The Immortal Life of Henrietta Lacks

by Rebecca Skloot

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

When I talked to Howard Jones fifty years after he found the tumor on Henrietta’s cervix, he was in his early nineties and had seen thousands of cervical cancer cases. But when I asked if he remembered Henrietta, he laughed. “I could never forget that tumor,” he said, “because it was unlike anything I’ve ever seen.” I talked to many scientists about HeLa, and none could explain why Henrietta’s cells grew so powerfully when many others didn’t even survive. Today it’s possible for scientists to immortali...

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

In the early 1900s, Carrel’s chicken-heart cells supposedly proved that all cells had the potential for immortality. But normal human cells—either in culture or in the human body—can’t grow indefinitely like cancer cells. They divide only a finite number of times, then stop growing and begin to die. The number of times they can divide is a specific number called the Hayflick Limit, after Leonard Hayflick, who’d published a paper in 1961 showing that normal cells reach their limit when they’ve doubled about fifty times.

It was an epiphany: scientists had been trying for decades to grow immortal cell lines using normal cells instead of malignant ones, but it had never worked. They thought their technique was the problem, when in fact it was simply that the lifespan of normal cells was preprogrammed. Only cells that had been transformed by a virus or a genetic mutation had the potential to become immortal.

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

He invited researchers from around the world to present scientific papers on cancer in minorities, and he petitioned the city of Atlanta to name October 11, the date of the conference, Henrietta Lacks Day. The city agreed and gave him an official proclamation from the mayor’s office. He asked Howard Jones to contribute an article recording his memories of diagnosing Henrietta’s tumor. Jones wrote:

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

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

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

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

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

“He autographed it for me,” she said, rolling her eyes. “Would have been nice if he’d told me what the damn thing said too.”

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

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

She said, “I just need somebody I can trust, somebody that will talk to me and don’t keep me in the dark.” She asked me to promise I wouldn’t hide anything from her. I promised I wouldn’t.

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

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

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

“I know my life could be better and I wish it was,” she told me. “When people hear about my mother cells they always say, ‘Oh y’all could be rich! Y’all gotta sue John Hopkin, y’all gotta do this and that.’ But I don’t want that.” She laughed. “Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it. I’m a walking drugstore! I can’t say nuthin bad about science, but I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells probably helped make.”

“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!”

“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.”

“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.”

“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.”

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.”

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.

“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.

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.”

“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!”

“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.

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!

“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.”

“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 ...

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 fr...

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.

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 reborn 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.”

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.

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.”

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.

“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.

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.

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.

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.