What Book to Read?

The Immortal Life of Henrietta Lacks (2010) is a work of creative non-fiction. It combines two narratives; that of Henrietta Lacks and her family, and that of the HeLa line of cells cultured from the cervical cancer that killed her. Rebecca Skloot is a skilled science journalist, but she also has a novelist’s capacity to write movingly about the lives of the people involved in this remarkable story.

The amazing thing about the cells taken in 1951 from the tumour in Henrietta Lack’s cervix is that they didn’t die. For the first time, it proved possible to keep such cells alive indefinitely, and they kept on dividing, as it is in the nature of cells to do. This means they are a permanent source of cells available for use in various medical experiments and trials. The first major example of their worth was in the testing of the Salk vaccine against polio, a serious epidemic at the time. Skloot explains in relatively simple language some of the ways in which the cells have been used since, up to and including genetic identification and testing, and the development of a vaccine to protect against the Human Papilloma Virus, which was eventually identified as the cause of Henrietta’s tumour. I am pretty much scientifically illiterate, but even I could follow most of it.

Along-side the scientific account is the story of Henrietta and her family. For this, Skloot conducted extensive interviews with family members as well as consulting the few written records that exist. Some of the story is told in the words of the family members, particularly those of Henrietta’s daughter Deborah. ‘I’ve done my best to capture the language with which each person spoke and wrote,’ Skloot says. The decision to use these voices is important, because up until the writing of this book, they had been largely ignored. Henrietta Lacks was a poor black woman; her family did not know for years that the HeLa cell line even existed, let alone that it had come from her, and were not told anything meaningful to them about the use to which the cells were put. Skloot shows in detail their anger and confusion at being excluded from something they felt was so personal. Some of them also felt they had been cheated out of money made from selling the cells. Skloot must have had amazing persistence and integrity to gain the confidence of family members so generally hostile to white people connected to Henrietta’s cells. She rarely intrudes her views into the story, giving a careful and balanced account of events. Just once, Deborah’s manic behaviour – pushing her up against a wall – provokes a response: ‘get the fuck off me and chill the fuck out’. Deborah backs off. ‘I never seen you mad before. I was starting to wonder if you was even human cause you never cuss in front of me.’

Skloot nevertheless raises important issues about Henrietta as the ‘donor’ of the cells, and how her family ought to have been treated. These include the question of informed consent to medical procedures, patient confidentiality, the commercialisation of research and medical ethics. There is also an afterword addressing the current legal and ethical debate on tissue ownership and research. But what she also makes clear is that in the case of the Lacks family, all this must be seen through the prism of race and poverty.

The book presents a stark picture of life for poor black Americans in in the 1950s, with not much improvement for some of them today. Henrietta was treated at the Johns Hopkins Hospital because it was the only one for miles around that took black patients, though only in segregated sections of the hospital. Skloot says that her treatment – primitive as it now seems– was probably no different from what she would have received as a white patient. But her daughter Elsie’s institutionalisation and death in the Hospital for the Negro Insane was pure racism. With segregation and poverty goes ignorance; it is no wonder that the family didn’t understand and feared ‘science’, and felt exploited by white scientists. In the words of Henrietta’s son Zakariy ya : ‘Them doctors say her cells is so important and did all this and that to help people. But it didn’t do no good for her, and it don’t do no good for us. If me and my sister need something, we can’t even go see a doctor cause we can’t afford it. Only people that can get any good from my mother cells is the people that got money, and whoever sellin them cells – they get rich off our mother and we got nothing.’

Using part of the royalties from the book, which fortunately has sold very well, Skloot has set up the Henrietta Lacks Foundation to help her descendants and others who have made important contributions to scientific research without their knowledge or consent. You can read more about Rebecca Skloot and her foundation here.