The Immortal Life of Henrietta Lacks

Title: The Immortal Life of Henrietta Lacks
Author: Rebecca Skloot
Pub Date: 2010
Genre: Biography, Medical
Nutshell: The story of the nearly forgotten woman behind some of the most famous cells in science

This book has been on my radar more or less since it was published. I'm a sucker for approachable medical matter, and I like a good biography. My family has also been--well, "touched" wouldn't quite cover it...smacked?--by cervical cancer. I lost a grandparent to it and nearly lost a parent. So I have kind of a weird relationship to the subject matter that sort of made me interested but weirdly repelled. But it was available as an ebook from my library, so I thought I would finally give it a shot. 

And I'm pretty glad I did, actually. This is, as the praise will tell you, a well-written history of a lot of things. Cancer research, medical ethics, one woman's unwitting contribution, and the resulting fallout for her family. Obviously, the "human elements" are most compelling. Henrietta's life was short, but she left a legacy behind with her cells but also with her children. 

There are a couple disturbing things that the book reveals. One is the overwhelming amount of fear and paranoia that the Lacks family and other older black residents feel about the white medical community. But if you look into the history, as Skloot does, you definitely see some of the reasoning behind it. While this is ostensibly a medical story, it really brings an era of terribly destructive racism into sharp focus. I was born well after the peak of the civil rights struggle, but I do understand a fair bit about it. I knew about the Tuskegee experiments, for example. But the overwhelming fear that Baltimore residents had of Johns Hopkins was new to me. Most of their fears were unfounded, but the paternalistic view that so many doctors had of their black patients went a fair way into creating some horror stories all the same.

The other troubling thing is how cavalier many researchers are toward the concept of who owns a person's tissues and blood. Members of the Lacks family donated blood without ever being clearly told what it was for, and their genetic information and names were subsequently made public without their permission. Doctors and researchers either assumed that the family knew what they were involved with or directly tried to keep them in the dark as much as possible. One researcher hands Henreitta's daughter a dense medical textbook and tells her that all her questions are answered there. These are very poorly educated people, and the way many medical professionals handled them was certainly enlightening. 

Now, HIPAA and other laws have made some decent strides toward preventing some of what happened to the Lacks family. You can't just publish names and information now, you can't have access to medical records without direct permission. But doctors can still use or sell your tissues and blood for medical testing, and while it would be nice if they informed you what it might be used for and whether money might be generated from it, they certainly don't have to, and many don't. Your tissues aren't really you anymore. Which might not seem like a big deal, until you look at a family like the Lackses, who could not afford medical care while their mother's cells were selling for $100 a vial. They certainly felt it was unfair that they were in poverty while research companies had made billions selling what they viewed as parts of their mother. And while eventually most of them came to terms with the knowledge that there was really nothing that could be done, and that at least their mother was still helping people, there's still a stark and pretty inequitable contrast between a donor or a donor's family and the medical establishment.

There is also the matter of Henrietta's oldest daughter Elsie, who was committed to an asylum at a young age for what was probably epilepsy and mental impairment. Skloot uncovers details of her time at the Crownsville Hospital, and it is truly disturbing. It is a fairly small piece of the story overall, but what occurred there should not be forgotten.

Overall, this was not a hard book to read. Medical terms are explained, history is recounted, and stories are told fairly. There are no real bad guys in the story of Henrietta Lacks. There are certainly misguided people--products of their time who failed to uphold the standards of care we recognize today. There are careless people--professionals who did not do due diligence in obtaining even the slightest amount of informed consent, people whose zeal for discovery overwhelmed their better judgement. But there are no real villains, and that's probably a fair assessment. Henrietta was treated the same as any woman with cervical cancer would have been then. Her case was already far advanced and horribly complicated. My grandmother died over 20 years after Henrietta of the same disease. Doctors did their best for her person while she was alive (their best being rather primitive in today's terms, but still). It was after she died that they got a bit out of hand, but I don't believe there was evil intent behind their actions. It was standard practice for the time, and luckily for all of us, standard practice has improved quite a bit since then.

I'd recommend this book if you're interested in medical history, or just fascinated with the life of one woman who changed the world and never even knew.