This was one of those books I just picked up almost at random as I was browsing round a Waterstones in Covent Garden one day. Having looked at the endorsements on the front cover, I was surprised as to why I hadn’t heard of it before. It seems to have garnered lots of praise and accolades yet I can’t recall a single reviewer ever mentioning it, nor had I seen it mentioned in the press. After buying it, it came back to mind recently when I noted it being mentioned in Adam Rutherford’s Creation.
What we have here is science told as a narrative. It is not only the narrative of the events and discoveries that were made, but also the narrative of the uncovering of the story. So while it starts out as a biography of Henrietta Lacks (prefaced by a personal story of how Skloot became interested in Henrietta) it expands its scope and becomes a part autobiography of Skloot’s battles to be able to tell Henrietta’s story, and that of her family.
Henrietta Lacks was a black American woman who died in 1954. The crux of the story is what happened shortly before she died. You see, she died young. She died of cancer. After her diagnosis a biopsy was taken from her cervix and the cells grown in culture. It is those cells that are the heart of the story. From here, we go back a short time and tell the story, as far as it is known of Henrietta’s life, growing up and getting married in the American state of Maryland.
The cells that were taken from her body were capable of being grown in a laboratory, something that scientists had been aiming for but had not been successful with. With these cells (named HeLa), it enabled labs across the world to be able to a variety of tests without doing them on living humans. After all, even though they were cancerous, they were still human cells and behaved as such. Skloot tells us the story of 20th century medicine from the cells’ point of view, both the good and the bad. Many of the greatest developments seen in the last 60 years have involved the HeLa cells in one way or another. Sometimes this was unintentional as it turns out that where other cells were grown in cultivation they were in fact contaminated by HeLa.
Coupled with this is the story of the Lacks family and their struggle to come to terms with Henrietta’s legacy. It was years before they even realised that her cells were being used for research purposes. When they did, this was around the time that details were emerging of the Tuskegee syphilis scandal where, if you’ve not heard it before (I confess I hadn’t), black people in America were deliberately infected with syphilis under the guise of free healthcare. So there was deep suspicion over what Henrietta’s cells were being used for and also who was profiting from them. Skloot’s role here was not only as someone researching a book but also of the one who helped the Lacks family, especially Henrietta’s daughter Deborah, understand what happened.
The book ranges over a number of diverse topics. One of those that I noted in particular was the development of medical ethics; not so much in theory, but the practice. For the descriptions (and yes, as a warning, they are quite graphic – particularly at the start of the book) may well strike you as particularly barbaric. The reason why this jars against a modern sensibility is that when the facts surrounding the lack of consent about what was done with Henrietta’s cells became more widely known within the medical community it spurred people into action.
As an aside, I encountered a slight confluence of issues as I read this, as I was also watching the American tv show, The Wire, during the same period of time as I was reading this (actually, I’ve been on The Wire all year; the book took about 3 weeks to read). But they are both predominantly based in the city of Baltimore and have a huge amount to say, in microcosm, of the state of racism in America in the last half a century or so.
One of the things that becomes clear, though whether this was the author’s intention, I’m not sure, was the sheer barbarism that still persists within what passes for a national healthcare service within America. One of the ongoing battles the Lacks has had, and a cause of their major gripes were that the vast leaps in scientific work as a result of Henrietta’s cells did not allow them the financial means to be able to pay for their healthcare. The USA remains a country so backwards that if you go to a hospital, they have the audacity to present you with a bill – which the rich usually pay for through insurance and the poor are made to go without. The concept of universal healthcare which is free at the point of need still hasn’t made the journey across the Atlantic.
The book has apparently become a standard text in some university courses on cell biology. That’s not because the science is overly technical, though what is there is excellently communicated, but because it is a story of one aspect of modern science that has rippled far beyond the Maryland origins of one bereaved family. C.P. Snow famously espoused the notion of the two cultures: humanities and sciences. Here, Skloot has woven the two together to make a fabric that is stronger than either and makes for a fabulous piece of writing. It is educating, enthralling and overall one of the best pieces of writing I have had the pleasure of reading. It was only because of the more immediate need to heed the words of Harry Leslie Smith that this missed out on being my top book of 2014.