"The Immortal Life of Henrietta Lacks"
By Rebecca Skloot
Crown, 369 pages, $26
Dr. George Gey and his wife Margaret had been trying to grow cells outside the human body for thirty years when Henrietta Lacks walked into Johns Hopkins Hospital in February 1951 with unexplained blood on her underwear. It turned out that the 30-year old mother of five had a monstrously aggressive case of
. During an examination, her doctor, Richard Wesley TeLinde, a prominent cervical cancer specialist, took a tissue sample from Lacks’ cervix without her knowledge or consent, and passed it to his colleague Gey. There was nothing unusual about the sample, the way in which it was taken, or where it ended up: there was no notion of informed consent in 1951 (the phrase first appeared in 1957). Hopkins was a university hospital, a site of scientific research as well as healing. As part of his own research on cervical cancer, TeLinde often collected tissue samples from patients and delivered the samples to Gey, hoping that Gey could coax the cells to reproduce and form the basis for further research. Gey’s goal was to develop a continuing line of cells all descended from one sample: what biologists called an immortal cell line. This had been accomplished with mouse cells in 1943, but so far Gey's human experiments had failed.
Henrietta Lacks' normal cells died like all the others. But her cancer cells did not. To the contrary, they thrived, growing at an impossible rate, doubling their numbers every 24 hours. It was the practice of the day to identify cells by the initials of the donor’s first and last name; Gey dubbed this line HeLa (pronounced "heelah"). HeLa were sturdy and unfussy about their environment, the cellular equivalent of crabgrass. It was later discovered that HeLa cells were also mobile, traveling through the air on dust particles or on the gloves of researchers, and very invasive: they colonized any cells they came into contact with in the laboratory. In the mid-1960s, scientists were dismayed to realize that all eighteen of the supposedly new cell lines discovered since 1951 were really the result of undetected contamination by HeLa cells. HeLa even slipped across the Iron Curtain. When Soviet scientists reported isolating what they thought was a virus that caused cancer in 1972, cell samples thought to be from a Russian patient turned out to be HeLa instead. There are other lines of immortal cells—Jurkat cells, for example, are an immortalized line of T lymphocyte cells that are used to study acute T cell leukemia, as are all stem cell lines. But no cell line has ever behaved the way that HeLa did; none has ever reproduced as easily or as massively.
When Gey discovered how robust HeLa was, he began sending samples to other scientists to grow and use for their own experiments. HeLa cells were exposed to radiation, X-rays, toxins; chemotherapy drugs, steroids hormones, vitamins; infected with tuberculosis, herpes, measles, mumps. In 1952, in the midst of a deadly polio epidemic and not long after Henrietta Lacks had succumbed to her cancer, the National Foundation for Infantile Paralysis financed the mass production of HeLa cells in order to conduct large-scale tests on Jonas Salk’s polio vaccine. The NFIP decided to locate their HeLa production center at Tukegee Institute. Mass production of the cells helped George Gey and National Institutes of Health (NIH) researcher Harry Eagle standardize cell culture by ascertaining the best culture medium and glassware for HeLa. Standardization increased production with cells just as it had with automobiles a generation earlier, and vat after vat of HeLa rolled out of the labs at Tuskegee and were sent wherever they were needed.
No one holds a patent on HeLa. Neither Henrietta Lacks, whose tissue sample spawned HeLa, nor anyone in her family has ever received any form of compensation for it. Neither of the agents of its discovery and propagation—George Gey or Johns Hopkins University Hospital—ever made money off of it. Others did, however. Microbiological Associates, which later became part of Invitrogen and BioWhittaker, two of the largest bio-tech companies in the world, got its start in Baltimore selling and distributing HeLa. Today, writes Skloop, “Invitrogen sells HeLa products that cost anywhere from a hundred dollars to nearly ten thousand dollars per vial.” The American Type Culture Collection, a non-profit organization that supports the maintenance and production of pure cultures for scientific research, sells HeLa vials for approximately $250. A search of the U.S. Patent and Trademark Office database, Skloot informs us, “turns up more than seventeen thousand patents involving HeLa cells.”
HeLa's remarkable properties caught the attention in 1954 of a public already riveted on the massive clinical trials being conducted to determine the safety and effectiveness of Jonas Salk's killed polio virus vaccine. Before HeLa, the cells scientists used to test the vaccine came from monkey kidneys. Without HeLa, the Salk trial would have required the slaughter of thousands of monkeys, which were expensive to buy or to raise. It is little wonder that journalists looking for a human interest slant to science reporting turned to the woman who had spawned HeLa, although we should not be as quick as they to dub Henrietta Lacks an “unsung heroine of medicine.” The reason that there are more than 17,000 patents “involving HeLa cells” is that they are, like monkey cells, a medium for scientific research, the cellular equivalent of a Petri dish. The original source of HeLa cells is no more responsible for the scientific advances produced using them than agar gelatin is for the bacteria and viruses that thrive on it. Henrietta Lacks is no more, and no less, worthy of veneration for her contribution to science than the monkeys whose kidneys were harvested in the same cause. If these assertions prove offensive—and it is likely that they do—it is because the source of this incredible medium, this scientific tool that is HeLa, was a human being.
Over the past half century, scientific fields that have been built not on agar but on human bodies (such microbiology and genetics) have raised thorny problems of property rights and medical ethics. Readers of "
" may be surprised to discover that they retain no property interest in parts of their bodies that are separated from them with their consent. If my dermatologist removes a mole, does she have the right to store it to experiment on, or send it to a tissue depository for the use of other scientists? (Yes.) Can I limit what kind of research is carried out using my tissue sample? (No.) If someone patents a discovery made in part thanks to my blood or tissue, can he sell it without telling me or sharing the proceeds? (Yes.) The alienation of labor no longer shocks the way it did in the nineteenth century—we accept without surprise that our employers generally own the rights to the fruits of our work—but the alienation of our own bodies still does. It is this sense of violation, of theft, that animates Lacks’ sons Lawrence and Sonny in their fruitless quest for compensation from Johns Hopkins, and that accounts for much of the energy in Skloot’s narrative.
The broad bioethical stakes at the core of "
" are obscured in good measure by Skloot’s emphasis on Lacks’s race. Henrietta Lacks was African American. George Gey knew this all along, of course, and in 1966 he told this to Stanley Garnter, the geneticist who discovered that HeLa had contaminated all the other cell lines. This fact was not revealed to the public until 1976, however, when a reporter for Rolling Stone announced it. Henrietta Lacks the person soon proved to be as fertile a medium for narrative as HeLa was for scientific experimentation; people could build all sorts of arguments on her. With the Black Panthers denouncing what they considered a racist health-care system and setting up free clinics for black people in local parks, the racial story behind Henrietta Lacks, Skloop writes, was impossible to ignore. “Henrietta was a black woman born of slavery and sharecropping who fled north for prosperity, only to have her cells used as tools by white scientists without her consent. It was a story of white selling black. . . . It was also the story of cells from an uncredited black woman becoming one of the most important tools in medicine.”
The two story lines revealed here—that of Henrietta’s cells becoming “one of the most important tools in medicine” and a much broader one of “white selling black”—are connected by foundational acts of expropriation and exploitation, but they run on parallel rather than intersecting tracks. Ever since Douglas North argued in 1961 that the cotton economy of the South was the rocket that propelled the antebellum American economy, historians have credited the legions of unpaid slave laborers for their crucial contribution to the economic prominence of the United States. But if slave labor underlay early American economic development, the slaves themselves did not benefit from their labor. Indeed, they paid a tangible if unquantifiable corporeal cost for the alienation and expropriation of their bodies through coerced labor and involuntary sex and childbearing. Layer onto this history that of lynching, in which white mobs frequently took home “trophies;” the horrifying mid-century story of the
syphilis experiments (in which black men infected with syphilis were denied penicillin and allowed to die); and the broader social background of legal discrimination by race, and it becomes unsurprising that many African Americans in the mid-twentieth century, especially those whose families included the children or grandchildren of slaves, felt strongly about issues of bodily integrity, and saw violations of individual bodies as political acts. Henrietta Lacks, it bears mentioning, was born in a slave cabin in South-side Virginia.
It is one thing to understand why Lacks’s family, whose members struggle with deep poverty, chronic joblessness, drug addiction and ill health view her story through the prism of race. Skloot follows the family and treats the general issue of bioethics as a race issue, which obscures the much more important underlying biomedical property question that affects all bodies regardless of race. The race question is the most compelling component of the book, but it is also the most misleading.
The story of HeLa and of Henrietta Lacks is not simple, and Skloot struggles in places with order and chronology and plot line, and sometimes confuses irony with argumentation. Where she succeeds magnificently is in her depiction of the Lacks family, particularly Henrietta’s daughter Deborah, a fragile personality with whom Skloot spent many months. Skloot’s unvarnished presentation of this family raises many questions, not the least of which is whether such a thing as “informed consent” is even possible for people who lack basic education. When Hopkins researchers in 1973 wanted DNA samples from Henrietta’s family to compare to HeLa’s DNA, they sent a postdoctoral student to draw blood. Here is what Henrietta’s husband Day recalled the postdoc as saying: “They said they got my wife and she part alive. 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.” Henrietta’s husband and children gave only blood. Other people in even more extreme social circumstances—such as the desperately poor men and women in Africa and Asia who barter their flesh in the international organ market—give much more, and likely more than they bargained.
Although Henrietta’s sons hope for some sort of compensation someday, Deborah was finally concerned chiefly with recognition. She wanted to see her mother’s contribution to science acknowledged by those whose work depended on HeLa. She wanted her mother, who lies in an unmarked grave in a family burial ground in Virginia, to be remembered. Henrietta’s cousin Cootie identified the problem for Skloot: “It sound strange, but her cells done lived longer than her memory.” With this compassionate and moving book, Rebecca Skloot has restored some of the balance.