This story is true, but it is really quite remarkable. In 1951, a young poor black woman named Henrietta Lacks died of cervical cancer. During her treatment, cancerous cells were taken from her body – without the knowledge or consent of Henrietta or any of her family, and these cells became the first to be able to be grown independently. Even now, more than 60 years later, Henrietta’s cells (known as HeLa) are still being grown, and have been used in numerous – countless even – medical experiments, to help find cures for cancer and AIDS amongst other diseases. HeLa cells have been launched into space, used in nuclear testing, and…well frankly, all manner of things. However, her family did not find out about her cells for years, and when they did, it caused them great consternation and confusion.
This quite remarkable book tells the story of the HeLa cells and some of the incredible advancements in medical science in which they have been used, but it also raises the thorny issue of consent and ownership. (Who DOES own your cells, and is it right that they could be collected and used without your consent?) Importantly the book also discusses Henrietta as a person, and looks at the effect that the whole matter has had on her descendants, who are still unable to afford their own medical care (in other words, they might not be able to afford the treatments that their own relative’s cells were instrumental in creating).
I found it a fascinating read. I was concerned that the science parts might be a bit difficult to understand, but Skloot sets it out in a way that makes perfect sense. She has clearly conducted a huge amount of research into the HeLa cells, and I felt that I learned a lot about them. For that reason alone it was a worthwhile read, but what I really liked were the parts where Skloot met with members of Henrietta’s family (and in particular, Henrietta’s daughter Deborah, who was literally made ill by all the stress caused when she found out about her mother’s cells).
It really made me think. I mean, REALLY made me think a lot about the issue of informed consent, and ownership of cells. On the one hand, if people were classed as the owners of their cells and tissues, they could start demanding money for their use (although after reading this book I don’t actually believe that this would happen a lot). They also may object to their cells being used in particular kinds of research. Such objections could slow down scientific and medical progress. On the other hand, it seems fair that people should have the rights over what happens to parts of their own body. The book does not attempt to answer the question, but it does look at previous cases, and discusses the opinions of many professionals in the field, who take opposing viewpoints.
I really liked this book a lot, and would definitely recommend it.
(Author’s website can be found here.)
Between the Pages 