[4 of 5] The Immortal Life of Henrietta Lacks, Chapters 23 - 31, by Rebecca Skloot (2010) - 23-24

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.

Paragraph 1 (Image 1) 0

No whole image conversations. Start one.

Whole Image 0

No whole image conversations. Start one.

New area 0

No area-level conversations. Start one.

New area 0

No area-level conversations. Start one.

New area 0

No area-level conversations. Start one.

New area 0

No area-level conversations. Start one.

New area 0

No area-level conversations. Start one.

New area 0

No area-level conversations. Start one.

New area 0

No area-level conversations. Start one.

New area 0

No area-level conversations. Start one.

New area 0

No area-level conversations. Start one.

23 – “It’s Alive” (1973 to 1974)

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.”

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.

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

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

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

“Yeah, why?”

“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.”

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.”

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

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

“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.”

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

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

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

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?”

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

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

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?

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.

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.

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.

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.”

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.

“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.”

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.”

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.

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.

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.”

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.

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.’ “

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.”

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.

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.

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.”

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.

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.

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.

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.”

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.

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.

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.

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.

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.”

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.

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.

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.

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.

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?

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.

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.

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.

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.”

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.

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.

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.

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

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.”

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.”

24 – “Least They Can Do” (1975)

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.

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.

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.

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.

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!

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.

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

“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.”

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?”

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.

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.

“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.”

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

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.

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.

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.

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.

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.

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.

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.

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.

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

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!

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.

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.

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.”

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.

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.

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.

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

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.

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.

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:

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.

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.”

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.

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.

“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.”

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.

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.”

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.

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.”

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.”

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.

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.

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.

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.

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.

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.

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:

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

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.

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.

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:

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

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.”

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.”

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.”

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.”

26 – Breach of Privacy (1980 – 1985)

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.

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.

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.

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.

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.

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.

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.”

In the midst of all this, someone told Deborah that as Henrietta’s next of kin, she could request a copy of her mother’s records from Hopkins to learn about her death. But Deborah didn’t do it, because she was afraid of what she might find and how it might affect her. Then, in 1985, a university press published a book by Michael Gold, a reporter from Science 85 magazine, about Walter NelsonRees’s campaign to stop HeLa contamination. It was called A Conspiracy of Cells: One Woman’s Immortal Legacy and the Medical Scandal It Caused.

No one in the Lacks family remembers how they learned about Gold’s book, but when Deborah got a copy, she flipped through it as fast as she could, looking for her mother. She found the photo of Henrietta, hands on hips, at the front of the book, and her name at the end of the first chapter. Then she read the passage out loud to herself, shaking with excitement:

They were all the cells of an American who in her entire life had probably not been more than a few miles from her home in Baltimore, Maryland.… Her name was Henrietta Lacks.

In the ten-page chapter that followed, Gold quoted extensively from her medical records: the blood spotting her underwear, the syphilis, her rapid decline. No one in Henrietta’s family had ever seen those medical records, let alone given anyone at Hopkins permission to release them to a journalist for publication in a book the whole world could read. Then, without warning, Deborah turned the pages of Gold’s book and stumbled on the details of her mother’s demise: excruciating pain, fever, and vomiting; poisons building in her blood; a doctor writing, “Discontinue all medication and treatments except analgesics;” and the wreckage of Henrietta’s body during the autopsy:

The dead woman’s arms had been pulled up and back so that the pathologist could get at her chest… the body had been split down the middle and opened wide… greyish white tumor globules… filled the corpse. It looked as if the inside of the body was studded with pearls. Strings of them ran over the surfaces of the liver, diaphragm, intestine, appendix, rectum, and heart. Thick clusters were heaped on top of the ovaries and fallopian tubes. The bladder area was the worst, covered by a solid mass of cancerous tissue.

After reading that passage, Deborah fell apart. She spent days and nights crying, imagining the pain Henrietta must have been in. She couldn’t close her eyes without seeing her mother’s body split in half, arms askew, and filled with tumors. She stopped sleeping. And soon she was as angry at Hopkins as her brothers. She stayed up nights wondering, Who gave my mother medical records to a reporter? Lawrence and Zakariyya thought Michael Gold must have been related to George Gey or some other doctor at Hopkins—how else could he have gotten their mother’s records?

When I called Michael Gold years later, he didn’t remember who’d given him the records. He said he’d had “good long conversations” with Victor McKusick and Howard Jones, and was pretty sure Jones had given him the photo of Henrietta. But he wasn’t sure about the records. “They were in somebody’s desk drawer,” he told me. “I don’t remember if it was Victor McKusick or Howard Jones.” When I talked to Jones, he had no memory of Gold or his book, and denied that either he or McKusick ever gave Henrietta’s medical records to anyone.

It wasn’t illegal for a journalist to publish medical information given to him by a source, but doing so without contacting the subject’s family to ask additional questions, verify information, and let them know such private information was being published could certainly have been considered questionable judgment. When I asked Gold whether he tried to speak to the Lacks family, he said, “I think I wrote some letters and made some calls, but the addresses and phone numbers never seemed to be current. And to be honest, the family wasn’t really my focus. … I just thought they might make some interesting color for the scientific story.”

Regardless, it was not standard practice for a doctor to hand a patient’s medical records over to a reporter. Patient confidentiality has been an ethical tenet for centuries: the Hippocratic Oath, which most doctors take when graduating from medical school, says that being a physician requires the promise of confidentiality because without it, patients would never disclose the deeply personal information needed to make medical diagnoses. But like the Nuremberg Code and the American Medical Association Code of Ethics, which clearly said that doctors should keep patient information confidential, the Hippocratic Oath wasn’t law.

Today, publishing medical records without permission could violate federal law. But in the early eighties, when someone gave Henrietta’s medical records to Gold, there was no such law. Many states—more than thirty, in fact—had passed laws protecting the confidentiality of a patient’s medical records, but Maryland was not one of them.

Several patients had successfully sued their doctors for privacy violations, including one whose medical records were released without her consent, and others whose doctors either published photographs or showed videos of them publicly, all without consent. But those patients had one thing going for them that Henrietta didn’t: They were alive. And the dead have no right to privacy—even if part of them is still alive.

27 – The Secret of Immortality (1984 – 1995)

More than thirty years after Henrietta’s death, research on HeLa cells finally helped uncover how her cancer started and why her cells never died. In 1984 a German virologist named Harald zur Hausen discovered a new strain of a sexually transmitted virus called Human Papilloma Virus 18 (HPV-18). He believed it and HPV-16, which he’d discovered a year earlier, caused cervical cancer. HeLa cells in his lab tested positive for the HPV-18 strain, but zur Hausen requested a sample of Henrietta’s original biopsy from Hopkins, so he could be sure her cells hadn’t been contaminated with the virus in culture. The sample didn’t just test positive; it showed that Henrietta had been infected with multiple copies of HPV-18, which turned out to be one of the most virulent strains of the virus.

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. Throughout the eighties, usingHeLa and other cells, scientists studied HPV infection and how it causes cancer. They learned that HPV inserts its DNA into the DNA of the host cell, where it produces proteins that lead to cancer. They also found that when they blocked the HPV DNA, cervical cancer cells stopped being cancerous. These discoveries would help lead to an HPV vaccine, and eventually earn zur Hausen a Nobel Prize.

Research into HPV eventually uncovered how Henrietta’s cancer started: HPV inserted its DNA into the long arm of her eleventh chromosome and essentially turned off her p53 tumor suppressor gene. What scientists still haven’t figured out is why this produced such monstrously virulent cells both in and out of Henrietta’s body, especially since cervical cancer cells are some of the hardest of all cells to culture.

When I talked to Howard Jones fifty years after he found the tumor on Henrietta’s cervix, he was in his early nineties and had seen thousands of cervical cancer cases. But when I asked if he remembered Henrietta, he laughed. “I could never forget that tumor,” he said, “because it was unlike anything I’ve ever seen.”

I talked to many scientists about HeLa, and none could explain why Henrietta’s cells grew so powerfully when many others didn’t even survive. Today it’s possible for scientists to immortalize cells by exposing them to certain viruses or chemicals, but very few cells have become immortal on their own as Henrietta’s did.

Members of Henrietta’s family have their own theories about why her cells grew so powerfully: Henrietta’s sister Gladys never forgave her for moving to Baltimore and leaving their father behind for Gladys to care for as he aged. The way Gladys saw it, that cancer was the Lord’s way of punishing Henrietta for leaving home. Gladys’s son Gary believed all disease was the wrath of the Lord—punishment for Adam eating the apple from Eve. Cootie said it was the disease-causing spirits. And Henrietta’s cousin Sadie never knew what to think.

“Oh Lord,” she told me once. “When I heard about them cells I thought, Could it’a been somethin live got up in her, you know? It scared me, cause we used to go around together all the time. Hennie and I ain’t never been in that nasty water down there in Turners Station like the other peoples, we didn’t go to no beach or nothing like that, and we didn’t never go without no panties or anything, so I don’t know how something got up inside Hennie. But it did. Somethin came alive up in her. She died, and it just keep on living. Made me start thinkin things, you know, like maybe something come out of space, dropped down, and she walked over it.”

Sadie laughed when she said this because she knew it sounded crazy. “But that did went through my mind,” she said. “I ain’t lying. Everything just go through your mind, you know? How else you gonna explain them cells growin like they do?”

Every decade has had its landmark moments in HeLa research, and the connection between HPV and cervical cancer was only one of several in the eighties. At the beginning of the AIDS epidemic, a group of researchers—including a molecular biologist named Richard Axel, who would go on to win a Nobel Prize—infected HeLa cells with HIV. Normally, HIV can infect only blood cells, but Axel had inserted a specific DNA sequence from a blood cell into HeLa cells, which made it possible for HIV to infect them as well. This allowed scientists to determine what was required for HIV to infect a cell—an important step toward understanding the virus, and potentially stopping it.

Axel’s research caught the attention of Jeremy Rifkin, an author and activist who was deeply involved in a growing public debate over whether scientists should alter DNA. 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.

In 1987 he filed a lawsuit in federal court to halt Axel’s research on the grounds that it violated the 1975 National Environmental Policy Act, because it had never been proven environmentally safe. It was widely known, Rifkin pointed out, that HeLa was “an extraordinarily virulent and infectious line of cells” that could contaminate other cultures. Once Axel infected HeLa cells with HIV, Rifkin said, they could infect other cells and expose lab researchers around the world to HIV, “thus increasing the virus’ host range and potentially leading to the further hazardous dissemination of the AIDS virus genome.”

Axel responded to the suit by explaining that cells couldn’t grow outside of tissue culture and that there was a world of difference between culture contamination and HIV infection. Science reported on the lawsuit, writing, “Even Rifkin admits that taken together these events sound more like the plot of a grade-B horror movie than the normal run of affairs in the country’s biomedical research laboratories.” Eventually the suit was dismissed, Axel went on using HeLa for HIV research, and Rifkin’s horror-film scenario didn’t come true.

But in the meantime two scientists had developed a theory about HeLa that sounded far more like science fiction than anything Rifkin had come up with: HeLa, they said, was no longer human.

Cells change while growing in culture, just as they change in a human body. They’re exposed to chemicals, sunlight, and different environments, all of which can cause DNA changes. Then they pass those changes on to each new generation of cells through cell division, a random process that produces even more changes. Like humans, they evolve.

All of this happened to Henrietta’s cells once they were placed in culture. And they passed those changes on to their daughter cells, creating new families of HeLa cells that differed from one another in the same way that second, third, and fourth cousins differ, though they share a common ancestor.

By the early nineties, the little sample of Henrietta’s cervix that Mary had put into culture in the Gey lab had given rise to many tons of other cells—all still known as HeLa, but all slightly different from one another, and from Henrietta. Because of this, Leigh Van Valen, an evolutionary biologist at the University of Chicago, wrote, “We here propose, in all seriousness, that [HeLa cells] have become a separate species.”

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.

No one challenged this idea, but no one acted on it either, so Henrietta’s cells remained classified as human. But even today some scientists argue that it’s factually incorrect to say that HeLa cells are related to Henrietta, since their DNA is no longer genetically identical to hers.

Robert Stevenson, one of the researchers who devoted much of his career to straightening out the HeLa contamination mess, laughed when he heard that argument. “It’s just ridiculous,” he told me. “Scientists don’t like to think of HeLa cells as being little bits of Henrietta because it’s much easier to do science when you disassociate your materials from the people they come from. But if you could get a sample from Henrietta’s body today and do DNA fingerprinting on it, her DNA would match the DNA in HeLa cells.”

Around the time Van Valen suggested HeLa was no longer human, researchers began exploring whether Henrietta’s cells might hold the key to human life extension—perhaps even immortality—and headlines once again claimed that scientists had found the fountain of youth. In the early 1900s, Carrel’s chicken-heart cells supposedly proved that all cells had the potential for immortality. But normal human cells—either in culture or in the human body—can’t grow indefinitely like cancer cells. They divide only a finite number of times, then stop growing and begin to die. The number of times they can divide is a specific number called the Hayflick Limit, after Leonard Hayflick, who’d published a paper in 1961 showing that normal cells reach their limit when they’ve doubled about fifty times.

After years of disbelief and argument from other scientists, Hayflick’s paper on cell limits became one of the most widely cited in his field. It was an epiphany: scientists had been trying for decades to grow immortal cell lines using normal cells instead of malignant ones, but it had never worked. They thought their technique was the problem, when in fact it was simply that the lifespan of normal cells was preprogrammed. Only cells that had been transformed by a virus or a genetic mutation had the potential to become immortal.

Scientists knew from studying HeLa that cancer cells could divide indefinitely, and they’d speculated for years about whether cancer was caused by an error in the mechanism that made cells die when they reached their Hayflick Limit. They also knew that there was a string of DNA at the end of each chromosome called a telomere, which shortened a tiny bit each time a cell divided, like time ticking off a clock. As normal cells go through life, their telomeres shorten with each division until they’re almost gone. Then they stop dividing and begin to die. This process correlates with the age of a person: the older we are, the shorter our telomeres, and the fewer times our cells have left to divide before they die.

By the early nineties, a scientist at Yale had used HeLa to discover that human cancer cells contain an enzyme called telomerase that rebuilds their telomeres. The presence of telomerase meant cells could keep regenerating their telomeres indefinitely. This explained the mechanics of HeLa’s immortality: telomerase constantly rewound the ticking clock at the end of Henrietta’s chromosomes so they never grew old and never died. It was this immortality, and the strength with which Henrietta’s cells grew, that made it possible for HeLa to take over so many other cultures—they simply outlived and outgrew any other cells they encountered.

28 – After London (1996 – 1999)

The story of Henrietta Lacks eventually caught the attention of a BBC producer in London named Adam Curtis, and in 1996, he began making the documentary about Henrietta that I would later watch in Courtney Speed’s beauty parlor. When Curtis arrived in Baltimore with his assistants and cameras and microphones, Deborah thought everything would change, that she and the rest of the world would learn the true story of Henrietta Lacks and the HeLa cells, and she would finally be able to move on. She started referring to periods in her life as “before London” and “after London.”

Curtis and his crew covered the Lacks family story in more depth than anyone ever had, filling dozens of hours of video interviewing Deborah, prompting her from off camera to speak in complete sentences, and not wander off topic. Deborah said things like “I used to go into a corner after I was married. My husband didn’t even know anything about me, you know, just being sad and crying to myself…. I just ask these questions in my head. … Why, Lord, did you take my mother when I needed her so much?”

The interviewer asked, “What is cancer?”

The BBC interviewed Deborah in front of the home-house in Clover; they shot Day and Sonny leaning on Henrietta’s mother’s tombstone, talking about what a good cook Henrietta was, and how they never heard anything about the cells until researchers called wanting blood. And they followed the Lacks family to Atlanta for a conference organized in Henrietta’s honor by Roland Pattillo, the scientist who would soon steer me to Deborah.

Pattillo grew up in the thirties, the son of a blacksmith turned railroad worker in a small segregated Louisiana town. He was the first in his family to go to school, and when he learned about Henrietta as a postdoctoral fellow in Gey’s lab, he felt immediately connected to her. He’d wanted to honor her contributions to science ever since. So on October 11, 1996, at Morehouse School of Medicine, he organized the first annual HeLa Cancer Control Symposium. He invited researchers from around the world to present scientific papers on cancer in minorities, and he petitioned the city of Atlanta to name October 11, the date of the conference, Henrietta Lacks Day. The city agreed and gave him an official proclamation from the mayor’s office. He asked Howard Jones to contribute an article recording his memories of diagnosing Henrietta’s tumor. Jones wrote:

From a clinical point of view, Mrs. Lacks never did well. … As Charles Dickens said at the beginning of [A] Tale of Two Cities, ‘It was the best of times, it was the worst of times.’ But it was the best of times for science in that this very peculiar tumor gave rise to the HeLa cell line. … For Mrs. Lacks and the family she left behind, it was the worst of times. Scientific progress and indeed progress of all kinds is often made at great cost, such as the sacrifice made by Henrietta Lacks.

Pattillo got Deborah’s phone number through a physician friend at Hopkins and called her. When she heard about his plans for the conference and the official naming of Henrietta Lacks Day, she was ecstatic: finally, a scientist was honoring her mother. Soon the Lacks family—Day, Sonny, Lawrence, Deborah, Bobbette, Zakariyya, and Deborah’s grandson Davon—piled into an RV that Pattillo rented for them and drove to Atlanta, with the BBC film crew following behind.

At a gas station along the way, Deborah smiled into the camera and explained why they were headed to Morehouse.

“They gonna have a lot of doctors there talking on different subjects and different areas of the science field,” she said. “And they’re gonna hand out plaques to my brother and my father and me in honor of our mother name. So I know it’s gonna be a great occasion.”

And it was. For the first time, the Lackses were treated like celebrities: they stayed in a hotel, people asked for their autographs. But there were a few glitches. In all the excitement leading up to the ceremony, Sonny’s blood pressure shot up dangerously high and he ended up in the hospital, nearly missing the whole event. Zakariyya emptied the minibar in his room, then emptied his father’s and Deborah’s. He yelled and threw programs when he saw that they listed him as “Joseph Lacks” and Henrietta as the woman who’d “donated” the HeLa cells.

Deborah did her best to ignore all that. When she walked onto the stage, she was so nervous the podium shook when she touched it. She’d worried for weeks that there might be a sniper in the audience—a scientist who’d want to take her out to do research on her body, or to keep the family from causing problems. But Pattillo assured her she was safe.

“Excuse me if I mispronouncing a word,” she told everyone at the conference, “but I have problems and I didn’t get the right teaching when I was coming up in school. I was not even allowed to have hearing aid until after I was grown. But I’m not ashamed of it.”

Then, with Pattillo cheering nearby, Deborah cleared her throat and began her speech: When Dr. Pattillo called me, it all became real. For years, it seem to be a dream. Not knowing what was going on all these years. Didn’t know how to even talk about it. Can this about our mother be true? Not knowing who to go to for understanding. No one from the medical field took the time.

Then, without so much as a pause, she began talking directly to her mother:

We miss you, Mama. … I think of you all the time and wish I could see and hold you in my arms, like I know you held me. My father said that you told him on your dying bed to take care of Deborah. Thank you, Ma, we will see you again someday. We read what we can and try to understand. My mind often wonder how things might would be if God had you stay here with me. … I keep with me all I know about you deep in my soul, because I am part of you, and you are me. We love you, Mama.

It seemed like things were going better for the Lackses, like Henrietta would finally begin getting the recognition Deborah hoped for.

Soon the BBC showed up in Turner Station, asking locals about life there in the forties and fifties. News of their visit, like news of everything else that happens in Turner Station, quickly found its way to Speed’s Grocery, where Courtney Speed learned the story of Henrietta Lacks for the first time. It felt like serendipity—she and several other women had recently founded the Turner Station Heritage Committee, and they were organizing events to bring attention to black people from Turner Station who’d contributed good things to the world: a former congressman who became president of the NAACP, an astronaut, and the man who’d won several Emmy awards as the voice of Sesame Street’s Elmo.

When they learned about Henrietta and HeLa, Speed and a sociologist at Morgan State University named Barbara Wyche went into overdrive. They wrote letters to Congress and the mayor’s office demanding recognition of Henrietta’s contribution to science. They also got in touch with Terry Sharrer, a curator at the Smithsonian National Museum of American History, who invited the Lacks family to a small event at the museum. There Day admired old farm equipment and insisted that he wanted to see his wife’s cells. (The museum had a flask of HeLa in storage somewhere, the medium as dark as a murky pond, but it wasn’t on display.) People came up to Deborah with tears in their eyes and told her that her mother’s cells had helped them overcome cancer. Deborah was thrilled. After hearing a researcher talk about cloning, Deborah asked Sharrer whether it was possible to take DNA from HeLa cells and put it into one of Deborah’s eggs to bring her mother back to life. Sharrer said no.

After the event, Sharrer wrote a letter to Wyche suggesting that, to commemorate Henrietta, she and Speed consider starting an African-American health museum in Turner Station. The women soon founded the Henrietta Lacks Health History Museum Foundation, Inc., with Speed as president. They planned events featuring Henrietta Lacks look-alikes—a few Turner Station women who’d style their hair like Henrietta’s and wear suits identical to the one she wore in her iconic photo. To raise awareness of Henrietta’s contribution, Speed used her own money to make and give away Henrietta Lacks T-shirts, and someone else made Henrietta Lacks pens. The local papers wrote about their plan for a $7 million museum, and Speed and Wyche opened a Henrietta Lacks Foundation bank account, filed for a tax ID number, and began trying to collect as much money and information as they could for the museum. One of their first goals was getting a life-sized wax Henrietta statue.

Deborah wasn’t appointed as an officer or foundation board member, but Speed and Wyche called occasionally to ask if she’d speak at various celebrations honoring her mother—once under a small tent near Speed’s Grocery, other times at a nearby church. Eventually someone suggested that Deborah donate Henrietta’s Bible and the locks of hair from Henrietta and Elsie that she kept tucked inside. It was for safekeeping, people said, in case Deborah’s house ever caught fire. When Deborah heard that, she ran home and hid her mother’s Bible, telling her husband, “That’s the only things I have from my mother, now they want to take it!”

When she found out that Speed and Wyche had started a foundation and bank account in her mother’s name, Deborah was furious. “The family don’t need no museum, and they definitely don’t need no wax Henrietta,” she said. “If anybody collecting money for anything, it should be Henrietta children collecting money for going to the doctor.”

Deborah only agreed to help with the museum project when it looked like Speed and Wyche might turn up information about her mother. The three of them hung handwritten flyers in Speed’s grocery store and around Turner Station, asking, “Who knew her favorite hymn? Who knew her favorite scripture? Who knew her favorite color? Who knew her favorite game?” The first two questions were Speed’s; the second two came from Deborah.

At one point Speed and Wyche invited Gey’s former assistant, Mary Kubicek, to an event in the basement of the New Shiloh Baptist Church in Turner Station, to talk about how she grew HeLa cells. Mary stood wrapped in scarves on a small platform stage, nervous and going blind, as distant Lacks cousins and locals not related to Henrietta yelled questions from the audience, demanding to know who made money off the cells, and whether Gey had patented them.

“Oh no,” Mary said, shifting from foot to foot. “No, no, no … there was no way to patent cells then.” She told them that in the fifties, no one imagined such a thing might someday be possible. Gey just gave the cells away for free, she said, for the good of science.

People in the room grumbled, and tension grew. One woman stood up and said, “Them cells cured me of my cancer, if I got cells that can help somebody like her cells help me, I say take em!” Another woman said she still believed Gey had patented the cells, then yelled, “I hope in the future this could be rectified!” Deborah just fluttered around the room saying that her mother had cured cancer and everyone should just calm down. Then she asked Mary to tell the story about seeing her mother’s red toenails during the autopsy—the one Deborah had read in Gold’s book. Mary did, and the audience fell silent.

While Speed worked with other Turner Station residents to gather memories of Henrietta, Wyche wrote letter after letter, trying to get recognition for Henrietta and attract donors to pay for the museum. And she got results: the Maryland State Senate sent a resolution on fancy paper, saying, “Be it hereby known to all that The Senate of Mary land offers its sincerest congratulations to Henrietta Lacks.” On June 4, 1997, Representative Robert Ehrlich Jr. spoke before the U.S. House of Representatives, saying, “Mr. Speaker, I rise today to pay tribute to Henrietta Lacks.” He told Congress her story, saying, “Ms. Lacks was not acknowledged as the donor of the cells.” He said it was time for that to change. This, everyone seemed to believe, was where Hopkins should come in.

Wyche had been working on that: she’d written a meticulously detailed three-page, single-spaced letter to William Brody, then president of Johns Hopkins. She called Henrietta an “unsung local heroine,” explaining the importance of the HeLa cells, and quoting a historian saying the HeLa story was “one of the most dramatic and important in the history of research at the Johns Hopkins Medical Institution.” She also wrote this:

The [Lacks] family has suffered greatly.… This family is, like so many others today, attempting to grapple with the many questions and the moral and ethical issues that surround the “birth” of HeLa, and the “death” of Mrs. Lacks. … The questions of (1) whether or not permission was received from the “donor” or her family for either the “use” of HeLa worldwide or the “mass,” and commercial, production, distribution, and marketing of Mrs. Lacks’ cells … (2) whether or not scientists, university and government personnel and others have acted ethically in these two areas or in their interactions with the family … Other social issues also arise because Mrs. Lacks was an African American Woman.

One month later, Ross Jones, assistant to the president of Hopkins, replied. He said he was “uncertain what role Hopkins might play in any plan to celebrate Mrs. Lacks’ life,” but that he wanted to share this information with Wyche:

Please let me emphasize that Hopkins never used the HeLa cells in a commercial venture. Hopkins never sought, nor realized, any money from the development, distribution or use of the HeLa cell cultures. In keeping with almost universally accepted practice at the time, physicians and other scientists at Hopkins and elsewhere did not seek permission to use tissue removed as part of diagnostic and treatment procedures. Also, in keeping with traditions of academic research at the time, the cultures were shared freely, without compensation and in good faith with scientists around the world who requested them. Indeed, willingness of Hopkins scientists to provide access to the cultures is perhaps the principal reason for the great benefits that have derived from their use.

As I’m sure we both know, many standards of practice in academic medicine have changed dramatically in recent years, and I hope and trust that there is increased sensitivity to, and awareness of, the wishes and interests of patients when they seek medical care or participate in research. That is all to the good, for academic medicine and those we serve. He also told Wyche that he had circulated her letter to “others at Hopkins for comment and consideration.” Soon a small group of people at Hopkins began meeting unofficially, without telling Wyche or Speed, to discuss what the university might do to honor Henrietta and the Lacks family.

Then they heard about Cofield.

Sir Lord Keenan Kester Cofield was the cousin of Deborah’s husband’s former stepdaughter, or something like that. No one in the family remembers for sure. They also don’t know how or when he learned about Henrietta’s cells. What they do remember is that one day Cofield called Deborah, saying he was a lawyer and that she needed to protect herself and her mother by copyrighting the name Henrietta Lacks. He also said he believed Hopkins was guilty of medical malpractice, and that it was time to sue for the family’s cut of all the money Henrietta’s cells had earned since the fifties, a percentage of which he would take as his fee. He would charge nothing up front, and the Lackses wouldn’t have to pay if he didn’t win.

Deborah had never heard about needing to copyright anything, but the family had always thought they should talk to a lawyer about the cells, and Cofield sounded like one they could afford. Deborah’s brothers were thrilled, and she soon introduced Cofield to Speed and Wyche as the family’s lawyer.

Cofield began spending his days at Hopkins, digging through the medical school’s archives, taking notes. Of all the people who’d come to the Lackses over the years talking about the cells, he was the first to tell the family anything specific about what happened to Henrietta at Hopkins. The way the Lackses remember it, his findings confirmed their worst fears. He told them that one of the doctors who treated Henrietta didn’t have a medical license, and that another had been expelled from the American Medical Association. On top of that, Cofield said, Henrietta’s doctors had misdiagnosed her cancer and might have killed her with an overdose of radiation.

He told Deborah he needed to read her mother’s medical records to investigate how the doctors had treated her, and to document any possible malpractice. Since only Henrietta’s family members were authorized to request her records, Deborah agreed to go with him to Hopkins, where she filled out a request form. But the photocopy machine was broken, so the woman behind the desk told Deborah and Cofield they’d have to come back later, once the machine was fixed.

When Cofield returned alone, the staff refused to give him the records because he wasn’t a doctor or a relative of the patient. When Cofield said he was Dr. Sir Lord Keenan Kester Cofield, the Hopkins medical records staff contacted Richard Kidwell, one of Hopkins’s attorneys. Kidwell got suspicious the moment he heard that someone was poking around Hopkins using the title “Dr. Sir Lord,” so he did some quick background research.

Keenan Kester Cofield wasn’t a doctor or lawyer at all. In fact, Cofield had served years in various prisons for fraud, much of it involving bad checks, and he’d spent his jail time taking law courses and launching what one judge called “frivolous” lawsuits. Cofield sued guards and state officials connected to the prisons he’d been in, and was accused of calling the governor of Alabama from jail and threatening to murder him. Cofield sued McDonald’s and Burger King for contaminating his body by cooking fries in pork fat, and he threatened to sue several restaurants for food poisoning—including the Four Seasons in New York City—all while he was incarcerated and unable to eat at any restaurants. He sued The Coca-Cola Company, claiming a bottle of soda he’d bought was filled with ground glass, though he was in a prison that only offered Pepsi products in aluminum cans. He’d also been convicted of fraud for a scam in which he got an obituary of himself published, then sued the newspaper for libel and damages up to $100 million. He told the FBI that he’d filed at least 150 similar lawsuits.

In various court documents, judges described Cofield as a “con artist,” “no more than a gadfly and an exploiter of the court system,” and “the most litigious inmate in the system.” By the time Cofield contacted the Lackses about suing Hopkins, he’d been banned from filing lawsuits in at least two counties.

But Deborah knew none of this. Cofield called himself doctor and lawyer, and seemed capable of getting and understanding more information from Hopkins than the family ever could. And his demeanor didn’t hurt. When Courtney Speed described him to me a few years later, she said, “Charisma! Woo! I mean, cream of the smooth! Very well versed and knew something about everything.”

When Kidwell learned the truth about Cofield, the first thing he did was protect Deborah—something the Lacks family never would have expected from someone at Hopkins. He told her that Cofield was a con artist, and had her sign a document forbidding Cofield ac-cess to her family’s records. The way everyone I talked to at Hopkins remembers it, when Cofield came back and learned that the family had denied him access, he yelled and demanded copies of the records until a security guard threatened to physically remove him and call the police.

Cofield then filed a lawsuit against Deborah, Lawrence, Courtney Speed, the Henrietta Lacks Health History Museum Foundation, and a long list of Hopkins officials: the president, the medical records administrator, an archivist, Richard Kidwell, and Grover Hutchins, the director of autopsy services. He sued ten defendants in all, and several of the Hopkins employees involved had never heard of Cofield or Henrietta Lacks before their subpoenas arrived.

Cofield accused Deborah, Speed, and the museum foundation of breach of contract for entering into an agreement that required him to have access to Henrietta’s medical records, then denying him access. He claimed that Deborah could not legally prohibit him from doing research for the Henrietta Lacks Health History Museum Foundation, because she was not a member of its board of directors, or officially involved with the foundation in any way. He also claimed racial discrimination, saying he was “harassed by negro security of Johns Hopkins, and staff at the archives,” and that “the defendants and employees actions were all racially motivated and very anti-black.” He demanded access to the medical records and autopsy re ports of Henrietta and Deborah’s sister, Elsie, as well as damages of $15,000 per defendant, plus interest.

The most astonishing detail of Cofield’s suit was his claim that the Lacks family had no right to any information about Henrietta Lacks because she’d been born Loretta Pleasant. Since there was no official record of a name change, Cofield argued, Henrietta Pleasant had never actually existed, and therefore neither had Henrietta Lacks. Whoever she was, he said, the family wasn’t legally related to her. In a statement so filled with grammatical errors it’s difficult to understand, Cofield called this an “obvious fraud and conspiracy” and claimed that his lawsuit would “ultimately lead to the ends of justice for only Mrs. Henrietta Lacks, and now the plaintiff who has become the victim of a small, but big time fraud.”

Piles of legal documents began arriving almost daily at Deborah’s door: summonses and petitions and updates and motions. She panicked. She went to Turner Station and burst into Speed’s grocery store screaming, demanding that Speed give her everything she’d gathered related to Henrietta: the documents Speed kept in a superhero pillowcase, the Henrietta Lacks T-shirts and pens, the video of Wyche interviewing Day in Speed’s beauty parlor. Deborah yelled at Speed, accused her of conspiring with Cofield, and said she was going to hire O. J. Simpson’s lawyer, Johnnie Cochran, and sue Speed for everything she had if she didn’t shut down the foundation and stop all Henrietta-related activities.

But Speed had nothing and was just as scared as Deborah. She was a single mother with six sons, and she planned to put all of them through college using money she made cutting hair and selling chips, candy, and cigarettes. Her store was being robbed regularly, and she was getting just as many court mailings from Cofield as Deborah was. Soon, Speed stopped opening the letters and let them pile up in the backroom of her store until they stacked thirty envelopes high. Then she started a new pile. She prayed to God for the letters to stop, and wished her husband was still alive to deal with Cofield.

By this time the BBC documentary had aired, and reporters were calling Deborah, requesting photos of Henrietta and the family, and asking questions about her mother and how she died. But Deborah still didn’t know anything beyond what she’d read in Gold’s book. It was time, she decided, to find out what her mother’s medical records said. So she requested a copy from Hopkins, along with a copy of her sister’s records.

She also met with Kidwell, who told her not to worry and promised that Hopkins would fight Cofield. And it did. The case was eventually dismissed, but everyone involved was spooked. When the group at Hopkins that had been working on a plan to honor Henrietta heard about Cofield’s lawsuit, they quietly dropped the idea, never telling the Lackses they’d even considered it.

Years later, when I talked to Grover Hutchins, the pathologist listed in Cofield’s lawsuit, he shook his head and said, “The whole thing was very sad. They wanted to have some kind of recognition for Henrietta, but then things got so hairy with Cofield and the crazy things he was saying the family thought about Hopkins, they decided it was best to let sleeping dogs lie and not get involved with anything having to do with the Lackses.”

When I talked with Johns Hopkins spokesperson JoAnn Rodgers, she said there had never been an official effort by Hopkins to honor Henrietta. “It was an individual effort—maybe one or two people—and when they went away, it went away. It was never an institutional initiative.”

Though the subpoenas had finally stopped coming, Deborah didn’t believe the lawsuit was truly over. She couldn’t shake the idea that Cofield might send people to her house to steal her mother’s Bible or the lock of hair she kept tucked inside it. Or maybe he’d try to steal her cells, thinking they might be valuable like her mother’s.

She stopped checking her mail and rarely left the house except to work her shifts driving a school bus for disabled children. Then she was in a freak accident: a teenager on the bus attacked her, throwing himself on top of her, biting and scratching until two men ran onto the bus and pulled him off. A few days later the same boy attacked her again, this time permanently damaging several discs in her spine.

Deborah had her husband hang dark curtains on their windows and stopped answering her phone. Then, sitting in her dark living room a year and a half after Cofield’s lawsuit ended, she finally began reading and rereading the full details of her mother’s death in her medical records. And for the first time, she learned that her sister had been committed to a mental institution called Crownsville.

She began worrying that something bad had happened to her sister in that hospital. Maybe she was used in some kind of research like our mother, she thought. Deborah called Crownsville for a copy of Elsie’s records, but an administrator said most of Crownsville’s documents from before 1955, the year Elsie died, had been destroyed. Deborah immediately suspected that Crownsville was hiding information about her sister, just as she still believed Hopkins was hiding information about Henrietta. Within hours of her call to Crownsville, Deborah became disoriented and had trouble breathing. Then she broke out in hives—red welts covering her face, neck, and body, even the soles of her feet. When she checked herself into a hospital, saying, “Everything going on with my mother and sister is making my nerves break down,” her doctor said her blood pressure was so high she’d nearly had a stroke.

A few weeks after Deborah came home from the hospital, Roland Pattillo left a message on her answering machine saying he’d been talking to a reporter who wanted to write a book about Henrietta and her cells, and he thought Deborah should talk to her. That reporter was me.

29 – A Village of Henriettas (2000)

For nearly a year after our first conversation, Deborah refused to talk to me. I traveled back and forth to Clover, sitting on porches and walking the tobacco fields with Cliff, Cootie, and Gladys’s son Gary. I dug through archives, church basements, and the abandoned, falling-down building where Henrietta went to school. While I was on the road, I’d leave messages for Deborah every few days, hoping to convince her that if she talked to me, we could learn about Henrietta together.

“Hey, I’m in your mother’s tobacco field by the home-house,” I told her. “I’m on the porch with Cousin Cliff, he says hi.” “I found your mother’s baptism records today.” “Aunt Gladys is doing well after her stroke. She told me some great stories about your mom.” I imagined Deborah leaning over her answering machine listening, dying to know what I’d found.

But she never picked up.

One day her husband, the Reverend James Pullum, answered the phone on the second ring and started yelling without saying hello: “They want to be assured that they going to get some MONETARY SATISFACTION. And until anybody makes an AGREEMENT or puts that on PAPER, they are NOT going to talk ANYMORE. Everybody’s received some compensation but them, and that was they MOTHER. They just feel wrong about it. It’s been a real long haul for my wife, and she really takes a trip on it. Used to be she just wanted John Hopkin to give her mother some credit and explain that cell stuff to where she understand what happened to her mother. But they ignored us, so now we just mad.” Then he hung up on me. A few days later, ten months after our first conversation, Deborah called me. When I answered the phone, she yelled, “Fine, I’ll talk to you!” She didn’t say who she was and didn’t need to. “If I’m gonna do this, you got to promise me some things,” she said. “First, if my mother is so famous in science history, you got to tell everybody to get her name right. She ain’t no Helen Lane. And second, everybody always say Henrietta Lacks had four children. That ain’t right, she had five children. My sister died and there’s no leavin her out of the book. I know you gotta tell all the Lacks story and there’ll be good and bad in that cause of my brothers. You gonna learn all that, I don’t care. The thing I care about is, you gotta find out

what happened to my mother and my sister, cause I need to know.” She took a deep breath, then laughed.

“Get ready, girl,” she said. “You got no idea what you gettin yourself into.”

Deborah and I met on July 9, 2000, at a bed-and-breakfast on a cobblestone street corner near the harbor in Baltimore, in a neighborhood called Fell’s Point. When she saw me standing in the lobby waiting for her, she pointed to her hair and said, “See this? I’m the gray child cause I’m the one doing all the worrying about our mother. That’s why I wouldn’t talk to you this last year. I swore I was never talkin to nobody about my mother again.” She sighed. “But here I am … I hope I don’t regret this.”

Deborah was a substantial woman—about five feet tall and two hundred pounds. Her tight curls were less than an inch long and jet black, except for a thin streak of natural gray framing her face like a headband. She was fifty, but seemed both a decade older and younger at the same time. Her smooth light brown skin was dotted with big freckles and dimples, her eyes light and mischievous. She wore capri pants and Keds sneakers and moved slowly, leaning most of her weight on an aluminum cane.

She followed me to my room, where a large flat package covered in bright, flowered wrapping paper lay on the bed. I told her it was a gift for her from a young Hopkins cancer researcher named Christoph Lengauer. He’d e-mailed me a few months earlier in response to an article I’d published in Johns Hopkins Magazine after meeting the Lacks men. “I felt somehow bad for the Lacks family,” Lengauer wrote. “They deserved better.”

He’d been working with HeLa cells daily his whole career, he said, and now he couldn’t get the story of Henrietta and her family out of his mind. As a Ph.D. student, he’d used HeLa to help develop something called fluorescence in situ hybridization, otherwise known as FISH, a technique for painting chromosomes with multicolored fluorescent dyes that shine bright under ultraviolet light. To the trained eye, FISH can uncover detailed information about a person’s DNA. To the untrained eye, it simply creates a beautiful mosaic of colored chromosomes.

Christoph had framed a fourteen-by-twenty-inch print of Henrietta’s chromosomes that he’d “painted” using FISH. It looked like a photograph of a night sky filled with multicolored fireflies glowing red, blue, yellow, green, purple, and turquoise.

“I want to tell them a little what HeLa means to me as a young cancer researcher, and how grateful I am for their donation years ago,” he wrote. “I do not represent Hopkins, but I am part of it. In a way I might even want to apologize.”

Deborah threw her black canvas tote bag onto the floor, tore the wrapping paper from the photo, then held the frame at arm’s length in front of her. She said nothing, just ran through a set of French doors onto a small patio to see the picture in the setting sunlight.

“They’re beautiful!” she yelled from the porch. “I never knew they were so pretty!” She walked back inside clutching the picture, her cheeks flushed. “You know what’s weird? The world got more pictures of my mother cells than it do of her. I guess that’s why nobody knows who she is. Only thing left of her is them cells.”

She sat down on the bed and said, “I want to go to research labs and seminars to learn what my mother cells did, talk to people that been cured of cancer.” She started bouncing, excited like a little girl. “Just thinkin about that make me want to get back out there. But something always happens and I go back into hiding.”

I told her Lengauer wanted her to come into his lab. “He wants to say thank you and show you your mother’s cells in person.”

Deborah traced her mother’s chromosomes in the picture with her finger. “I do want to go see them cells, but I’m not ready yet,” she said. “My father and my brothers should go too, but they think I’m crazy just comin down here. They always yellin about ‘Them white folks gettin rich off our mother while we got nothin.’” Deborah sighed. “We ain’t gonna get rich about any of this stuff on my mother cells. She out there helpin people in medicine and that’s good, I just want the history to come out to where people know my mother, HeLa, was Henrietta Lacks. And I would like to find some information about my mother. I’m quite sure she breastfed me, but I never knew for sure. People won’t talk about my mother or my sister. It’s like the two of them never born.”

Deborah grabbed her bag off the floor, and dumped its contents onto the bed. “This is what I got about my mother,” she said, pointing to a pile on the bed. There were hours of unedited videotapes from the BBC documentary, a tattered English dictionary, a diary, a genetics textbook, many scientific journal articles, patent records, and unsent greeting cards, including several birthday cards she’d bought for Henrietta, and a Mother’s Day card, which she grabbed off the pile.

“I carried this around in my purse for a long time,” she said, handing it to me. The outside was white with pink flowers, and inside, in flowing script, the card said, “May the spirit of our Lord and savior be with you on this day on which you are honored for all the love you have given to your family and loved ones. With prayers and love. Happy Mother’s Day.” It was signed “Love, Deborah.”

But mostly her bag was filled with ragged newspaper and magazine articles. She held up a story about her mother from the Weekly World News tabloid. It was headlined THE IMMORTAL WOMAN! and it ran between an article about a telepathic dog and another about a half-human, half-alligator child.

“When I saw this thing in the grocery store, it scared me half to death,” Deborah told me. “I was like, what crazy thing they sayin happened to my mother now? Everybody always say Hopkins took black folks and experiment on them in the basement over there. Nobody could prove it so I never did believe it really. But when I found out about my mother cells, I didn’t know what to think except maybe all that stuff about them experimentin on people is true.”

Just a few weeks earlier, Deborah told me, Day’s new wife, Margaret, came home from a doctor’s appointment screaming about something she’d seen in the basement at Hopkins. “She hit some wrong button on the elevator and it took her all the way down in the basement where it was dark,” Deborah told me. “The door opened up and she looked straight ahead and saw all these cages. She started yellin, ‘Dale, you not gonna believe it, but them cages was filled with man-sized rabbits!’”

Deborah laughed as she told me the story. “I didn’t believe it. I was like, ‘Man-sized rabbits?! You crazy!’ I mean, who ever heard of a man-sized rabbit? But Margaret usually honest with me, so I know she saw something got her all scared. I guess anything possible.”

Then, as though she was saying something as everyday as It’s supposed to rain tomorrow, she said, “Scientists do all kinds of experiments and you never know what they doin. I still wonder how many people they got in London walkin around look just like my mother.”

“What?” I said. “Why would there be women in London who look like your mother?”

“They did that cloning on my mother over there,” she said, surprised I hadn’t come across that fact in my research. “A reporter came here from England talking about they cloned a sheep. Now they got stuff about cloning my mother all over.” She held up an article from The Independent in London and pointed at a circled paragraph: “Henrietta Lacks’s cells thrived. In weight, they now far surpassed the person of their origin and there would prob ably be more than sufficient to populate a village of Henriettas.” The writer joked that Henrietta should have put ten dollars in the bank in 1951, because if she had, her clones would be rich now.

Deborah raised her eyebrows at me like, See? I told you!

I started saying it was just Henrietta’s cells scientists had cloned, not Henrietta herself. But Deborah waved her hand in my face, shushing me like I was talking nonsense, then fished a videocassette from the pile and held it up for me to see. It said Jurassic Park on the spine.

“I saw this movie a bunch of times,” she said. “They talking about the genes and taking them from cells to bring that dinosaur back to life and I’m like, Oh Lord, I got a paper on how they were doin that with my mother’s cells too!” She held up another videocassette, this one a made-for-TV movie called The Clone. In it, an infertility doctor secretly harvests extra embryos from one of his patients and uses them to create a colony of clones of the woman’s son, who died young in an accident.

“That doctor took cells from that woman and made them into little boys look just like her child,” Deborah told me. “That poor woman didn’t even know about all the clones until she saw one walk out of a store. I don’t know what I’d do if I saw one of my mother clones walkin around somewhere.”

Deborah realized these movies were fiction, but for her the line between sci-fi and reality had blurred years earlier, when her father got that first call saying Henrietta’s cells were still alive. Deborah knew her mother’s cells had grown like the Blob until there were so many of them they could wrap around the Earth several times. It sounded crazy, but it was true

“You just never know,” Deborah said, fishing two more articles from the pile and handing them to me. One was called HUMAN, PLANT CELLS FUSED: WALKING CARROTS NEXT? The other was MAN-ANIMAL CELLS BRED IN LAB. Both were about her mother’s cells, and neither was science fiction.

“I don’t know what they did,” Deborah said, “but it all sound like Jurassic Park to me.”

For the next three days, Deborah came to my B&B room each morning, sat on the bed, and unloaded her mind. When we needed a change of scenery, we rode water taxis and walked along the Baltimore Harbor. We ate crabs and burgers and fries and drove the city streets. We visited the houses she’d lived in as a child, most now boarded up with CONDEMNED signs out front. We spent day and night together as I soaked up as much of her story as I could, constantly worried she’d change her mind and stop talking to me. But in reality, it seemed now that Deborah had started talking, she might never stop again.

Deborah’s was a world without silence. She yelled, punctuated most sentences with a raspy, high-pitched laugh, and maintained a running commentary on everything around her: “Look at the size of those trees!” “Isn’t that car a nice green?” “Oh my god, I’ve never seen such pretty flowers.” She walked down the street talking to tourists, sanitation workers, and homeless people, waving her cane at every person she passed, saying, “Hi there, how y’all doin?” again and again.

Deborah was full of oddly charming quirks. She carried a bottle of Lysol in her car that she would often spray at random, only half-joking. She sprayed directly in front of my nose several times when I sneezed, but mostly she sprayed it out the window when we stopped somewhere that looked particularly unsanitary, which happened often. She also gestured with her cane as she spoke, often tapping my shoulder with it to get my attention, or smacking it against my leg to emphasize a point.

One of the first times she hit me with her cane, we were sitting in my room. She’d just handed me a copy of Medical Genetics, by Victor McKusick, and said, “I met this man cause he wanted some blood from me for some cancer tests.”

I told her he’d taken the blood for research on Henrietta’s cells, not to test her and her brothers for cancer. That’s when she smacked me on the leg with her cane.

“Dang!” she yelled. “Now you tell me! When I started asking him questions about them tests and my mother’s cells, he just handed me a copy of this book, patted me on my back, and send me home.” She reached over, flipped the book open, and pointed. “He autographed it for me,” she said, rolling her eyes. “Would have been nice if he’d told me what the damn thing said too.”

Deborah and I sprawled across the bed for hours each day, reading her files and talking about her life. Then, toward the end of the third day, I noticed a thick manila folder on my pillow.

“Are those your mother’s medical records?” I asked, reaching for it.

“No!” Deborah screamed, wild-eyed, leaping up and diving onto the folder like it was a fumbled football, hugging it to her chest, curling her body around it.

I sat stunned, hand still reaching toward the pillow where the envelope had been, stammering, “I… I mean … I wasn’t …”

“That’s right you wasn’t!” Deborah snapped. “What were you gonna do to my mother medical records?!”

“I thought you put them there for me … I’m sorry … I don’t need to read them now. … It’s fine.”

“We ain’t ready for that!” Deborah snapped, her eyes wide and panicked. She grabbed her bag, stuffed all her things back inside it, then ran for the door.

I was stunned. The woman I’d been lying next to for days—laughing, elbowing, consoling—was now running from me like I was out to get her.

“Deborah!” I called after her. “I’m not trying to do anything bad. I just want to learn your mother’s story, same as you.”

She whipped around, her eyes still panicked, “I don’t know who to trust,” she hissed, then ran out the door, slamming it behind her.

The Immortal life of Henrietta Lacks The Immortal life of Henrietta Lacks

30 – Zakariyya (2000)

The next day, Deborah called my room from the front desk as if nothing had happened. “Come on downstairs,” she said. “It’s time you went and talked to Zakariyya. He been askin about you.”

I was not excited to meet Zakariyya. I’d heard several times that of all the Lackses, he was by far the angriest about what happened to his mother, and that he was looking for any revenge he could get. I hoped to see the age of thirty, and it seemed like being the first white person to show up at Zakariyya’s apartment asking questions about his mother might interfere with that.

Outside, as I followed Deborah to her car, she said, “Things never went quite right with Zakariyya after he got out of jail. But don’t worry. I’m pretty sure he’s ready to talk about our mother again.”

“You’re pretty sure?” I said.

“Well, I used to make copies of information about our mother and give it to him, but he got enough to where one day he cuss me out. He ran at me screamin, ‘I don’t wanna hear no more stuff about my mother and that damn doctor who done raped her cells!’ We haven’t really talked about it since.” She shrugged. “But he says he’s okay with you askin questions today though. We just got to catch him before he start drinkin.”

When we got to Deborah’s car, her two grandsons—Davon and Alfred, who were just shy of their eighth and fourth birthdays—sat in the backseat screaming at each other. “Them are my two little hearts,” Deborah said. They were strikingly beautiful children, with huge smiles and wide, dark eyes. Alfred sat in the back wearing two pairs of jet-black plastic sunglasses, one on top of the other, each about three times too big for his face.

“Miss Rebecca!” he yelled as we climbed into the car. “Miss Rebecca!” I turned around. “Yes?”

“I love you.” “Thank you.”

I turned back to Deborah, who was telling me how I shouldn’t say something or other around Zakariyya.

“Miss Rebecca! Miss Rebecca!” Alfred yelled again, slowly pushing both pairs of sunglasses down to the tip of his nose and wiggling his eyebrows at me.

“You’re mine,” he said.

“Oh knock that off!” Deborah yelled, swatting at him from the front seat. “Oh Lord, he just like his father, Mr. Ladies’ Man.” She shook her head. “My son always out rippin and runnin them streets, drinkin and druggin just like his father. I worry he gonna get himself in trouble—I don’t know what gonna happen to Little Alfred then. I’m afraid he learnin too much already.” Little Alfred was always beating up on Davon, even though Davon was older and bigger, but Davon never hit back without Deborah’s permission.

When I asked the boys to tell me about their uncle Zakariyya, Davon puffed up his chest, sucked in his nose so his nostrils vanished, then yelled “GET THE HELL OUT OF HERE!” his voice deeper than I thought possible for an eight-year-old. He and Alfred burst out laughing and collapsed into a pile in the backseat. “Like one of them wrestlers on TV!” Davon said, gasping for breath.

Alfred screamed and bounced in his seat. “WWF!! WWF!!”

Deborah looked at me and smiled. “Don’t worry,” she said. “I know how to handle him. I just keep remindin him to separate: Rebecca’s not one of them researchers, she’s not working for John Hopkin. She workin for herself. He kept sayin, ‘I’m all right, I won’t do nothing crazy’ But if I detect anything wrong we’ll leave right back outta there.”

We drove for a few blocks in silence, passing boarded-up storefronts, rows of fast-food restaurants and liquor stores. At one point, Davon pointed to his school and told us about the metal detectors and how they locked all the students inside during classes. Eventually Deborah leaned over to me and whispered, “Younger brother always felt like he was cheated out of life, because when my mother had him, four months later, that’s when the sickness broke down on her. Brother’s got a lot of anger. You just got to make sure you say his name right.” I’d been saying it wrong, she told me, and I couldn’t do that in front of him. He pronounced

it Zuh-CAR-ee-uh, not Zack-a-RYE-uh. Bobbette and Sonny had a hard time remembering that, so they called him Abdul, one of his middle names. But only when he wasn’t around.

“Whatever you do, don’t call him Joe,” Deborah told me. “A friend of Lawrence’s called him Joe one Thanksgiving and Zakariyya knocked that man out right into his mashed potatoes.”

Zakariyya was about to turn fifty and lived in an assisted-living facility that Deborah had helped him get into when he was on the streets. He qualified because of his deafness and the fact that he was nearly blind without glasses. He hadn’t lived there long, but was already on probationary status for being loud and aggressive with the other residents.

As Deborah and the boys and I walked from the car toward the front door, Deborah cleared her throat loudly and nodded toward a hulk of a man hobbling from the building in khaki pants. He was five feet eight inches tall and weighed just under four hundred pounds. He wore bright blue orthopedic sandals, a faded Bob Marley T-shirt, and a white baseball hat that said, HAM, BACON, SAUSAGE.

“Hey Zakariyya!” Deborah yelled, waving her hands above her head.

Zakariyya stopped walking and looked at us. His black hair was buzzed close to his head, his face smooth and youthful like Deborah’s except for his brow, which was creased from decades of scowling. Beneath thick plastic glasses, his eyes were swollen, bloodshot, and surrounded by deep dark circles. One hand leaned on a metal cane identical to Deborah’s, the other held a large paper plate with at least a pint of ice cream on it, probably more. Under his arm, he’d folded several newspaper ad sections.

“You told me you’d be here in an hour,” he snapped.

“Uh … yeah … sorry,” Deborah mumbled. “There wasn’t any traffic.”

“I’m not ready yet,” he said, then grabbed the bundle of newspaper from under his arm and smacked Davon hard across the face with it. “Why’d you bring them?” he yelled. “You know I don’t like no kids around.”

Deborah grabbed Davon’s head and pressed it to her side, rubbing his cheek and stammering that their parents had to work and no one else could take them, but she swore they’d be quiet, wouldn’t they? Zakariyya turned and walked to a bench in front of his building without saying another word.

Deborah tapped me on the shoulder and pointed to another bench on the opposite side of the building’s entrance, a good fifteen feet from Zakariyya. She whispered, “Sit over here with me,” then yelled, “Come on boys, why don’t you show Miss Rebecca how fast you can run!”

Alfred and Davon raced around the concrete cul-de-sac in front of Zakariyya’s building, yelling, “Look at me! Look at me! Take my picture!”

Zakariyya sat eating his ice cream and reading his ads like we didn’t exist. Deborah glanced at him every few seconds, then back to me, then the grandkids, then Zakariyya again. At one point she crossed her eyes and stuck her tongue out at Zakariyya, but he didn’t see.

Finally, Zakariyya spoke.

“You got the magazine?” he asked, staring into the street.

Zakariyya had told Deborah he wanted to read the Johns Hopkins Magazine story I wrote about their mother before he’d talk to me, and he wanted me sitting next to him while he read it. Deborah nudged me toward his bench, then jumped up saying she and the boys would wait upstairs for us, because it was better if we talked outside in the nice weather rather than being cooped up alone inside. It was in the nineties with dizzying humidity, but neither of us wanted me going in that apartment alone with him.

“I’ll be watching from that window up there,” Deborah whispered. She pointed several floors up. “If anything funny starts, just wave and I’ll come down.”

As Deborah and the boys walked inside the building, I sat beside Zakariyya and started telling him why I was there. Without looking at me or saying a word, he took the magazine from my hand and began reading. My heart pounded each time he sighed, which was often. “Damn!” he yelled suddenly, pointing at a photo caption that said Sonny was Henrietta’s youngest son. “He ain’t youngest! I am!” He slammed the magazine down and glared at it as I

said of course I knew he was the youngest, and the magazine did the captions, not me.

“I think my birth was a miracle,” he said. “I believe that my mother waited to go to the doctor till after I was born because she wanted to have me. A child born like that, to a mother full of tumors and sick as she was, and I ain’t suffered no kinda physical harm from it? It’s possible all this is God’s handiwork.”

He looked up at me for the first time since I’d arrived, then reached up and turned a knob on his hearing aid.

“I switched it off so I didn’t have to listen to them fool children,” he said, adjusting the volume until it stopped squealing. “I believe what them doctors did was wrong. They lied to us for twenty-five years, kept them cells from us, then they gonna say them things donated by our mother. Them cells was stolen! Those fools come take blood from us sayin they need to run tests and not tell us that all these years they done profitized off of her? That’s like hanging a sign on our backs saying, ‘I’m a sucker, kick me in my butt.’ People don’t know we just as po’ as po’. They probably think by what our mother cells had did that we well off. I hope George Grey burn in hell. If he wasn’t dead already, I’d take a black pitchfork and stick it up his ass.”

Without thinking, almost as a nervous reflex I said, “It’s George Gey, not Grey.”

He snapped back, “Who cares what his name is? He always tellin people my mother name Helen Lane!” Zakariyya stood, towering over me, yelling, “What he did was wrong! Dead wrong. You leave that stuff up to God. People say maybe them takin her cells and makin them live forever to create medicines was what God wanted. But I don’t think so. If He wants to provide a disease cure, He’d provide a cure of his own, it’s not for man to tamper with. And you don’t lie and clone people behind their backs. That’s wrong—it’s one of the most violating parts of this whole thing. It’s like me walking in your bathroom while you in there with your pants down. It’s the highest degree of disrespect. That’s why I say I hope he burn in hell. If he were here right now, I’d kill him dead.”

Suddenly, Deborah appeared beside me with a glass of water. “Just thought you might be thirsty,” she said, her voice stern like What the hell is going on here, because she’d seen Zakariyya standing over me yelling.

“Everything okay out here?” she asked. “Y’all still reportin?”

“Yeah,” Zakariyya said. But Deborah put her hand on his shoulder, saying maybe it was time we all went inside.

As we walked toward the front door of his building, Zakariyya turned to me. “Them doctors say her cells is so important and did all this and that to help people. But it didn’t do no good for her, and it don’t do no good for us. If me and my sister need something, we can’t even go see a doctor cause we can’t afford it. Only people that can get any good from my mother cells is the people that got money, and whoever sellin them cells—they get rich off our mother and we got nothing.” He shook his head. “All those damn people didn’t deserve her help as far as I’m concerned.”

Zakariyya’s apartment was a small studio with a sliver of a kitchen where Deborah and the boys had been watching us from a window. Zakariyya’s belongings could have fit into the back of a pickup truck: a small Formica table, two wooden chairs, a full-sized mattress with no frame, a clear plastic bed skirt, and a set of navy sheets. No blankets, no pillows. Across from his bed sat a small television with a VCR balanced on top.

Zakariyya’s walls were bare except for a row of photocopied pictures. The one of Henrietta with her hands on her hips hung next to the only other known picture of her: in it, she stands with Day in a studio sometime in the forties, their backs board-straight, eyes wide and staring ahead, mouths frozen in awkward non-smiles. Someone had retouched the photo and painted Henrietta’s face an unnatural yellow. Beside it was a breathtaking picture of his sister Elsie, standing in front of a white porch railing next to a basket of dried flowers. She’s about six years old, in a plaid jumper dress, white T-shirt, bobby socks and shoes, her hair loose from its braids, right hand gripping something against her chest. Her mouth hangs slightly open, brow creased and worried, both eyes looking to the far right of the frame, where Deborah imagines her mother was standing.

Zakariyya pointed to several diplomas hanging near the photos, for welding, refrigeration, diesel. “I got so many damn diplomas,” he said, “but jobs pass me by because of my criminal record and everything, so I still got all kind of troubles.” Zakariyya had been in and out of trouble with the law since he got out of jail, with various charges for assault and drunk and disorderly conduct.

“I think them cells is why I’m so mean,” he said. “I had to start fightin before I was even a person. That’s the only way I figure I kept them cancer cells from growin all over me while I was inside my mother. I started fightin when I was just a baby in her womb, and I never known nothin different.”

Deborah thinks it was more than that. “That evil woman Ethel taught him hate,” she said. “Beat every drop of it into his little body—put the hate of a murderer into him.”

Zakariyya snorted when he heard Ethel’s name. “Livin with that abusive crazy woman was worse than livin in prison!” he yelled, his eyes narrowing to slits. “It’s hard to talk about what she did to me. When I get to thinkin about them stories, make me want to kill her, and my father. Cause of him I don’t know where my mother buried. When that fool die, I don’t wanna know where he buried neither. He need to get to a hospital? Let him catch a cab! Same with the rest of the so-called family who buried her. I don’t never wanna see them niggers no more.”

Deborah cringed. “See,” she said, looking at me. “Everybody else never let him talk because he speak things the way he want to. I say let him talk, even if we be upset by what he’s sayin. He’s mad, gotta get it out, otherwise he gonna keep on keeping it, and it’s gonna blow him right on up.”

“I’m sorry,” Zakariyya said. “Maybe her cells have done good for some people, but I woulda rather had my mother. If she hadn’t been sacrificed, I mighta growed up to be a lot better person than I am now.”

Deborah stood from the bed where she’d been sitting with her grandsons’ heads on her lap. She walked over to Zakariyya and put her arm around his waist. “Come on walk us out to the car,” she said. “I got something I want to give you.”

Outside, Deborah threw open the back of her jeep and rummaged through blankets, clothes, and papers until she turned around holding the photo of Henrietta’s chromosomes that Christoph Lengauer had given her. She smoothed her fingers across the glass, then handed it to Zakariyya.

“These supposed to be her cells?” he asked.

Deborah nodded. “See where it stained bright colors? That’s where all her DNA at.” Zakariyya raised the picture to eye level and stared in silence. Deborah rubbed her hand

on his back and whispered, “I think if anybody deserve that, it’s you, Zakariyya.”

Zakariyya turned the picture to see it from every angle. “You want me to have this?” he said finally.

“Yeah, like you to have that, put it on your wall,” Deborah said.

Zakariyya’s eyes filled with tears. For a moment the dark circles seemed to vanish, and his body relaxed.

“Yeah,” he said, in a soft voice unlike anything we’d heard that day. He put his arm on Deborah’s shoulder. “Hey, thanks.”

Deborah wrapped her arms as far around his waist as she could reach, and squeezed. “The doctor who gave me that said he been working with our mother for his whole career and he never knew anything about where they came from. He said he was sorry.”

Zakariyya looked at me. “What’s his name?”

I told him, then said, “He wants to meet you and show you the cells.”

Zakariyya nodded, his arm still around Deborah’s shoulder. “Okay,” he said. “That sounds good. Let’s go for it.” Then he walked slowly back to his building, holding the picture in front of him at eye level, seeing nothing ahead but the DNA in his mother’s cells.

31 – Hela, Goddess of Death (2000 – 2001)

The day after I got home from our marathon visit, a man Deborah didn’t know called her asking if she’d ride on a HeLa float in a black rodeo. He told her to be careful of people looking to find out where Henrietta’s grave was because they might want to steal her bones, since her body was so valuable to science. Deborah told the man she’d been talking to me for a book, and he warned her not to talk to white people about her story. She panicked and called her brother Lawrence, who told her the man was right, so she left me a message saying she couldn’t talk to me anymore. But by the time I got the message and called her back, she’d changed her mind.

“Everybody always yellin, ‘Racism! Racism! That white man stole that black woman’s cells! That white man killed that black woman!’ That’s crazy talk,” she told me. “We all black and white and everything else—this isn’t a race thing. There’s two sides to the story, and that’s what we want to bring out. Nothing about my mother is truth if it’s about wantin to fry the researchers. It’s not about punish the doctors or slander the hospital. I don’t want that.”

Deborah and I would go on like this for a full year. Each time I visited, we’d walk the Baltimore Harbor, ride boats, read science books together, and talk about her mother’s cells. We took Davon and Alfred to the Maryland Science Center, where they saw a twenty-foot wall covered floor to ceiling with a picture of cells stained neon green and magnified under a microscope. Davon grabbed my hand and pulled me toward the wall of cells, yelling, “Miss Rebecca! Miss Rebecca! Is that Great-Grandma Henrietta?” People nearby stared as I said, “Actually, they might be,” and Davon pranced around singing, “Grandma Henrietta famous! Grandma Henrietta famous!”

At one point, as Deborah and I walked along the cobblestone streets of Fell’s Point late at night, she turned to me and without prompting said, “I’ll bring them medical records out on my terms and when I think is right.” She told me that the night she tackled her mother’s medical records and ran home, she’d thought I was trying to steal them. She said, “I just need somebody I can trust, somebody that will talk to me and don’t keep me in the dark.” She asked me to promise I wouldn’t hide anything from her. I promised I wouldn’t.

Between trips, Deborah and I would spend hours each week talking over the phone. Occasionally someone would convince her she couldn’t trust a white person to tell her mother’s story, and she’d call me in a panic, demanding to know whether Hopkins was paying me to get information from her like people said. Other times she’d get suspicious about money, like when a genetics textbook publisher called offering her $300 for permission to print the photo of Henrietta. When Deborah said they had to give her $25,000 and they said no, she called me demanding to know who was paying me to write my book, and how much I was going to give her.

Each time I told her the same thing: I hadn’t sold the book yet, so at that point I was paying for my research with student loans and credit cards. And regardless, I couldn’t pay her for her story. Instead, I said, if the book ever got published, I would set up a scholarship fund for descendants of Henrietta Lacks. On Deborah’s good days, she was excited about the idea. “Education is everything,” she’d say. “If I’d had more of it, maybe this whole thing about my mother wouldn’t have been so hard. That’s why I’m always tellin Davon, ‘Keep on studyin, learnin all you can.’” But on bad days, she’d think I was lying and cut me off again.

Those moments never lasted long, and they always ended with Deborah asking me to promise yet again that I’d never hide anything from her. Eventually I told her she could even come with me when I did some of my research if she wanted, and she said, “I want to go to centers and colleges and all that. Learning places. And I want to get the medical record and autopsy report on my sister.”

I began sending her stacks of information I uncovered about her mother—scientific journal articles, photos of the cells, even an occasional novel, poem, or short story based on HeLa. In one, a mad scientist used HeLa as a biological weapon to spread rabies; another featured yellow house paint made of HeLa cells that could talk. I sent Deborah news of exhibits where several artists projected Henrietta’s cells on walls, and one displayed a heart-shaped culture she’d grown by fusing her own cells with HeLa. With each packet, I sent notes explaining what each thing meant, clearly labeling what was fiction and what wasn’t, and warning her about anything that might upset her.

Each time Deborah got a package, she’d call to talk about what she read, and gradually her panicked calls grew less frequent. Soon, after she realized I was the same age as her daughter, she started calling me “Boo,” and insisted I buy a cell phone because she worried about me driving the interstates alone. Each time I talked to her brothers she’d yell at them, only half joking, saying, “Don’t you try to take my reporter! Go get your own!”

When we met for our first trip, Deborah got out of her car wearing a black ankle-length skirt, black sandals with heels, and a black shirt covered with an open black cardigan. After we hugged, she said, “I got on my reporter clothes!” She pointed at my black button-up shirt, black pants, and black boots and said, “You always wear black, so I figured I should dress like you so I blend in.”

For each trip, Deborah filled her jeep floor to ceiling with every kind of shoes and clothes she might need (“You never know when the weather gonna change”). She brought pillows and blankets in case we got stranded somewhere, an oscillating fan in case she got hot, plus all her haircutting and manicure equipment from beauty school, boxes of videotapes, music CDs, office supplies, and every document she had related to Henrietta. We always took two cars because Deborah didn’t trust me enough to ride with me yet. I’d follow behind, watching her black driving cap bop up and down to her music. Sometimes, when we rounded curves or stopped at lights, I could hear her belting out, “Born to Be Wild,” or her favorite William Bell song, “I Forgot to Be Your Lover.”

Eventually, Deborah let me come to her house. It was dark, with thick closed curtains, black couches, dim lights, and deep brown wood-paneled walls lined with religious scenes on blacklight posters. We spent all our time in her office, where she slept most nights instead of the bedroom she shared with Pullum—they fought a lot, she told me, and needed some peace.

Her room was about six feet wide, with a twin bed against one wall and a small desk directly across from it, nearly touching the bed. On top of the desk, stacked beneath reams of paper, boxes of envelopes, letters, and bills was her mother’s Bible, its pages warped, cracking with age, and spotted with mold, her mother’s and sister’s hair still tucked inside.

Deborah’s walls were covered floor to ceiling with colorful photos of bears, horses, dogs, and cats she’d torn from calendars, as well as nearly a dozen bright felt squares she and Davon had made by hand. One was yellow with THANK YOU JESUS FOR LOVING ME written in big letters; another said PROPHECIES FULFILLED and was covered with coins made of tinfoil. A shelf at the head of her bed was crammed with videotapes of infomercials: for a Jacuzzi, an RV, a trip to Disneyland. Nearly every night Deborah would say, “Hey Davon, you want to go on vacation?” When he nodded yes she’d ask, “Where you want to go, Disneyland, spa, or RV trip?” They’d watched each tape many times.

At the end of one visit, I showed Deborah how to get online with an old computer someone had given her years earlier, then taught her to use Google. Soon she started taking Ambien—a narcotic sleep aid—and sitting up nights in a drugged haze, listening to William Bell on headphones, Googling “Henrietta” and “HeLa.”

Davon referred to Deborah’s Ambien as “dummy medicine,” because it made her wander the house in the middle of the night like a zombie, talking nonsense and trying to cook breakfast by chopping cereal with a butcher knife. When he stayed with her, Davon often woke up in the middle of the night to find Deborah sleeping at her computer, head down and hands on the keyboard. He’d just push her off the chair into bed and tuck her in. When Davon wasn’t there, Deborah often woke up with her face on the desk, surrounded by a mountain of pages that spilled from her printer onto the floor: scientific articles, patent applications, random newspaper articles and blog posts, including many that had no connection to her mother but used the words Henrietta or lacks or Hela.

And, surprisingly, there were many of the latter. Hela is the native name for the country of Sri Lanka, where activists carry signs demanding “Justice for the Hela Nation.” It’s the name of a defunct German tractor company and an award-winning shitzu dog; it’s a seaside resort in Poland, an advertising firm in Switzerland, a Danish boat where people gather to drink vodka and watch films, and a Marvel comic book character who appears in several online games: a seven-foot-tall, half-black, half-white goddess who’s part dead and part alive, with “immeasurable” intelligence, “superhuman” strength, “godlike” stamina and durability, and five hundred pounds of solid muscle. She’s responsible for plagues, sickness, and catastrophes; she’s immune to fire, radiation, toxins, corrosives, disease, and aging. She can also levitate and control people’s minds.

When Deborah found pages describing Hela the Marvel character, she thought they were describing her mother, since each of Hela’s traits in some way matched what Deborah had heard about her mother’s cells. But it turned out the sci-fi Hela was inspired by the ancient Norse goddess of death, who lives trapped in a land between hell and the living. Deborah figured that goddess was based on her mother too.

One day, around three o’clock in the morning, my phone rang as I slept, feverish with flu. Deborah yelled on the other end, “I told you London cloned my mother!” Her voice was slow and slurred from Ambien.

She’d Googled HeLa, clone, London, and DNA, and gotten thousands of hits with summaries like this, from an online chat-room discussion about HeLa cells: “Each contains a genetic blueprint for constructing Henrietta Lacks…. Can we clone her?” Her mother’s name showed up under headlines like CLONING and HUMAN FARMING, and she thought those thousands of hits were proof that scientists had cloned thousands of Henriettas.

“They didn’t clone her,” I said. “They just made copies of her cells. I promise.”

“Thanks Boo, I’m sorry I woke you,” she cooed. “But if they cloning her cells, does that mean someday they could clone my mother?”

“No,” I said. “Good night.”

After several weeks of finding Deborah unconscious, with her phone in her hand, or face on the keyboard, Davon told his mother he needed to stay at his grandmother’s house all the time, to take care of her after she took her medicine.

Deborah took an average of fourteen pills a day, which cost her about $150 each month after her husband’s insurance, plus Medicaid and Medicare. “I think it’s eleven prescriptions,” she told me once, “maybe twelve. I can’t keep track, they change all the time.” One for acid reflux went from $8 one month to $135 the next, so she stopped taking it, and at one point her husband’s insurance canceled her prescription coverage, so she started cutting her pills in half to make them last. When the Ambien ran out, she stopped sleeping until she got more. She told me her doctors started prescribing the drugs in 1997 after what she referred to as “the Gold Digger Situation,” which she refused to tell me about. That was when she’d applied

for Social Security disability, she said, which she only got after several court appearances. “Social Security people said everything was all in my head,” she told me. “They ended up

sending me to about five psychiatrist and a bunch of doctors. They say I’m paranoia, I’m schizophrenia, I’m nervous. I got anxiety, depression, degenerating kneecaps, bursitis, bulged discs in my back, diabetes, osteoporosis, high blood pressure, cholesterol. I don’t know all of what’s wrong with me by name,” she said. “I don’t know if anyone do. All I know is, when I get in that mood and I get frightened, I hide.”

That’s what happened the first time I called, she said. “I was all excited, sayin I want a book written about my mother. Then things just started going in my head and I got scared. “I know my life could be better and I wish it was,” she told me. “When people hear about

my mother cells they always say, ‘Oh y’all could be rich! Y’all gotta sue John Hopkin, y’all gotta do this and that.’ But I don’t want that.” She laughed. “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 prob ably helped make.”

Eventually, as Deborah grew comfortable with the Internet, she started using it for more than terrifying herself in the middle of the night. She made lists of questions for me and printed articles about research done on people without their knowledge or consent—from a vaccine trial in Uganda to the testing of drugs on U.S. troops. She started organizing information into carefully labeled folders: one about cells, another about cancer, another full of definitions of legal terms like statute of limitations and patient confidentiality. At one point she stumbled on an article called “What’s Left of Henrietta Lacks?” that infuriated her by saying Henrietta had probably gotten HPV because she “slept around.”

“Them people don’t know nothing about science,” she told me. “Just havin HPV don’t mean my mother was loose. Most people got it—I read about it on the Internet.”

Then, in April 2001, nearly a year after we first met, Deborah called to tell me that “the president of a cancer club” had called wanting to put her on stage at an event honoring her mother. She was worried, she said, and she wanted me to find out if he was legit.

He turned out to be Franklin Salisbury Jr., president of the National Foundation for Cancer Research. He’d decided to hold the foundation’s 2001 conference in Henrietta’s honor. On September 13, seventy top cancer researchers from around the world would gather to present their research, he said, and hundreds of people would attend, including the mayor of Washington, D.C., and the surgeon general. He hoped Deborah would speak there, and accept a plaque in her mother’s honor.

“I understand that the family feels very abused,” he told me. “We can’t give them money, but I’m hoping this conference will set the historic record straight and help make them feel better, even if we are fifty years late.”

When I explained this to Deborah, she was ecstatic. It would be just like Pattillo’s conference in Atlanta, she said, only bigger. She immediately started planning what she’d wear and asking questions about what the researchers would be talking about. And she worried again about whether she’d be safe on stage, or whether there’d be a sniper waiting for her.

“What if they think I’m going to cause trouble about them taking the cells or something?”

“I don’t think you need to worry about that,” I said. “The scientists are excited to meet you.” Besides, I told her, it was going to be in a federal building with high security.

“Okay,” she said. “But first I want to go see my mother cells, so I know what everybody’s talkin about at the conference.”

When we hung up I went to call Christoph Lengauer, the cancer researcher who’d given Deborah the painted chromosome picture, but before I could dig out his number, my phone rang again. It was Deborah, crying. I thought she was panicking, changing her mind about seeing the cells. But instead she wailed, “Oh my baby! Lord help him, they got him with fingerprints on a pizza box.”

Her son Alfred and a friend had been on a crime spree, robbing at least five liquor stores at gunpoint. Security cameras caught Alfred on tape yelling at a store clerk and waving a bottle of Wild Irish Rose above his head. He’d stolen a twelve-ounce bottle of beer, one bottle of Wild Irish Rose, two packs of Newport cigarettes, and about a hundred dollars in cash. The police arrested him in front of his house and threw him in the car while his son, Little Alfred, watched from the lawn.

“I still want to go see them cells,” Deborah said, sobbing. “I ain’t gonna let this stop me from learning about my mother and my sister.”

DMU Timestamp: February 27, 2021 01:26

General Document Comments 0