Dying and Not Dying
- BuyThe Immortal Life of Henrietta Lacks by Rebecca Skloot
Macmillan, 368 pp, £18.99, June 2010, ISBN 978 0 230 74869 9
Leaf through the pages of almost any life sciences journal, and you will come across advertisements for HeLa cells, living laboratory tools that have formed the basis of an incalculably vast amount of biomedical research since the early 1950s. Retailing at anything from a few hundred to a few thousand dollars for a small vial, different versions of this indispensable elixir are hawked by laboratory supply companies the world over. Many of these products’ consumers have long been aware that there is a human story behind HeLa’s blandly commercialised ubiquity; now Rebecca Skloot’s remarkable book has appeared to fill in all the details. The moniker ‘HeLa’ is derived from the name of a young African-American mother of five, whose agonising death in a Jim Crow era charity hospital gave rise to a quiet revolution in medicine. In January 1951, at the age of 30, Henrietta Lacks was admitted to the ‘Coloured Only’ examination room of Johns Hopkins Hospital in Baltimore, complaining of abdominal pain and irregular bleeding. A week later she was back to receive radium treatment for cervical cancer. Before operating, the surgeon shaved a small sample of tissue from the tumour on her cervix and sent it off to the laboratory of George and Margaret Gey (pronounced ‘Guy’), two research scientists who were engaged in a frustrating quest to keep human cells alive outside the body.
For years the Geys had been taking tissue samples from Johns Hopkins patients, nurturing the cells with warmth, nutrition and gentle movement, trying to coax them into continuing to divide. This had worked with mouse cells a few years earlier, but human cells were proving fussier. The Geys experimented with recipe after recipe for cell chow – the ‘nutritional medium’ – but their efforts resulted in, at best, a few days of survival. By 1951 a certain fatalism had settled over the lab’s day-to-day proceedings, and so when Henrietta Lacks’s sample appeared, the technician, Mary Kubicek, finished her lunch before embarking on the lonely little performance she had gone through so many times before. After sterilising everything and donning a surgical cap and mask, she cut the sample into one-millimetre dice, dropped each tiny square onto a chicken blood clot in a test tube, and covered it with a few drops of the mixture of broths, salts and umbilical cord blood that was the cells’ experimental plat du jour. She then plugged each test tube with a rubber stopper, labelled it ‘HeLa’ for the patient’s first and last names, and inserted it into a crazy rig that George Gey had fashioned out of junkyard scraps to keep the cells warm and in constant motion.
A couple of days later, the little clots at the bottom of the test tubes had sprouted a whitish ring of new cells. Mary Kubicek didn’t think much of it. Many of the samples she had cultured over the years had survived and reproduced initially, only to die off after a few days. The next time she looked, however, she noticed that these cells weren’t just growing, they were proliferating. She split them up into new test tubes. They kept on multiplying, doubling approximately every 24 hours, ‘spreading like crabgrass’, as she later recalled. As long as they were kept warm and fed, HeLa cells seemed indestructible, unstoppable, potentially immortal. The Geys were ecstatic, and started to send out samples to colleagues. They sent HeLa cells to Texas, New York, Amsterdam, India and Chile, in cardboard boxes packed with sawdust, in the shirt-pockets of pilots and air stewards, and on one occasion, in the saddlebag of a mule. On 10 April 1951, George Gey appeared on local television waving a pint bottle full of HeLa, and predicting the medical marvels that it would make possible.
Meanwhile, unaware that her cells were travelling the world and appearing on television, Henrietta Lacks was dying. The same bizarre vigour that kept her cells dividing in vitro also ensured the inexorable spread of her cancer. After a brief remission in the wake of her first radium treatment, she started to feel worse than ever. She submitted to radiation therapy that charred her skin from breastbone to abdomen, but only got sicker. A week after her 31st birthday, she checked into the hospital. New tumours seemed to appear almost daily. Her pain was unreachable with the most powerful opiates. Her kidneys shut down. Tumours blocked her urethra, making it impossible for the doctors even to insert a catheter. On 4 October 1951 she died of blood poisoning. George Gey requested permission to conduct an autopsy, and her husband signed the forms. Her insides were riddled with tumours, large ones that nearly replaced her kidneys, bladder, ovaries and uterus, and tiny ones clustered like so many pearls on her other organs. When Gey tried to culture samples taken at the autopsy, it quickly became apparent that the bacterial build-up arising from Lacks’s multiple organ failure rendered them useless for growing cell-lines. It was only because the surgeon had taken a sample early on in the progression of the disease that the cells were viable.
HeLa’s vigour appears to be unequalled in the annals of medical science. Lacks’s death was the result of her infection with a particularly successful strain of human papillomavirus, HPV-18, which invaded the layers of protective cells on the surface of her cervix and rearranged their chromosomes to suit its reproductive needs, ensuring their indomitable spread by harnessing them to produce a chemical thwarting the cells’ natural cycles of ageing and death. (HeLa has 82 chromosomes, humans have 46.) Under normal circumstances, the death of the host would have called this to a halt but the virus won through to immortality by way of the Petri dish. There appears to be no end to HeLa’s biomedical utility. It was used to develop the polio vaccine, the HPV vaccine, and to understand and interrupt the lifecycle of HIV. It has increased our understanding of cancer and the mechanisms of ageing and cell-death. It played a central role in human genome mapping. It has been blasted into space to study cell division in zero-gravity conditions, sprayed with microscopic materials for nanotechnology research and manipulated in the development of cloning techniques. To date it features in more than 60,000 scientific papers and its total biomass is reputed to be somewhere in the magnitude of one hundred Empire State Buildings.
Mary Kubicek assisted at Lacks’s autopsy. It was the first time she had ever seen a dead body. In order not to make a fool of herself, she studiously avoided looking at Lacks’s face, but when her glance fell on the chipped red nail varnish on her toes, she was ambushed by emotion: ‘I nearly fainted. I thought: Oh jeez, she’s a real person. I started imagining her sitting in her bathroom, painting those toenails, and it hit me for the first time that those cells we’d been working with all this time and sending all over the world, they come from a live woman.’ Every few years another science writer gets wind of the intriguing juxtaposition between a dying woman and her undying cells, and retells the fable.
Rebecca Skloot may be just the latest in a long line, but The Immortal Life of Henrietta Lacks will surely stand as the definitive account. There’s no simple moral to the tale, but the book shows how even the best intentions may be warped by their journey through a landscape of stark social inequities. While HeLa cells were conquering polio and orbiting the earth, Lacks’s children were struggling with poverty, abuse and illness. Although various garbled accounts of the origin of the world-changing cell-line made it into the papers, the name of the ‘donor’ was sometimes rendered Helen Larson and sometimes Helen Lane, in a half-baked attempt by Johns Hopkins to protect patient privacy. It was only with the death of George Gey in 1970 that Henrietta Lacks’s name was published, and it was not until 1973 that the news reached her children that a part of their mother was mysteriously still alive.
First in the family to hear about HeLa cells was Bobbette, the wife of Henrietta Lacks’s oldest son. At a friend’s house, she fell into conversation with a man who worked for the National Cancer Institute. He told her that he was experimenting with living cells that originally came from a woman with the same last name as hers. Bobbette waved this away on the grounds that her mother-in-law had died almost 25 years earlier. The man then asked: ‘Did she die of cervical cancer?’ At which point, 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 1950s.”’ Only a few months earlier, Bobbette had read about the Tuskegee Study of Untreated Syphilis in the Male Negro, and had learned that for 40 years the US Public Health Service had withheld treatment for syphilis from 399 African-American men in order to study the unchecked progression of the disease. White America was shocked by Tuskegee. Among Black Americans, the revelation only confirmed what they already knew: in the eyes of many doctors, they were little more than cheap experimental animals. When Bobbette heard that researchers could order her mother-in-law’s living cells from laboratory equipment suppliers, she was appalled. Her husband called Hopkins, explaining that he had heard they had his mother there, alive. ‘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.’
A few months later, the information that Lacks was ‘part alive’ reached another member of the family. This second contact came about as a result of yet another twist in the HeLa saga. It had become suspiciously easy to culture cells after the Geys’ success with HeLa, and scores of different immortal cell-lines started to circulate. Eventually someone dropped the bombshell that many of these – supposedly from monkeys, mice, Euro-Americans, and a host of other organisms – carried a rare genetic marker found mostly in people of African descent. Was it possible that HeLa cells had contaminated all of these lines, accounting for the abrupt improvement in the odds of keeping cells alive? Many of the scientists whose work looked as if it was about to be flushed away were understandably resistant, and in 1973 someone came up with the idea of getting samples from the family to generate a precise genetic fingerprint of the cell-line. Henrietta Lacks’s husband, David, soon received a call from a geneticist at Hopkins to ask for some blood samples from him and his children.
What happened next exemplifies how innocuous medical research can go awry when communication breaks down. The scientist who called David Lacks was a recent immigrant from China, doing the bidding of her powerful boss. This is what she remembered saying to David Lacks: ‘We come to draw blood to get HLA androgen, we do genetic marker profile because we can deduce a lot of Henrietta Lacks genotype from the children and the husband.’ This is what David Lacks remembered being told: ‘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.’ David Lacks assented, then called his children to come and get ‘tested for cancer’. The youngest daughter, Deborah, haunted by her mother’s untimely death, thought it was a chance to face her deepest fear – that she, in her turn, would leave her children without a mother. She and her siblings went to their brother’s house and the whole family had their blood drawn. Then, silence. Deborah repeatedly called the Johns Hopkins switchboard, asking for the results of her test, but they could not help her or direct her to anyone who could. A few months later, she got a call to come in to the hospital to give some more blood, this time for a California researcher conducting his own HeLa genetic study. Still thinking that it was part of a test for cancer, she went in, and met the geneticist who had ordered the original blood samples. He shook her hand and gave her a textbook, which would ‘tell her everything she needed to know’. Inside was a photograph of her mother that she had never seen before, accompanied by words that meant nothing to her, like ‘the correlate of the tumour’s singularity’.
This was just the beginning of Deborah Lacks’s frustrating relationship with a steady stream of people wanting something from the daughter of HeLa. Sickened by poor living conditions, unable to afford medical insurance, and justly suspicious of the mixed motives of charitable medicine, she and her family remained at the sharp end of the medical and health disparities that still fissure the United States. In addition to the burdens of poverty, they were periodically bombarded by creepy, cryptic bulletins about their mother from the cutting edge of medical science; thus they heard that Henrietta Lacks had been combined with tobacco DNA to produce the first human/plant hybrid. Every so often a journalist would surface wanting to interview them, or a scientist wanting to congratulate them. None of this helped them get decent medical care. When Deborah’s brothers found out that money was being made from HeLa cells, they got interested in pursuing some kind of legal action against Hopkins, and fell into the clutches of a crazy con man, as a result of which various initiatives to honour Henrietta Lacks’s contribution to medicine came to an abrupt halt. By the time Rebecca Skloot entered their lives, Deborah had been driven half mad by it all, and the rest of them were thoroughly pissed off.
As yet another white person wanting something from the family – there’s a funny scene in which one of the grandchildren answers the phone, hears her accent, and straightaway yells out to David Lacks that a lady is calling about the cells – Skloot had dues to pay. Financing her research with credit cards and student loans, she started working on the book in her late twenties, and finished a decade later. Armed with a winning manner and what must have been deep reserves of moral self-confidence, she stalked her reluctant protagonists for months and sometimes years until they agreed to talk to her. What it took to win the trust of the family, and the redemptive results of her persistence, are important aspects of her investigation, as revealing about the rights and wrongs of different kinds of opportunism – scientific, journalistic, voyeuristic – as anything in the book.
Skloot never deviates from her position as a passionate advocate on the Lacks family’s behalf (she has pledged them a percentage of any royalties), but she nonetheless deals with the ethics of the case with creditable even-handedness. We learn, for example, that George and Margaret Gey never made a cent out of HeLa, and that no wrongdoing can reasonably be attributed to this idealistic couple. George Gey grew up so poor that as a child he dug a little coalmine in the hill at the back of the house so that the families on the street could heat their homes. He and Margaret built much of their lab equipment themselves, worked for years without salaries, and gave HeLa cells away for free. As a result of their generosity, they sometimes could not afford their own mortgage payments. Research like theirs was emphatically not entrepreneurial. Asked in 1954 who owned the patent on the polio vaccine in which HeLa played such a central role, Jonas Salk replied: ‘Well, the people I would say. There is no patent. Could you patent the sun?’
In time, however, this mid-century idealism metamorphosed into hubris. In 1954, Chester Southam, the chief of virology at the Sloan-Kettering Institute for Cancer Research, began to inject HeLa cells into the arms of cancer patients to see if he could induce tumours. He failed to inform his research subjects that the cells were cancerous, on the grounds that it might upset them, and went on to do the same experiment on healthy volunteers from a state penitentiary, and on hundreds of gynaecological surgery patients. In 1963, he made the mistake of trying to involve three doctors at the Jewish Chronic Disease Hospital in Brooklyn, whose memories of the Nuremberg Doctors’ Trial were vivid enough for them to make the connection between his research and Nazi medical atrocities. Their protest led to others, culminating in the revelation of the Tuskegee syphilis study.
In the wake of Tuskegee, informed consent was legally mandated for research on human subjects. What had seemed obvious in the 1950s – that poor, incarcerated, terminally ill or otherwise institutionalised research subjects had the least to lose if anything went wrong – became a symbol of the outrages visited on America’s underclass. Patients joined the burgeoning ranks of identity groups enfolded into the Civil Rights movement, and hospitals and psychiatric facilities were depicted as little more than institutions of social control. Feminists derided medical paternalism as patriarchy in a white coat, and the era of the empowered patient was born. After Rolling Stone, Ebony and Jet all published stories about Henrietta Lacks in the mid-1970s, she naturally came to embody the righteous passions that saw informed consent and solidarity with the Third World as part of the same struggle.
It didn’t take long for the rhetoric of patient autonomy to evolve into the idiom of consumer rights. The revelation of the Tuskegee study coincided with the oil crisis of 1973 and the subsequent rise of neoliberal economics. The first patenting of a life form was secured in 1980, and since then the global trade in tissue derivatives has reached billions of dollars. According to Skloot there are approximately 17,000 patents for different versions of HeLa, which generate an incalculable amount of money for biomedical supply companies every day. The grotesque disparity between well-heeled biotech entrepreneurs and the struggling Lacks family lies behind the most common American response to their story: because the original tissue sample was taken without Lacks’s consent, her children should sue for a share in the profits from the cell-line. While superficially plausible, this prescription is likely to founder on a 1984 legal precedent in the case of Moore v. The Regents of the University of California. The case concerned a leukaemia patient called John Moore, who found out that a profitable cell-line had been developed from his spleen and sued the doctor on the grounds that his cells were his property. The California Supreme Court ruled that Moore had ‘abandoned’ his cells in the course of his treatment, and that they had become the property of his doctor by virtue of the ‘human ingenuity’ and ‘inventive effort’ that had transformed them into a laboratory tool. The judges slapped the doctor’s wrist for deceiving his patient about the real purpose of the ‘follow-up tests’, but agreed that conferring property rights on tissue donors would impede the progress of science. When it comes to the tissue trade, it seems that the incentive structure of neo-liberal medical research has triumphed. Admittedly, the law on these questions is still in flux, but the sheer size of the HeLa industry and the indispensability of the cell-line for medical research make it unlikely that a suit by the family would even get a hearing. Not that they want to bring one. Proud of their contribution to science, they are on record as saying they have no interest in making things difficult.
Despite the indignation with which people often greet the HeLa story, it’s not exactly clear where the wrong lies, beyond the indignities shared by all American families living in poverty and unable to afford health insurance. Imagine that a tiny sample removed harmlessly from someone in the course of receiving free medical care could go on to save countless lives. Would you give the patient the option to refuse? Is her right to informed consent really more important than the eradication of polio, the prevention of cervical cancer and the treatment of Aids? Jeremy Bentham’s padded and dressed skeleton at University College London would clap its wax hands in glee at the news that the moral legacy of the greatest happiness for the greatest number principle had paid such fabulous dividends.