This book was a gift from a friend, and it’s been languishing on my shelves for some time (as books often are) waiting to be read. It’s exactly the kind of book I would like: non-fiction (because I am trying to read more non-fiction…and succeeding), written by a woman about a woman, sciency. All those things add up to a considerate gift. So why had it been sitting on my shelves for so long? The answer: it seemed like quite a daunting read. So when I signed up to the #TBR20 initiative over on Twitter, this seemed like the exact kind of book that should be on my list.
The Immortal Life of Henrietta Lacks tells the story of one woman’s search to find the story of the life of another woman, a poor black woman who died in the 1950s from cervical cancer, whose cells have changed the face of modern medicine. The cells, known as HeLa, have allowed significant medical advancement to be made because they were the first cells that were successfully grown and kept alive outside the human body. As a student of biology Skloots learned of the HeLa cells and how important they’ve been in medical science – enabling development of a polio vaccine, cancer therapies, cloning and gene mapping – but discovered that little was known about the woman herself. So she set out to write this story which is at once a personal history - piecing together Henrietta Lacks from her medical records and the vague memories of friends and family, many of which have suffered as a result of the famous cells - as well as a potted history of cell culture, including both the development and ethics of this branch of medical science.
What follows is an incredibly engaging story. Skloots is open about her investigations, she manages to insert her search for Henrietta Lacks’s story into the book though it’s neither arrogant nor self-serving or intrusive. Instead we learn through Rebecca’s eyes how the Lacks family have been affected both by their personal loss – the loss of Henrietta as a mother, partner, cousin – as well as the impact of having Henrietta’s famous cells linked to their family. There is also the ethical impact: in the case of the medicine industry millions of dollars have been earned selling Henrietta’s cells, yet the Lacks family, including Henrietta’s children, are so poor they can’t even afford medical insurance. Henrietta’s cells have benefitted millions, enabled many people to become rich, yet not the Lacks family itself.
This leads, neatly, onto the question of medical ethics which is explored in some depth in the book. Skloot manages to sit very carefully on the fence neither judging for or against the medicine industry. On the one hand there is considerable benefit in allowing the medical profession to conduct research openly and freely, so the idea of allowing individuals a proprietary interest over their tissues and cells could inhibit medical progress. On the other hand, some appalling abuses have taken place in both the context of medical research programmes and the acquisition of samples from living patients. It raises some interesting questions about the nature of informed medical consent that still need to be answered today. I found myself horrified by stories of medical experimentation such injecting healthy and unhealthy patients with HeLa cells to see if they developed cancer, without telling them that there was a cancer risk (many injectees went on to develop tumours). In many cases these experiments were conducted on black people, and there’s a sense throughout the book that the black community were subjected to some terrible treatment simply on account of being black, including Henrietta’s deaf & dumb daughter Elsie who died shortly after Henrietta in an overcrowded and dirty asylum where she, too, had been experimented on. There’s also the question of whether allowing organisations to apply a proprietary right over things like genes is, in and of itself, a greater inhibiting factor. The idea that organisations must be allowed to make money or research will not happen is a silly one; history is peppered with examples of scientists undertaking research as a matter of following curiosity, or out of a personal interest (loss of a family member) or simply for the common good. Included in this is George Gey, the man whose lab took Henrietta’s cells and grew and grew them. Cells that he gave away, freely, enabling others to conduct research and make money whilst he remained always on the cusp of broke.
But this is a story about Henrietta, and Skloots manages, through careful piecing together, to construct the story of Henrietta Lacks. It is a name more of us ought to know, to understand how her contribution has led to significant medical advancement. Her story is not an untroubling one; her children have led difficult lives and are variously proud and fed up with the story of HeLa. Skloot doesn’t let us forget that this is a story about a woman, a family and a community, that at the heart of the HeLa story is a dead young woman who left behind a grieving family which have never quite recovered from her loss.