Monday, April 6, 2015

Book Review: The Immortal Life of Henrietta Lacks by Rebecca Skloot

The concept of The Immortal Life of Henrietta Lacks has intrigued me ever since I first heard of it - it's an interesting non-fiction mix of scientific data, biography, and ethical questioning relating to the taking of a person's biological property.

Henrietta Lacks was a poor tobacco farmer from Virginia who moved to Baltimore in the 1940s boom of Bethlehem Steel with her husband. She had 5 children and lived life as any black woman of the time did. One day, she could feel a lump in her abdomen, so she went to John's Hopkins Hospital where they discovered that the lump was cervical cancer. They treated her with radiation periodically over the course of several months, the lump shrank, and they sent her home to live life and come back for monthly checks. About 3 months after they had told her she was completely fine each time, she came back with incredible pain, and they discovered that other tumors had started forming all over her body. It advanced incredibly quickly, filling her body with tumors and giving her so much pain that no medication could help. She passed away in 1951. The reason she is the subject of this book has almost nothing to do with her own personal life and history - it's about her cells. During her first radiation treatment, they had to anesthetize her and insert radium into her uterus near the tumor - while she was under, they decided to take a slice of her tumor and gave it to the hospital's researcher on human culturing, George Guy, to see if he could grow the cells in his laboratory. This had never been achieved before, but doctors knew it would be the change of the medical industry once it finally worked and the cells would grow, so they took cells from most people they felt they could get away with at the time in hopes that they would happen upon cells that would work. Henrietta's cells were the first ones in history that grew in culture. This lead to an explosion of understanding about the human body, and was directly the reason we have vaccines for polio, HPV, hepatitis, and treatments for HIV, TB and much more. Her cells let us begin mapping the human genome and are the reason we know there are 23 base pairs in DNA. Her cells helped us learn about cancer, genetic disease, and so much more. It's honestly incredible how much her cells (known as HeLa in the science community) gave the medical field and all of us as a byproduct.

So, what's the big deal? Well, it turns out the doctors were very shady about what they did. Johns Hopkins never told Henrietta or her family about her cells being cultured, and George Guy was so excited about the fact that the cells would grow that he started giving them out to anyone who asked for them in the research community. He never charged anyone who he gave the cells to, so Johns Hopkins never directly made any money from HeLa cells, but some of the scientists he gave them to did. Other scientists decided to start medical supply companies and sell HeLa cells by the vial to anyone who would pay. There is no way to know how much money was made though the sale of these cells, and Henrietta's family did not find out about all this until 20 years later. Her family are very uneducated (no judgement there, it's just a fact), so all they saw from this new info is 1) their mother/wife/etc is still alive in some way and kept in a laboratory and 2) people were making millions of dollars selling pieces of her. Henrietta' children started trying to stir things up and demand compensation for their mother's cells from Johns Hopkins, saying that they know the hospital made money off the cells even though they insist they did not. The fight lasted the rest of their lives. Eventually, Henrietta's daughter, Deborah, learned to sort of let it go and just enjoy that her mother was a medical miracle that has saved countless lives. Deborah ends up being able to visit a lab and see the cells for herself in her lifetime, which was nice to read about.

This is a really long explanation of the book, but it's hard to summarize smaller than that. So what did I think of the book? I found the science and the story of how the cells traveled through history and what they helped achieve. It's incredible to think that a woman who only had a 4th grade education could have technically given more to the scientific community than any medical doctor on record. My fascination with this aspect of the story was definitely shadowed by the story of Henrietta's family. I feel judgmental for it, but I just wanted to reach in the book and shake her children and family members. All they could see were dollar signs, and they were do ignorant that at one point Deborah tells the author that she knows there is a whole village in England filled with human clones of her mother. Her evidence of this was an article about when the English cloned Dolly the sheep and how they used HeLa cells to figure out how to do the cloning. The article joked that with as many clones as they made of HeLa cells in the lab, they could all fill a village in England. Deborah was convinced that this meant there were hundreds of her mothers running around together in a village in England. Seriously. I don't mean it meanly, and I'm sure it makes me sound awful, but they should have children read this book if they want to drop out of school early just to scare them into finishing their education. Henrietta's family was also swindled by a con-artist lawyer named Cofield who tried to take their case to court and sue Johns Hopkins. They only discovered he was an ex-con conman when he called Johns' Hopkins and introduced himself with the title "Doctor Sir Lord", so the researcher he spoke with had his record looked up and let Henrietta's family know on the side. Seriously. Ugh. This book is a perfect testament to how dangerous true ignorance can be.

The final section of the book talks about the medical ethics behind the family's argument. The fact is that there are no laws that dictate whether what the doctors did was legal or not. At the time, it was actually completely legal. There were very few laws protecting blacks at the time, especially in the medical field. I was shocked to learn that there weren't even any laws protecting human medical test subjects until the 1960s - really! Animals had more protection than humans do as far as the law is concerned. Pretty interesting.

Anyway, the book definitely brings up a lot of questions for the reader. It's kind of frightening to think that you have no say in what is done to your parts and pieces after medical procedures are done, but at the same time imagine if your cells could be as beneficial to the world as this woman's cells were and are - wouldn't that justify taking a few shavings off your tumor before you died even though you had no knowledge of it at the time? The real issue is how do you distinguish what is appropriate for what part of you? How does this change when it's your pancreas or your severed arm? Or what if the doctors involved are more interested in the medical knowledge they could gain from your body than in saving your life? It's the stuff of a Victorian horror story, but we can't just ignore it and hope for the best because it has lead to the detriment of who knows how many people while we wait to decide. The book was well written, and it definitely affected me in a way I won't forget. I recommend it to anyone who has even a passing interest in science and biology. I give this book 4 out of 5 stars.

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