[5 of 5] The Immortal Life of Henrietta Lacks, Chapter 32 to Afterword, by Rebecca Skloot (2010)

Author: Rebecca Skloot

“Chapter 32 to Afterword.” 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.

32 – “All That’s My Mother” (2001)

By the time Deborah was ready to see her mother’s cells for the first time, Day couldn’t come. He’d said many times that he wanted to see his wife’s cells before he died, but he was eighty-five, in and out of the hospital with heart and blood pressure problems, and he’d just lost a leg to diabetes. Sonny had to work, and Lawrence said he wanted to talk to a lawyer about suing Hopkins instead of seeing the cells, which he referred to as “a multibillion-dollar corporation.”

So on May 11, 2001, Deborah, Zakariyya, and I agreed to meet at the Hopkins Jesus statue to go see Henrietta’s cells. Earlier that morning, Deborah had warned me that Lawrence was convinced Hopkins was paying me to gather information about the family. He’d already called her several times that day saying he was coming to get the materials she’d collected related to her mother. So Deborah locked them in her office, took the key with her, and called me saying, “Don’t tell him where you are or go see him without me.”

When I arrived at the Jesus, it stood just as it had when Henrietta visited it some fifty years earlier, looming more than ten feet tall beneath a tiered dome, pupil-less marble eyes staring straight ahead, arms outstretched and draped in stone robes. At Jesus’s feet, people had thrown piles of change, wilted daisies, and two roses—one fresh with thorns, the other cloth with plastic dewdrops. His body was gray-brown and dingy, except for his right foot, which glowed a polished white from decades of hands rubbing it for luck.

Deborah and Zakariyya weren’t there, so I leaned against a far wall, watching a doctor in green scrubs kneel before the statue and pray as others brushed its toe on their way into the hospital without looking or breaking stride. Several people stopped to write prayers in over-sized books resting on wooden pedestals near the statue: “Dear Heavenly Father: If it is your will let me speak to Eddie this one last time.” “Please help my sons conquer their addictions.” “I ask you to provide my husband and I with jobs.” “Lord thank you for giving me another chance.”

I walked to the statue, my heels echoing on marble, and rested my hand on its big toe—the closest I’d ever come to praying. Suddenly Deborah was beside me, whispering, “I hope He’s got our back on this one.” Her voice was utterly calm, her usual nervous laugh gone.

I told her I did too.

Deborah closed her eyes and began to pray. Then Zakariyya appeared behind us and let out a deep laugh.

“He can’t do nothin to help you now!” Zakariyya yelled. He’d gained weight since I’d seen him last, and his heavy gray wool pants and thick blue down coat made him look even bigger. The black plastic arms of his glasses were so tight they’d etched deep grooves into his head, but he couldn’t afford new ones.

He looked at me and said, “That sister of mine, she crazy for not wantin money from them cells.”

Deborah rolled her eyes and hit his leg with her cane. “Be good or you can’t come see the cells,” she said.

Zakariyya stopped laughing and followed as we headed toward Christoph Lengauer’s lab. Minutes later, Christoph walked toward us through the lobby of his building, smiling, hand outstretched. He was in his mid-thirties, with perfectly worn denim jeans, a blue plaid shirt, and shaggy light brown hair. He shook my hand and Deborah’s, then reached for Zakariyya’s. But Zakariyya didn’t move.

“Okay!” Christoph said, looking at Deborah. “It must be pretty hard for you to come into a lab at Hopkins after what you’ve been through. I’m really glad to see you here.” He spoke with an Austrian accent, which made Deborah wiggle her eyebrows at me when he turned to press the elevator call button. “I thought we’d start in the freezer room so I can show you how we store your mother’s cells, then we can go look at them alive under a microscope.”

“That’s wonderful,” Deborah said, as though he’d just said something entirely ordinary. Inside the elevator, she pressed against Zakariyya, one hand leaning on her cane, the other gripping her tattered dictionary. When the doors opened, we followed Christoph single file through a long narrow hall, its walls and ceiling vibrating with a deep whirring sound that grew louder as we walked. “That’s the ventilation system,” Christoph yelled. “It sucks all the chemicals and cells outside so we don’t have to breathe them in.”

He threw open the door to his lab with a sweeping ta-da motion and waved us inside. “This is where we keep all the cells,” he yelled over a deafening mechanical hum that made Deborah’s and Zakariyya’s hearing aids squeal. Zakariyya’s hand shot up and tore his from his ear. Deborah adjusted the volume on hers, then walked past Christoph into a room filled wall-to-wall with white freezers stacked one on top of the other, rumbling like a sea of washing machines in an industrial laundromat. She shot me a wide-eyed, terrified look.

Christoph pulled the handle of a white floor-to-ceiling freezer, and it opened with a hiss, releasing a cloud of steam into the room. Deborah screamed and jumped behind Zakariyya, who stood expressionless, hands in his pockets.

“Don’t worry,” Christoph yelled, “it’s not dangerous, it’s just cold. They’re not minus twenty Celsius like your freezers at home, they’re minus eighty. That’s why when I open them smoke comes out.” He motioned for Deborah to come closer.

“It’s all full of her cells,” he said.

Deborah loosened her grip on Zakariyya and inched forward until the icy breeze hit her face, and she stood staring at thousands of inch-tall plastic vials filled with red liquid.

“Oh God,” she gasped. “I can’t believe all that’s my mother.” Zakariyya just stared in silence.

Christoph reached into the freezer, took out a vial, and pointed to the letters H-e-L-a written on its side. “There are millions and millions of her cells in there,” he said. “Maybe billions. You can keep them here forever. Fifty years, a hundred years, even more—then you just thaw them out and they grow.”

He rocked the vial of HeLa cells back and forth in his hand as he started talking about how careful you have to be when you handle them. “We have an extra room just for the cells,” he said. “That’s important. Because if you contaminate them with anything, you can’t really use them anymore. And you don’t want HeLa cells to contaminate other cultures in a lab.”

“That’s what happened over in Russia, right?” Deborah said.

He did a double take and grinned. “Yes,” he said. “Exactly. It’s great you know about that.” He explained how the HeLa contamination problem happened, then said, “Her cells caused millions of dollars in damage. Seems like a bit of poetic justice, doesn’t it?”

“My mother was just getting back at scientists for keepin all them secrets from the family,” Deborah said. “You don’t mess with Henrietta—she’ll sic HeLa on your ass!”

Everyone laughed.

Christoph reached into the freezer behind him, grabbed an other vial of HeLa cells, and held it out to Deborah, his eyes soft. She stood stunned for a moment, staring into his outstretched hand, then grabbed the vial and began rubbing it fast between her palms, like she was warming herself in winter.

“She’s cold,” Deborah said, cupping her hands and blowing onto the vial. Christoph motioned for us to follow him to the incubator where he warmed the cells, but Deborah didn’t move. As Zakariyya and Christoph walked away, she raised the vial and touched it to her lips.

“You’re famous,” she whispered. “Just nobody knows it.”

Christoph led us into a small laboratory crammed full of microscopes, pipettes, and containers with words like BIOHAZARD and DNA written on their sides. Pointing to the ventilation hoods covering his tables, he said, “We don’t want cancer all over the place, so this sucks all the air to a filtration system that catches and kills any cells that are floating around.”

He explained what culture medium was, and how he moved cells from freezer to incubator to grow. “Eventually they fill those huge bottles in the back,” he said, pointing to rows of gallon-sized jugs. “Then we do our experiments on them, like we find a new drug for cancer, pour it onto the cells, and see what happens.” Zakariyya and Deborah nodded as he told them how drugs go through testing in cells, then animals, and finally humans.

Christoph knelt in front of an incubator, reached inside, and pulled out a dish with HeLa growing in it. “They’re really, really small, the cells,” he said. “That’s why we go to the microscope now so I can show them to you.” He flipped power switches, slid the dish onto the microscope’s platform, and pointed to a small monitor attached to the microscope. It lit up a fluorescent green, and Deborah gasped.

“It’s a pretty color!”

Christoph bent over the microscope to bring the cells into focus, and an image appeared on the screen that looked more like hazy green pond water than cells.

“At this magnification you can’t see much,” Christoph said. “The screen is just boring because the cells are so small, even with a microscope you can’t see them sometimes.” He clicked a knob and zoomed in to higher and higher magnifications until the hazy sea of green turned into a screen filled with hundreds of individual cells, their centers dark and bulging.

“Oooo,” Deborah whispered. “There they are.” She reached out and touched the screen, rubbing her finger from one cell to the next.

Christoph traced the outline of a cell with his finger. “All this is one cell,” he said. “It kinda looks like a triangle with a circle in the middle, you see that?”

He grabbed a piece of scrap paper and spent nearly a halfhour drawing diagrams and explaining the basic biology of cells as Deborah asked questions. Zakariyya turned up his hearing aid and leaned close to Christoph and the paper.

“Everybody always talking about cells and DNA,” Deborah said at one point, “but I don’t understand what’s DNA and what’s her cells.”

“Ah!” Christoph said, excited, “DNA is what’s inside the cell! Inside each nucleus, if we could zoom in closer, you’d see a piece of DNA that looked like this.” He drew a long, squiggly line. “There’s forty-six of those pieces of DNA in every human nucleus. We call those chromosomes—those are the things that were colored bright in that big picture I gave you.” “Oh! My brother got that picture hanging on his wall at home next to our mother and sister,” Deborah said, then looked at Zakariyya. “Did you know this is the man who gave you that picture?”

Zakariyya looked to the ground and nodded, the corners of his mouth turning up into a barely perceptible smile.

“Within the DNA in that picture is all the genetic information that made Henrietta Henrietta,” Christoph told them. “Was your mother tall or short?”

“Short.”

“And she had dark hair, right?” We all nodded.

“Well, all that information came from her DNA,” he said. “So did her cancer—it came from a DNA mistake.”

Deborah’s face fell. She’d heard many times that she’d inherited some of the DNA inside those cells from her mother. She didn’t want to hear that her mother’s cancer was in that DNA too.

“Those mistakes can happen when you get exposed to chemicals or radiation,” Christoph said. “But in your mother’s case, the mistake was caused by HPV, the genital warts virus. The good news for you is that children don’t inherit those kinds of changes in DNA from their parents—they just come from being exposed to the virus.”

“So we don’t have the thing that made her cells grow forever?” Deborah asked. Christoph shook his head. “Now you tell me after all these years!” Deborah yelled. “Thank God, cause I was wonderin!”

She pointed at a cell on the screen that looked longer than the others. “This one is cancer, right? And the rest are her normal ones?”

“Actually, HeLa is all just cancer,” Christoph said.

“Wait a minute,” she said, “you mean none of our mother regular cells still livin? Just her cancer cells?”

“That’s right.”

“Oh! See, and all this time I thought my mother regular cells still livin!”

Christoph leaned over the microscope again and began moving the cells quickly around the screen until he shrieked, “Look, there! See that cell?” He pointed to the center of the monitor. “See how it has a big nucleus that looks like it’s almost pinched in half in the middle? That cell is dividing into two cells right before our eyes! And both of those cells will have your mother’s DNA in them.”

“Lord have mercy,” Deborah whispered, covering her mouth with her hand.

Christoph kept talking about cell division, but Deborah wasn’t listening. She stood mesmerized, watching one of her mother’s cells divide in two, just as they’d done when Henrietta was an embryo in her mother’s womb.

Deborah and Zakariyya stared at the screen like they’d gone into a trance, mouths open, cheeks sagging. It was the closest they’d come to seeing their mother alive since they were babies.

After a long silence, Zakariyya spoke.

“If those our mother’s cells,” he said, “how come they ain’t black even though she was black?”

“Under the microscope, cells don’t have a color,” Christoph told him. “They all look the same—they’re just clear until we put color on them with a dye. You can’t tell what color a person is from their cells.” He motioned for Zakariyya to come closer. “Would you like to look at them through the microscope? They look better there.”

Christoph taught Deborah and Zakariyya how to use the microscope, saying, “Look through like this … take your glasses off… now turn this knob to focus.” Finally the cells popped into view for Deborah. And through that microscope, for that moment, all she could see was an ocean of her mother’s cells, stained an ethereal fluorescent green.

“They’re beautiful” she whispered, then went back to staring at the slide in silence. Eventually, without looking away from the cells, she said, “God, I never thought I’d see my mother under a microscope—I never dreamed this day would ever come.”

“Yeah, Hopkins pretty much screwed up, I think,” Christoph said.

Deborah bolted upright and looked at him, stunned to hear a scientist—one at Hopkins, no less—saying such a thing. Then she looked back into the microscope and said, “John Hopkin is a school for learning, and that’s important. But this is my mother. Nobody seem to get that.” “It’s true,” Christoph said. “Whenever we read books about science, it’s always HeLa this and HeLa that. Some people know those are the initials of a person, but they don’t know who that person is. That’s important history.”

Deborah looked like she wanted to hug him. “This is amazing,” she said, shaking her head and looking at him like he was a mirage.

Suddenly, Zakariyya started yelling something about George Gey. Deborah thumped her cane on his toe and he stopped in midsentence.

“Zakariyya has a lot of anger with all this that’s been goin on,” she told Christoph. “I been trying to keep him calm. Sometime he explode, but he’s trying.”

“I don’t blame you for being angry,” Christoph said. Then he showed them the catalog he used to order HeLa cells. There was a long list of the different HeLa clones anyone could buy for $167 a vial.

“You should get that,” Christoph said to Deborah and Zakariyya.

“Yeah, right,” Deborah said. “What I’m gonna do with a vial of my mother cells?” She laughed.

“No, I mean you should get the money. At least some of it.”

“Oh,” she said, stunned. “That’s okay. You know, when people hear about who HeLa was, first thing they say is, ‘Y’all should be millionaires!’”

Christoph nodded. “Her cells are how it all started,” he said. “Once there is a cure for cancer, it’s definitely largely because of your mother’s cells.”

“Amen,” Deborah said. Then, without a hint of anger, she told him, “People always gonna be makin money from them cells, nothing we can do about that. But we not gonna get any of it.”

Christoph said he thought that was wrong. Why not treat valuable cells like oil, he said. When you find oil on somebody’s property, it doesn’t automatically belong to them, but they do get a portion of the profits. “No one knows how to deal with this when it comes to cells today,” he said. “When your mother got sick, doctors just did what they wanted and patients didn’t ask. But nowadays patients want to know what’s going on.”

“Amen,” Deborah said again.

Christoph gave them his cell phone number and said they could call any time they had questions about their mother’s cells. As we walked toward the elevator, Zakariyya reached up and touched Christoph on the back and said thank you. Outside, he did the same to me, then turned to catch the bus home.

Deborah and I stood in silence, watching him walk away. Then she put her arm around me and said, “Girl, you just witnessed a miracle.”

33 – The Hospital for the Negro Insane (2001)

There were several things I’d promised Deborah we’d do together: seeing her mother’s cells was first; figuring out what happened to Elsie was second. So the day after we visited Christoph’s lab, Deborah and I set out on a weeklong trip that would start at Crownsville, where we hoped to find her sister’s medical records, then go through Clover and end in Roanoke, at the house where Henrietta was born.

It was Mother’s Day, which had always been a sad day for Deborah, and this one hadn’t started well. She’d planned to take her grandson Alfred to see his father in jail before we left town. But her son had called saying he didn’t want Deborah or Little Alfred visiting until he could see them without looking through glass. He told her he wanted to learn about his grandmother, Henrietta, and asked Deborah to send him whatever information we found on our trip. “I been waiting for him to say that his whole life,” she told me, crying. “I just didn’t want him

to have to get locked up in prison to do it.” But once again, she said, “I’m not gonna let that stop me. I just want to focus on the good, like seein my mother cells, and learnin about my sister.” So we drove to Crownsville in our separate cars.

I don’t know what I expected the former Hospital for the Negro Insane to look like, but it certainly wasn’t what we found. Crownsville Hospital Center was on a sprawling 1,200-acre campus, with bright green hills, perfectly mowed lawns, walking paths, weeping cherry trees, and picnic tables. Its main building was red brick with white columns, its porch decorated with wide chairs and chandeliers. It looked like a nice place to sip mint juleps or sweet tea. One of the old hospital buildings was now a food bank; others housed the Police Criminal Investigation Division, an alternative high school, and a Rotary club.

Inside the main building, we walked past empty offices in a long, empty white hallway, saying, “Hello?” and “Where is everybody?” and “This place is weird.” Then, at the end of the hall was a white door covered with years’ worth of dirt and handprints. It had the words MEDICAL RECORDS stenciled across it in broken block letters. Beneath that, in smaller letters, it said NO THOROUGHFARE.

Deborah gripped the door handle and took a deep breath. “We ready for this?” she asked. I nodded. She grabbed my arm with one hand, threw the door open with the other, and we stepped inside.

We found ourselves in a thick white metal cage that opened into the Medical Records room—an empty, warehouse-sized room with no staff, no patients, no chairs, no visitors, and no medical records. Its windows were bolted shut and covered with wire and dirt, its gray carpet bunched in ripples from decades of foot traffic. A waist-high cinder-block wall ran the length of the room, separating the waiting area from the area marked AUTHORIZED PERSONNEL ONLY, where several rows of tall metal shelves stood empty.

“I can’t believe this,” Deborah whispered. “All them records is gone?” She ran her hand along the empty shelves, mumbling, “Nineteen fifty-five was the year where they killed her…. I want them records…. I know it wasn’t good. … Why else would they get rid of them?”

No one had to tell us something awful had happened at Crownsville—we could feel it in the walls.

“Let’s go find someone who can tell us something,” I said.

We wandered into another long hallway, and Deborah began screaming. “Excuse me! We need to find the medical record! Does anyone know where it is?”

Eventually a young woman poked her head out of an office and pointed us down the hall to another office, where someone pointed us to yet another. Finally we found ourselves in the office of a tall man with a thick white Santa Claus beard and wild, bushy eyebrows. Deborah charged over to him, saying, “Hi, I’m Deborah, and this is my reporter. You may have heard of us, my mama’s in history with the cells, and we need to find some medical record.”

The man smiled. “Who was your mother,” he asked, “and what are the cells?”

We explained why we were there, and he told us that the current medical records were in another building, and that there wasn’t much history left at Crownsville. “I wish we had an archivist,” he said. “I’m afraid I’m as close as you’ll get.”

His name was Paul Lurz, and he was the hospital’s director of performance and improvement, but he also happened to be a social worker who’d majored in history, which was his passion. He motioned for us to come sit in his office.

“There wasn’t much funding for treating blacks in the forties and fifties,” he said. “I’m afraid Crownsville wasn’t a very nice place to be back then.” He looked at Deborah. “Your sister was here?”

She nodded.

“Tell me about her.”

“My father always say she never went past a child in her head,” she said, reaching into her purse for a crumpled copy of Elsie’s death certificate, which she began reading slowly out loud. “Elsie Lacks … cause of death (a) respiratory failure (b) epilepsy (c) cerebral palsy…. Spent five years in Crownsville State Hospital.” She handed Lurz the picture of her sister that Zakariyya had hanging on his wall. “I don’t believe my sister had all that.”

Lurz shook his head. “She doesn’t look like she has palsy in this picture. What a lovely child.”

“She did have them seizures,” Deborah said. “And she couldn’t never learn how to use the toilet. But I think she was just deaf. Me and all my brothers got a touch of nerve deafness on account of our mother and father being cousins and having the syphilis. Sometimes I wonder, if somebody taught her sign language, maybe she’d still be alive.”

Lurz sat in his chair, legs crossed, looking at the photo of Elsie. “You have to be prepared,” he told Deborah, his voice gentle. “Sometimes learning can be just as painful as not knowing.”

“I’m ready,” Deborah said, nodding.

“We had a serious asbestos problem,” he said. “Most of our records from the fifties and earlier were contaminated. Instead of cleaning each page of the records to save them, the administration decided to have them carted away in bags and buried.”

He walked to a storage closet near his desk, its walls lined with shelves and file cabinets. In the back corner he’d crammed a small desk, facing the wall. Lurz had been working at Crownsville since 1964, when he was a student intern in his twenties, and he had a habit of collecting potentially historic documents: patient records, copies of old admissions reports that caught his attention—an infant admitted blind in one eye with facial deformities and no family, a child institutionalized without any apparent psychiatric disorder.

Lurz disappeared into the closet and began muttering amid loud clunking and shuffling noises. “There were a few … I just had them out a couple weeks ago … Ah! Here we go.” He walked out of the closet carrying a stack of oversized books with thick leather spines and dark green cloth covers. They were warped with age, coated in dust, and filled with thick, yellowed paper.

“These are autopsy reports,” he said, opening the first book as the scent of mildew filled the room. He’d found them while rummaging in the basement of an abandoned building at the hospital sometime in the eighties, he said. When he’d first opened them, hundreds of bugs scurried from the pages onto his desk.

Between 1910, when the hospital opened, and the late fifties, when the records were found to be contaminated, tens of thou sands of patients passed through Crownsville. Their records—if they’d survived—could have filled Lurz’s small storage room several times over. Now this stack was all that was left at Crownsville.

Lurz pulled out a volume that included some reports from 1955, the year Elsie died, and Deborah squealed with excitement.

“What did you say her full name was?” Lurz asked, running his finger down a list of names written in careful script next to page numbers.

“Elsie Lacks,” I said, scanning the names over his shoulder as my heart raced. Then, in a daze, I pointed to the words Elsie Lacks on the page and said, “Oh my God! There she is!”

Deborah gasped, her face suddenly ashen. She closed her eyes, grabbed my arm to steady herself, and started whispering, “Thank you Lord … Thank you Lord.”

“Wow. This really surprises me,” Lurz said. “It was very unlikely she’d be in here.” Deborah and I began hopping around and clapping. No matter what the record said, at

least it would tell us something about Elsie’s life, which we figured was better than knowing nothing at all.

Lurz opened to Elsie’s page, then quickly closed his eyes and pressed the book to his chest before we could see anything. “I’ve never seen a picture in one of these reports,” he whispered.

He lowered the book so we all could see, and suddenly time seemed to stop. The three of us stood, our heads nearly touching over the page, as Deborah cried, “Oh my baby! She look just like my daughter! … She look just like Davon! … She look just like my father! … She got that smooth olive Lacks skin.”

Lurz and I just stared, speechless.

In the photo, Elsie stands in front of a wall painted with numbers for measuring height. Her hair, which Henrietta once spent hours combing and braiding, is frizzy, with thick mats that stop just below the five-foot mark behind her. Her once-beautiful eyes bulge from her head, slightly bruised and almost swollen shut. She stares somewhere just below the camera, crying, her face misshapen and barely recognizable, her nostrils inflamed and ringed with mucus; her lips—swollen to nearly twice their normal size—are surrounded by a deep, dark ring of chapped skin; her tongue is thick and protrudes from her mouth. She appears to be screaming. Her head is twisted unnaturally to the left, chin raised and held in place by a large pair of white hands.

“She doesn’t want her head like that,” Deborah whispered. “Why are they holding her head like that?”

No one spoke. We all just stood there, staring at those big white hands wrapped around Elsie’s neck. They were well manicured and feminine, pinky slightly raised—hands you’d see in a commercial for nail polish, not wrapped around the throat of a crying child.

Deborah laid her old picture of Elsie as a young girl next to the new photo. “Oh, she was beautiful,” Lurz whispered.

Deborah ran her finger across Elsie’s face in the Crownsville photo. “She looks like she wonderin where I’m at,” she said. “She look like she needs her sister.”

The photo was attached to the top corner of Elsie’s autopsy report, which Lurz and I began reading, saying occasional phrases out loud: “diagnosis of idiocy” … “directly connected with syphilis” … “self-induced vomiting by thrusting fingers down her throat for six months prior to death.” In the end, it said, she was “vomiting coffee-ground material,” which was probably clotted blood.

Just as Lurz read the phrase “vomiting coffee-ground material” out loud, a short, round, balding man in a dark business suit stormed into the room telling me to stop taking notes and demanding to know what we were doing there.

“This is the family of a patient,” Lurz snapped. “They’re here to look at the patient’s medical records.”

The man paused, looking at Deborah, then at me: a short black woman in her fifties, and a taller white woman in her twenties. Deborah gripped her cane and stared him in the eye with a look that just begged him to mess with her. She reached into her bag and pulled out three pieces of paper: her birth certificate, Elsie’s birth certificate, and the legal document giving her power of attorney over Elsie, something she’d spent months getting, just in case anyone tried to stop her from doing precisely what we were doing.

She handed them to the man, who grabbed the autopsy report book and started reading. Deborah and I glared at him, both so furious at him for trying to stop us that neither of us realized he was one of the only hospital officials who’d ever tried to protect the Lacks family’s privacy.

“Can Deborah get a copy of that autopsy report?” I asked Lurz.

“Yes, she can,” he said, “if she submits a written request.” He grabbed a piece of paper from his desk and handed it to Deborah.

“What am I supposed to write?” she asked. Lurz began reciting: “I, Deborah Lacks …”

Within moments she had an official medical record request on a torn piece of paper. She handed it to Lurz and told him, “I need a good blowed-up copy of that picture, too.”

Before Lurz left to make photocopies, with the bald man close behind, he handed me a stack of photos and documents to look at while he was gone. The first document in the stack was a Washington Post article from 1958, three years after Elsie’s death, with the headline:

OVERCROWDED HOSPITAL “LOSES” CURABLE PATIENTS

Lack of Staff at Crownsville Pushes Them to Chronic Stage

The second I read the title, I flipped the article facedown in my lap. For a moment I considered not showing it to Deborah. I thought maybe I should read it first, so I could prepare her for whatever awful thing we were about to learn. But she grabbed it from my hand and read the headline out loud, then looked up, her eyes dazed.

“This is nice,” she said, pointing to a large illustration that showed a group of men in various states of despair, holding their heads, lying on the floor, or huddling in corners. “I’d like to have this for my wall.” She handed it back to me and asked me to read it out loud.

“Are you sure?” I asked. “This is probably going to say some pretty upsetting things. Do you want me to read it first and tell you what it says?”

“No,” she snapped. “Like he told us, they didn’t have the money to take care of black people.” She walked behind me to follow along over my shoulder as I read, then she scanned the page and pointed to several words on the page: “Gruesome?” she said. “Fearsome black wards?”

The Crownsville that Elsie died in was far worse than anything Deborah had imagined. Patients arrived from a nearby institution packed in a train car. In 1955, the year Elsie died, the population of Crownsville was at a record high of more than 2,700 patients, nearly eight hundred above maximum capacity. In 1948, the only year figures were available, Crownsville averaged one doctor for every 225 patients, and its death rate was far higher than its discharge rate. Patients were locked in poorly ventilated cell blocks with drains on the floors instead of toilets. Black men, women, and children suffering with everything from dementia and tuberculosis to “nervousness,” “lack of self-confidence,” and epilepsy were packed into every conceivable space, including windowless basement rooms and barred-in porches. When they had beds, they usually slept two or more on a twin mattress, lying head to foot, forced to crawl across a sea of sleeping bodies to reach their beds. Inmates weren’t separated by age or sex, and often included sex offenders. There were riots and homemade weapons. Unruly patients were tied to their beds or secluded in locked rooms.

I later learned that while Elsie was at Crownsville, scientists often conducted research on patients there without consent, including one study titled “Pneumoencephalographic and skull X-ray studies in 100 epileptics.” Pneumoencephalography was a technique developed in 1919 for taking images of the brain, which floats in a sea of fluid. That fluid protects the brain from damage, but makes it very difficult to X-ray, since images taken through fluid are cloudy. Pneumoenceph alography involved drilling holes into the skulls of research subjects, draining the fluid surrounding their brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays of the brain through the skull. The side effects—crippling headaches, dizziness, seizures, vomiting—lasted until the body naturally refilled the skull with spinal fluid, which usually took two to three months. Because pneumoencephalography could cause permanent brain damage and paralysis, it was abandoned in the 1970s.

There is no evidence that the scientists who did research on patients at Crownsville got consent from either the patients or their parents. Based on the number of patients listed in the pneumoencephalography study and the years it was conducted, Lurz told me later, it most likely involved every epileptic child in the hospital, including Elsie. The same is likely true of at least one other study, called “The Use of Deep Temporal Leads in the Study of Psychomotor Epilepsy,” which involved inserting metal probes into patients’ brains.

Soon after Elsie’s death, a new warden took over at Crownsville and began releasing hundreds of patients who’d been institutionalized unnecessarily. The Washington Post article quoted him saying, “The worst thing you can do to a sick person is close the door and forget about him.”

When I read that line out loud, Deborah whispered, “We didn’t forget about her. My mother died … nobody told me she was here. I would have got her out.”

As we left Crownsville, Deborah thanked Lurz for the information, saying, “I’ve been waiting for this a long, long time, Doc.” When he asked if she was okay, her eyes welled with tears and she said, “Like I’m always telling my brothers, if you gonna go into history, you can’t do it with a hate attitude. You got to remember, times was different.”

When we got outside, I asked Deborah if she was sure she was all right. She just laughed like I was crazy. “It was such a good idea we decided to stop here,” she said, then hurried to the parking lot, climbed into her car, and rolled the window down. “Where we goin next?”

Lurz had mentioned that any other remaining old records from Crowns ville were stored at the Maryland State Archives in Annapolis, about seven miles away. He didn’t think they’d have any from the fifties, but figured it wouldn’t hurt to look.

“We goin to Annapolis see if they got more of my sister medical records?” “I don’t know if that’s a good idea,” I said. “Don’t you want a break?”

“No way!” she yelled. “We got lots more reportin to do—we just gettin hot now!” She screeched off in her car, smiling and waving the new picture of her sister out the window at me as I jumped in my car to follow.

About ten minutes later, as we pulled into the parking lot of the State Archives, Deborah bounced in the seat of her car, gospel music blaring so loud I could hear it with my windows up. When we walked inside, she went straight to the reception desk, reached into her bag, pulled out her mother’s medical records, and waved them in the air above her head, saying, “They call my mother HeLa! She’s in all the computers!”

I was relieved when the receptionist said the archives didn’t have Elsie’s medical records. I didn’t know how much more Deborah could take, and I was scared of what we’d find.

The rest of the day was a blur. As we drove to Clover, each time we stopped, Deborah leapt from her car, clutching the new photo of her sister and thrusting it into the face of every person we met: a woman on a street corner, the man pumping our gas, a pastor at a smallchurch, our waitresses. Each time, she said, “Hi, my name’s Deborah and this is my reporter, you probably heard of us, my mama’s in history with the cells, and we just found this picture of my sister!”

Each time, the reaction was the same: sheer horror. But Deborah didn’t notice. She just smiled and laughed, saying, “I’m so happy our reportin is going so good!”

As the day went on, the story behind the picture grew more elaborate. “She’s a little puffy from cryin because she misses my mother,” she said at one point. Another time she told a woman, “My sister’s upset because she’s been looking for me but can’t find me.”

Occasionally she’d pull over to the side of the road and motion for me to pull up beside her so she could tell me various ideas she’d come up with as she drove. At one point she’d decided she needed to get a safe deposit box for her mother’s Bible and hair; later she asked if she needed to copyright Henrietta’s signature so no one would steal it. At a gas station, while we waited in line for the bathroom, she pulled a hammer from her backpack and said, “I wish the family would give me the home-house so I can make it a historical place. But they won’t, so I’m gonna take the doorknob so at least I have something from it.”

At one point, Deborah climbed from her car looking near tears. “I been havin a hard time keepin my eyes on that road,” she said. “I just keep lookin at the picture of my sister.” She’d been driving with both of Elsie’s pictures on the passenger seat beside her, staring at them as she drove. “I can’t get all these thoughts outta my head. I just keep thinkin about what she must’ve gone through in those years before she died.”

I wanted to take the picture from her so she’d stop torturing herself with it, but she wouldn’t have let me if I’d tried. Instead, I just kept saying maybe we should go home, it had been an intense couple days, and perhaps she wasn’t ready for so much reporting at once. But each time, Deborah told me I was crazy if I thought she was stopping now. So we kept going.

At several points during the day, Deborah said I should take her mother’s medical records into my hotel room when we stopped for the night. “I know you’ll have to look at every page, take notes and everything, cause you need all the facts.” And finally, when we checked into a hotel somewhere between Annapolis and Clover around nine o’clock at night, she gave them to me.

“I’m going to sleep,” she said, walking into the room next to mine. “Knock yourself out.”

34 – The Medical Records (2001)

A few minutes later, Deborah pounded on my door. She’d changed into an enormous white T-shirt that hung past her knees—on it was a picture of a stick-figure woman taking cookies out of an oven, and the word GRANDMA in big childlike print.

“I decided I’m not going to bed,” she said matter-of-factly. “I want to look at that stuff with you.” She was jittery and twitchy, like she’d just had several shots of espresso. In one hand she clutched the Crownsville picture of Elsie; with the other she grabbed the bag filled with her mother’s medical records off the dresser where I’d put it. She dumped the bag’s contents on my bed just as she’d done the first night we met.

“Let’s get busy,” she said.

There were more than a hundred pages, many of them crumpled, folded, or torn, all of them out of order. I stood staring for a long moment, stunned and overwhelmed, then said maybe we could sort through it together, then I could find somewhere to photocopy what I’d need.

“No!” Deborah yelled, then smiled a nervous smile. “We can just read it all here and you can take notes.”

“That would take days,” I said.

“No it won’t,” Deborah said, climbing on all fours across the pile of papers, and sitting cross-legged in the center of the bed.

I pulled up an armchair, opened my laptop, and started sorting. There was a land deed from the small chunk of Clover property Deborah bought with two thousand dollars from her father’s asbestos settle ment. There was a 1997 newspaper mug shot of Lawrence’s son with a caption that said, WANTED. LAWRENCE LACKS, ROBBERY W/DEADLY WEAPON. There were order forms for buying HeLa cells online, receipts, newsletters from Deborah’s church, and seemingly endless copies of the photo of Henrietta, hands on hips. And therewere dozens of notebook pages where Deborah had written definitions of scientific and legal terms, and poems about her life:

cancer
check up
can’t afford
white and rich get it
my mother was black
black poor people don’t have the money to pay for it
mad yes I am mad
we were used by taking our blood and lied to
We had to pay for our own medical, can you relieve that.
John Hopkin Hospital and all other places, that has my mother cells, don’t give her
Nothing,

As I read, Deborah grabbed several photocopied pages from a genealogy how-to book and held them up for me to see, saying, “That’s how I knew to get power of attorney and bring all that stuff to get my sister information at Crownsville. They didn’t know who they was foolin’ with!” As she talked, she watched my hands moving through the pile of papers.

I held a page of the records close to my face to make out the small script, then began reading out loud, “ ‘This twenty-eight-year-old’ … something … I can’t read the handwriting … ‘positive Rh.’” The entry was dated November 2, 1949.

“Oh wow!” I said suddenly. “This is three days before you were born—your mom’s pregnant with you here.”

“What? Oh my god!” Deborah screamed, snatching the paper and staring at it, mouth wide. “What else does it say?”

It was a normal checkup, I told her. “Look here,” I said, pointing at the page. “Her cervix is two centimeters dilated … She’s getting ready to have you.”

Deborah bounced on the bed, clapped her hands, and grabbed another page from the medical records.

“Read this one!”

The date was February 6, 1951. “This is about a week after she first went to the hospital with her cervical cancer,” I said. “She’s waking up from anesthesia after getting her biopsy. It says she feels fine.”

For the next few hours, Deborah pulled papers off the pile for me to read and sort. One moment she’d screech with joy over a fact I’d found, the next she’d panic over a new fact that didn’t sit well, or at the sight of me holding a page of her mother’s medical records. Each time she panicked, she’d pat the bed and say, “Where’s my sister autopsy report?” or “Oh no, where’d I put my room key?”

Occasionally she stashed papers under the pillow, then pulled them out when she decided it was okay for me to see them. “Here’s my mother autopsy,” she said at one point. A few minutes later she handed me a page she said was her favorite because it had her mother’s signature on it—the only piece of Henrietta’s handwriting on record. It was the consent form she’d signed before her radium treatment, when the original HeLa sample was taken.

Eventually, Deborah grew quiet. She lay on her side and curled herself around the Crownsville picture of Elsie for so long, I thought she’d fallen asleep. Then she whispered, “Oh my god. I don’t like the way she got her neck.” She held up the picture and pointed to the white hands.

“No,” I said. “I don’t like that either.”

“I know you was hopin I didn’t notice that, weren’t you?”

“No. I knew you noticed.”

She laid her head back down again. We kept on like this for hours, me reading and taking notes, Deborah staring at Elsie’s picture in long silences broken only by her sparse commentary: “My sister look scared.” … “I don’t like that look on her face.” … “She was chokin herself?” … “I guess after she realized she wasn’t going to see my mother no more, she just gave up.” Occasionally she shook her head hard, like she was trying to snap herself out of something.

Eventually I leaned back in my chair and rubbed my eyes. It was the middle of the night and I still had a big pile of paper to sort through.

“You might think about getting yourself another copy of your mother’s medical record and stapling it with all the pages in order to keep it all straight,” I said.

Deborah squinted at me, suddenly suspicious. She moved across the room to the other bed, where she lay on her stomach and started reading her sister’s autopsy report. A few minutes later, she jumped up and grabbed her dictionary.

“They diagnosed my sister with idiocy?” she said, then started reading the definition out loud. “‘Idiocy: utterly senseless or foolish.’” She threw down the dictionary. “That’s what they say was wrong with my sister? She had foolish? She was an idiot? How can they do that?”

I told her that doctors used to use the word idiocy to refer to mental retardation, and to the brain damage that accompanied hereditary syphilis. “It was sort of a generic word to describe someone who was slow,” I said.

She sat down next to me and pointed to a different word in her sister’s autopsy report. “What does this word mean?” she asked, and I told her. Then her face fell, her jaw slack, and she whispered, “I don’t want you puttin that word in the book.”

“I won’t,” I said, and then I made a mistake. I smiled. Not because I thought it was funny, but because I thought it was sweet that she was protective of her sister. She’d never told me something was off limits for the book, and this was a word I would never have included—to me, it didn’t seem relevant. So I smiled.

Deborah glared at me. “Don’t you put that in the book!” she snapped.

“I won’t,” I told her, and I meant it. But I was still smiling, now more from nervousness than anything else.

“You’re lying,” Deborah yelled, flipping off my tape recorder and clenching her fists.

“I’m not, I swear, look, I’ll say it on tape and you can sue me if I use it.” I clicked the recorder on, said into the mic that I wouldn’t put that word in the book, then turned it off.

“You’re lying!” she yelled again. She jumped off the bed and stood over me, pointing a finger in my face. “If you’re not lying, why did you smile?”

She started frantically stuffing papers into her canvas bags as I tried to explain myself and talk her down. Suddenly she threw the bag on the bed and rushed toward me. Her hand hit my chest hard as she slammed me against the wall, knocking me breathless, my head smacking the plaster.

“Who you working for?” she snapped. “John Hopkin?”

“What? No!” I yelled, gasping for breath. “You know I work for myself.”

“Who sent you? Who’s paying you?” she yelled, her hand still holding me against the wall. “Who paid for this room?”

“We’ve been through this!” I said. “Remember? Credit cards? Student loans?”

Then, for the first time since we met, I lost my patience with Deborah. I jerked free of her grip and told her to get the fuck off me and chill the fuck out. She stood inches from me, staring wild-eyed again for what felt like minutes. Then, suddenly, she grinned and reached up to smooth my hair, saying, “I never seen you mad before. I was starting to wonder if you was even human cause you never cuss in front of me.”

Then, perhaps as an explanation for what just happened, she finally told me about Cofield. “He was a good pretender,” she said. “I told him I would walk through fire alive before I would let him take my mother medical records. I don’t want nobody else to have them. Everybody in the world got her cells, only thing we got of our mother is just them records and her Bible. That’s why I get so upset about Cofield. He was trying to take one of the only things I really got from my mother.”

She pointed at my laptop on the bed and said, “I don’t want you typin every word of it into your computer either. You type what you need for the book, but not everything. I want people in our family to be the only ones who have all them records.”

After I promised I wouldn’t copy all the records, Deborah said she was going to bed again, but for the next several hours, she knocked on my door every fifteen or twenty minutes. The first time she reeked of peaches and said, “I just had to go to my car for my lotion so I thought I’d say hi.” Each time it was something else: “I forgot my nail file in the car!” … “X-Files is on!” … “I’m suddenly thinking about pancakes!” Each time she knocked, I opened my door wide so she could see the room and the medical records looking just as they had when she left.

The last time she knocked, she stormed past me into the bathroom and leaned over the sink, her face close to the mirror. “Am I broken out?” she yelled. I walked into the bathroom, where she stood pointing to a quarter-sized welt on her forehead. It looked like a hive.

She turned and pulled her shirt down so I could see her neck and back, which were covered in red welts.

“I’ll put some cream on it,” she said. “I should probably take my sleeping pill.” She went back to her room and a moment later the volume on her TV went up. Screaming and crying and gunfire poured out of the television all night, but I didn’t see her again until six o’clock in the morning—one hour after I’d gone to sleep—when she knocked on my door yelling, “Free continental breakfast!”

My eyes were red and swollen with dark circles under them, and I was still wearing my clothes from the day before. Deborah looked at me and laughed.

“We’re a mess!” she said, pointing to the hives now covering her face. “Lord, I was so anxious last night. I couldn’t do anything with myself so I painted my fingernails.” She held out her hands for me to see. “I did a horrible job!” she said, laughing. “I think I did it after I took my pill.”

Her nails and much of the skin around them were bright fire-engine red. “From a distance it looks okay,” she said. “But I’d get fired if I was still doin nails for a living.”

We walked down to the lobby for our free breakfast. As Deborah wrapped a handful of mini-muffins in a napkin for later, she looked up at me and said, “We’re okay, Boo.”

I nodded and said I knew. But at that point I wasn’t sure of anything.

35 – Soul Cleansing (2001)

By later that day, the hives had spread across Deborah’s back, her cheeks were splotchy and red, and long welts filled the spaces beneath each eye. Both lids were swollen and shining like she’d covered them in blood-red shadow. I asked again and again if she was okay and said maybe we should stop somewhere so she could see a doctor. But she just laughed.

“This happens all the time,” she said. “I’m fine. I just need some Benadryl.” She bought a bottle that she kept in her purse and swigged from all day. By noon, about a third of it was gone.

When we got to Clover, we walked along the river, down Main Street, and through Henrietta’s tobacco field. And we visited the home-house, where Deborah said, “I want you to take a picture of me here with my sister.”

She stood in front of the house, turned both photos of Elsie so they faced me, and held them to her chest. She had me take pictures of her and Elsie on the stump of what used to be Henrietta’s favorite oak tree and in front of Henrietta’s mother’s tombstone. Then she knelt on the ground, next to the sunken strips of earth where she imagined her mother and sister were buried. “Take one of me and my sister by her and my mother grave,” she said. “It’ll be the only picture in the world with the three of us almost together.”

Finally we ended up at Henrietta’s sister Gladys’s house, a small yellow cabin with rocking chairs on its porch. Inside we found Gladys sitting in her dark wood-paneled living room. It was warm out, sweatshirt weather, but Gladys had her double-wide black wood-stove burning so hot, she sat beside it wiping sweat from her forehead with tissue. Her hands and feet were gnarled from arthritis, her back so bent her chest nearly touched her knees unless she propped herself up with an elbow. She wore no underwear, only a thin nightgown that had ridden above her waist from hours in her wheelchair.

She tried to straighten her gown to cover herself when we walked in, but her hands couldn’t grasp it. Deborah pulled it down for her, saying, “Where everybody at?”

Gladys said nothing. In the next room, her husband moaned from a hospital bed, just days from death.

“Oh right,” Deborah said, “they at work ain’t they?”

Gladys said nothing, so Deborah raised her voice loud to make sure Gladys could hear: “I got a Internet!” she yelled. “I’m going to get a web page up about my mother and hopefully be getting some donations and funding so I can come back down here put a monument up on her grave and turn that old home-house into a museum that will remind people of my mother down here!”

“What you put in there?” Gladys asked, like Deborah was crazy. “Cells,” Deborah said. “Cells so people can see her multiply.”

She thought for a moment. “And a great big picture of her, and maybe one of them wax statues. Plus some of them old clothes and that shoe in the house. All that stuff mean a whole lot.”

Suddenly the front door opened and Gladys’s son Gary came inside yelling, “Hey Cuz!” Gary was fifty, with that smooth Lacks skin, a thin mustache and soul patch, and a gap between his front teeth that the girls loved. He wore a red and blue short-sleeved rugby shirt that matched his blue and red jeans and sneakers.

Deborah squealed, threw her arms around Gary’s neck, and pulled the photo of Elsie from her pocket. “Look what we got from Crowns ville! It’s my sister!” Gary stopped smiling and reached for the picture.

“That’s a bad shot,” Deborah said. “She’s crying cause it’s cold.”

“How about showing him that picture of her on the porch when she was a kid?” I said. “That’s a good one.” Gary looked at me like, What the hell is going on here?

“That picture’s got her a little upset,” I said. “I understand why,” he whispered.

“Plus she just saw her mother’s cells for the first time,” I told him.

Gary nodded. Over the years, he and I had spent many hours talking; he understood Deborah and what she’d been through more than anyone else in her family.

Deborah pointed to the hives on her face. “I’m having a reaction, swellin up and breakin out. I’m crying and happy at the same time.” She started pacing back and forth, her face shining with sweat as the wood-stove clanged and seemed to suck most of the oxygen from the room. “All this stuff I’m learning,” she said, “it make me realize that I did have a mother, and all the tragedy she went through. It hurts but I wanna know more, just like I wanna know about my sister. It make me feel closer to them, but I do miss them. I wish they were here.”

Keeping his eyes on Deborah, Gary walked across the room, sat in an oversized recliner, and motioned for us to join him. But Deborah didn’t sit. She paced back and forth across the linoleum floor, picking the red polish off her nails and talking an incoherent stream about a murder she’d heard about on the news and the traffic in Atlanta. Gary’s eyes followed her from one side of the room to the other, intense and unblinking.

“Cuz,” he said finally. “Please sit.”

Deborah raced over to a rocking chair not far from Gary, threw herself into it, and started rocking violently, thrusting her upper body back and forth and kicking her feet like she was trying to flip the chair over.

“You wouldn’t believe what we been learning!” she said. “They injected my mother’s cells with all kinds of, uh, poisons and stuff to test if they’d kill people.”

“Dale,” Gary said, “do something for yourself.”

“Yeah, I’m tryin,” she said. “You know they shot her cells into murderers in prison?” “I mean to relax,” Gary said. “Do something to relax yourself.”

“I can’t help it,” Deborah said, waving him off with her hand. “I worry all the time.”

“Like the Bible said,” Gary whispered, “man brought nothing into this world and he’ll carry nothing out. Sometime we care about stuff too much. We worry when there’s nothing to worry about.”

In a moment of clarity, Deborah nodded, saying, “And we bring our own body down by doing it.”

“You don’t seem so good right now, Cuz. Make some time for yourself,” Gary said. “When I get in my car and drive, don’t have to be going nowhere, circles is fine by me. Just got to have time to relax with the road under me. Everybody needs something like that.”

“If I ever get any money,” Deborah said, “I’ll get an RV where I can go back and forth and I don’t have to be in the same place ever. Can’t nobody bother you when you’re movin.”

She stood up and started pacing again.

“Only time I really relax is when I’m drivin down here,” she said. “But this time I just be drivin along the whole time thinking about what happened to my sister and my mother.”

The moment Deborah said the words sister and mother, her face got redder and she started to panic. “You know they shot my mother cells into space and blew her up with nuclear bombs? They even did that thing … what do you call it … um … cloning! … that’s right, they did that cloning on her.”

Gary and I shot each other a nervous glance and both started talking at once, scrambling to bring her back from wherever she was going.

“There are no clones,” I said. “Remember?”

“You don’t have to be fearful,” Gary said. “The word of God said if we honor our father and mother, we can live long upon the earth, and you doing that, you honoring your mother.” He smiled and closed his eyes. “I love this scripture that’s in Psalms,” he told her. “It says even if our father and our mother fall sick, the Lord take care of you. Even if you lose everybody like your mother and your sister, God’s love will never turn His back on you.”

But Deborah didn’t hear any of it.

“You wouldn’t believe it,” she said. “You know they mixed her with mice to make a human-mouse? They say she’s not even human anymore!” She laughed a loud, manic laugh and ran to the window. “Holy cuss!” she yelled, “is it raining out there?”

“Much needed rain,” Gary whispered, rocking back and forth.

Deborah grabbed the blue ribbon keychain that always hung around her neck. It said WWJD. “What is this,” she said, “a radio station? I never heard of WWJD.” She started yanking it off her neck.

“Come on, Cuz, it means ‘What Would Jesus Do,’” Gary said. “You know that.”

Deborah stopped fussing with the keys and collapsed back into the chair. “Can you believe they even gave her that AID virus and injected her into monkeys?” She stared at the floor, rocking violently, her chest rising and falling fast with each breath.

Gary sat, calmly rocking in his chair, watching Deborah’s every move, like a doctor studying a patient. “Don’t make yourself sick over something you can’t do nothin about,” Gary whispered to Deborah as she rubbed the welts on her eyes. “It’s not worth it… you got to let the Lord handle it.” His eyes drooped closed as he mumbled, “What is Deborah doing for Deborah?”

When she didn’t answer he looked at me and said, “I was talking to God just now—he’s trying to make me say stuff, trying to make me move.” Deborah called Gary The Disciple be-cause he had a habit of channeling the Lord in the middle of a conversation. It started about twenty years earlier, when he was thirty—one minute he was busy with booze and women, the next he’d had several heart attacks and bypasses, and he woke up preaching.

“I been tryin to keep Him out of this because we’ve got company,” he said, flashing me a bashful grin. “But sometimes He just won’t let me keep Him out.”

Gary’s brown eyes went vacant, unfocused, as he stood slowly from his chair, spread his arms wide, and reached toward Deborah, who struggled to her feet, hobbled toward him, and wrapped her arms around his waist. The moment she touched him, his upper body seized like he’d been electrocuted. His arms thrust closed, hands clasping each side of Deborah’s head, palms to her jaw, fingers spread from the back of her skull to the bridge of her nose. Then he started shaking. He squeezed Deborah’s face to his chest as her shoulders heaved in silent sobs, and tears rolled from Gary’s eyes.

As they rocked back and forth, Gary tipped his head to the sky, and began singing in a hauntingly beautiful baritone.

“Welcome, into this place. … Welcome, into this broken vessel.” His singing, quiet at first, grew louder with each word until it filled the house and poured into the tobacco fields. “You desire to abide in the praises of your people, so I lift my hand, and I lift my heart, and I offer up this praise unto ya, Lord.”

“You’re welcome into this broken vessel, Lord,” he whispered, squeezing Deborah’s head in his palms. His eyes shot open and closed, and he began to preach, sweat pouring from his face.

“That you said in your word Lord, that the BELIEVER would lay hands on the sick, and that they shall RECOVER!” His voice rose and fell, from a whisper to a yell and back. “I REALIZE God that TONIGHT there’s just some things doctors CANNOT DO!”

“Amen Lord,” Deborah mumbled, face pressed to his chest, voice muffled.

“We thank ya tonight,” Gary whispered. “Because we need your help with them CELLS, Lord … we need your help liftin the BURDEN of them cells from this woman! Lift this burden, Lord, take it away, we don’t NEED it!”

Deborah started convulsing in Gary’s arms, weeping and whispering, “Thank ya, Lord … Thank ya, Lord.” Gary squeezed his eyes tight, and yelled along with her, “THANK YOU, LORD! THANK YOU FOR TONIGHT!” Their voices grew louder together, until Gary stopped, tears and sweat pouring from his face onto Deborah as she screamed, “Thank you Jesus!” and let loose with a chorus of hallelujahs and praise Gods. Gary swayed back and forth, breaking into song again, his voice deep and old, as if coming from the generations who worked his tobacco fields before him: “I know the Lord been good, yoooooooooooh … I know the Lord been good.”

“Real good,” Deborah whispered.

“He’s put food on my table …” Gary dropped his voice, humming as Deborah spoke: “Show me which way to go, Lord,” she said. “Show me where you want me to go with these cells, Lord, please. I’ll do anything you want me to do, Lord, just help me with this BURDEN. I can’t do it alone—I thought I could. But I can’t TAKE it, Lord.”

Mmmmmmm mmmmmmm mmmmmmm, Gary hummed.

“Thank you Lord for giving me this information about my mother and my sister, but please HELP ME, cause I know I can’t handle this burden by myself. Take them CELLS from me, Lord, take that BURDEN. Get it off and LEAVE it there! I can’t carry it no more, Lord. You wanted me to give it to you and I just didn’t want to, but you can have it now, Lord. You can HAVE IT! Hallelujah, amen.”

For the first time since Gary stood from his chair, he looked straight at me.

I’d been watching all this from a recliner a few feet away, dumbfounded, terrified to move or make noise, frantically scribbling notes. In any other circumstance I might have thought the whole thing was crazy. But what was happening between Gary and Deborah at that moment was the furthest thing from crazy I’d seen all day. As I watched, all I could think was, Oh my god… I did this to her.

Gary stared into my eyes as he hugged Deborah’s sobbing body and whispered to her, “You’re not alone.”

Looking at me, Gary said, “She can’t handle the burden of these cells no more, Lord! She can’t do it!” Then he raised his arms above Deborah’s head and yelled, “LORD, I KNOW you sent Miss Rebecca to help LIFT THE BURDEN of them CELLS!” He thrust his arms toward me, hands pointed at either side of my head. “GIVE THEM TO HER!” he yelled. “LET HER CARRY THEM.”

I sat frozen, staring at Gary, thinking, Wait a minute, that wasn’t supposed to happen! Deborah stepped away from Gary’s embrace, shaking her head, wiping her eyes, and yelling, “Phew!” They both laughed. “Thanks, Cuz,” she said, “I feel so light!”

“Some things you got to release,” Gary said. “The more you hold them in, the worse you get. When you release them, they got to go somewhere else. The Bible says He can carry all that burden.”

She reached up and touched his face. “You always know what I need. You know how to take care of me.”

“It’s not so much that I see it, but He sees it,” Gary said, smiling. “I didn’t know all that was coming out my mouth. That was the Lord talking to you.”

“Well, hallelujah,” Deborah said, giggling. “I’m comin back tomorrow for some more of this! Amen!”

It had been drizzling outside for hours, but suddenly rain pounded the tin roof and turned to hail so loud that it sounded like applause. The three of us walked to the front door to look.

“It’s the Lord saying he heard us,” Gary said, smiling. “He got the faucet turned on high to clean you out, Cuz!”

“Praise the Lord!” Deborah yelled.

Gary hugged Deborah good-bye, then hugged me. Deborah grabbed her long black raincoat, opened it wide, and raised it above her like an umbrella, nodding for me to come under with her. She let the coat fall onto both of our heads, then put her arm tight around my shoulders.

“You ready for some soul cleansing?” she yelled, opening the door.

36 – Heavenly Bodies (2001)

The next morning Deborah’s hives had gone down some, but her eyes were still swollen, so she decided she needed to go home to see her doctor. I stayed behind in Clover because I wanted to talk to Gary about the night before. When I walked into his living room he was standing on a plastic folding chair in a bright turquoise shirt, changing a lightbulb.

“I can’t get that beautiful song out of my head,” I told him. “I’ve been singing it all morning.” Then I hummed a few bars: Welcome into this place … welcome into this broken vessel.

Gary jumped off the chair, laughing and raising his eyebrows at me.

“Now why do you think that’s stuck in your head?” he asked. “I know you don’t like to think about it, but that’s the Lord telling you something.”

He said it was a hymn, then ran from the living room and came back carrying a soft blue Bible with large gold lettering across its front. “I want you to have this,” he told me, tapping the cover with his finger. “He died for us that we might have the right to eternal life. A lot of people don’t believe that. But you can have eternal life. Just look at Henrietta.”

“You believe Henrietta is in those cells?”

He smiled and looked down his nose at me like, silly child. “Those cells are Henrietta,” he said, taking back the Bible and opening it to the book of Romans. “Read that,” he said, pointing to a chunk of text. I started reading to myself and he covered the Bible with his hand. “Out loud,” he said.

So I read aloud from the Bible, for the first time in my life: “Those who believe in me will live, even though they die; and those who live and believe in me will never die.”

Gary flipped to another passage for me to read: “Someone will ask, ‘How can the dead be raised to life? What kind of body will they have?’ You fool! When you plant a seed in the ground, it does not sprout to life unless it dies. And what you plant is a bare seed … not the full-bodied plant that will later grow up. God provides that seed with the body he wishes; he gives each seed its own proper body.”

“Henrietta was chosen,” Gary whispered. “And when the Lord chooses an angel to do his work, you never know what they going to come back looking like.”

Gary pointed at another passage and told me to keep reading. “There are heavenly bodies and earthly bodies, the beauty that belongs to heavenly bodies is different from the beauty that belongs to earthly bodies.”

When Christoph projected Henrietta’s cells on the monitor in his lab a few days earlier, Deborah said, “They’re beautiful.” She was right. Beautiful and otherworldly—glowing green and moving like water, calm and ethereal, looking precisely like heavenly bodies might look. They could even float through the air.

I kept reading: “This is how it will be when the dead are raised to life. When the body is buried, it is mortal; when raised, it will be immortal. There is, of course, a physical body, so there has to be a spiritual body.”

“HeLa?” I asked Gary. “You’re saying HeLa is her spiritual body?” Gary smiled and nodded.

In that moment, reading those passages, I understood completely how some of the Lackses could believe, without doubt, that Henrietta had been chosen by the Lord to become an immortal being. If you believe the Bible is the literal truth, the immortality of Henrietta’s cells makes perfect sense. Of course they were growing and surviving decades after her death, of course they floated through the air, and of course they’d led to cures for diseases and been launched into space. Angels are like that. The Bible tells us so.

For Deborah and her family—and surely many others in the world—that answer was so much more concrete than the explanation offered by science: that the immortality of Henrietta’s cells had something to do with her telomeres and how HPV interacted with her DNA. The idea that God chose Henrietta as an angel who would be re born as immortal cells made a lot more sense to them than the explanation Deborah had read years earlier in Victor McKusick’s genetics book, with its clinical talk of HeLa’s “atypical histology” and “unusually malignant behavior.” It used phrases like “the tumor’s singularity” and called the cells “a reservoir of morphologic, biochemical, and other information.”

Jesus told his followers, “I give them eternal life, and they shall never die.” Plain, simple, to the point.

“You better be careful,” Gary told me. “Pretty soon you’re gonna find yourself converted.” “I doubt it,” I told him, and we both laughed.

He slid the Bible from my hands and flipped to another passage, then handed it back, pointing at one sentence: “Why do you who are here find it impossible to believe that God raises the dead?”

“You catch my drift?” he said, smiling a mischievous grin. I nodded, and Gary closed the Bible in my hands.

37 – “Nothing to Be Scared About” (2001)

When Deborah got to her doctor’s office, her blood pressure and blood sugar were so high, her doctor was amazed she hadn’t had a stroke or heart attack while we were in Clover. With levels like hers, he said, she could still have one any minute. Suddenly her strange behavior on the trip seemed less strange. Confusion, panic, and incoherent speech are all symptoms of extremely high blood pressure and blood sugar, which can lead to heart attack and stroke. So is redness and swelling, which could explain why her red welts didn’t go away despite all the Benadryl she drank.

The doctor told her she needed to avoid stress completely, so we decided she should stop coming on research trips with me. But she insisted I call her from the road to tell her what she was missing. For the next several months, as I continued my research, I told Deborah only the good things I found: stories about Henrietta dancing and watching the boys play baseball at Cliff’s house, details about her family history from county records and wills.

But we both knew the break from HeLa wouldn’t last—Deborah was still scheduled to give a talk at the National Foundation for Cancer Research conference in honor of Henrietta. She was determined to do it, even though she was terrified by the idea of getting up on stage, so she started spending her days planning her speech.

One afternoon, in the midst of preparing for the conference, she called me to say she’d decided she wanted to go to school. “I keep thinkin, maybe if I understood some science, then the story about my mother and sister wouldn’t scare me so much,” she said. “So I’m just gonna do it.” Within days, she’d called several local community centers and found one that offered adult education classes, and signed up to take math and reading placement tests.

“Once I get tenth-grade level, I’m ready to go on to college!” she told me. “Can you imagine? Then I can understand all that science about my mother!” She thought about becoming a dental assistant, but was leaning toward radiation technologist so she could study cancer and help patients who were getting radiation treatment like her mother.

As the conference approached, Deborah was calm, but I wasn’t. I kept asking, “Are you sure you want to do this?” and “How’s your blood pressure?” and “Does your doctor know you’re doing this?” She kept telling me she was fine, that even her doctor said so.

Deborah took her placement tests for school and registered for the classes she’d need to get herself up to tenth-grade level and qualify for the community college classes she wanted to take. She called me, giddy, screaming, “I start a week from today!”

But everything else seemed to be spiraling in the wrong direction. A few days before the conference, Lawrence and Zakariyya called yelling again about how she shouldn’t talk to anyone, and saying they wanted to sue every scientist who’d ever worked on Henrietta’s cells. Sonny told them to stay out of it, saying, “All she doin now is goin places to speak and learn—y’all don’t want to do that, so just leave her alone.” But Lawrence insisted Deborah give him the records she’d gathered on their mother.

Then her son Alfred called from prison, saying he’d finally be going on trial right after the conference, and the charges now included armed robbery and attempted murder. That same day, Deborah got a call about one of Lawrence’s sons who’d been arrested for robbery and was in the same jail as Alfred.

“The Devil’s been busy, girl,” she told me. “I love them boys, but I’m not gonna let nobody upset me right now.”

The next morning was September 11, 2001.

I called Deborah around eight in the morning, saying I was leaving my home in Pittsburgh, and headed to the conference in Washington, D.C. Less than an hour later, the first plane hit the World Trade Center. A reporter friend called my cell phone and told me the news, saying, “Don’t go to D.C., it’s not safe.” I turned my car around as the second plane hit, and by the time I got home, the TV was filled with footage of the Pentagon’s wreckage and buildings throughout D.C. being evacuated, including the Ronald Reagan Building, where the conference reception to honor Henrietta was supposed to be held.

I called Deborah, and she answered in a panic. “It’s just like Pearl Harbor all over again,” she said. “And Oklahoma! There’s no way I’m going to D.C. now.” But there was no need. With airlines and Washington shut down, the NFCR canceled the Henrietta Lacks conference, with no plan to reschedule.

For the next several days, Deborah and I talked many times as we both struggled to make sense of the attacks, and Deborah tried to accept the idea that the conference had been canceled. She was depressed, and worried that it would take another ten years for someone to honor her mother.

Then, on Sunday morning, five days after September 11, Deborah went to church to pray for Alfred, whose trial was only a few days away, and to ask that the Henrietta Lacks conference be rescheduled. She sat in the front pew in a red dress suit, hands folded in her lap, listening to her husband preach about September 11. About an hour into the service, Deborah realized she couldn’t move her arm.

Davon, who was now nine years old, always sat in the choir and watched his grandmother during church. For a moment, as Deborah’s face began to sag and her body slumped, Davon thought maybe she’d accidentally taken her sleeping pill before coming to church. Deborah saw his little eyes watching her, and she tried to wave, to tell him something was wrong, but she couldn’t move.

At the end of the service, the congregation stood, and Deborah’s mouth twisted as she fought to scream. The only sound came from Davon, who yelled, “Something’s wrong with my grandma!” He sprinted from the choir platform just as Deborah fell forward onto one knee. Davon screamed, “Grandpop! Grandpop!” Pullum took one look at Deborah and yelled, “Stroke!”

The second Davon heard the word stroke, he grabbed Deborah’s pocketbook, dug out her car keys, and ran to the car. He opened all the doors wide, laid the passenger seat back as flat as it would go, and jumped behind the wheel, feet dangling far above the pedals. Then he started the engine so Pullum could just climb in and start driving.

Soon they were speeding along the winding road from church, Deborah slipping in and out of consciousness in the passenger seat while Davon leaned over her, screaming, “Don’t you go to sleep, Ma!” and slapping her hard across the face every time she closed her eyes. Pullum kept yelling for him to stop, saying, “Boy, you gonna kill your grandma!” But Davon wouldn’t stop.

When they got to the fire station down the road, medics pulled Deborah from the car, gave her oxygen and injections, ran an IV to her arm, and loaded her into an ambulance. As the ambulance drove away, a fireman told Davon he was smart to smack Deborah in the car.

“Boy, you did your grandmother a favor,” the fireman said. “You just saved her life.”

One of the first things Deborah said when she regained consciousness was, “I have to take a test.” The hospital staff thought she meant she needed a CT scan or a blood test, but she meant a test for school.

When the doctors finally let Deborah’s family see her, Davon, Pullum, and Deborah’s daughter, Tonya, filed in to find Deborah sitting propped up in bed, eyes wide. Tired, but alive. Her left side was still weak, and she couldn’t move her arms well, but the doctors said she was lucky and would probably recover completely.

“Praise the Lord!” Pullum yelled.

A few days later, when Deborah got out of the hospital, she left me a voice mail. It was my birthday, and we’d planned to meet in Clover that day. “Happy birthday, Boo,” she said, her voice utterly calm. “I’m sorry I can’t come celebrate with you down in the country, but I had me a couple strokes the other day. It was bound to happen, but praise the Lord, I’m okay. Can’t talk too good out one side of my mouth, but doctor says I’m gonna be fine. You keep reportin, and don’t you worry about me—I feel good. Better than since before I found out they took my mother cells. I feel so light, you know? It lifted my burden. I thank the Lord for what happened.”

The doctor told Deborah a second stroke was almost always worse than the first. “Trust me,” he said, “you don’t want to do this again.” He told her she needed to educate herself, learn the warning signs, know how to bring down her blood pressure and control her blood sugar.

“Just another reason I got to keep goin on and get to school,” she told me. “I already signed up for a diabetes class and a stroke class to get more understanding about that. Maybe I can take a nutrition class to learn how to eat good, too.”

The stroke seemed to ease tension in the family too: Deborah’s brothers began calling every day to see how she was doing, and Zakariyya even said he wanted to visit. Deborah hoped this meant her brothers would find peace with her desire for information about their mother.

She called me laughing, saying, “Girl, I got to get my rest so we can get back on the road and do more research before the trail get cold! But from now on, I ride with you. Everything will be all right. That’s what I woke up knowin. I just gotta move a little slower, pay attention to things, and not let myself get scared. Cause there’s nothin to be scared about with my mother and them cells. I don’t want nothin to keep me from learnin no more.”

But in fact there was something that would keep Deborah from learning: she didn’t have enough money. Her social security check barely covered her living expenses, let alone classes and books. She came up with several ideas for making money, including a colorful disposable baby bottle with premeasured amounts of water and formula-something a busy mom could shake with one hand while holding a baby. She drew careful diagrams and sent them off with a patent application, but she dropped the idea when she found out it would cost several thousand dollars to make the prototype.

Eventually Deborah stopped thinking about going to school herself and instead started focusing on making sure her grandchildren and grandnieces and grandnephews got educated.

“It’s too late for Henrietta’s children,” she told me one day over the phone. “This story ain’t about us anymore. It’s about the new Lacks children.”

Two months after Deborah’s stroke, we went to Pullum’s church to watch him baptize Sonny’s nine-month-old baby granddaughter, JaBrea. There was hardly an empty seat when the sermon started. Pullum stood behind the pulpit wrapped in a long black robe with red crosses on its front, sweat beading his forehead. A blind piano player tapped his way to the piano and began to play as the congregation sang along: “Stand by me, while I run this race, for I don’t want to run this race in vain.”

Pullum pointed at me and grinned a mischievous grin. “Come stand by me!” he yelled.

“Oh girl, you in trouble now,” Deborah whispered, elbowing me in the ribs.

“I am not going up there,” I whispered back. “Just pretend like we can’t see him.”

Pullum waved his arms over his head, then pointed at the pulpit for me to join him. Deborah and I stared at the choir behind him, our faces blank, pretending not to see. Pullum rolled his eyes, then yelled into the microphone, “We have a guest with us today! Rebecca Skloot, would you stand for us this morning?”

Deborah whispered, “Uh-oh,” as the entire congregation followed his pointing finger to look at me.

I stood.

“Sister Rebecca Skloot,” Pullum said, “I know this might not be the right time for you, but it’s the right time for me.”

“Amen,” Deborah said from her seat beside me, her voice suddenly serious.

“John Hopkins took my wife’s mother’s body and used what they needed,” he yelled into the microphone. “They sold her cells all over the world! Now I’m gonna have Sister Rebecca Skloot come and talk about what she doing with my wife and them cells.”

I’d never sat in a congregation before, let alone spoken in front of one. My face flushed and my throat clenched as Deborah pushed my back to get me moving. Pullum told the congregation to give me a hand, and the room erupted in cheers. I walked to the pulpit and took the microphone from Pullum, who patted me on the back and whispered in my ear, “Just preach it in your own words.” So I did. I told the story of Henrietta’s cells and what they’d done for science, my voice growing louder as the congregation yelled “Amen!” and “Hallelujah!” and “Lord have mercy!”

“Most people think her name was Helen Lane,” I said. “But she was Henrietta Lacks. She had five children, and one of them is sitting right over there.” I pointed at Deborah. She was holding JaBrea in her lap now, grinning, tears streaming down her cheeks.

Pullum stepped forward and took the microphone, putting his arm around my shoulders and squeezing so I wouldn’t walk away.

“I was very angry with Sister Rebecca when she started calling us,” he said. “So was my wife. Then finally we said okay, but we told her, ‘You need to talk to us like we’re regular folk. You need to tell us what’s goin on.’”

Then he looked at Deborah. “The world gonna know who your mother is. But you and Sonny and the rest of Henrietta’s children, they probably won’t see real benefits from them cells.” Deborah nodded as Pullum raised his long robed arm and pointed to JaBrea, a breathtakingly beautiful baby dressed in white lace with a bow in her hair.

“This child will someday know that her great-grandmother Henrietta helped the world!” Pullum yelled. Then he pointed around the room at Davon and JaBrea’s other cousins, saying, “So will that child … and that child … and that child. This is their story now. They need to take hold of it and let it teach them they can change the world too.”

He raised his arms above his head and yelled hallelujah. Baby JaBrea waved her hands and let out a loud happy screech, and the congregation yelled amen.

38 – The Long Road to Clover (2009)

On January 18, 2009, on a cold, sunny Sunday, I pulled off the highway onto the road into Clover. As I passed one green field after the next, I thought, I don’t remember the road into Clover being so long. Then I realized I’d just passed the Clover post office—it was across the street from a big, empty field. But it used to be across the street from the rest of downtown. I didn’t understand. If that was the post office, where was everything else? I kept driving for a moment, thinking, Did they move the post office? Then it hit me.

Clover was gone.

I jumped out of the car and ran into the field, to the spot where the old movie theater once stood—where Henrietta and Cliff once watched Buck Jones films. It was gone. So was Gregory and Martin’s grocery and Abbott’s clothing store. I stood with my hand over my mouth, staring in disbelief at the empty field until I realized there were splinters of brick and small white plaster tiles pressed into the dirt and grass. I knelt down and began collecting them, filling my pockets with what remained of the town of Henrietta’s youth.

I have to send some of this to Deborah, I thought. She’s not going to believe Clover is gone. Standing on Main Street, staring at the corpse of Clover’s downtown, it felt like everything

related to Henrietta’s history was vanishing. In 2002, just one year after Gary had wrapped his hands around Deborah’s head and passed the burden of the cells on to me, he’d died suddenly at the age of fifty-two from a heart attack. He’d been walking toward Cootie’s car, carrying his best suit to put in the trunk so it wouldn’t get wrinkled on the way to Cootie’s mother’s funeral. A few months later, Deborah called to say that Cliff’s brother Fred had died from throat cancer. Next it was Day, who died of a stroke, surrounded by his family. Then Cootie, who killed himself with a shotgun to the head. Each time someone died, Deborah called crying.

I thought the calls would never end.

“Death just following us and this story everywhere we go,” she’d say. “But I’m hangin in there.”

In the years that followed the baptism, not much changed for the Lackses. Bobbette and Lawrence went on with their lives. Lawrence didn’t think about the cells much anymore, though occasionally he and Zakariyya still entertained the idea of suing Hopkins.

Sonny had a quintuple bypass in 2003, when he was fifty-six years old—the last thing he remembered before falling unconscious under the anesthesia was a doctor standing over him saying his mother’s cells were one of the most important things that had ever happened to medicine. Sonny woke up more than $125,000 in debt because he didn’t have health insurance to cover the surgery.

Zakariyya got kicked out of his assisted-living facility, then a Section Eight housing project, where he smashed a forty-ounce beer bottle over a woman’s back and pushed her through a plate-glass window. He sometimes worked with Sonny, driving a truck.

In 2004 Deborah left her husband and moved into an assisted-living apartment of her own, which she’d longed to do for years—she was tired of fighting with Pullum, plus their row house had too many stairs. After she moved out, to cover her bills, she went to work full-time for her daughter Tonya, who’d opened an assisted-living home in her house. Each morning Deborah left the assisted-living facility where she lived, and spent the day cooking and cleaning for the five or six men living in her daughter’s home. She quit after two years because her body couldn’t take walking up and down stairs all day.

When Deborah officially divorced Pullum in 2006, she had to itemize her income as part of a request for the judge to waive her filing fee. She listed $732 per month from Social Security Disability and $10 per month in food stamps. Her checking account was empty.

When I went back to visit Clover and found Main Street razed, it had been a few months since Deborah and I talked. During our last call, I’d told her that the book was done, and she’d said she wanted me to come to Baltimore and read it to her, so I could talk her through the hard parts. I’d called several times since to plan the visit, but she hadn’t returned my calls. I left messages, but didn’t push her. She needs some space to prepare herself, I thought. She’ll call when she’s ready. When I got home from Clover, I called again saying, “I brought something back for you from Clover—you won’t believe what’s happened down there.” But she didn’t call back.

On May 21, 2009, after leaving many messages, I called again. Her voice-mail box was full. So I dialed Sonny’s number to say something I’d said to him many times over the years: “Will you tell your sister to stop messing around and return my calls? I really need to talk to her. Our time is running out.” When he answered the phone I said, “Hey Sonny, it’s Rebecca,” and for a moment the line went silent.

“I’ve been trying to find your phone number,” he said, and my eyes filled with tears. I knew there was only one reason Sonny would need to call me.

Deborah had gone over to her niece’s house on Mother’s Day, a week and a half before my call—Sonny had made crab cakes for her, the grandchildren were there, and everyone laughed and told stories. After dinner he took Deborah back to the apartment she loved and said good night. She stayed home the next day, ate the leftover crab cakes Sonny sent home with her, and talked to Davon on the phone—he was learning to drive and wanted to come over in the morning to practice. The next morning when he called, she didn’t answer. A few hours later Sonny dropped by to check on her, as he did nearly every day, and found her in her bed, arms crossed on her chest, smiling. He thought she was sleeping, so he touched her arm, saying, “Dale, time to get up.” But she wasn’t sleeping.

“She’s in a better place now,” Sonny told me. “A heart attack just after Mother’s Day—she wouldn’t have wanted it another way. She’s suffered a lot in life, and now she’s happy.”

After finding Deborah in her bed, Sonny cut a lock of her hair and tucked it inside their mother’s Bible with the locks of hair from Henrietta and Elsie. “She’s with them now,” he told me. “You know there’s no place in the world she’d rather be.”

Deborah was happy when she died: her grandson Little Alfred was now twelve, headed into the eighth grade, and doing well in school. Lawrence and Bobbette’s granddaughter Erika had gotten into Penn State after writing an admissions essay about how her great=grandmother Henrietta’s story had inspired her to study science. After transferring to the University of Maryland, she earned her bachelor’s degree and entered a master’s program in psychology, becoming the first of Henrietta’s descendants to attend graduate school. At seventeen, Deborah’s grandson Davon was about to graduate from high school. He’d promised Deborah he’d go to college and continue learning about Henrietta until he knew everything there was to know about her. “That really made me feel okay about dying whenever my time come,” she’d told me.

As Sonny told me the news of Deborah’s death, I sat staring at a framed picture of her that’s been on my desk for nearly a decade. In it, her eyes are hard, her brow creased and angry. She’s wearing a pink shirt and holding a bottle of pink Benadryl. Everything else is red: her fingernails, the welts on her face, the dirt beneath her feet.

I stared at that picture for days after her death as I listened to hours of tape of us talking, and read the notes I’d taken the last time I saw her. At one point during that visit, Deborah, Davon, and I sat side by side on her bed, our backs to the wall, legs outstretched. We’d just finished watching two of Deborah’s favorite movies back-to-back: Roots and the animated movie Spirit, about a wild horse who’s captured by the U.S. Army. She wanted us to watch them together so we could see the similarities between the two—Spirit fought for his freedom just as Kunta Kinte did in Roots, she said.

“People was always tryin to keep them down and stop them from doing what they want just like people always doin with me and the story about my mother,” she said.

When the films ended, Deborah jumped out of bed and put in yet another video. She pressed PLAY and a younger version of her self appeared on the screen. It was one of nearly a dozen tapes the BBC had recorded that didn’t make it into the documentary. On the screen, Deborah sat on a couch with her mother’s Bible open in her lap, her hair brown instead of gray, her eyes bright, with no circles beneath them. As she talked, her hand stroked the long lock of her mother’s hair.

“I often visit her hair in the Bible,” Deborah said into the camera. “When I think about this hair, I’m not as lonely. I imagine, what would it be like to have a mother to go to, to laugh, cry, hug. God willing, I can be with her someday. I’m looking forward to that.”

The younger Deborah said she was glad that when she died, she wouldn’t have to tell her mother the story of everything that happened with the cells and the family, because Henrietta already knew. “She’s been watching us and seeing all that’s going on down here,” Deborah said. “She’s waiting patiently for us. There won’t be any words, just a lot of hugging and crying. I really believe she’s up in heaven, and she’s doin okay, because she did enough suffering for everyone down here. On the other side, they say there’s no pain or suffering. … I want to be there with my mother.”

Sitting between me and Davon on the bed, Deborah nodded at her younger self on the screen and said, “Heaven looks just like Clover, Virginia. My mother and I always loved it down there more than anywhere else in the world.”

She stroked Davon’s hair. “I don’t know how I’m going to go,” she said. “I just hope it’s nice and calm. But I tell you one thing, I don’t want to be immortal if it mean living forever, cause then everybody else just die and get old in front of you while you stay the same, and that’s just sad.” Then she smiled. “But maybe I’ll come back as some HeLa cells like my mother, that way we can do good together out there in the world.” She paused and nodded again. “I think I’d like that.”

Photo Insert

Where They Are Now

Alfred Carter Jr., Deborah’s son, is in prison, serving a thirty-year sentence for robbery with a dangerous and deadly weapon, and first-degree assault with a handgun. While incarcerated, he went through drug and alcohol rehabilitation, got his GED, and taught GED classes to other inmates for twenty-five dollars a month. In 2006 he wrote to the judge who sentenced him, saying he wanted to pay back the money he stole and needed to know who to send it to.

Dr. Sir Lord Keenan Kester Cofield’s whereabouts are unknown. Most recently, he served several years in prison for trying to buy jewelry at Macy’s with a stolen check, and filed several lawsuits while incarcerated. In 2008, after being released from prison, Cofield filed a seventy-five-page lawsuit—his last to date—that a judge called “incomprehensible.” He sued 226 parties for more than $10 billion, and argued that past decisions in all his cases should be reversed in his favor, and that anyone who’d printed his name without permission should be included in his suit, because he’d copyrighted his name. I was never able to get in touch with him to interview him for this book.

Cliff Garret, Henrietta’s cousin, lived in his farmhouse in Clover until 2009, when his failing health required him to move in with his son in Richmond, Virginia, where he currently lives.

HeLa is still one of the most commonly used cell lines in laboratories around the world. When this book went to press in 2009, more than 60,000 scientific articles had been published about research done on HeLa, and that number was increasing steadily at a rate of more than 300 papers each month. HeLa cells are still contaminating other cultures and causing an estimated several million dollars in damage each year.

Howard Jones, Henrietta’s doctor, is an emeritus professor at Johns Hopkins and Eastern Virginia Medical School. He founded the Jones Institute for Reproductive Medicine in Norfolk, Virginia, with his late wife, Georgeanna. They were pioneers in the field of infertility treatments, and were responsible for the first test-tube baby born in the United States. When this book went to press, he was ninety-nine years old.

Mary Kubicek is retired and living in Maryland.

Zakariyya, Sonny, and Lawrence Lacks were deeply affected by Deborah’s death. Lawrence charged more than $6,000 to his credit cards to cover the cost of her burial, and when this book went to press, Sonny was saving money to buy her a tombstone. Zakariyya stopped drinking and began studying the lives of yogis and others who’d achieved inner peace. He started spending more time with his family, including his many nieces and nephews, who hug and kiss him on a regular basis. He smiles often. Sonny has sworn to uphold Deborah’s desire to gain recognition for their mother. Today, when the Lacks brothers talk about Henrietta, they focus on the importance of her contribution to science. They no longer talk about suing Johns Hopkins, though Lawrence and Zakariyya still believe they’re owed a share of the profits from HeLa cells.

Christoph Lengauer is Global Head of Oncology Drug Discovery at sanofiaventis, one of the biggest pharmaceutical companies in the world. Many of the scientists working for him use HeLa cells on a routine basis. He lives in Paris, France.

Davon Meade and (Little) Alfred Jr., Deborah’s grandsons, live in Baltimore, as do twenty-two of Henrietta’s other descendants, including her grandchildren, great-grandchildren, and great-great-grandchildren. Two others live in California.

John Moore appealed to the U.S. Supreme Court, which refused to hear his case. He died in 2001.

Roland Pattillo is a professor at Morehouse School of Medicine, where he continues to hold his HeLa conference in Henrietta’s honor each year. Pattillo and his wife, Pat, plan to buy marker for Henrietta’s grave, to be placed near her mother’s tombstone in the Lacks family cemetery.

James Pullum, Deborah’s ex-husband, is still preaching in Baltimore.

Courtney Speed still runs her grocery store, where she continues to teach local children to do math, and hopes to open a Henrietta Lacks Museum.

Afterword

When I tell people the story of Henrietta Lacks and her cells, their first question is usually Wasn’t it illegal for doctors to take Henrietta’s cells without her knowledge? Don’t doctors have to tell you when they use your cells in research? The answer is no—not in 1951, and not in 2009, when this book went to press.

Today most Americans have their tissue on file somewhere. When you go to the doctor for a routine blood test or to have a mole removed, when you have an appendectomy, tonsillectomy, or any other kind of ectomy, the stuff you leave behind doesn’t always get thrown out. Doctors, hospitals, and laboratories keep it. Often indefinitely.

In 1999 the RAND Corporation published a report (the first and, so far, last of its kind) with a “conservative estimate” that more than 307 million tissue samples from more than 178 million people were stored in the United States alone. This number, the report said, was increasing by more than 20 million samples each year. The samples come from routine medical procedures, tests, operations, clinical trials, and research donations. They sit in lab freezers, on shelves, or in industrial vats of liquid nitrogen. They’re stored at military facilities, the FBI, and the National Institutes of Health. They’re in biotech company labs and most hospitals. Biobanks store appendixes, ovaries, skin, sphincters, testicles, fat, even foreskins from most circumcisions. They also house blood samples taken from most infants born in the United States since the late sixties, when states started mandating the screening of all newborns for genetic diseases.

And the scale of tissue research is only getting bigger. “It used to be, some researcher in Florida had sixty samples in his freezer, then another guy in Utah had some in his,” says Kathy Hudson, a molecular biologist who founded the Genetics and Public Policy Center at Johns Hopkins University and is now chief of staff at NIH. “Now we’re talking about a massive, massive scale.” In 2009 the NIH invested $13.5 million to develop a bank for the samples taken from new borns nationwide. A few years ago the National Cancer Institute started gathering what it expects will be millions of tissue samples for mapping cancer genes; the Genographic Project began doing the same to map human migration patterns, as did the NIH to track disease genes. And for several years the public has been sending samples by the millions to personalized DNA testing companies like 23andMe, which only provide customers with their personal medical or genealogical information if they first sign a form granting permission for their samples to be stored for future research.

Scientists use these samples to develop everything from flu vaccines to penis-enlargement products. They put cells in culture dishes and expose them to radiation, drugs, cosmetics, viruses, household chemicals, and biological weapons, and then study their responses. Without those tissues, we would have no tests for diseases like hepatitis and HIV; no vaccines for rabies, smallpox, measles; none of the promising new drugs for leukemia, breast cancer, colon cancer. And developers of the products that rely on human biological materials would be out billions of dollars.

How you should feel about all this isn’t obvious. It’s not as if scientists are stealing your arm or some vital organ. They’re using tissue scraps you parted with voluntarily. Still, that often involves someone taking part of you. And people often have a strong sense of ownership when it comes to their bodies. Even tiny scraps of them. Especially when they hear that someone else might be making money off those scraps, or using them to uncover potentially damaging information about their genes and medical histories. But a feeling of ownership doesn’t hold up in court. And at this point no case law has fully clarified whether you own or have the right to control your tissues. When they’re part of your body, they’re clearly yours. Once they’re excised, your rights get murky.

Kathy Hudson, who has conducted focus groups about the public’s feelings on the tissue issue, says she believes that tissue rights have the potential to become a bona fide movement.

“I could see people starting to say, ‘No, you can’t take my tissues,’ “ she told me. “All I can say is, we better deal with the problems now instead of waiting until that happens.”

There are, essentially, two issues to deal with: consent and money. For most people, knowing if and how their tissues are being used in research is a far bigger issue than profiting from them. Yet when this book went to press, storing blood and tissues for research did not legally require informed consent, because the law governing such things doesn’t generally apply to tissue research.

The Federal Policy for the Protection of Human Subjects, also known as the Common Rule, requires informed consent for all human-subject research. But in practice, most tissue research isn’t covered because: (i) it’s not federally funded, or (2) the researcher never learns the identity of the “donors” or has firsthand contact with them, in which case it’s not considered research on humans. So in the end, the Common Rule doesn’t actually govern most tissue research.

Today, if doctors want to gather tissues from patients strictly for research purposes—as in Henrietta’s case—they are required to get informed consent. But storing tissues from diagnostic procedures like, say, mole biopsies, and using them in future research doesn’t require such consent. Most institutions still choose to get permission, but there’s no uniformity in the way that’s done. A few hand out enough information to fill a small book, explaining exactly what will be done with all patient tissues. But most just include a short line in an admission form saying that any tissues removed may be used for education or research.

According to Judith Greenburg, director of the Division of Genetics and Developmental Biology at the National Institute of General Medical Science, the NIH now has “very stringent guidelines” requiring consent for any tissues collected for their banks. “It’s very important for donors to understand what the consequences of tissue research might be,” she says. But their guidelines apply only to NIH research, and they’re not legally binding.

Supporters of the status quo argue that passing new, tissue-specific legislation is unnecessary, and that the current oversight practices are enough. They point to institutional review boards; the many professional guidelines, like the American Medical Association’s Code of Ethics (which requires doctors to inform patients if their tissue samples will be used in research or lead to profits); and several post Nuremberg codes, including the Declaration of Helsinki and the Belmont Report, all of which list consent as a requirement. But guidelines and ethical codes aren’t laws, and many tissue-rights supporters say internal review doesn’t work.

Beyond simply knowing their tissues are being used in research, some tissue-rights activists believe donors should have the right to say, for example, that they don’t want their tissues used for research on nuclear weapons, abortion, racial differences, intelligence, or anything else that might run contrary to their beliefs. They also believe it’s important for donors to be able to control who has access to their tissues, because they worry that information gathered from tissue samples might be used against them.

In 2005, members of the Native American Havasupai Tribe sued Arizona State University after scientists took tissue samples the tribe donated for diabetes research and used them without consent to study schizophrenia and inbreeding. Their case is still pending. In 2006, some seven hundred new mothers found out that doctors had taken their placentas without consent to test for abnormalities that might help the hospital defend itself against future lawsuits over birth defects. And in a handful of cases, genetic tests performed on people without their consent have been used to deny workers’ compensation or health insurance claims (something now protected against by the Genetic Information Nondiscrimination Act of 2008). Because of cases like these, a growing number of activists—ethicists, lawyers, doctors, and patients—are arguing cases and pushing for new regulations that would grant people the right to control their tissues. And a growing number of tissue “donors” are suing for control of their samples and the DNA inside them. In 2005, six thousand patients demanded that Washington University remove their tissue samples from its prostate-cancer bank. The university refused, and the samples were tied up in litigation for years. So far, two courts have ruled against the patients, relying on the same logic used in the Moore case (that giving patients those rights would inhibit research, etc). In 2008 the patients appealed to the Supreme Court, which refused to hear their case. When this book went to press, they were contemplating class action. Most recently, in July 2009, parents in Minnesota and Texas sued to stop the nationwide practice of storing and conducting research—without consent—on fetal blood samples, many of which can be traced back to the infants they came from. They argue that research on those samples is an invasion of their children’s privacy.

Because of the Health Insurance Portability and Accountability Act (HIPAA) of 1996, there is now clear federal law in place to prevent the kind of privacy violation that happened to the Lacks family when doctors at Hopkins released Henrietta’s name and her medical records. Since tissues connected to their donors’ names are subject to strict regulation under the Common Rule, samples are no longer named using donor initials as Henrietta’s cells were; today they’re usually identified by code numbers. But, as Judith Greenburg of the NIH says, “It’s never possible to one-hundred-percent guarantee anonymity, because in theory we can now sequence genes and find out who anyone is from their cells. So the consent process has to be more about laying out the risks of tissue research so people can decide whether they want to participate.”

Ellen Wright Clayton, a physician and lawyer who is director of the Center for Biomedical Ethics and Society at Vanderbilt University, says there needs to be a “very public conversation” about all of this. She says, “If someone presented a bill in Congress that said, ‘As of today, when you go to the doctor for health care, your medical records and tissue samples can be used for research and nobody has to ask you’—if the issue were stated that bluntly so people could really understand what’s happening and say they’re okay with it, that would make me more comfortable with what we’re currently doing. Because what’s happening now is not what people think is going on.”

Lori Andrews, director of the Institute for Science, Law and Technology at the Illinois Institute of Technology, wants something more drastic: she has called for people to get policy-makers’ attention by becoming “conscientious objectors in the DNA draft” and refusing to give tissue samples.

David Korn, vice provost for research at Harvard University, argues that giving patients control over their tissues is shortsighted. “Sure,” he says, “consent feels nice. Letting people decide what’s going to happen with their tissue seems like the right thing to do. But consent diminishes the value of tissue.” To illustrate this, Korn points to the Spanish flu pandemic. In the 1990s, scientists used stored tissue samples from a soldier who died in 1918 to recreate the virus’s genome and study why it was so deadly, with hopes of uncovering information about the current avian flu. In 1918, asking that soldier’s permission to take tissues for this kind of future research would have been impossible, Korn says. “It was an inconceivable question—no one even knew what DNA was!”

For Korn, the consent issue is overshadowed by a public responsibility to science: “I think people are morally obligated to allow their bits and pieces to be used to advance knowledge to help others. Since everybody benefits, everybody can accept the small risks of having their tissue scraps used in research.” The only exception he would make is for people whose religious beliefs prohibit tissue donation. “If somebody says being buried without all their pieces will condemn them to wandering forever because they can’t get salvation, that’s legitimate, and people should respect it,” Korn says. But he acknowledges that people can’t raise those objections if they don’t understand their tissues are being used in the first place.

“Science is not the highest value in society,” Andrews says, pointing instead to things like autonomy and personal freedom. “Think about it,” she says. “I decide who gets my money after I die. It wouldn’t harm me if I died and you gave all my money to someone else. But there’s something psychologically beneficial to me as a living person to know I can give my money to whoever I want. No one can say, ‘She shouldn’t be allowed to do that with her money because that might not be most beneficial to society’ But replace the word money in that sentence with tissue, and you’ve got precisely the logic many people use to argue against giving donors any control over their tissues.”

Wayne Grody, director of the Diagnostic Molecular Pathology Lab oratory at the University of California, Los Angeles, was once a fierce opponent of consent for tissue research. But after years of debating people like Andrews and Clayton, he’s become more moderate. “I’m pretty convinced that we should go the extra mile to have a good and complex consent process,” he told me. Still, he can’t imagine how it would work. “These tissues enter a pipeline of millions of other samples,” he said. “How are you going to distinguish, well, this patient said we can study colon cancer; the next one said we can do anything we want, but we can’t commercialize it. I mean, do they all have to be colorcoded?” Regardless, Grody stresses that questions of consent should apply only to the collection of future samples, not the millions already stored, including HeLa. “What are we going to do,” he says, “throw them all out?”

If the issue of consent isn’t addressed, Robert Weir, founder of the biomedical ethics center at the University of Iowa, sees only one outcome: “Patients turn to law as a last resort when they don’t see their participation being acknowledged.” Weir favors fewer lawsuits and more disclosure. “Let’s get these things on the table and come up with legal guidelines we can all live with,” he says. “Because going to court is the only other option.” And court is where these cases often end up, particularly when they involve money.

When it comes to money, the question isn’t whether human tissues and tissue research will be commercialized. They are and will continue to be; without commercialization, companies wouldn’t make the drugs and diagnostic tests so many of us depend on. The question is how to deal with this commercialization—whether scientists should be required to tell people their tissues may be used for profit, and where the people who donate those raw materials fit into that marketplace.

It’s illegal to sell human organs and tissues for transplants or medical treatments, but it’s perfectly legal to give them away while charging fees for collecting and processing them. Industry-specific figures don’t exist, but estimates say one human body can bring in anywhere from $10,000 to nearly $150,000. But it’s extremely rare for individual cells from one person to be worth millions like John Moore’s. In fact, just as one mouse or one fruit fly isn’t terribly useful for research, most individual cell lines and tissue samples aren’t worth anything on their own. Their value for science comes from being part of a larger collection.

Today, tissue-supply companies range from small private businesses to huge corporations, like Ardais, which pays the Beth Israel Deaconess Medical Center, Duke University Medical Center, and many others an undisclosed amount of money for exclusive access to tissues collected from their patients.

“You can’t ignore this issue of who gets the money and what the money is used for,” says Clayton. “I’m not sure what to do about it, but I’m pretty sure it’s weird to say everybody gets money except the people providing the raw material.”

Various policy analysts, scientists, philosophers, and ethicists have suggested ways to compensate tissue donors: creating a Social Securitylike system in which each donation entitles a person to increasing levels of compensation; giving donors tax write-offs; developing a royalty system like the one used for compensating musicians when their songs are played on the radio; requiring that a percentage of profits from tissue research go to scientific or medical charities, or that all of it be funneled back into research.

Experts on both sides of the debate worry that compensating patients would lead to profit-seekers inhibiting science by insisting on unrealistic financial agreements or demanding money for tissues used in noncommercial or nonprofit research. But in the majority of cases, tissue donors haven’t gone after profits at all. They, like most tissue-rights activists, are less concerned about personal profits than about making sure the knowledge scientists gain by studying tissues is available to the public, and to other researchers. In fact, several patient groups have created their own tissue banks so they can control the use of their tissues and the patenting of discoveries related to them, and one woman became a patent holder on the disease gene discovered in her children’s tissues, which lets her determine what research is done on it and how it’s licensed.

Gene patents are the point of greatest concern in the debate over ownership of human biological materials, and how that ownership might interfere with science. As of 2005—the most recent year figures were available—the U.S. government had issued patents relating to the use of about 20 percent of known human genes, including genes for Alzheimer’s, asthma, colon cancer, and, most famously, breast cancer. This means pharmaceutical companies, scientists, and universities control what research can be done on those genes, and how much resulting therapies and diagnostic tests will cost. And some enforce their patents aggressively: Myriad Genetics, which holds the patents on the BRCA1 and BRCA2 genes responsible for most cases of hereditary breast and ovarian cancer, charges $3,000 to test for the genes. Myriad has been accused of creating a monopoly, since no one else can offer the test, and researchers can’t develop cheaper tests or new therapies without getting permission from Myriad and paying steep licensing fees. Scientists who’ve gone ahead with research involving the breast-cancer genes without Myriad’s permission have found themselves on the receiving end of cease-and-desist letters and threats of litigation.

In May 2009 the American Civil Liberties Union, several breast-cancer survivors, and professional groups representing more than 150,000 scientists sued Myriad Genetics over its breast-cancer gene patents. Among other things, scientists involved in the case claim that the practice of gene patenting has inhibited their research, and they aim to stop it. The presence of so many scientists in the suit, many of them from top institutions, challenges the standard argument that ruling against biological patents would interfere with scientific progress.

Lori Andrews, who has worked pro bono on all of the most important biological ownership cases to date, including the current breast cancer gene suit, says that many scientists have interfered with science in precisely the way courts always worried tissue donors might do. “It’s ironic,” she told me. “The Moore court’s concern was, if you give a person property rights in their tissues, it would slow down research because people might withhold access for money. But the Moore decision backfired—it just handed that commercial value to researchers.” According to Andrews and a dissenting California Supreme Court judge, the ruling didn’t prevent commercialization; it just took patients out of the equation and emboldened scientists to commodify tissues in increasing numbers. Andrews and many others have argued that this makes scientists less likely to share samples and results, which slows research; they also worry that it interferes with health-care delivery.

There is some evidence to support their claim. One survey found that 53 percent of laboratories had stopped offering or developing at least one genetic test because of patent enforcement, and 67 percent felt patents interfered with medical research. Because of patent licensing fees, it costs $25,000 for an academic institution to license the gene for researching a common blood disorder, hereditary haemochromatosis, and up to $250,000 to license the same gene for commercial testing. At that rate, it would cost anywhere from $46.4 million (for academic institutions) to $464 million (for commercial labs) to test one person for all known genetic diseases.

The debate over the commercialization of human biological materials always comes back to one fundamental point: like it or not, we live in a market-driven society, and science is part of that market. Baruch Blumberg, the Nobel Prize-winning researcher who used Ted Slavin’s antibodies for hepatitis B research, told me, “Whether you think the commercialization of medical research is good or bad depends on how into capitalism you are.” On the whole, Blumberg said, commercialization is good; how else would we get the drugs and diagnostic tests we need? Still, he sees a downside. “I think it’s fair to say it’s interfered with science,” he said. “It’s changed the spirit.” Now there are patents and proprietary information where there once was free information flow. “Researchers have become entrepreneurs. That’s boomed our economy and created incentives to do research. But it’s also brought problems, like secrecy and arguments over who owns what.”

Slavin and Blumberg never used consent forms or ownership-transfer agreements; Slavin just held up his arm and gave samples. “We lived in a different ethical and commercial age,” Blumberg said. He imagines patients might be less likely to donate now: “They probably want to maximize their commercial possibilities just like everyone else.”

All the important science Blumberg has done over the years depended on free and unlimited access to tissues. But Blumberg says he doesn’t think keeping patients in the dark is the way to get that access: “For somebody like Ted who really needed that money to survive, it would have been wrong to say scientists could commercialize those antibodies, but he couldn’t. You know, if someone was going to make money off his antibodies, why shouldn’t he have a say in that?”

Many scientists I’ve talked to about this issue agree. “This is a capitalist society,” says Wayne Grody “People like Ted Slavin took advantage of that. You know, the way I see it is, if you think of doing that on the front end, more power to you.”

The thing is, people can’t “think of doing that on the front end” unless they know their tissues might be valuable to researchers in the first place. The difference between Ted Slavin, John Moore, and Henrietta Lacks was that someone told Slavin his tissues were special and that scientists would want to use them in research, so he was able to control his tissues by establishing his terms before anything left his body. In other words, he was informed, and he gave consent. In the end, the question is how much science should be obligated (ethically and legally) to put people in the position to do the same as Slavin. Which brings us back to the complicated issue of consent.

Just as there is no law requiring informed consent for storing tissues for research, there is no clear requirement for telling donors when their tissues might result in profits. In 2006 an NIH researcher gave thousands of tissue samples to the pharmaceutical company Pfizer in exchange for about half a million dollars. He was charged with violating a federal conflict of interest law, not because he failed to disclose his financial interest or the value of those tissues to the donors, but because federal researchers aren’t allowed to take money from pharmaceutical companies. His case resulted in a congressional investigation and later a hearing; the possible interests of the patients, and their lack of knowledge of the value of their samples, wasn’t mentioned at any point in the process.

Though the judge in the John Moore case said patients must be told if their tissues have commercial potential, there was no law enacted to enforce that ruling, so it remains only case law. Today the decision to disclose this information is up to the institution, and many choose not to tell patients. Some consent forms don’t mention money at all; others come right out and say, “We may give or sell the specimen and certain medical information about you.” Others simply say, “You will receive no reimbursement for donating tissue.” Still others embrace confusion: “Your sample will be owned by [the university]. … It is unknown whether you will be able to gain (participate in) any financial compensation (payment) from any benefits gained from this research.”

Tissue-rights activists argue that it’s essential to disclose any potential financial gain that might come from people’s tissues. “This isn’t about trying to get patients a cut of the financial action,” says Lori Andrews. “It’s about allowing people to express their desires.” Clayton agrees, but says, “The fundamental problem here isn’t the money; it’s the notion that the people these tissues come from don’t matter.”

After the Moore case, Congress held hearings and commissioned reports that uncovered the millions of dollars being made from human tissue research, and it formed a special committee to assess the situation and recommend how to proceed. Its findings: the use of human cells and tissues in biotechnology holds “great promise” for improving human health, but raises extensive ethical and legal questions that “have not been answered” and to which “no single body of law, policy or ethics applies.” This, they said, must be clarified.

In 1999, President Clinton’s National Bioethics Advisory Commission (NBAC) issued a report saying that federal oversight of tissue research was “inadequate” and “ambiguous.” It recommended specific changes that would ensure patients’ rights to control how their tissues were used. It skirted the issue of who should profit from the human body, saying simply that the issue “raises a number of concerns,” and should be investigated further. But little happened.

Years later, I asked Wayne Grody, who was in the thick of the debate in the nineties, why the congressional recommendations and NBAC report seemed to have vanished.

“It’s weird, but I have no idea,” he said. “If you can figure that out, I’d like to know. We all just wanted to forget about it, like if we ignored it, maybe it would just go away.” But it didn’t. And given the steady flow of court cases related to tissues, the issue isn’t going away anytime soon.

Despite all the other cases and the press they’ve received, the Lacks family has never actually tried to sue anyone over the HeLa cells. Several lawyers and ethicists have suggested to me that since there is no way to anonymize HeLa cells at this point, research on them should be covered by the Common Rule. And since some of the DNA present in Henrietta’s cells is also present in her children, it’s possible to argue that by doing research on HeLa, scientists are also doing research on the Lacks children. Since the Common Rule says that research subjects must be allowed to withdraw from research at any time, these experts have told me that, in theory, the Lacks family might be able to withdraw HeLa cells from all research worldwide. And in fact, there are precedents for such a case, including one in which a woman successfully had her father’s DNA removed from a database in Iceland. Every researcher I’ve mentioned that idea to shudders at the thought of it. Vincent Racaniello, a professor of microbiology and immunology at Columbia University, who once calculated that he’s grown about 800 billion HeLa cells for his own research, says that restricting HeLa cell use would be disastrous. “The impact that would have on science is inconceivable,” he said.

As for the Lackses, they have few legal options. They couldn’t sue over the cells being taken in the first place for several reasons, including the fact that the statute of limitations passed decades ago. They could attempt to stop HeLa research through a lawsuit, arguing that it’s impossible to anonymize Henrietta’s cells, which contain their DNA. But many legal experts I’ve talked with doubt such a case would succeed. Regardless, the Lackses aren’t interested in stopping all HeLa research. “I don’t want to cause problems for science,” Sonny told me as this book went to press. “Dale wouldn’t want that. And besides, I’m proud of my mother and what she done for science. I just hope Hopkins and some of the other folks who benefited off her cells will do something to honor her and make right with the family.”

Dedication

For my family:
My parents, Betsy and Floyd; their spouses, Terry and Beverly;
my brother and sister-in-law, Matt and Renee;
and my wonderful nephews, Nick and Justin.
They all did without me for far too long because of this book,
but never stopped believing in it, or me. And in loving memory of my grandfather,
James Robert Lee (1912–2003),
who treasured books more than anyone I’ve known.

Acknowledgments

Time and time again, I saw people energized by the story of Henrietta and her cells—energized, and filled with the desire to do something to show their thanks for her contribution to science, and make amends to her family. Many of those people put that energy into helping me with this book. My gratitude goes out to everyone who devoted time, knowledge, money, and heart to this project. I do not have room to name all of you here, but I could not have written this book without you.

First and foremost, I owe endless thanks to Henrietta Lacks’s family.

Deborah was the soul of this book—her spirit, her laughter, her pain, her determination, and her unbelievable strength were an inspiration that helped keep me working all these years. I feel deeply honored to have been part of her life.

I thank Lawrence and Zakariyya for their trust and their stories, and Sonny, for seeing the value of this project and being its backbone within the family. I thank him for his honesty, his never-ending optimism, and for believing I could and would write this book.

Deborah’s grandsons, Davon and Alfred, were incredibly supportive of Deborah’s quest to learn about her mother and her sister. I thank them for keeping us laughing and for answering my many questions. Bobbette Lacks, a strong woman who has helped hold the Lacks family together for decades, put up with hours of interviews and many requests for documents, and she never held back when it came to sharing her stories. I’m grateful to Sonny’s ever-reliable daughter, Jeri Lacks-Whye, who tracked down facts and photos, and often wrangled her big extended family on my behalf. I thank her and her mother, Shirley Lacks, as well as Lawrence’s granddaughters Erika Johnson and Courtnee Simone Lacks, and Deborah’s son, Alfred Carter Jr., for their openness and enthusiasm. James Pullum’s support was unwavering; I thank him for his stories, his laughter, and his prayers. The same is true for Gary Lacks, who sang beautiful hymns into my telephone voice mail, and never failed to serenade me on my birthday.

Recreating the life of Henrietta Lacks wouldn’t have been possible without the generous help of her family, friends, and neighbors, particularly Fred Garret, Howard Grinnan, Hector “Cootie” Henry, Ben Lacks, Carlton Lacks, David “Day” Lacks Sr., Emmett Lacks, Georgia Lacks, Gladys Lacks, Ruby Lacks, Thurl Lacks, Polly Martin, Sadie Sturdivant, John and Dolly Terry, and Peter Wooden. Special thanks to Cliff Garret, a wonderful storyteller who helped bring Henrietta’s youth and old Clover to life for me, and always made me smile. Thanks also to Christine Pleasant Tonkin, a distant relative of Henrietta Lacks who traced the Pleasant side of Henrietta’s family back to its slave ancestors and generously shared her research with me; she also read the manuscript and provided many valuable suggestions. And to Courtney Speed for her enthusiasm, for sharing her story, and for gathering others to talk with me.

I feel lucky to have found Mary Kubicek, whose sharp memory, tireless patience, and enthusiasm were invaluable. The same is true of George Gey Jr. and his sister, Frances Greene. I’m very fortunate that they spent much of their childhood in the Gey lab with their parents and were able to bring those years to life for me. Thanks also to Frances’s husband, Frank Greene.

I’m very grateful to the many librarians and archivists who took the time to track down old newspaper and journal articles, photos, videos, and other resources. Special thanks to Andy Harrison, curator of the George Gey collection at the Alan Mason Chesney Medical Archives; to former University of Pittsburgh library sciences students Amy Notarius and Elaina Vitale; to Frances Woltz, who provided me with a wealth of information and stories; and to Hap Hagood, Phoebe Evans Letocha, and Tim Wisniewski. David Smith at the New York Public Library helped me as he has many other lucky writers, and secured me a quiet workspace in the library’s Wertheim Study. David Rose, archivist for the March of Dimes Foundation, took such a deep interest in this book that he conducted hours’ worth of helpful research on my behalf. To him I owe tremendous gratitude (and lunch).

Hundreds of people gave generously of their time for interviews, and I thank them all, particularly George Annas, Laure Aurelian, Baruch Blumberg, Ellen Wright Clayton, Nathanial Comfort, Louis Diggs, Bob Gellman, Carol Greider, Michael Grodin, Wayne Grody, Cal Harley, Robert Hay, Kathy Hudson, Grover Hutchins, Richard Kidwell, David Korn, Robert Kurman, John Masters, Stephen O’Brien, Anna O’Connell, Robert Pollack, John Rash, Judith Greenberg, Paul Lurz, Todd Savitt, Terry Sharrer, Mark Sobel, Robert Weir, Barbara Wyche, and Julius Youngner. For their time, encouragement, and expertise I give special thanks to Lori Andrews, Ruth Faden, and Lisa Parker, who spurred my thinking with early conversations, and read the manuscript, offering helpful comments. Thanks also to Duncan Wilson, who provided me with an early version of his dissertation and some very helpful research materials.

Several scientists deserve special thanks: Howard W Jones, Victor McKusick, and Susan Hsu shared invaluable memories; all were unflinchingly honest and patient with my many questions. Leonard Hayflick spent more than a dozen hours on the phone with me, often taking my calls when he was traveling or in the midst of his own work. His memory and scientific expertise were a tremendous resource. He offered extremely valuable comments on a draft of this book, as did Robert Stevenson, who supported this project from the beginning, when not all scientists did. He was an enormous asset.

I’m grateful to Roland Pattillo for taking the time to figure me out, for believing in me, for schooling me, and for helping me contact Deborah. He and his wife, Pat, opened themselves and their home to me early on, and have been supportive since. They also read a draft of the book and offered helpful suggestions.

Christoph Lengauer’s passion and his willingness to be swept into the Lackses’ story were inspiring. I thank him for his patience, openness, and forward thinking. He answered many questions and read this book in draft form, offering honest and extremely helpful feedback. Several writers who have covered the HeLa story were generous with their time. Michael Gold wrote about the contamination story in great detail in his book, A Conspiracy of Cells, which was a wonderful resource. It was always a joy to talk with Michael Rogers, whose 1976 Rolling Stone article about HeLa was an important resource when I began working on this book. Harriet Washington, author of Medical Apartheid, has been a wonderful champion of this book; she talked with me about her experience interviewing the Lacks family for a 1994 Emerge article, and offered helpful comments on a draft of the book.

Special thanks to Ethan Skerry and Lowenstein Sandler PC for the pro bono work they did to help me establish the Henrietta Lacks Foundation. Thanks to the University of Memphis for a grant that helped with final research and fact-checking for this book. I’m grateful to both my students and colleagues, particularly Kristen Iversen and Richard Bausch, wonderful teachers, writers, and friends. Special thanks to John Cal derazzo and Lee Gutkind for more than a decade of encouragement, support, and close friendship. John realized I was a writer long before I did, and has always been an inspiration. Lee taught me to care deeply about story structure and gave me entrée into the worlds of professional writing, and working at 5:00 A.M. Many thanks also to Donald Defler, for introducing me to Henrietta, and teaching biology with passion.

This book was intensively fact-checked. As part of that process, many experts read it before publication to help ensure its accuracy. I thank them for their time and valuable feedback: Erik Angner (a close friend and strong supporter of this book from its inception), Stanley Gartler, Linda MacDonald Glenn, Jerry Menikoff, Linda Griffith, Miriam Kelty (who also provided helpful documents from her personal archive), Joanne Manaster (aka @sciencegoddess), Alondra Nelson (who deserves special thanks for her honesty, and for saving me from a serious omission), Rich Purcell, Omar Quintero (who also provided beautiful HeLa photos and video footage for the book and its website), Laura Stark, and Keith Woods. Thanks also to the many people who read selected chapters, particularly Nathaniel Comfort and Hannah Landecker (whose extensive work on HeLa and the history of cell culture, especially her book, Culturing Life, was a tremendous resource).

Every writer should be lucky enough to find an expert source as generous with his time as Vincent Racaniello. He read multiple drafts, sent many resources, and offered invaluable feedback. His belief in the importance of communicating science to the general public in an accurate and accessible way (witnessed in his “This Week in Virology” podcasts at TWiV.tv and his Twitter feed @profvrr) is a great model for other scientists. The same is true for David Kroll (@abelpharmboy), a big supporter of this book, who writes about science on his blog, Scienceblogs.com/terrasig. He provided helpful feedback and research material, and even took his scanner to a library to gather a few key documents for me. I feel very fortunate to call him a friend.

My graduate assistant Leigh Ann Vanscoy dove into her job with great enthusiasm, working hard to track down photos and permissions, and helping with fact-checking during the final hours. Pat Walters (patwalters.net), research assistant extraordinaire, talented young writer and reporter, and good friend, fact-checked this entire book and devoted himself to the process with unparalleled enthusiasm, precision, and attention to detail. He dug out hard-to-find facts, and his work saved me from numerous errors (including my apparent inability to do basic math). This book benefited greatly from his contributions. I’m lucky to have found him, and I look forward to seeing his bright future unfold.

Several other people helped with research and fact-checking and I thank them all. The great Charles Wilson at The New York Times Magazine fact-checked the portions of this book that originally appeared in the magazine, and was a joy to work with. Heather Harris acted as my stand-in when I couldn’t get to Baltimore, doggedly gathering court and archival documents, often on short notice. Av Brown of yourmaninthestacks.com was, indeed, my man in the stacks, always thorough and fast with research requests. Paige Williams swooped in to help with some last-minute fact-checking in the midst of her own busy writing career. And my longtime friend Lisa Thorne deserves special thanks (and probably some wrist splints) for transcribing the majority of my interview tapes and offering wonderful commentary on what she heard.

I’m thankful to many great reporters, writers, and editors who offered encouragement, advice, feedback, and friendship along the way, particularly Jad Abumrad, Alan Burdick, Lisa Davis, Nicole Dyer, Jenny Everett, Jonathan Franzen, Elizabeth Gilbert, Cindy Gill, Andrew Hearst, Don Hoyt Gorman, Alison Gwinn, Robert Krulwich, Robin Marantz Henig, Mark Jannot, Albert Lee, Erica Lloyd, Joyce Maynard, James McBride, Robin Michaelson, Gregory Mone, Michael Moyer, Scott Mowbray, Katie Orenstein, Adam Penenberg, Michael Pollan, Corey Powell, Mark Rotella, Lizzie Skurnick, Stacy Sullivan, Paul Tough, Jonathan Weiner, and Barry Yeoman. Special thanks to Dinty W. Moore, Diana Hume George, and the many other wonderful writers I taught with at the now-sadly-defunct Mid-Atlantic Creative Nonfiction Summer Writers Conference. I miss you all. Thanks also to the editors who worked with me on my early stories related to the book: Patti Cohen at the New York Times, Sue De Pasquale at Johns Hopkins Magazine, Sally Flecker at Pitt Magazine, and James Ryerson at The New York Times Magazine, who always makes my work better. Also to my fellow bloggers on ScienceBlogs.com, the ever helpful and inspiring Invisible Institute, the amazing Birders, and my wonderful Facebook and Twitter friends, who provided resources, laughter, encouragement, and celebration of moments big and small. Thanks also to Jon Gluck for helpful early editorial advice. And to Jackie Heinze, who amazingly gave me her car so I could disappear into the middle of nowhere for months to write. Special thanks to Albert French, who helped me take the first difficult steps toward writing this book by challenging me to a race and letting me win. I owe deep gratitude to all of my former colleagues on the National Book Critics Circle board of directors, whose devotion to great books helped keep me inspired, motivated, and thinking critically. Special thanks to Rebecca Miller, Marcela Valdes, and Art Winslow, who provided years of encouragement, read drafts of the book, and offered insightful comments. As did John Freeman, who I thank for the hours we spent talking about writing and this book, and for Ford and friendship.

My agent, Simon Lipskar at Writers House, has my endless thanks for fighting with and for me when others wouldn’t, for being a rock star and a friend. I knew there was a reason I liked you. As is true for many books these days, mine struggled to find its way to press. Three publishing houses and four editors later, I feel extremely lucky to have landed at Crown with Rachel Klayman as my editor. She inherited my book, immediately adopted it as her own, and never faltered in her support of it. She devoted more of her time and heart to this book than I could have dreamed of. Every writer should be fortunate enough to work with such a talented editor, and to have a publishing house as devoted as Crown has been. I’m deeply grateful to everyone on Team Immortal at Crown: their passion for this book and the incredible work they did to send it into the world as best they could has been astonishing and humbling. Special thanks to Tina Constable for her undying support, and for being there for the long haul; to Courtney Greenhalgh, my wonderful and tireless publicist; to Patty Berg, for her creative pursuit of every marketing opportunity; and to Amy Boorstein, Jacob Bron stein, Stephanie Chan, Whitney Cookman, Jill Flaxman, Philip Patrick, Annsley Rosner, Courtney Snyder, Barbara Sturman, Katie Wainwright, and Ada Yonenaka. I feel so fortunate to have worked with you all. The same is true of Leila Lee and Michael Gentile in the academic marketing department at Random House, who believed in this book and worked hard to help get it into classrooms. Thanks also to the Random House sales force, particularly John Hastie, Michael Kindness, Gianna LaMorte, and Michele Sulka, who embraced this book and ran with it.

I’m deeply grateful to Erika Goldman, Jon Michel, and Bob Podrasky, all formerly at W. H. Freeman, for believing in me and this book from the beginning, and encouraging me to fight for what I wanted it to be. Thanks also to Louise Quayle for her help early in the process, and to Caroline Sincerbeaux, for always loving this book, and for bringing it to Crown where it found a wonderful home.

Betsy and Michael Hurley and the Lancaster Literary Guild deserve far more thanks than I could possibly convey here. They gave me a key to writer heaven: a beautiful retreat in the hills of West Virginia, where I was free to write without distraction, often for months on end. The world would be a better place if more organizations like the Lancaster Literary Guild existed to support the arts. Along with that retreat house came amazing neighbors: Joe and Lou Rable kept me safe, full, happy, and loved. Jeff and Jill Shade helped me stay human during months of endless work, providing friendship and fun, beautiful property to walk my dogs on, and Baristas and JJS Massage, my favorite café in the world, where Jill kept me well fed and caffeinated, and Jeff massaged the knots he called “writers’ blocks” from my arms, poured drinks when I needed them, and talked with me for hours about my book. I thank the town of New Martinsville, West Virginia, for taking me in. And Heather at The Book Store, who tracked down every good novel she could find with a disjointed structure, all of which I devoured while trying to figure out the structure of this book.

I am lucky to have many wonderful friends who were tireless cheerleaders for this project, despite the number of times they heard me say, “I can’t, because I have to work on my book.” I thank them all, particularly Anna Bargagliotti, Zvi Biener, Stiven Foster (Celebration Committee!), Ondine Geary, Peter Machamer, Jessica Mesman (Foo!), Jeff and Linda Miller, Elise Mittleman (P and PO!), Irina Reyn, Heather Nolan (who also read an early draft and offered helpful feedback), Andrea Scarantino, Elissa Thorndike, and John Zibell. I’m grateful to Gual tiero Piccinini for encouragement and support early in the book process. Special thanks to my dear friend Stephanie Kleeschulte, who brings me joy and keeps me young. And to Quail Rogers-Bloch, for our history, for laughter, wine, and stupid movies in the midst of madness (Yes he did, sir!) . Without her, I wouldn’t be who I am today. She gave me a home to return to each night after my work in Baltimore, talked me through the hardest parts of this book, rescued me when I got stranded or ran out of money, and always offered wise feedback on drafts (some of which she listened to over the phone). Her wonderful husband, Gyon, fed me mangoes when I was exhausted, and their son, my godson, Aryo, brought much joy. Quail’s mother, Terry Rogers, always an inspiration, also provided wonderful feedback on this book.

I’m very lucky to count Mike Rosenwald (mikerosenwald.com) as one of my closest friends. He’s an inspiration as a writer, reporter, and reader. He’s been with me every step of this book with encouragement, commiseration, advice, and a few much-needed ass-kickings. He read many drafts (and listened to several sections over the phone), always offering helpful feedback. I look forward to returning the favor.

My family was the backbone of this book: Matt, the best big brother a girl could hope for, supported me with long talks and laughter and always reminded me to watch out for myself. My wonderful nephews, Nick and Justin, never fail to bring me joy. They spent far too many holidays without their aunt because of this book, and I look forward to making up for lost time. My sister-in-law, Renée, has provided never-ending support for this book; she is not only a good friend, but an eagle-eyed reader with an incredible talent for spotting errors and inconsistencies. The same is true of my wonderful stepmother, Beverly, who read several drafts, giving invaluable support and insight. I also benefited greatly from her sensitivity and training as a social worker as I navigated the complexities of the Lackses’ experience.

My parents and their spouses deserve to have entire wings of this book named after them for all the support they’ve given me over the years. My mother, Betsy McCarthy, has never faltered in her belief in me and this book. She’s kept me sane through pep talks, reality checks, and the gift of knitting, a family tradition I treasure. Her drive, her artistry, and her de-termination have been a tremendous guide for me. She and her husband, Terry, encouraged me during the hardest times, read multiple drafts of the book, and provided wise and helpful feedback.

I am endlessly thankful to my father, Floyd Skloot, for teaching me to see the world with a writer’s eyes, for inspiring me with his many wonderful books, and for treating this one as if it were his own. He has always encouraged me to follow my art, and to fight for what I believed it could be, even when that meant taking risks like quitting a stable job to freelance. He read this book six times before publication (and that’s not counting dozens of individual chapters and sections he read before that). He is not only my father but my colleague, my selfless publicist, and my friend. For that I am lucky beyond measure.

And then there’s David Prete, my Focus (you know). He read this manuscript when it was far longer than any book should ever be, and used his rich talent as a writer and an actor to help me get it to a manageable size. With his grace and support, his heart, his compassion, and his amazing cooking, he also kept me alive and happy. Even when The Immortal Book Project of Rebecca Skloot took over our home and lives, his support never wavered. He has my love and my gratitude. I am a very lucky woman.

DMU Timestamp: February 27, 2021 01:26