This is a nonfiction book but if you don’t know anything about this (like me when I started out), then there are spoilers ahead.
I had heard about this non-fiction book and that it was simply amazing but I had never heard of Henrietta Lacks before. When I hadn’t read this, I went, “What is this book?” And when I finished it, I went, “Why didn’t I know about Henrietta Lacks when the whole world knows about her now?”
I can give you my review in a single sentence: I was blown away!
The Immortal Life of Henrietta Lacks is the story of Henrietta Lacks, a black woman, who was diagnosed with cervical cancer in 1951 and when she went for treatment, her cancer cells were taken by the doctors for research and cell culture without her consent and handed over to George Gey, a cell culturist. Thus was born the HeLa line of cells that played an important part in scientific advancement in medical research.
As the book tells us, they “helped develop drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson’s disease. They have been used to study: lactose digestion, sexually transmitted diseases, appendicitis, human longevity, mosquito mating, and the negative cellular effects of working in sewers.” And as time passed, so many more, if I’m not mistaken.
But the thing is, Henrietta didn’t know doctors were taking her cells. Her family didn’t know they were taking her cells. Informed consent was apparently not a thing back then and even now, scientists argue that taking consent means hindering medical advancement. Which I think is bullshit to a certain extent.
Henrietta’s cells were used so much, many people even minting money off of those cells. But her family doesn’t even have health insurance, which is what they were pissed off about. They didn’t want money. They were, in fact, happy that their mother/grandmother’s cells were being used to help other people. But seeing their mother’s cells being treated as if she didn’t exist in the first place was what angered them. And despite the way they treated Henrietta and them, the Lackses were so kind!
Oh, and the media! I don’t even want to begin with them. But when they wrote a story about Henrietta, who they knew as Helen L., this is what they wrote:
Rumors spread about the identity of this mysterious Helen L. Some said she’d been Gey’s secretary, or maybe his mistress. Others said she was a prostitute off the streets near Hopkins or a figment of Gey’s imagination, a fictitious character he’d created to hide the true identity of the woman behind the cells.
George Gey might have wanted to do good for the world. But by handing the cells out left-right, and center, he enabled a lot of people to commercialize it all. How can you allow a part of yourself to be sold? How can you see other people taking a part of you and minting money off of it? It made me so angry to read: everything that happened and the reasoning that so many people had to give for having done this to Henrietta and her family.
Here’s a rough analogy, if that will help:
On YouTube or on the Internet in general, you cannot use someone else’s content – be it music, videos, or anything else – and monetize it. It’s fine if you don’t earn money, though. If this is applicable to stuff that I create, how can you say that it is not applicable to a part of me? A part of my body? How can you say that I have no right over my own tissues? That I should shut up and let the world run amok and do what it will?
My problem is not that the cells are being used for medical research and scientific advancement. God knows we need a lot of that in order to survive. My problem is taking my cells WITHOUT CONSENT and then commercializing and making money off of it. Billions of dollars at that! You call informed consent a threat to the sharing of tissue for research purposes? I might not know a lot about it all, but I know a little about morals and ethics. And this is completely NOT alright, in my opinion!
Look at these quotes that Rebecca Skloot has compiled from various judgments that have been passed over the years in this idiotic debate:
When tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes. When you leave tissues in a doctor’s office or a lab, you abandon them as waste, and anyone can take your garbage and sell it. They are (had been) transformed into an invention and were now the product of ‘human ingenuity’ and ‘inventive effort’. – I CALL BS.
Giving patients property rights in their tissues might hinder research by restricting access to the necessary raw materials, creating a field where with every cell sample, a researcher purchases a ticket in a litigation lottery. Imagine tell someone that claiming rights over their own bodies is wrong. Wow.
And it’s not just this! It’s about “scholars” and “scientists” and “professors” literally threatening patients saying something on the lines of ‘if you don’t give us cells, we won’t treat you.’ Here’s what the Dean of the Stanford University School of Medicine said:
If you did (object to use of tissues as long as researchers disclosed their financial interests), I guess you could sit there with your ruptured appendix and negotiate.
Do you think I could take a paper written by any of these “esteemed” and “learned” people, pass it off as my own, and get away with it? That’s not right, isn’t it? Then how is it okay for people to take a part of my body and say that they have a right to do so? How is it okay for them to take it without my consent? How was it okay for them to not give Henrietta the recognition she deserved for so long? How was it okay for Henrietta’s family to live in poor health, without health insurance, when she was out there curing and helping so many people? Isn’t it cruel to them?
I just… I can’t even! As I read the book, my blood boiled. I know there are way too many dimensions to this debate and more that I need to learn about. But I know this: It’s not fair! It was not fair then. It is not fair now. And anyone who’s ripping off anyone through their BODIES needs to be punished!
Rebecca Skloot’s writing is matter of fact, like she is just putting out the facts and as you progress in the book, you will realize where you stand pretty clearly. It hits you where it hurts most, it makes you laugh in places, and tells you everything there is to tell about the HeLa cells. Well, maybe not everything, but the most important points of it. She tells us about what started her on this journey, the entire journey from starting to get in touch with the Lackses to the publication of this book, and then where she ended up, and where the Lacks family ended up. It’s plain heartbreaking to read but it also gives you a clarity that you probably wouldn’t have expected to get.
I’d highly recommend this book, even if you don’t follow science as much. I don’t follow science and I wrote a long blog post about it. So imagine what can be possible by reading this book!
Rating: 5/5 stars
Picture Courtesy: Goodreads
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Here’s the link: The Immortal Life of Henrietta Lacks by Rebecca Skloot