lawsuit against a boiler manufacturer over the damage done to their lungs from asbestos exposure at Bethlehem Steel. Day got a check for $12,000, and gave $2,000 to each of his children. Deborah used hers to buy a small piece of land in Clover, so she could someday move down to the country and live near her mother’s grave.

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Sonny’s rough period was only getting worse: most of his income now came from a food-stamp ring he ran out of Lawrence’s convenience store, and soon he found himself in jail for narcotics trafficking. And it looked like Deborah’s son Alfred was taking the same path as his uncles: by the age of eighteen, he’d already been arrested several times for minor offenses, like breaking and entering. After bailing him out a few times, Deborah started leaving him in jail to teach him a lesson, saying, “You just stay there till your bail come down to where you can afford it.” Later, when he joined the Marines and quickly went AWOL, Deborah tracked him down and made him turn himself in to the military police. She hoped some time in minimum security would convince him he never wanted to end up in a penitentiary. But things just got worse, with Alfred stealing and coming home on drugs, and eventually Deborah realized she couldn’t do a thing about it. She told him, “The devil got you, boy—that stuff you on make you crazy. I don’t know you, and I don’t want you around here no more.”

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