(A Book Review)
A non-fiction book about some cancer cells used for research may not sound like everyone’s cup of tea.
And, superficially, that’s what this book is about. In 1951, scientists in Baltimore grew human cancer cells in test-tubes for the first time. The cells grew and grew and grew, and they are still growing today, in labs all around the world. Having a plentiful supply of human cells to experiment on was a huge advance for scientists – the cells became a human equivalent of lab-mice, a work-horse of basic science and of drug development. The US government set up a cell factory to help rush through work on the Polio vaccine. The cells were sent into space to study effects of zero gravity on human tissue. They were used in early work on in-vitro fertilisation. Even though no-one knew about DNA when the cells were first cultured, they have since been used to develop many of the modern techniques of reading, studying and understanding DNA and genetics.
Despite the apparently dry subject matter, it’s an absorbing story, clearly and simply told for any audience, not just scientists. It’s populated by interesting characters, such as the figure of George Gey, the scientist who devoted his life to cell culture in the hope of curing cancer, spending his pay-checks on equipment for his lab, inventing his own equipment and struggling to pay his bills. When he realised how important his immortal cells would be, he shared them freely with others for the greater scientific good. When he knew he was dying of pancreatic cancer, he made his own bid for immortality – he arranged for his lab team to be present at his cancer surgery, to try to culture his cancer cells. His cancer was inoperable, and his wishes were ignored, much to his disgust.
When Gey died, there was an understandable focus in the scientific community and the media on the cells he had created, which by then were world-famous. The cells were called HeLa – by convention, they were named after the first two letters of the first name, and first two letters of the last name of the person the original sample was taken from. And his collaborators, who knew the true identity of “He… La…” felt it couldn’t hurt to release it. After all, she had been dead for nearly 20 years. An article was published with her real name, Henrietta Lacks.
And it is the story of Henrietta Lacks and her family that is the heart of this book. It’s a story of poverty, abuse, and survival against the odds. It’s a story of slavery, of racism and segregation (Henrietta died, aged 31, in a segregated ward at the Johns Hopkins Hospital). It’s a story of five children growing up without their mother. It’s a story of a two-tier society – while Henrietta’s cells were used to develop medical treatments that would save many lives, and while biotech companies marketed HeLa cells for hundreds of dollars a vial, none of her descendants could afford health insurance.
Mixed in with the history of the cells and the Lacks family is the author’s obsession with both. You can tell from the book that Skloot’s interest in this story was deeply personal, rather than commercial. After all, it’s not the kind of topic that guarantees you a place in the best-seller charts (although the book was in fact in the New York Times bestseller charts for over two years).
At the end of the book, you may have learnt some science and you may have learnt some American history. But the book also raises some ethical questions that may stay with you longer than any of the facts presented. Questions about informed consent – this concept that had not entered the scientific lexicon in 1951, and Henrietta had no idea her cells were being taken for research. Questions about who owns cell lines – the person from whom the cells were taken, or the scientists who grew them. Questions about privacy – photos, extracts from medical records, and of course biological and genetic information about Henrietta Lacks were published again and again without any kind of consent from her or her family. Almost unbelievably, this abuse of privacy continued even after Skloot’s book was published and Henrietta’s story became much more universally known. In terms of medical ethics, this book offers more questions than answers. For scientists who grumble about the red tape involved in modern research, this tale is a reminder of why safeguards are necessary.
On the back of the book’s great and deserved success, Skloot has helped set up a foundation to pay for education and medical expenses for Henrietta’s descendants. It seems that at last her family are getting a little bit back, in return for all Henrietta Lacks unknowingly gave to us.