Out of America: Millions of tons of immortal cells – all grown from a single tissue sample taken from Henrietta Lacks before her death from cancer in 1951 – are used by researchers around the world, amid a debate about ethics, race and the rights of donors and their familiesTHE INDEPENDENT ON SUNDAY, Sunday, 7 February 2010
The life and legacy of Henrietta Lacks is commemorated in the book, written with the help of her family
She was a poor black tobacco worker, the descendant of slaves. She is buried in an unmarked grave in a clearing, just outside the little town in rural Virginia where she grew up, now all but razed from the face of the earth. Whether or not her soul lives on is a matter of religious belief. Unarguably though, her body does, and for that reason, Henrietta Lacks may be the most important woman in the history of modern medicine.
Her death in October 1951 from cervical cancer, in a public ward for “coloreds” at the then-segregated Johns Hopkins hospital in Baltimore, was both agonising and unnoticed – as routine in its way as the excision by a surgeon a few months before of a small sample of tissue from the malignant tumour in question. The sample was taken to a lab, and called HeLa. The name, as was customary, was taken from the first two letters of the donor’s names.
Hitherto, no human cells had grown in culture. But Henrietta’s cancer cells were different. They would not stop growing. More than half a century on, HeLa remains an inexhaustible source of living cells for testing, a priceless tool for medical research around the world. They were crucial for the development of the polio vaccine, and have contributed mightily to advances in the fight against cancer, to gene mapping and the study of diseases from leukaemia to Aids. They have been sent into space and one day may help us discover that medical Holy Grail, a cure for cancer.
In all, countless trillions of cells have been produced. If they could somehow be put together, it has been estimated, they would total millions of tons – a quite inconceivable figure given that thousands of cells can fit into the full stop at the end of this sentence. Not bad, as a physical measure of immortality, for a woman who when she died at the age of 31 was hardly five feet tall.
On scientific grounds alone, the story of HeLa would be extraordinary. But in science like the rest of life, context is everything – and that context is if anything even more gripping than the story itself. Henrietta and her family have been written about before, and a dozen years ago the BBC made a documentary about her, called The Way of All Flesh. But a stunning book published last week is surely the definitive work on the subject. At one level, The Immortal Life of Henrietta Lacks by Rebecca Skloot is a biomedical thriller. But it is far more: a case study of race and medical ethics, of the problems that plague black society, and of how a family comes to terms with its past.
Not least, it recounts Skloot’s own obsession with the Henrietta mystery, and her long effort to persuade her subject’s children, above all Henrietta’s daughter Deborah, to open up to a white writer as they struggle to come to terms with the reflected celebrity in which they so uncomfortably bask.
For humanity, HeLa has brought vast benefits; for Henrietta’s family it has generated mainly turmoil and anger. Finally the ice is broken, and Deborah agrees to co-operate. “Get ready girl,” she tells Skloot, “you’ve got no idea what you gettin’ yourself into.”
Henrietta had no idea when she died that her tissue was being used for research, still less that it had such miraculous properties; indeed, only in 1973 was she publicly confirmed as the source of the wonder-cells. That year, Henrietta’s daughter-in-law, Bobbette, also learnt the truth, from the friend of a friend, who worked in cancer research and used HeLa cells routinely. “I ordered them from a supplier,” he added casually, “just like everyone else.”
“Just like everyone else.” For Bobbette and the other Lacks, the implications of those words were terrifying. The infamous Tuskegee syphilis project, whereby black patients since 1932 had been the object of an experimental study without being told a cure – penicillin – existed for the disease, had only been shut down a year before. Once again, it seemed, poor and unwitting African-Americans were being exploited for medical research. The “night doctors” of legend, said to kidnap and murder blacks for this purpose, were stalking the land for real.
What happened to Henrietta and her cells broke no laws in 1951, and would break none today. US courts have ruled that an individual’s consent is not required for his or her discarded tissue to be used for research. For its part, Johns Hopkins (which, unlike many white-run hospitals in those days, admitted black patients) felt that a sliver of tumour was a perfectly reasonable price for free treatment.
Nor did the hospital make money from its discovery. George Gey, the hospital’s head of tissue research who discovered HeLa’s properties, sent free samples to anyone who asked. These days, patients who know they have valuable tissue may set their price before it leaves their body; if they don’t, then too bad. On the other hand, the biomedical companies that produce the stuff make money. Such is how capitalism works. Whether capitalism’s sharing of reward is fair, however, is another matter.
Astonishingly, the Lacks have never sued for the rights to HeLa, even though Henrietta’s children carry some of her DNA – and even though, years later, they were asked by Johns Hopkins to provide blood samples. They thought they were being clandestinely tested for cancer. In fact, it was to gain DNA data to tackle contamination problems caused by the prolific HeLa cells. But once again, those from whom the samples were taken were never told why.
After reading The Immortal Life of Henrietta Lacks, you can’t help feeling that the people who provide the original raw material are being short-changed. These days, researchers can take out patents on genes and charge a small fortune for their use in testing. In 2001, HeLa cells, for instance, were running at $167 (£107) a phial. But Henrietta’s descendants have never received a penny for her incalculable gift to science.
Life was not easy for any of her five children – least of all the youngest, Joseph, born a year before she died. A violent kid called “Crazy Joe” for his unpredictable ways, he was jailed in 1971 for 15 years for second-degree murder. In prison, he converted to Islam and changed his name to Zakariyya, but he never lost his resentment at what had happened to his mother.
“Them doctors say her cells did all this and that to help people,” he complained to Skloot. “But it didn’t do no good for her, and don’t do no good for us. The only people that can get any good from my mother’s cells is the people that got money, and whoever’s selling them cells.” Or as another of her sons put it, even more topically, “If our mother’s so important to science, why can’t we get health insurance?”
But ultimately, this is a story of a family coming to terms with itself, and the legacy thrust upon it. There are two especially poignant moments. In 2001, Deborah and Zakariyya finally visit the lab at Johns Hopkins to see some living cells traceable back to their mother, exactly half a century before. As they leave, even Zakariyya’s anger dissolves, as he touches the doctor on the back, murmuring just “thank you”.
A few days later, Deborah and Skloot set out to resolve one final mystery: the fate of Henrietta’s fifth child, Elsie, an epileptic who died at the age of 15 in 1955, at what was once Maryland’s Hospital for the Negro Insane. Today it is a well-kept school and community centre; then it was infamous for the overcrowding and squalor in which patients lived, and for primitive experiments conducted on their brains.
At first, the mission seemed hopeless; virtually all the hospital’s records for the 1950s had long been destroyed. A few autopsy reports however survived – and amazingly one of them was Elsie’s. Even more miraculous, attached to the page was a photograph, of Elsie being measured for height, seemingly screaming with pain, her head held in place by a pair of hands belonging to a white member of the staff. The picture was gruesome, but in its way it was closure. Just as Skloot’s book represents a kind of closure for Henrietta Lacks as well.