Saturday, May 28, 2011
The Immortal Life of Henrietta Lacks by Rebecca Skloot
Henrietta was a poor black woman who grew up working on a tobacco farm with her extended family. Shortly after the birth of her fifth child, she found out she had cervical cancer. This was in 1951, she was treated, but the cancer spread and she died. Samples of both her healthy cells and cancer cells were taken by scientists at John Hopkins when she was treated, and the cancer cells were the first human cells to survive and keep reproducing outside the body. This was revolutionary, and the cell line called HeLa changed the world in many different ways. Everytime Rebecca Skloot lists off scientific advances that have used HeLa, it is impressive.
Even though they were responsible for taking the cells without asking or informing Henrietta and her family, I really enjoyed reading about George Gey and his wife Margaret. I liked that Gey built his labs out of scrap metal and invented amazing things for scientific research without patenting them. He sent the HeLa cells to anyone who was using them for scientific research. I feel like his motives were good, he wasn't looking for fame, he was just a really smart guy that was obsessed with science. I enjoyed the simplified explanations of how cells were used, and how specifically HeLa's cells allowed scientists to study so many different things.
Henrietta's family really suffered after she died. Her children were mistreated and abused by the cousin who came into take care of them. I actually skipped a couple of pages that went into detail about this. Three of her kids were still really young when she died, and an other one had been institutionalized for epilepsy and other illnesses. Luckily, the oldest brother married a woman, Bobette, that figured out what was going on and rescued the kids. Sadly, the damage had already been done. Add to that poverty, un-diagnosed hearing problems and struggles with the law, and her children had really hard lives. When they were asked for blood samples years later, bits and pieces of the history of their mother's cells were explained to them. But not explained well. They each struggled with it in different ways. I think their reactions are well-justified, and as they slowly confide in the author and explain their experiences, you can really understand why they each reacted they way they did. Some of the descendants wanted financial retribution, which is also understandable since they are all struggling with different illnesses, and many don't have health insurance. Ultimately, they just want people to know who their mother was, and better understand themselves.
Much of the story comes from Deborah, who was only 2 or 3 when her mom died. She has a lot of spunk, and definetly grows on you as she searches for information about her mom. I think the biggest tragedy in the book is not that the cells were taken, but that those 5 kids lost their mom when they were so young. I'm sure they would have still had struggles, but if they had had Henrietta to love them and teach them, I think things would have worked out better.
Rebecca Skloot explains different advances in patient privacy and disclosure. She outlines different agencies' attempts to prevent what happened to the Lacks family from happening again. But doctors can still store and use your cells without you knowing. As I read the different issues and concerns, I wondered how I would feel if I found out 20 years later that my cells had been used. Honestly, if anyone asked me, I would happily donate blood or tissues for scientific research. I know when different kids of mine were born, we were asked to participate in different studies. I find that kind of stuff fascinating. One of them is in a data base for hearing loss, when my last baby was born we were finally able to donate cord blood. I'm sure if it isn't used for a transfusion, they'll use it for research, and I'm really OK with all that. One study even says that my appendix that was removed a while back could still be around in a lab somewhere. But I'm OK with that.
I recommend this book. It will be different than anything else you've read. It is very interesting, educational and thought-provoking. It seems to be very popular, so I'd love to hear what you thought of it.