Welcome to 2013, my pretties. I’m already behind on my reviews, but I’m up to date on my reading, so we’re good.
I’ve wanted to read The Immortal Life of Henrietta Lacks for quite some time. It started showing up in lots of different places and on lots of lists. I learned a tiny bit about the book and it sounded interesting, but then it was submerged in my To Be Read list and stayed there. Happily, my book group picked it for our first meeting of the year.
For those who don’t know the story, here’s the simple version:
In the early 1950s, Henrietta Lacks went to Johns Hopkins because she knew something wrong wrong with her womb. She was diagnosed with cervical cancer. As part of the examination, her doctor took cell samples from her tumor and passed them along to researcher George Gey, which was common practice at the time. After a brutal course of cancer treatment, Henrietta died, leaving behind five children.
Her cells, however, did not die. Gey had been struggling to find human cells that would continue to grow in a lab in order to study them. Henrietta’s tumor cells did not die. He was able to ship them all over the world and her cells were used in seemingly infinite biological and medical research. Henrietta was gone, but HeLa, the name given to her cells from her first and last name, was left behind. Her cells were used to research AIDS, cancer treatments, vaccines, the effects of radiation, the effects of weightlessness in space, and much much more.
Her family didn’t know.
Decades later, researchers noticed a genetic marker that was contaminating samples and realized that every lab had been taken over by HeLa and that many research projects were tainted with their potency.
To learn more about this genetic marker, researchers tracked down her family for blood samples to learn more about their DNA. Her family became suspicious, wanting to know who these doctors were and why they were asking about their mother.
The result is two completely different stories that are impossible to separate.
On one hand you have medical research and the common procedures of the day. Because of what was done, many things were created and developed that have helped people all over the world.
On the other hand you have the treatment of a black patient in the 1950s. Uneducated patients deferred to their doctors, especially when they didn’t understand. When a white man with a degree told you something, you’d nod politely. Sometimes you’d follow orders (Henrietta’s cancer treatments) and sometimes you’d walk away knowing that the doctors had no clue what your reality was like and that their suggestions were pointless (Henrietta’s refusal to have her STDs treated because she knew her husband would continue to infect her).
This was the part that drew me into the book and I thought it would be easy. White doctors used her cells for research, but they also made money. Her family never had money, didn’t know what had happened and now couldn’t afford their own medical care. They should be reimbursed. Simple.
Only it’s not.
Standard practice in the 1950s had nothing to do with consent, and if doctors did request it, they still didn’t inform their patients of what was happening. Doctors would inject cancer cells into a test subject’s arm to see what happened. They’d then remove the lumps if they were becoming tumors. Did the patient know this? Probably not. They might not even know they were part of a cancer research study.
The ethics of the time… well… there sort of were no ethics. Everything was seen as being up for grabs, especially after it was removed from a patient. Alive or dead, that part of you was gone from you, so why not pass it along to someone who might make great medical gains?
I was angry for the Lacks and I did want something to happen to make things OK, but I soon realized it just isn’t that easy. The advancements that were made because of Henrietta and HeLa are astounding. Her cells brought life to others. The doctors and researchers didn’t stop to think about what the individual human effect on the Lacks family because they were thinking of the universal gains for all humans.
Skloot made excellent decisions when writing this book. She starts with Henrietta’s life; a biography of who this woman was and what she meant to people. She then transitions to what HeLa meant, and continues to mean, to medicine. She explains the science of the time, the doctors involved, the social obligations of the day, and how research was done. It was easy to see how Henrietta the person disappeared when looking at HeLa. She then moves back to the present by catching up with Henrietta’s children as they not only try to learn who their mother was, but what science had done with her. She does jump around in time (A+ to whoever decided to add the timeline to each new chapter!) but she follows a theme and everything makes sense.
I was astounded with the amount of research that she had to do. Not only did she need to understand the science, she had to explain it in a way that wasn’t watered down but would make sense to the reader. She then had to explain the ethics and policies of Henrietta’s time, including the world of blacks and whites in the 1950s. She then had to gain the trust of the family and work with them in a way that showed respect to Henrietta and her family but also let her learn the truth. At times the book barely balances on the barest of an edge, and I could feel the anxiety and exhaustion that Skloot must have herself felt. But then there are times when she is completely supported as she travels with Henrietta and HeLa. This isn’t her story, but her voice is there. Over and over I was impressed with her research, the way she structured the story, and her own voice and tone.
I wish this had been an easy read in the sense of right and wrong, but like everything else, things just don’t work that way. I wanted to be firmly on one side, but I couldn’t. While feeling the pain and confusion of the Henrietta’s family, I celebrated in the advancements that came about because of HeLa. I was frustrated and grateful. Most of all, I was on Skloot’s side as she pulled all the threads together and tried to weave the full picture.
I’m very appreciative of the work she did to write this book. It’s both a study and explanation of medical ethics and practices over the year, but also a beautiful biography of Henrietta herself and the children she left behind.
This book is a success no matter how you approach it – medical, research and science to ethics, social standing, race relations, and education. Ten people can read this book and have twenty different responses.
It’s a fantastic book club book and I’m glad I finally read it.