Where to start with such a book? The story begins and ends with Henrietta, who was a young black woman who died of cervical cancer in 1951, and while she was being treated a sample of the cells from her cancer were taken for research. Something about the virulent nature of her cancer meant that instead of dying, like most cell samples, hers continued to grow and the resulting cell culture has since spread and been used all over the world, in a million different ways, in a million different experiments, helping to test new drugs and treatments, having the biggest ever impact on the advancement of medical science by a single person. This book is not just her untold story, but the story of many other people besides, her family, the scientists involved and the author herself. It is also the story of medical research ethics and how it has changed, or not, and the impact the story has had on the debate into health care provision in the US.
The book is partly about Rebecca, her enduring fascination with Henrietta's story and her struggle to write the book. It took her ten years of research, of getting to know and earning the trust of Henrietta's family, and following up every aspect of the scientific impact of her cells. Obviously using reminiscences from her extended family she describes Henrietta's life, from early childhood, growing up on a tobacco plantation where her forebears had been slaves, her marriage to her cousin Day and her life with her growing family, up to the point where she falls ill with the cancer and dies. The story then follows the cells, known as 'HeLa' cells, an abbreviation of her names. The original sample was grown by George Gey a researcher at Johns Hopkins who immediately realised the potential uses for the cell culture and began sending samples to other scientists for their research. In a very short space of time HeLa cells are being used all over the world. In between the story of the cells is the story of Henrietta's children and the impact on them of discovering their mother's cells had been taken and were still 'alive'. Henrietta's young children, in spite of the presence of extended family, suffered extensive neglect and abuse at the hands of a woman who was supposed to be caring for them. The shining light of the story is Bobette, wife of their older brother Lawrence, who after several years rescues Deborah, Joe and Sonny and does her best to raise them and make their lives better. We are taken into a world that felt to me like another planet; poverty and deprivation like it is hard to imagine existing in the western world and ignorance and suspicion of anything outside their experience. They grew up in a time when segregation was normal and prejudice all pervasive. Their lack of education makes them fearful of the medical profession and Deborah particularly suffers because she imagines that her mother is experiencing the pain inflicted on her cells in all the experiments. Nobody bothers to explain anything to them and they become angry at how many companies have become rich from growing their mother's cells when their family cannot afford proper health care.
So the story weaves back and forth between the science and the family. The style is very journalistic and Rebecca stays very true to the reality of the events. She doesn't talk down when presenting the science but makes it very accessible for the ordinary reader. She doesn't try and pull any punches in her presentation of the family: as she quotes one family member in the opening page, "If you pretty up how people spoke and change the things they said, that's dishonest. It's taking away their lives, their experiences, and their selves." So you get a real sense of how and why Henrietta's family reacted and have come to an understanding of all that has happened. The book is also about her developing friendship with Deborah and her promise to help her find out about her older sister Elsie, sent to an institution some time before her birth, so in spite of her original intentions the story becomes so much more than a mere retelling of the life of Henrietta. Her 'afterword' takes the story further and discusses the implications of her research into this case. It has thrown up all sorts of issues surrounding 'informed consent' for research subjects and the ownership of tissue, and the need for the scientific/medical community to change it's attitudes towards the people who's tissue they use for research and who is really benefitting from tissue donations? It then also links into the issue of access to health care, something being hotly debated in the US at the moment.
I really have not done this book justice here as there is far more to say about it. It is a brilliant book. Well written, thoroughly researched and very readable, much more a human story than a popular science book, but packed with information and food for thought. A real eye-opener in more ways than one, allowing you to wonder at the miracle that is the HeLa cells at the same time as being drawn into the lives of the Lacks family.