This book tells the story of a woman called Henrietta Lacks, who died of cervical cancer in 1951. During her treatment, cells were taken from her tumour and cultivated in a lab by a scientist called George Gey, who was trying to solve the problem of growing human cells under laboratory conditions for research purposes. Henrietta’s tumour cells were the first ones he had managed to grow. In fact, they grew so well that he began giving them to other researchers and they ended up becoming a key tool for scientists researching cancer, other diseases, and how cells work generally. The descendents of Henrietta’s cells became known as the HeLa line and these cells are still used around the world today. The book also tells the story of Henrietta’s children, what happened to them after their mother’s death, and the author’s attempts to talk to the surviving members of the Lacks family.
Race plays a big role in this story. The Lacks family are black and are descended from people kept as slaves. Segregation was in effect in the US during the whole of Henrietta’s life, and this affected how and where she could get treatment for her illness. Segregation, and ongoing racial inequality to the present day, has affected her family as well. Most of them live in poverty and have not had access to good quality medical care or educational opportunities. As Skloot attempts to talk to members of the Lacks family, she is met with a lot of suspicion, in some cases bordering on paranoia. Skloot has to overcome supernatural beliefs and a lack of scientific literacy in order to help the Lacks family come to terms with the significance of the HeLa cell line. The family are wary of being exploited, and some of them feel that they are due some of the money that businesses have made from distributing Henrietta’s cells. Others, such as Henrietta’s daughter Deborah, have experienced huge amounts of stress from worrying whether their mother was exploited herself, suffered unnecessarily, or is still alive in some way. Clearly, the Lacks family have had a really hard time, dealing with addiction, abuse, racism and poverty. This can make the book a difficult read at times.
This is a less scientific book than most of the others I’ve reviewed on this site. Although there is some discussion about the use of the HeLa cells by scientists, the bulk of the story is about the Lacks family, and how the significance of their mother’s cells has affected them. The parts that deal with Henrietta’s life are lightly fictionalised, but clearly Skloot has done huge amounts of research to be able to tell this part of the story. The parts involving Skloot meeting the family are told in the first person, and are an interesting story in themselves, as she gradually gains their trust and cooperation. There is an extensive discussion at the end of the book about issues of patient consent and intellectual property when it comes to cells and genes used for medical research.
I have mixed feelings about this book. It raises some issues that are worth discussing within science and within our society. But by telling the story of the HeLa cells alongside the difficulties faced by the Lacks family, it implies that the two are related (although the author does not actually connect the two causally). Yet it doesn’t really address subjects that I think are more relevant to the Lacks family’s situation, such as the legacy of slavery and continued racial inequality, the difficulty of obtaining medical care in a country where this is expensive and where health insurance is often tied to employment, and the misconceptions and confusion that can arise from a lack of scientific literacy and a lack of educational opportunities.
There is also a lack of clarity around the idea of recognition for Henrietta’s contribution to science, versus the privacy of her surviving family. At times the book mentions that the family want Henrietta to be recognised for her contribution to science. And the book also discusses the fact that because the HeLa genes have been sequenced, it could negatively affect her surviving family. For example, they could be excluded from health insurance if it turned out they had a higher chance of having certain diseases due to their genes. But the book doesn’t really properly address the fact that these two goals are fundamentally incompatible; there can’t both be recognition for Henrietta Lacks and privacy for her family. (Although since the knowledge of her identity is public knowledge anyway, this is a moot point, but it would apply to future cell donors.)
So this is an interesting, well written book, and I’m glad to have read it. But ultimately, I’m not quite sure what it’s trying to achieve or what points it’s trying to make, so it left me a little disappointed.