Henrietta Lacks died in 1951, and this is a book about the two strands of her immortal life – her cells and her family. It’s also about medical ethics in research, informed consent, the question of who owns the bits of body that are removed (like cells, tonsils, or blood), and the huge number of scientific discoveries made possible by Henrietta’s cells.
Henrietta was a poor black woman living in rural Baltimore, who developed an aggressive form of cervical cancer and died not long after diagnosis at the age of 31, leaving behind five children and her husband, Day. Her cancer cells were taken (not donated) by a scientist who happened to be working with the hospital. He had been trying to culture ‘immortal cells’ – cells that could survive and reproduce to be used in research. Henrietta’s particular cancer, combined with her HPV, meant her cancer cells were the first to become ‘immortal’. They were given, freely at first, to any scientist wanting to work with them, and their use led to the polio vaccine, cancer treatments, and numerous other technical and medical developments. The cells are still alive today and are in use all over the world. You can buy a tube of Henrietta’s cells (called HeLa) and have it shipped to you within hours.
But Henrietta’s family had no idea her cells were even taken. The Lacks family were poor, not well educated, and suspicious of the intentions of white doctors because of rumours that black people were kidnapped for use in medical experiments. (These rumours were not without foundation – on the very same campus, and at the very same time, that HeLa cells were first produced in large volumes, the Tuskagee syphilis study was being conducted, which involved injecting black men with syphilis and withholding treatment, without consent, and allowing them to die to watch the progression of the disease). This lack of informed consent had consequences. When scientists needed genetic markers for HeLa cells, they took blood from the Lacks family without being clear that’s what they were doing. The family thought they were being tested to ensure they didn’t have the same cancer as Henrietta. Henrietta’s daughter, Deborah, already suffered from anxiety, and suffered a great deal of stress waiting for ‘test results’ that were never going to come.
The book is written in a journalistic style, which I really liked as it’s never dry and very easy to read. Skloot inserting herself and her process of learning about Henrietta and the Lacks family was used well to demonstrate just how little trust the family had in others asking questions, and how much Henrietta’s death and her cells being taken had affected them. However, at other times there was too much of Skloot, and she needed to take a step back and let Henrietta and her family have more of the focus.
The issue of race, medical/research ethics, and how the two can become tangled is sometimes missing from medical history books (and all history books). In that respect, this is an important book, as well as a fascinating and very readable one. Henrietta’s enormous contribution to science should be known.
I was lucky enough to win a copy from Kate Gardner’s blog, which you can check out here.