The Immortal Life Of Henrietta Lacks Part 12

As the Cold War escalated, some scientists exposed Henrietta's cells to ma.s.sive doses of radiation to study how nuclear bombs destroyed cells and find ways to reverse that damage. Others put them in special centrifuges that spun so fast the pressure inside was more than 100,000 times that of gravity, to see what happened to human cells under the extreme conditions of deep-sea diving or s.p.a.ceflight.

The possibilities seemed endless. At one point, a health-education director at the Young Women's Christian a.s.sociation heard about tissue culture and wrote a letter to a group of researchers saying she hoped they'd be able to use it to help the YWCA's older women. "They complain that the skin and tissues of the face and neck inevitably show the wear and tear of years," she wrote. "My thought was that if you know how to keep tissue alive there must be some way of equalizing the reserve supply to the area of the throat and face."

Henrietta's cells couldn't help bring youth to women's necks, but cosmetic and pharmaceutical companies throughout the United States and Europe began using them instead of laboratory animals to test whether new products and drugs caused cellular damage. Scientists cut HeLa cells in half to show that cells could live on after their nuclei had been removed, and used them to develop methods for injecting substances into cells without destroying them. They used HeLa to test the effects of steroids, chemotherapy drugs, hormones, vitamins, and environmental stress; they infected them with tuberculosis, salmonella, and the bacterium that causes vaginitis.

At the request of the U.S. government, Gey took Henrietta's cells with him to the Far East in 1953 to study hemorrhagic fever, which was killing American troops. He also injected them into rats to see if they'd cause cancer. But mostly he tried to move on from HeLa, focusing instead on growing normal and cancerous cells from the same patient, so he could compare them to each other. But he couldn't escape the seemingly endless questions about HeLa and cell culture from other scientists. Researchers came to his lab several times each week wanting to learn his techniques, and he often traveled to labs around the world to help set up cell-culture facilities.

Many of Gey's colleagues pressured him to publish research papers so he could get credit for his work, but he always said he was too busy. At home he regularly stayed up all night to work. He applied for extensions on grants, often took months to answer letters, and at one point continued to pay a dead employee's salary for three months before anyone noticed. It took a year of nagging from Mary and Margaret for George to publish anything about growing HeLa; in the end, he wrote a short abstract for a conference, and Margaret submitted it for publication. After that, she regularly wrote and submitted his work for him.

By the mid-fifties, as more scientists began working with tissue culture, Gey became weary. He wrote to friends and colleagues saying, "Someone should coin a contemporary phrase and say, at least for the moment, 'The world has gone nuts over tissue culture and its possibilities.' I hope that some of this hullabaloo over tissue culture has at least had a few good points which have helped others ... I wish for the most part, however, that things would settle down a bit."

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.

CHAPTER 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 probably 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 a.s.sure 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 ident.i.ty 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 fict.i.tious 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 a.s.sume they came from within the walls of Hopkins. As agreed, the Collier's editor had sent the story to Gey before publication for review. 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 ident.i.ty. 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.

CHAPTER 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 pa.s.sed 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 b.l.o.o.d.y. 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.