Gey was annoyed by the widespread fixation on HeLa. After all, there were other cells to work with, including some he’d grown himself: A.Fi. and D-i Re, each named after the patient it came from. He regularly offered them to scientists, but they were harder to culture, so they never took off like Henrietta’s cells. Gey was relieved that companies had taken over HeLa distribution so that he didn’t have to do it himself, but he didn’t like the fact that HeLa was now completely out of his control.
Since the launch of the HeLa production factory at Tuskegee, Gey had been writing a steady stream of letters to other scientists, trying to restrict the way they used Henrietta’s cells. At one point he wrote his longtime friend and colleague Charles Pomerat, lamenting the fact that others, including some in Pomerat’s lab, were using HeLa for research Gey was “most capable” of doing himself, and in some cases had already done, but not yet published. Pomerat replied:
With regard to your … disapproval for a wide exploration of the HeLa strain, I don’t see how you can hope to inhibit progress in this direction since you released the strain so widely that it now can be purchased commercially This is a little bit like requesting people not to work on the golden hamster! … I realize that it is the goodness of your heart that made available the HeLa cell and therefore why you now find that everybody wants to get into the act.
Pomerat suggested that Gey should have finished his own HeLa research before “releasing [HeLa] to the general public since once released it becomes general scientific property.”
But Gey hadn’t done that. And as soon as HeLa became “general scientific property,” people started wondering about the woman behind the cells.
14
Helen Lane
So many people knew Henrietta’s name, someone was bound to leak it. Gey had told William Scherer and his adviser Jerome Syverton in Minneapolis, plus the people at the NFIP, who’d prob ably told the team at Tuskegee. Everyone in the Gey lab knew her name, as did Howard Jones, Richard TeLinde, and the other Hopkins doctors who’d treated her.
Sure enough, on November 2, 1953, the Minneapolis Star became the first publication to name the woman behind the HeLa cells. There was just one thing—the reporter got her name wrong. HeLa, the story said, was “from a Baltimore woman named Henrietta Lakes.”
No one knows who leaked the near-correct version of Henrietta’s name to the Minneapolis Star. Soon after the article ran, Gey got a letter from Jerome Syverton, saying, “I am writing to assure you that neither Bill nor I provided the [Minneapolis Star] with the name of the patient. As you know, Bill and I concur in your conviction that the cell strain should be referred to as HeLa and that the patient’s name should not be used.”
Regardless, a name was out. And two days after it was published, Roland H. Berg, a press officer at the NFIP, sent Gey a letter saying he planned to write a more detailed article about HeLa cells for a popular magazine. Berg was “intrigued with the scientific and human interest elements in such a story,” he wrote, and he wanted to learn more about it.
Gey replied saying, “I have discussed the matter with Dr. TeLinde, and he has agreed to allow this material to be presented in a popular magazine article. We must, however, withhold the name of the patient.”
But Berg insisted:
Perhaps I should describe further to you my ideas on this article, especially in view of your statement that the name of the patient must be withheld. … To inform [the public] you must also interest them. … You do not engage the attention of the reader unless your story has basic human interest elements. And the story of the HeLa cells, from what little I know of it now, has all those elements. …
An intrinsic part of this story would be to describe how these cells, originally obtained from Henrietta Lakes, are being grown and used for the benefit of mankind. … In a story such as this, the name of the individual is intrinsic. As a matter of fact, if I were to proceed with the task my plan would be to interview the relatives of Mrs. Lakes. Nor would I publish the story without the full cooperation and approval of Mrs. Lakes’ family. Incidentally, you may not be aware, but the identity of the patient is already a matter of public record inasmuch as newspaper reports have completely identified the individual. For example, I can refer you to the story in the Minneapolis Star, dated November 2, 1953.
I am entirely sympathetic to your reasons for withholding the name of the patient and thus prevent a possible invasion of privacy. However, I do believe that in the kind of article I am projecting there would be complete protection of the rights of all individuals.
Berg didn’t explain how releasing Henrietta’s name to the public would have protected the privacy or rights of her family. In fact, doing so would have forever connected Henrietta and her family with the cells and any medical information eventually derived from their DNA. That wouldn’t have protected the Lackses’ privacy, but it certainly would have changed the course of their lives. They would have learned that Henrietta’s cells were still alive, that they’d been taken, bought, sold, and used in research without her knowledge or theirs.
Gey forwarded the letter to TeLinde and others at Hopkins, including the head of public relations, asking how they thought he should respond.
“I see no reason why an interesting story cannot be made of it without using her name,” TeLinde replied. “Since there is no reason for doing it I can see no point in running the risk of getting into trouble by disclosing it.”
TeLinde didn’t say what “trouble” he worried they might get into by releasing Henrietta’s name. Keeping patient information confidential was emerging as a standard practice, but it wasn’t law, so releasing it wasn’t out of the question. In fact, he wrote Gey, “If you seriously disagree with me in this, I will be glad to talk to you.”
Gey wrote to Berg saying, “An interesting story could still be built around a fictitious name.” But he wasn’t entirely opposed to releasing her real name. “There may still be a chance for you to win your point,” he wrote. “I fully realize the importance of basic human interest elements in a story such as this and would propose therefore that you drop down to see Dr. TeLinde and myself.”
Gey never told Berg that the Minneapolis Star article had Henrietta’s name wrong, and Berg never wrote his article. But the press wasn’t going away. A few months later, a reporter from Collier’s magazine by the name of Bill Davidson contacted Gey—he was planning to write a story identical to the one Berg had proposed. This time Gey took a harder stance, perhaps because Davidson wasn’t affiliated with one of Gey’s major funding organizations, as Berg was. Gey agreed to be interviewed under two conditions: that he be allowed to read and approve the final article, and that the magazine not include the personal story or full name of the patient the cells came from.
The editor of the story balked. Like Berg, she wrote that “the human story behind these cells would be of great interest to the public.” But Gey wouldn’t budge. If she wanted him or any of his colleagues to talk with Davidson, Collier’s would have to publish the article without the patient’s name.
The editor eventually agreed, and on May 14, 1954, Collier’s published a story about the power and promise of tissue culture. Watching HeLa cells divide on a screen, Davidson wrote, “was like a glimpse at immortality.” Because of cell culture, he said, the world was “on the threshold of a hopeful new era in which cancer, mental illness and, in fact, nearly all diseases now regarded as incurable will cease to torment man.” And much of that was thanks to cells from one woman, “an unsung heroine of medicine.” The story said her name was Helen L., “a young woman in her thirties when she was admitted to the Johns Hopkins Hospital with an incurable cancer of the cervix.” It also said Gey had grown Helen L.’s cells from a sample taken after her death, not before.
There’s no record of where those two pieces of misinformation came from, but it’s safe to assume they came from within the walls of Hopkins. As agreed, the Collier’s editor had sent the story to Gey before publication for r
eview. One week later she got a corrected version back from Joseph Kelly, the head of public relations at Hopkins. Kelly had rewritten the article, presumably with Gey’s help, correcting several scientific errors but leaving two inaccuracies: the timing of growing the cells and the name Helen L.
Decades later, when a reporter for Rolling Stone asked Margaret Gey where the name Helen Lane came from, she’d say, “Oh, I don’t know. It was confused by a publisher in Minneapolis. The name wasn’t supposed to be revealed at all. It was just that somebody got confused.”
One of Gey’s colleagues told me that Gey created the pseudonym to throw journalists off the trail of Henrietta’s real identity. If so, it worked. From the moment the Collier’s article appeared until the seventies, the woman behind the HeLa cells would be known most often as Helen Lane, and sometimes as Helen Larson, but never as Henrietta Lacks. And because of that, her family had no idea her cells were alive.
15
“Too Young to Remember”
After Henrietta’s funeral, cousins came from Clover and all over Turner Station to help cook for her family and care for the babies. They came and went by the dozens, bringing children and grandchildren, nieces and nephews. And one of them—no one was ever sure who—brought tuberculosis. Within weeks of Henrietta’s death, Sonny, Deborah, and baby Joe—all between one and four years old—tested positive for TB.
The doctor sent Deborah home with TB pills as big as bullets, but her little brother Joe was another story. He was barely a year old, and the tuberculosis nearly killed him. Joe spent much of his second year in the hospital, coughing up blood in an isolation chamber. After that, he spent months being passed from cousin to cousin.
Because Day was working two jobs, Lawrence dropped out of school and spent most of his time taking care of his brothers and Deborah, but he wanted to get out of the house now and then to go to the pool halls. At sixteen he was too young to get in, so he lied about his age and got himself a voter’s registration card saying he was eighteen. No one could prove he was lying since he’d been born on the home-house floor and didn’t have a birth certificate or social security card. But his plan backfired. Because of the Korean War, Congress had just lowered the minimum age for military service to eighteen and a half, so Lawrence was drafted at sixteen. He was sent to Virginia, where he’d serve two years in a medic unit at Fort Belvoir. With Lawrence gone, someone else had to raise the Lacks children.
No one told Sonny, Deborah, or Joe what had happened to their mother, and they were afraid to ask. Back then, the rule in the house was, Do what adults say—otherwise you’ll get hurt. They were to sit, hands folded, and not say a word unless someone asked them a question. As far as the children knew, their mother was there one day, gone the next. She never came back, and they got Ethel in her place.
Ethel was the woman that Sadie and Henrietta once hid from on the dance floor, the one Sadie and Margaret swore was jealous of Henrietta. They called her “that hateful woman,” and when she and her husband, Galen, moved into the house, saying they were there to help with the children, Sadie and Margaret figured Ethel was trying to move in on Day. Soon, stories began spreading about Ethel sleeping with Day instead of Galen. A good handful of cousins still think Ethel moved into that house and started up with Day just to get out all the hate she had for Henrietta by torturing her children.
Henrietta’s children grew up hungry. Every morning Ethel fed them each a cold biscuit that had to last them until dinner. She put latches and bolts on the refrigerator and cupboard doors to keep the children out between meals. They weren’t allowed ice in their water because it made noise. If they were good, she’d sometimes give them a slice of bologna or a cold wiener, maybe pour the grease from her bacon pan onto their biscuit, or mix some water with vinegar and sugar for dessert. But she rarely thought they were good.
Lawrence came home from the military in 1953 and moved into a house of his own—he had no idea what Ethel was doing to his brothers and Deborah. As the children grew, Ethel woke them at dawn to clean the house, cook, shop, and do the laundry. In the summers she took them to Clover, where she’d send them into the fields to pick worms off tobacco leaves by hand. The tobacco juice stained their fingers and made them sick when it got in their mouths. But they grew used to it. The Lacks children had to work from sunup to sundown; they weren’t allowed to take breaks, and they got no food or water until nightfall, even when the summer heat burned. Ethel would watch them from the couch or a window, and if one of them stopped working before she told them to, she’d beat them all bloody. At one point, she beat Sonny so badly with an extension cord, he ended up in the hospital. But Joe got the worst of Ethel’s rage.
Sometimes she would beat Joe for no reason while he lay in bed or sat at the dinner table. She’d hit him with her fists, or whatever she had close: shoes, chairs, sticks. She made him stand in a dark basement corner on one foot, nose pressed to the wall, dirt filling his eyes. Sometimes she tied him up with rope and left him down there for hours. Other times she left him there all night. If his foot wasn’t in the air when she checked on him, she’d whip his back with a belt. If he cried, she’d just whip harder. And there was nothing Sonny or Deborah could do to help him; if they said anything, Ethel just beat them all worse. But after a while it got to where the beatings didn’t bother Joe. He stopped feeling pain; he felt only rage.
The police came by the house more than once to tell Day or Ethel to pull Joe off the roof, where he was lying on his stomach, shooting strangers on the sidewalk with his BB gun. When the police asked what he thought he was doing up there, Joe told them he was practicing to be a sniper when he grew up. They thought he was joking.
Joe grew into the meanest, angriest child any Lacks had ever known, and the family started saying something must have happened to his brain while he was growing inside Henrietta alongside that cancer.
In 1959, Lawrence moved into a new house with his girlfriend, Bobbette Cooper. Five years earlier she noticed Lawrence walking down the street in his uniform, and fell for him instantly. Her grandmother warned her, “Don’t mess with that boy, his eyes green, his army suit green, and his car green. You can’t trust him.” But Bobbette didn’t listen. They moved in together when Bobbette was twenty and Lawrence was twenty-four, and they had their first child that same year. They also found out that Ethel had been beating Deborah and her brothers. Bobbette insisted that the whole family move in with her and Lawrence, and she helped raise Sonny, Deborah, and Joe as if they were her own.
Deborah was ten years old. Though moving out of Ethel’s house had ended the abuse for her brothers, it hadn’t stopped it for her. Ethel’s husband, Galen, was Deborah’s biggest problem, and he found her wherever she went.
She tried to tell Day when Galen touched her in ways she didn’t think he was supposed to, but Day never believed her. And Ethel just called Deborah words she’d never heard, like bitch and slut. In the car with Day driving and Ethel in the passenger seat, and everybody drinking except her, Deborah would sit in the back, pressed against the car door to get as far from Galen as she could. But he’d just slide closer. As Day drove with his arm around Ethel in front, Galen would grab Deborah in the backseat, forcing his hands under her shirt, in her pants, between her legs. After the first time he touched her, Deborah swore she’d never wear another pair of jeans with snaps instead of zippers again. But zippers didn’t stop him; neither did tight belts. So Deborah would just stare out the window, praying for Day to drive faster as she pushed Galen’s hands away again and again.
Then one day he called Deborah, saying, “Dale, come over here and get some money. Ethel wants you to pick her up some soda.”
When Deborah got to Galen’s house, she found him lying naked on the bed. She’d never seen a man’s penis and didn’t know what it meant for one to be erect, or why he was rubbing it. She just knew it all felt wrong.
“Ethel want a six-pack of soda,” Galen told Deborah, then patted the mattress beside him. “The mon
ey’s right here.”
Deborah kept her eyes on the floor and ran as fast as she could, snatching the money off the bed, ducking when he grabbed for her, then running down the stairs with him chasing after her, naked and yelling, “Get back here till I finish with you, Dale! You little whore! Just wait till I tell your father!” Deborah got away, which just made him madder.
Despite the beating and the molesting, Deborah felt closer to Galen than she ever had to Day. When he wasn’t hitting her, Galen showered her with attention and gifts. He bought her pretty clothes, and took her for ice cream. In those moments, Deborah pretended he was her father, and she felt like a regular little girl. But after he chased her through the house naked, it didn’t seem worth it, and eventually she told Galen she didn’t want any more gifts.
“I’ll get you a pair of shoes,” he said, then paused, rubbing her arm. “You don’t have to worry about anything. I’ll wear a rubber, you don’t have to worry about pregnant.” Deborah had never heard of a rubber, and she didn’t know what pregnant was, she just knew she wanted him to leave her alone.
Deborah had started scrubbing people’s floors and ironing for small amounts of money. She’d try to walk home alone after work, but Galen would usually pick her up along the way and try to touch her in the car. One day not long after her twelfth birthday, he pulled up beside Deborah and told her to get in. This time she kept walking.
Galen jammed the car into park and yelled, “You get in this damn car girl!”
Deborah refused. “Why should I get in?” she said. “I ain’t doing nothing wrong, it’s still daylight and I just walkin down the street.”
“Your father looking for you,” he snapped.
“Let him come get me then! You been doin things to my body you ain’t supposed to do,” she yelled. “I don’t want to be nowhere with you by myself no more. Lord gave me enough sense to know that.”
The Immortal Life of Henrietta Lacks Page 11
