This non-fiction book has become an international bestseller, charting a remarkable story that consumed the author for a decade.
Her name was Henrietta Lacks but scientists know her as HeLa. She was a poor Southern tobacco farmer whose cancer cells – taken without her knowledge – became one of the most important tools in medicine. The first ‘immortal’ human tissue grown in culture, HeLa cells were vital for developing polio vaccine, helped lead to important advances like in vitro fertilization and gene mapping, and have been bought and sold by the billions. Yet Henrietta herself remains virtually unknown, buried in an unmarked grave.
Now Rebecca Skloot takes us on an extraordinary journey, from the ‘coloured’ ward of Johns Hopkins Hospital in the 1950s to East Baltimore today, where Henrietta’s children and grandchildren live, and struggle with the legacy of her cells. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family – especially Henrietta’s daughter Deborah who was devastated to learn about her mother’s cells. She was consumed with questions: had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into Space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? And if her mother was so important to medicine, why couldn’t her children afford health insurance?
Reading a variety of scientific articles and books over the years, I’d already heard about these remarkable HeLa cells and was prompted to track this book down when I read about it in the New Scientist. The Immortal Life of Henrietta Lacks follows an amazing story, helped by Skloot’s vivid writing which grabbed me by the throat and sucked me into this incredible tale. I was appalled at the grinding poverty endured by the Lacks family and horrified at Henrietta’s treatment which seemed every bit as barbarically brutal as anything you’ll find in Tudor apothecary notebooks. It didn’t help that Henrietta was coloured at a time when the south was divided along institutionalised racial lines. However, I don’t think poor Henrietta stood a chance against the rapacious cancer that ripped through her – the sheer toughness of those cells that are still going strong today, decades after her death, is a testament to the aggressiveness of this particular cancer.
Henrietta was only thirty-one when she died, leaving behind a young family. A good portion of the story deals with the painful grief of children who were never given sufficient information to come to terms with their mother’s involuntary role in a whole number of scientific breakthroughs. While the rest of the world marvelled at the sci-fi headlines describing the HeLa cells and their contribution to humankind’s knowledge, Henrietta’s daughter was riven with horror at that thought that some debased Alien-type version of her mother was locked up in a laboratory somewhere, enduring endless torment.
In America, the law currently says that once patients have had growths/moles/tumours removed, these tissues are no longer belong to them. Furthermore, if researchers and biotechnological companies find a useful gene or cell, they are entitled to sell off these portions for a profit – and American citizens can’t do anything about it, according to the latest Supreme Court ruling. However, this book isn’t in the business of portraying scientists as unfeeling villains – George Gey who removed the tissue sample from Henrietta and was responsible for growing it on, worked tirelessly on the project and freely allowed other scientists around the world access to the HeLa cells, making it possible for the large number of advances and scientific investigations to occur.
What this book starkly highlights is that the myth that science can somehow operate outside the messy business of living, is just that – a myth. The fact that a bunch of cells harvested from a young woman dying of cancer were responsible for a number of number of medical breakthroughs, doesn’t alter the fact that her children suffered by being completely ignored by that process. And if Rebecca Skloot hadn’t arranged for a portion of the royalties from her book to go towards a foundation to help Henrietta’s descendants, the hard fact is that they probably would be still unable to afford medical insurance.