I’d been meaning to read this book since last Thanksgiving when my sister-in-law gave it to me and told me I had to read it immediately (that didn’t happen!), but it had disappeared from my bookshelves at home only to turn up in my husband’s lab on a shelf above his bench. He hadn’t read it either, but it has to do with the basics of his cancer research, and he has used HeLa cells throughout his scientific career. Science isn’t my passion the way it is for my husband, and I haven’t taken a science course since ninth grade biology, but Skloot’s book is so well-twritten that someone like me with a limited technical understanding can still understand every point she makes.
Henrietta Lacks suffered from a virulent form of cervical cancer that killed her at age 31, leaving a family of young children and a bereaved husband. Samples of tissue from the multiple tumors that caused her death were found to have a particularly strong and vigorous ability to grow cells in culture without dying–this happened at a time in the history of science when researchers were struggling to establish cell lines that could be studied and also manipulated in the quest to find cures for not just cancer but many other diseases as well. The cells grown from Henrietta Lacks became indispensable to science since they grew rapidly, and this led to the beginnings of the biotech industry.
As significant as HeLa cells are to science today, there arose a crucial ethical question that still has resonance today: who owns these bits of discarded tissue and cells, and who profits from discoveries made through the use of these cells? Henrietta Lacks and her family were struggling to stay above the poverty level, and her death caused her family to spiral into the chaos of inner city Baltimore life. Skloot questions the judicial decisions that upheld the right of scientific institutions to conduct research using these cell lines generated from Henrietta without compensation to the people like Lacks from whom the bits of tissue came from. And she reveals the utter disregard many of these early researchers had for Henrietta and her descendants, and the way Lacks was treated as not a person but an opportunity for scientific advancement, generating papers, new drugs, and new treatments, all benefitting everybody but the Lacks family who had suffered such a tragic loss.
However, what saves the situation is the magnanimity of Henrietta’s children and grandchildren, especially her daughter Deborah, and their realization that even though they would never receive any payment for their mother’s cells, what is much more important is acknowledging the advances that were made through the use and study of what she left to science. Here is Deborah Lacks speaking about the poor treatment she and members of her family received from many researchers:” Like I’m always telling my brothers, if you’re gonna go into history, you can’t do it with a hate attitude. You got to remember, times was different” (276).
The incidents of horrific experimentation on poor African-American people that Skloot uncovers are unsettling and tragic, and it is not surprising that many were deeply suspicious of the white doctors who were eager to further their research. That the Lacks family trusted Skloot, a young white woman writer who came from an entirely different background from them is proof of their trust in the power of words to right the wrongs by uncovering the truth. Henrietta Lacks achieved immortality twice–once through the immense power of the cells cultured from her body, and a second time in the story that Skloot has so movingly told. This really is an essential book for anyone concerned with the ethics of scientific research, or even the morality of how we treat people whose sufferings have led to great advances for us all.
4 comments on “Nadia’s Book #3”
I think it’s awesome that the reading challenge brought you back to a book that you had been given. Although science isn’t your focus, it sounds like you got a lot out of the read. I am a scientist and I haven’t read this yet, though I do know quite about the history of HeLa cells and in fact, my husband doesn’t use these cells for ethical reasons (we work in the same department). When I heard this book came out it made me happy that someone has translated her story into non-scientific jargon as it is a really important one for people to be aware of. I wish that more money from HeLa cells had gone directly to her family.
A very good book to read a review on- thank you!!
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I completely forgot to add that this book was my assigned genre, science, and as soon as I found out what I had drawn, I knew immediately that I wanted to read this book. And I absolutely agree that the Lacks family should have gotten at least some compensation for the world-wide use of HeLa cells, although this would probably have led to total chaos in the biotech industry. It is so unconscionable that it took years for Deborah Lacks even to be given an explanation of what happened to her mother’s cells and how important in the history of science that they had become. That’s why I was so moved by the magnanimity of the Lacks family–they got an incredibly bad deal, and yet they emerge as so much more gracious than many of the scientists who have profited from working with HeLa. I’m so glad that your husband has taken such a firm ethical stand against using HeLa cells in his research. I truly believe that personal practices and decisions based on ethical considerations and made quietly on one’s own are as important as public stands.
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Hi Nadia, Nice that the genre worked for you to read something you already had lying around! That’s cool. I hope you are enjoying the reading challenge so far 🙂
It’s interesting about the profiting part, since most scientists are not making a profit per se off of using the cells but maybe are making advances in their field (academics for example). In this case, it becomes quite complicated since the cells are available and around, so why not use them for positive advancement of science? That is the argument most academics have because they do so much for so little (most of them anyway). We give our time and selves away for the advancement of the field, so it is an attitude of generosity often, I think.
Many people have issues with using something called HEK cells since they are human embryonic kidney cells and are derived from fetal tissue obtained during abortions. Most scientists say, the abortion happened so why not use the cells instead of wasting them? Some people think that it is ethically problematic to think this way about abortions, etc.
Oh how we humans can complicate things 🙂
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Yes, I completely agree–this sets up such a complicated conundrum. There are the cells, available for all, and so it makes perfect sense to use them to advance knowledge so that some day maybe there might be a treatment for the kind of virulent cancer that killed Henrietta Lacks so quickly. Or for any other equally serious disease or even just trying to understand the mechanism of the cancer cell itself–this is what my husband studies: why and how cells die, or at least that’s my extremely limited understanding. But then there is the human aspect of Henrietta herself and what her family needs from her memory. Maybe this is more of a real metaphysical need than monetary–all of us need so much from our mothers, even if we don’t know it–but the knowledge that most of the biotech/pharmaceutical industry has grown up around the use of HeLa cells and other ethically challenging bits of human tissue sets up the dilemma we need to ponder: how much and what kind of compensation is commensurate with life or death? And in the post 9/11 era when values were put on lives lost in cold hard cash, these issues will not go away.
I think I was most troubled by the attitudes of many of the scientists Skloot writes about. Perhaps they were just carried away with their excitement about the possibilities that research into these cells would lead to, but the way they excluded Henrietta Lacks from considerations of humanity, thinking of her not as a person but as a residue of replicating cells, brings to center stage the problem in medicine and science of depersonalization. There was only one postdoc who was so moved by the enormity of what the HeLa cells provided to the advancement of scientific understanding that he took the time to make real contact with Henrietta’s daughter, Deborah. He took a photograph of a HeLa cell, framed it, and gave it to Deborah. This was a gesture that was enormously appreciated by the Lacks family–so small, and yet of huge importance.
Anyway, much to think about in this book. But I’ll never get to reading the rest of my books if I don’t put aside all this pondering for now!
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