The Immortal Life Of Henrietta Lacks Part 21

Though it wouldn't have changed Henrietta's treatment, this new diagnosis could help explain why the cancer spread throughout her body so much faster than her doctors expected. Cervical adenocarcinomas are often more aggressive than epidermoid. (Her syphilis, it turns out, could have been a factor as well-syphilis can suppress the immune system and allow cancer to spread faster than normal.)

Regardless, Jones and his colleagues wrote, the new diagnosis was "but a footnote to the abiding genius of George Gey. ... It has been often said that scientific discovery results when the right man is in the right place at the right time." Gey, they said, was precisely that man. And HeLa was the result of that luck. "If allowed to grow uninhibited under optimal cultural conditions, [HeLa] would have taken over the world by this time," they wrote. "The biopsy ... has secured for the patient, Henrietta Lacks as HeLa, an immortality which has now reached 20 years. Will she live forever if nurtured by the hands of future workers? Even now Henrietta Lacks, first as Henrietta and then as HeLa, has a combined age of 51 years."

This was the first time Henrietta's real name appeared in print. Along with it, for the first time, ran the now ubiquitous photograph of Henrietta standing with her hands on her hips. The caption called her "Henrietta Lacks (HeLa)." With that publication, Henrietta's doctor and his colleagues forever linked Henrietta, Lawrence, Sonny, Deborah, Zakariyya, their children, and all future generations of Lackses to the HeLa cells, and the DNA inside them. And Henrietta's ident.i.ty would soon spread from lab to lab as quickly as her cells.

Just three weeks after Henrietta's name was first published, Richard Nixon signed the National Cancer Act into law and launched the War on Cancer, designating $1.5 billion for cancer research over the next three years. In a move many believe was intended to distract attention from the Vietnam War, Nixon announced that scientists would cure cancer within five years, just in time for the United States Bicentennial.

With this new funding came intense political pressure for scientists to meet the president's deadline. Researchers raced to find what they believed to be the elusive cancer virus, with hopes of developing a vaccine to prevent it. And in May 1972, Nixon pledged that American and Russian scientists would work together in a biomedical exchange program to find the virus.

Though much of the War on Cancer hinged on research using cell cultures, few people knew that those cultures had been contaminated with HeLa. A Was.h.i.+ngton Post reporter had been at the conference when Gartler announced the contamination problem, but he hadn't covered it, and most scientists were still denying that the problem existed. Some were even conducting studies aimed at disproving Gartler's findings.

But the problem wasn't going to go away. Near the end of 1972, when Russian scientists claimed they'd found a cancer virus in cells from Russian cancer patients, the U.S. government had samples of the cells hand-delivered to the Naval Biomedical Research Laboratory in California for testing. It turned out those cells weren't from Russian cancer patients at all. They were from Henrietta Lacks.

The man who discovered that fact was Walter Nelson-Rees, a chromosome expert who was director of cell culture at the Naval laboratory. Nelson-Rees had been in the audience when Gartler presented his infamous research, and he was one of the few scientists who believed it. Nelson-Rees had since been hired by the National Cancer Inst.i.tute to help stop the contamination problem. He would become known as a vigilante who published "HeLa Hit Lists" in Science, listing any contaminated lines he found, along with the names of researchers who'd given him the cells. He didn't warn researchers when he found that their cells had been contaminated with HeLa; he just published their names, the equivalent of having a scarlet H pasted on your lab door.

Despite all the evidence, most researchers still refused to believe there was a problem. And the media didn't seem to notice, until news. .h.i.t that the Russian cells had been contaminated by American ones. Only then did newspapers in London, Arizona, New York, and Was.h.i.+ngton run headlines saying things like CANCER CELLS FROM LONG-DEAD WOMAN INVADE OTHER CULTURES. They reported "serious confusion," "misguided research," and millions of wasted dollars.

Suddenly, for the first time since the Collier's article in the fifties, the press was very interested in the woman behind those cells. They wrote about her "unusual kind of immortality" in one article after another; they called her Helen La.r.s.en or Helen Lane, but never Henrietta Lacks, because Jones and McKusick had published her name in a small science journal few people read.

Rumors spread about the ident.i.ty of this mysterious Helen L. Some said she'd been Gey's secretary, or maybe his mistress. Others said she was a prost.i.tute off the streets near Hopkins or a figment of Gey's imagination, a fict.i.tious character he'd created to hide the true ident.i.ty of the woman behind the cells.

As Helen showed up in articles again and again with different last names, a few scientists began feeling the need to set the record straight. On March 9, 1973, the journal Nature published a letter from J. Douglas, a biologist at Brunel University:

It is twenty-one years since George Gey established the famous HeLa cells in culture. It has been estimated that the weight of these cells in the world today exceeds that of the American negro from whose cervical tumour they originated. That lady has achieved true immortality, both in the test-tube and in the hearts and minds of scientists the world over, since the value of HeLa cells in research, diagnosis, etc., is inestimable. Yet we do not know her name! It has been widely stated that He and La are the first letters of her names but whereas one textbook says the names were Helen Lane another says Henrietta Lacks. My letters to the authors, inquiring the source of their information, like the letter to the hospital from which Gey's paper emanated, remain unanswered. Does anyone know for sure? Would it be contrary to medical ethics in the HeLa cell's coming-of-age year to authenticate the name and let He ... La ... enjoy the fame she so richly deserves?

Douglas was flooded with responses. There's no record of readers addressing his question about medical ethics, but they did correct his grammar and his use of the word "negro" in place of "negress." Many replies offered the names of women they believed were behind the HeLa cells: Helga La.r.s.en, Heather Langtree, even the actress Hedy Lamarr. In a follow-up letter on April 20, 1973, Douglas announced that all those women should "withdraw as gracefully as they can," because he'd received a letter from Howard W. Jones that left "no doubt that HeLa cells were named after Henrietta Lacks."

And Jones wasn't the only one setting the record straight about Henrietta's name: soon Victor McKusick, one of Jones's coauthors, would send a similar letter to a reporter from Science, correcting her misuse of the name Helen Lane. In response, the journalist wrote a short follow-up article in Science t.i.tled "HeLa (for Henrietta Lacks)." In it she explained that she'd inadvertently "repeated the lore about the origin of those cells." Then, in one of the most widely read science journals in the world, she corrected her error: "Helen Lane, it seems, never lived. But Henrietta Lacks did, long protected by the pseudonym Helen Lane." She also reported that Henrietta's tumor had been incorrectly diagnosed.

"None of this alters the validity of the work done with HeLa cells," she wrote, "but it may be worth noting-for the record."

CHAPTER 23

"It's Alive"

On a hazy day in 1973, in a brown brick row house five doors down from her own, Bobbette Lacks sat at her friend Gardenia's dining room table. Gardenia's brother-in-law was in town from Was.h.i.+ngton, D.C., and they'd all just finished having lunch. As Gardenia clanked dishes in the kitchen, her brother-in-law asked Bobbette what she did for a living. When she told him she was a patient aide at Baltimore City Hospital, he said, "Really? I work at the National Cancer Inst.i.tute."

They talked about medicine and Gardenia's plants, which covered the windows and counters. "Those things would die in my house," Bobbette said, and they laughed.

"Where you from anyway?" he asked.

"North Baltimore."

"No kidding, me too. What's your last name?"

"Well, it was Cooper, but my married name is Lacks."

"Your last name is Lacks?"

"Yeah, why?"

"It's funny," he said, "I've been working with these cells in my lab for years, and I just read this article that said they came from a woman named Henrietta Lacks. I've never heard that name anywhere else."

Bobbette laughed. "My mother-in-law's Henrietta Lacks but I know you're not talking about her-she's been dead almost twenty-five years."

"Henrietta Lacks is your mother-in-law?" he asked, suddenly excited. "Did she die of cervical cancer?"

Bobbette stopped smiling and snapped, "How'd you know that?"

"Those cells in my lab have to be hers," he said. "They're from a black woman named Henrietta Lacks who died of cervical cancer at Hopkins in the fifties."

"What?!" Bobbette yelled, jumping up from her chair. "What you mean you got her cells in your lab?"

He held his hands up, like Whoa, wait a minute. "I ordered them from a supplier just like everybody else."

"What do you mean, 'everybody else'?!" Bobbette snapped. " What supplier? Who's got cells from my mother-in-law?"

It was like a nightmare. She'd read in the paper about the syphilis study at Tuskegee, which had just been stopped by the government after forty years, and now here was Gardenia's brother-in-law, saying Hopkins had part of Henrietta alive and scientists everywhere were doing research on her and the family had no idea. It was like all those terrifying stories she'd heard about Hopkins her whole life were suddenly true, and happening to her. If they're doing research on Henrietta, she thought, it's only a matter of time before they come for Henrietta's children, and maybe her grandchildren.

Gardenia's brother-in-law told Bobbette that Henrietta's cells had been all over the news lately because they'd been causing problems by contaminating other cultures. But Bobbette just kept shaking her head and saying, "How come n.o.body told her family part of her was still alive?"

"I wish I knew," he said. Like most researchers, he'd never thought about whether the woman behind HeLa cells had given them voluntarily.

Bobbette excused herself and ran home, bursting through the screen door into the kitchen, yelling for Lawrence, "Part of your mother, it's alive!"

Lawrence called his father to tell him what Bobbette had heard, and Day didn't know what to think. Henrietta's alive? he thought. It didn't make any sense. He'd seen her body at the funeral in Clover himself. Did they go dig it up? Or maybe they did something to her during that autopsy?

Lawrence called the main switchboard at Hopkins, saying, "I'm calling about my mother, Henrietta Lacks-you got some of her alive in there." When the operator couldn't find a record of a patient named Henrietta Lacks in the hospital, Lawrence hung up and didn't know who else to call.

Soon after Lawrence called Hopkins, in June 1973, a group of researchers gathered around a table at Yale University at the First International Workshop on Human Gene Mapping, a first step toward the Human Genome Project. They were talking about how to stop the HeLa contamination problem, when someone pointed out that the whole mess could be sorted out if they found genetic markers specific to Henrietta and used them to identify which cells were hers and which weren't. But doing that would require DNA samples from her immediate family-preferably her husband as well as her children-to compare their DNA to HeLa's and create a map of Henrietta's genes.

Victor McKusick, one of the scientists who'd first published Henrietta's name, happened to be at that table. He told them he could help. Henrietta's husband and children were still patients at Hopkins, he said, so finding them wouldn't be difficult. As a physician on staff, McKusick had access to their medical records and contact information.

The geneticists at the conference were thrilled. If they had access to DNA from Henrietta's children, they could not only solve the contamination problem but also study Henrietta's cells in entirely new ways. McKusick agreed, so he turned to one of his postdoctoral fellows, Susan Hsu, and said, "As soon as you get back to Baltimore, get this done."

McKusick didn't give Hsu instructions for explaining the research to the Lackses. All she knew was that Victor McKusick had told her to call the family.

"He was like a G.o.d," Hsu told me years later. "He was a famous, famous man, he trained most of the other famous medical geneticists in the world. When Dr. McKusick said, 'You go back to Baltimore, get this blood drawn,' I did it."

When Hsu got home from the conference, she called Day to ask if she could draw blood from his family. "They said they got my wife and she part alive," he told me years later. "They said they been doin experiments on her and they wanted to come test my children see if they got that cancer killed their mother."

But Hsu hadn't said anything about testing the children for cancer. There was no such thing as a "cancer test," and even if there had been, McKusick's lab wouldn't have been doing one, because he wasn't a cancer researcher. McKusick was a renowned geneticist who'd founded the world's first human genetics department at Hopkins, where he maintained a catalog of hundreds of genes, including several he'd discovered himself in Amish populations. He compiled information about known genes and the research done on them into a database called Mendelian Inheritance in Man, the bible of the field, which now has nearly twenty thousand entries and is still growing.