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Rebecca Skloot

Rebecca Skloot Books

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“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.”

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“Since the Common Rule says that research subjects must be allowed to withdraw from research at any time, these experts have told me that, in theory, the Lacks family might be able to withdraw HeLa cells from all research worldwide. And in fact, there are precedents for such a case, including one in which a woman successfully had her father’s DNA removed from a database in Iceland. Every researcher I’ve mentioned that idea to shudders at the thought of it.”

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“many scientists have interfered with science in precisely the way courts always worried tissue donors might do. “It’s ironic,” she told me. “The Moore court’s concern was, if you give a person property rights in their tissues, it would slow down research because people might withhold access for money. But the Moore decision backfired—it just handed that commercial value to researchers.” According to Andrews and a dissenting California Supreme Court judge, the ruling didn’t prevent commercialization; it just took patients out of the equation and emboldened scientists to commodify tissues in increasing numbers. Andrews and many others have argued that this makes scientists less likely to share samples and results, which slows research; they also worry that it interferes with health-care delivery.”

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“I’ve tried to imagine how she’d feel knowing that her cells went up in the first space missions to see what would happen to human cells in zero gravity, or that they helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization. I’m pretty sure that she—like most of us—would be shocked to hear that there are trillions more of her cells growing in laboratories now than there ever were in her body.”

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“Nelson-Rees had since been hired by the National Cancer Institute 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.”

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“The American Type Culture Collection—a nonprofit whose funds go mainly toward maintaining and providing pure cultures for science—has been selling HeLa since the sixties. When this book went to press, their price per vial was $256. The ATCC won’t reveal how much money it brings in from HeLa sales each year, but since HeLa is one of the most popular cell lines in the world, that number is surely significant.”

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“Day wouldn’t have understood the concept of immortal cells or HLA markers coming from anyone, accent or not—he’d only gone to school for four years of his life, and he’d never studied science. The only kind of cell he’d heard of was the kind Zakariyya was living in out at Hagerstown. So he did what he’d always done when he didn’t understand something a doctor said: he nodded and said yes.”

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“Everyone in the audience knew what that meant. On top of saying they’d possibly wasted more than a decade and millions of research dollars, Gartler was also suggesting that spontaneous transformation—one of the most celebrated prospects for finding a cure for cancer—might not exist. Normal cells didn’t spontaneously become cancerous, he said; they were simply taken over by HeLa.”

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“Ultimately the judge threw Moore’s suit out of court, saying he had no case. Ironically, in his decision, the judge cited the HeLa cell line as a precedent for what happened with the Mo cell line. The fact that no one had sued over the growth or ownership of the HeLa cell line, he said, illustrated that patients didn’t mind when doctors took their cells and turned them into commercial products. The judge believed Moore was unusual in his objections. But in fact, he was simply the first to realize there was something potentially objectionable going on.”

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“Soon after Harris’s HeLa-chicken study, a pair of researchers at New York University discovered that human-mouse hybrids lost their human chromosomes over time, leaving only the mouse chromosomes. This allowed scientists to begin mapping human genes to specific chromosomes by tracking the order in which genetic traits vanished. If a chromosome disappeared and production of a certain enzyme stopped, researchers knew the gene for that enzyme must be on the most recently vanished chromosome. Scientists in laboratories throughout North America and Europe began fusing cells and using them to map genetic traits to specific chromosomes, creating a precursor to the human genome map we have today.”

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“Gene patents are the point of greatest concern in the debate over ownership of human biological materials, and how that ownership might interfere with science. As of 2005—the most recent year figures were available—the U.S. government had issued patents relating to the use of about 20 percent of known human genes, including genes for Alzheimer’s, asthma, colon cancer, and, most famously, breast cancer. This means pharmaceutical companies, scientists, and universities control what research can be done on those genes, and how much resulting therapies and diagnostic tests will cost. And some enforce their patents aggressively: Myriad Genetics, which holds the patents on the BRCA1 and BRCA2 genes responsible for most cases of hereditary breast and ovarian cancer, charges $3,000 to test for the genes. Myriad has been accused of creating a monopoly, since no one else can offer the test, and researchers can’t develop cheaper tests or new therapies without getting permission from Myriad and paying steep licensing fees. Scientists who’ve gone ahead with research involving the breast-cancer genes without Myriad’s permission have found themselves on the receiving end of cease-and-desist letters and threats of litigation.”

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“At that point, more than 15,000 women were dying each year from cervical cancer. The Pap smear had the potential to decrease that death rate by 70 percent or more, but there were two things standing in its way: first, many women - like Henrietta - simply didn't get the test; and, second, even when they did, few doctors knew how to interpret the results accurately, because they didn't know what various stages of cervical cancer looked like under a microscope. Some mistook cervical infections for cancer and removed a woman's entire reproductive tract when all she needed was antibiotics. Others mistook malignant changes for infection, sending women home with antibiotics only to have them return later, dying from metastasized cancer. And even when doctors correctly diagnosed precancerous changes, they often didn't know how those changes should be treated.”

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“As a result of its investigation, the NIH said that to qualify for funding, all proposals for research on human subjects had to be approved by review boards—independent bodies made up of professionals and laypeople of diverse races, classes, and backgrounds—to ensure that they met the NIH’s ethics requirements, including detailed informed consent. Scientists said medical research was doomed. In a letter to the editor of Science, one of them warned, “When we are prevented from attempting seemingly innocuous studies of cancer behavior in humans … we may mark 1966 as the year in which all medical progress ceased.”

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“Black scientists and technicians, many of them women, used cells from a black woman to help save the lives of millions of Americans, most of them white. And they did so on the same campus—and at the very same time—that state officials were conducting the infamous Tuskegee syphilis studies.”

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