Her name was Henrietta Lacks, but scientists know her as HeLa. Born a poor black tobacco farmer, her cancer cells – taken without her knowledge – became a multimillion-dollar industry and one of the most important tools in medicine. Yet Henrietta’s family did not learn of her ‘immortality’ until more than twenty years after her death, with devastating consequences…
Rebecca Skloot’s moving account is the story of the life, and afterlife, of one woman who changed the medical world forever. Balancing the beauty and drama of scientific discovery with dark questions about who owns the stuff our bodies are made of, The Immortal Life of Henrietta Lacks is an extraordinary journey in search of the soul and story of a real woman, whose cells live on today in all four corners of the world.
Regular readers of Jo’s Book Blog will know that I don’t read a lot of non-fiction, although I’ve tried for one a month this year, with a 75% success rate. The Immortal Life of Henrietta Lacks is one that has been on my radar for a long time, and that I finally picked up earlier this year. It is, hands down, one of the best non-fiction books I’ve read, both for the content and the writing.
In 1951, Henrietta Lacks went to a doctor with pain and discomfort in her lower abdomen, knowing that something wasn’t quite right. Diagnosed with cervical cancer, she received treatment but sadly passed away in spite of the radiation therapy she received (which sounds absolutely awful, to be completely honest). During one of her examinations, a small sample of her tumour was taken for testing without her knowledge or consent. Those cells, subsequently referred to as HeLa, became the first immortal cell culture, and samples have since been shared with scientists worldwide. They have been widely used in cancer trials, to develop vaccines, and in the development of new medicines, and her cells were sent into space to understand how human cells might be affected by those conditions to name but a few.
I’m not sure whether I’m surprised or not that, for a long time, the scientists using those cells never thought to question their origin. It was a story picked up from time to time by the occasional news outlet, and yet nothing that really grabbed any attention, particularly when some recorded the name as Helen Lane or something similar but equally incorrect. Rebecca Skloot first came across the mention of HeLa cells in a biology class, and which then cropped up regularly throughout her education. The question of the individual behind them never left her, and after graduating she began to dig deeper into the origin of those cells with insatiable curiosity, a project that would take her years and that eventually resulted in this excellent book.
As a scientist, I feel that Skloot is well-placed to share Henrietta’s story, and she presents the more scientific aspects in a way that a layperson such as myself can follow and understand. And while that aspect of this book is fascinating, I think that what really makes this book stand out is the human element. She reaches out to Henrietta’s family, and while there is understandably some reluctance on their part to discuss the matter at first, Skloot’s perseverance pays off. She discovers more about Henrietta and her all too brief life, but also about Henrietta’s husband and children and their own extended families. It’s a harrowing tale in places, as you see the impact on her children of having grown up without their mother, something that was particularly tough for her daughter, Deborah, with whom Skloot spends a lot of time while researching this book.
I felt a real mix of emotion upon reading this. On one hand, those cells have been used for the greater good – the development of vaccines and medicines can only be a positive thing, and it’s something that I expect many of us have benefitted from, however unknowingly. And yet, one can’t ignore the irony there are corporations and individuals who’ve made money out of the existence of those cells when her family have been unable to afford medical treatment throughout much of their lives. It feels exploitative at best, particularly when you come to understand the fear, born out of a lack of understanding, that the family experienced upon discovering that Henrietta’s cells are still alive. The author was the first to explain the science and the meaning behind it all to the family, something that they’d not understood previously, and I think that there’s a huge amount of kudos due to Rebecca Skloot for helping them in that way. Her care for the family throughout researching this is clear and a real testament to her as an individual.
At the time the original sample was taken, laws and regulations about who owns their cells didn’t really exist, nor did the same consideration of consent that we expect today. Skloot shares how Henrietta’s situation as well as other, similar cases, have helped to bring about changes in the law although the situation still isn’t as clear as you might hope or expect. And it’s clearly a difficult balancing act – too much regulation might hinder scientific progress which no one wants, and the Lacks family throughout were pleased that Henrietta’s cells had been used in a positive way, despite the injustice in their situation.
The Immortal Life of Henrietta Lacks is an absolutely fascinating account of the scientific developments that have been made possible by that initial biopsy, whilst also uncovering the story of the woman who unknowingly provided them and who might otherwise have been lost to history. Meticulously researched, this reads as well as any novel, and is all the more devastating for being true. Since its publication, the Lacks family have received a financial settlement, and I expect that this book helped significantly in bringing about justice and perhaps (I hope) a degree of closure for the family. Highly recommended.
Book 15 of 20 Books of Summer.
