The Immortal Life of Henrietta Lacks
by Rebecca Skloot
Hardcover, 370 pages
Published February 2nd 2010 by Crown Publishing group
Henrietta Lacks, as HeLa, is known to present-day scientists for her cells from cervical cancer. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells were taken without her knowledge and still live decades after her death. Cells descended from her may weigh more than 50M metric tons.
HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks was buried in an unmarked grave.
The journey starts in the “colored” ward of Johns Hopkins Hospital in the 1950s, her small, dying hometown of Clover, Virginia — wooden slave quarters, faith healings, and voodoo. Today are stark white laboratories with freezers full of HeLa cells, East Baltimore children and grandchildren live in obscurity, see no profits, and feel violated. The dark history of experimentation on African Americans helped lead to the birth of bioethics, and legal battles over whether we control the stuff we are made of.
“She’s the most important person in the world and her family living in poverty. If our mother is so important to science, why can’t we get health insurance?”
That quote pretty much sums up the whole book. For those of you who doesn’t know what HeLa is, it’s basically a cell culture that has been used for decades by scientist to test various drugs, microorganism, radiation, and other things. It helped in the discovery of polio and measles vaccine, understanding how our body and genetics works, and other important things. The problem is these cells were taken without Henrietta’s or her family consent, and when it turned into a business, the family remained poor, barely able to keep things together.
I first heard about HeLa while we were talking about cancer in biomedical class. As always, when women are mentioned in class, I immediately looked them up. It’s just science is a men-dominated field that it gives me a sense of pride knowing that we women helped in science too. Unfortunately, what I found really unsettled me and while digging deeper, it led me to Tuskegee study, which angered me even more. Their story really motivates me to go into bioethics, but I haven’t be able to read their full story. When I found this book in my internship’s library, I was excited and immediately borrowed it. I was wary at first because nonfiction + science = snoozefest.
But oh boy, I was so wrong about this book. It’s not even close to a snoozefest. This book managed to made me feel a lot of emotions, mostly in the anger and sadness spectrum. As you can see, I ranted on my goodreads progress, which is something I almost never done before.
I read this book to know more about HeLa and bioethics, but I found so much more in this book than what I was looking for. But those things will be on my rant part, below the review.
I loved the writing style. It goes back and forth between Henrietta’s life/family and the scientific achievements of HeLa on each chapter, showing us the glory HeLa achieved yet the totally different condition of Henrietta’s family. It also explained all scientific, legal, and cases clearly for public to understand. So no worries, you’ll absolutely be able to follow this book.
The story itself is very raw and moving. Especially on how Henrietta’s children lived after her death, on how her family was falling apart without her. Trigger warning for physical and sexual abuse. Deborah, Henrietta’s youngest daughter, was too small when her mother died. Reading how she yearned for her mother really hit me. For years, she wondered smallest things about her mother, like her favorite color and how she died. She constantly wondering about her mother and her sister. While the media is wondering about who is this amazing HeLa donor, Deborah only wanted to know her mother.
But the most important thing, it achieves what Deborah wanted: it introduced us to Henrietta Lacks, mother of Deborah, Sonny, Lawrence, and Zakariyya. We got a glimpse on who she was as a girl, a woman, a mother. As a human being, instead of being this wonder cells. And she seems like such a nice and warm person, full of love, always taking care of other person.
It’s not all sunshine and rainbows though, it’s a pretty hard and gritty book to read, so let’s go to the ranting part of the post.
The first thing I learned is how outrageous the treatment towards black people were in the 50s. Their treatment were inhumane. Slavery might’ve been abolished long time ago, but the treatment…. No wonder there are a lot of animosity between black and white people back then. There are like special wards for the coloured with special fountain, with special doctors and if that wasn’t enough, the treatment they received were also different. Not to mention the “research” done using black people. This will go into the next paragraph.
Another thing I realized is how ruthless and cold science was. It’s like everything is legal “in the name of science”. I don’t know if it still is, but at that time, “scientist” were the creepiest and cold af people I’ve ever read about. This book explained in detail about Tuskegee study and Nuremberg, and how scientist still sneak around the consent thing in the era, claiming “they did not know”. That’s what happened with Henrietta, the doctor took her cancer cells without her consent and used it for experiment. Another person named John Moore also experienced the same thing, he survived his illness and sued the doctor who used his cells…. only to be defeated. He appealed several times, but in the end, he was still lost and Golde, the doctor gained profit. And as I quoted from the book, “Scientist were triumphant, even smug“. This case will be used several times in the future, as a basis to ruled against people who sued ownership over their tissues. There are many creepy and inhumane experiment done in this era to “advanced science” that you can read both from the book and the internet, but the point is, it’s like a dark era for science. It’s like those people didn’t regard the patients as human, only as things to be experimented on.
Yes, I understand how tissue ownership is a complex issue and how asking consent from everyone could hinder the progress for science, but isn’t it ironic how other people get money from the tissue, except for the donor themselves? Isn’t it ironic how scientist get to patented their tissues, because even though they already done some work on it, without the donor there would be no cell lineage to work with and therefore, no $$$?
And the worst part is how everyone just try to exploited Henrietta’s family. After they got nothing from the cells, their life story is being exploited by the media, so that everybody knows about HeLa, except themselves. The family found out that the cells exist almost 20 years since it first taken from Henrietta’s. All those time, no one had any initiative to track down and tell the family of Henrietta. Not the white doctors, not the businessman, and not even the black doctors/scientist/people in science. Journalist come and go hounding for the story, first to Gey, the scientist that first developed HeLa, before finally going after the family. Gey and co, the few people who actually know who is Henrietta, were against putting her name in public to protect the family. But did the journalist stop? Of course not. In the end, her name was released to the public and her family was hunted for a story about Henrietta. Imagine being told that some part of your dead mother, whom you never know because you were too small, is alive, 20 years after her death, through a friend, while the rest of the world already know about it. The family doesn’t even know who took that picture of Henrietta on the book cover, they don’t even have the copy of it. The journalist got it first.
The Immortal Life of Henrietta Lacks is an amazing read for me. The story is powerful and emotional, highlighting Henrietta’s and her family struggles against the stark contrast of HeLa achievements. We got to know Henrietta as a person, instead of a mere cells. The writing is also very clear and easy to understand, so it’s suitable for everyone.