The full title of this book is: “The Immortal Life of Henrietta Lacks: She died in 1951. What happened next changed the world” which of course completely worthy of what this book is about…
I’m a sucker for any human interest science story. Not quite sure why, maybe it appeals to both my female softie side, as well as my far more analytical science loving side – well this book had both in spades, and is the best non-fiction book I’ve read all year.
I knew nothing about cell discovery or even how medical centres get cells to test with – or even what happens to your cells (and other tissue) at the hospital or the lab once you’re done with them (e.g. appendix out when I was 14, they will likely still have it). This incredible book completely opened my eyes to some absolutely shocking history…
The book is primarily about the Author wanting to speak to the family of Henrietta Lacks, the woman who’s cancer cells gave birth to the never ending cell line HeLa. They were the first cells that were grown and survived in a lab – kicking off the ability for medical research and tests on cells. Here is a timeline of how these cells have been used over the past 60 years – from cancer research to polio research to effects of radiation on cells.
But it wasn’t just the testing of cells that’s covered in this book, some of the undersides of Science and medical ethics as well…
Essentially, Henrietta’s cells were taken from her without permission. Whole industries have been built around her cells, from the commercialization of them, through to how they contaminated other cells, and required whole rafts of research to be restarted. Her family, have never seen a cent of any profits made, due to there being no laws covering this type of tissue at the time. There has been no acknowledgement from the research team that they took the cells without permission.
The most disturbing section of the book was taking these malignant cells and a doctor injecting them into unsuspecting people, to see what would happen. They weren’t informed of the risks, they weren’t informed at all, they were even in some stages flat out lied to, to ensure there were willing participants for the studies.
In February 1954, Southam loaded a syringe with saline solution mixed with HeLa. He slid the needle into the forearm of a woman who’d recently been hospitalized for leukemia, then pushed the plunger, injecting about 5 million of Henriettta’s cells into her arm. Using a second needle, Southam tattooed a tiny speck of India ink next to the small bump that formed at the HeLa injection site. That way, he’d know where to look when he reexamined the woman days, weeks, and months later, to see if Henrietta’s cancer was growing on her arm. He repeated this process with about a dozen other cancer patients. He told them he was testing their immune systems; he said nothing about injecting them with someone else’s malignant cells.
The doctors that stood up to this had heard about similar things happening previously, medical experiments on people of their religion during WW2. These doctors were Jews, and familiar with the Nuremburg code, put in place after the Nazi atrocities, Dr Mengele and other experimenters.
I was absolutely horrified at this stage, but kept reading.
A basic history of medical ethics is included as you read through the book, but I was still disgusted to read that if your tissues are used in anyway after they have been taken (such as my lovely appendix that I mentioned earlier), even if they are used for profit – there is no way that you have any claim to them. I understand that of course we do need to test and discover things, and that medical research is incredibly important, but I would like to know how and if my tissues are going to be used… And I still don’t understand how if my appendix happened to contain a particular type of cell line (or something) that a doctor was then able to create a patent from – then how does that patent remain his alone? I guess the ignorance of the patient is the key here, you don’t really know what happens once its (yes YOU appendix) left your body.
Worth thinking about, no?
An incredibly interesting book, leaving a lot to your own interpretation and thought as well as sharing an incredible story about someone who sounded like an incredible woman. Thanks Rebecca Skloot for having the patience to discover who HeLa really was and bring her to life in the wonderful way you have.