The Immortal Life of Henrietta Lacks

by Rebecca Skloot

  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.”

  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 estimat
ed 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 a 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 “ver
y 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).