The Immortal Life of Henrietta Lacks

by Rebecca Skloot

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

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

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

  28

  After London

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

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

  The interviewer asked, “What is cancer?”

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

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

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

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

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

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

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

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

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

  Then, with Pattillo cheering nearby, Deborah cleared her throat and began her speech:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

  As I’m sure we both know, many standards of practice in academic medicine have changed dramatically in recent years, and I hope and trust that there is increased sensitivity to, and awareness of, the wishes and interests of patients when they seek medical care or participate in research. That is all to the good, for academic medicine and those we serve.

  He also told Wyche that he had circulated her letter to “others at Hopkins for comment and consideration.” Soon a small group of people at Hopkins began meeting unofficially, without telling Wyche or Speed, to discuss what the university might do to honor Henrietta and the Lacks family.

  Then they heard about Cofield.

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

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

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

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