The Immortal Life of Henrietta Lacks in Ultimate Popsugar Reading Challenge

Aug 07, 2013 Graceann rated it it was amazing · review of another edition

Shelves: biography, memoir, history

Well. Where to begin with this confusing, enthralling, infuriating story. In 1951, in Jim Crow Baltimore, a young mother named Henrietta Lacks visited the "negro" section of Johns Hopkins Hospital with a complaint of pain and abnormal bleeding, after more than a year of feeling that something "wasn't right," and a self-exam that revealed something truly alarming. As he did with numerous other patients, the doctor who examined her took a sample of her cells and sent them to research, not expectin Well. Where to begin with this confusing, enthralling, infuriating story. In 1951, in Jim Crow Baltimore, a young mother named Henrietta Lacks visited the "negro" section of Johns Hopkins Hospital with a complaint of pain and abnormal bleeding, after more than a year of feeling that something "wasn't right," and a self-exam that revealed something truly alarming. As he did with numerous other patients, the doctor who examined her took a sample of her cells and sent them to research, not expecting much (which is to say, they would quickly die and be forgotten). But they lived, and lived and lived and lived, and thrived. This was the beginning of the immortal "HeLa" cells that have contributed to medicine at almost every level, worldwide, particularly in the study of cancer and the eradication of Polio in the United States. These cells could have come from Jane Doe on Smith Street, or any one of thousands of patients who passed through Johns Hopkins every year. But they didn't. They came from a 31-year-old woman of limited means and education, who left behind a family that, for decades, had no idea what contribution she had made to the World. Many of us are alive today thanks to research that was first performed using HeLa cells. The gratitude I have for Mrs. Lacks and her family is genuine. That she didn't know the work was going on makes no difference. If she hadn't visited that doctor, on that day, modern medical care might look quite different.

At play here are issues of race, consent, ethics and legacy, and each rises to the fore at some point, with several issues sometimes tussling for the top spot at once. While her family is proud of her contribution, they are unhappy about the lack of consent, and the lack of compensation to her family, who remain on financially tenuous ground. When one of her relatives had bypass surgery, the last thing his doctor said to him was how proud he should be of Henrietta Lacks' contribution. When he woke up, he was $125,000 in debt for the surgery. There's something clearly wrong with that scenario. Then as now, however, consent is a very murky issue, with most of us having contributed cells to some study without even realizing it. In the one instance that could be documented where a cell line was patented and the doctor kept the patient in the dark, a lawsuit (which went all the way to the U.S. Supreme Court) was of little use.

Added to this story is the one of Henrietta's daughter Elsie, who was committed to a psychiatric hospital (more like a warehouse, actually) as a small child with the diagnosis of "idiocy," among other disorders. Psychiatric hospitals at the time were places in which Mengele would have felt right at home. She was likely subjected to a procedure called pneumoencephalography, without any thought of consent, and I dare you to look up that procedure without feeling sickened. Even more sickening is that it continued being used right up into the 1970s.

Rebecca Skloot worked hand-in-hand with Henrietta's family for many years, after earning their trust and proving her good intentions. The help that Henrietta's daughter Deborah provided was critical in the depth to which Skloot was able to delve and the assistance she received from other family members, and medical institutions. Deborah's confusion, her anger and her eventual contentment as her mother received more and more recognition, brought me near to tears many times. Skloot sometimes gets a bit "into the weeds" with some of the circuitous routes that the HeLa cells traveled. There's a section on contamination in particular that, no matter how many times I read it and how simple the language (and she really did strive to make it understandable for lay people), I just did not get it. That is a lack of understanding on my part, not a lack of skill on Skloot's. Nevertheless, the sections that were far more compelling to me personally were the portions detailing Skloot's detective work and connection with the Lacks family. These are people with heart, soul and history.

A books podcast I listen to referred to The Immortal Life of Henrietta Lacks as a "swiss army knife" recommendation, in that it can be recommended for a variety of readers with a fair degree of assurance that the reader will find *something* in it that is relatable and worthy. Now that I've read it for myself, I thoroughly agree, because on so many levels, I'm now more aware and more grateful. I can thank Henrietta Lacks for that, and then Rebecca Skloot, for bringing her story to a brighter light. ...more

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May 01, 2010 jess rated it really liked it

Shelves: audiobook-d, 2010

I'm not sure why it has taken me weeks to write these notes down, but the longer I let it go, the more I will forget. So, here I am, incomplete and faulty memory and unresolved emotions. Forgive me. While I was reading this, I got really sad for a while. I mean, there’s like the fundamental injustice and frustration of the story, and I tend to internalize those kinds of feelings, but also just the fog of cancer that surrounded me everywhere. Someone close to me was diagnosed with cancer while I I'm not sure why it has taken me weeks to write these notes down, but the longer I let it go, the more I will forget. So, here I am, incomplete and faulty memory and unresolved emotions. Forgive me. While I was reading this, I got really sad for a while. I mean, there’s like the fundamental injustice and frustration of the story, and I tend to internalize those kinds of feelings, but also just the fog of cancer that surrounded me everywhere. Someone close to me was diagnosed with cancer while I was reading this, and another friend was struggling with the last stages of the disease, and I was listening to this really intense audiobook with fairly graphic descriptions of Henrietta’s death, and man, it was just a lot of cancer at once. I sort of got lost there for a second. It was hard for me to come back around and write about the book.

I listened to this on audiobook, which contributed greatly to my experience of it. The story was occasionally science-heavy or too emotional, it would have been tough to slog through that on paper. Also, I got to share parts of the book with people who rode in the car with me - namely, my wife & son - which brought up all sorts of discussions about scientific research, families, race, class, gender, cancer, poverty, historic health care/treatment of people of color and women, and the value of scientific research in our society. These are uncomfortable, confusing and important conversations to have.

All of that stuff, well, that's what this book is about. Henrietta was poor, Southern, black, and dying of an aggressive terminal cervical cancer long before modern medicine knew how to treat such a cancer (do they now? it's arguable). She was a generous woman. She loved to dance. She was close to her family and she loved her babies. She was an excellent cook. She died a painful, horrible death that nearly destroyed her spirit when she was only 31. She left behind a husband and five children who grew up motherless, abused, and neglected without Henrietta's love and watchful eye to protect them.

During her treatment at Johns Hopkins for cervical cancer, Henrietta's biopsied cells had been given to a dude who was trying to culture human cells without killing them. For some unimaginable, unknowable reason, Henrietta's cancer cells didn’t die. They are immortal. They don't "time out" like other human cells. They grow almost effortlessly, opening doors for research into so many diseases and so much scientific research. Because of Henrietta's cells, science developed chemotherapy and the polio vaccine. Her cells have been to outer space. In vitro fertilization, cloning and gene mapping almost certainly would not exist without Henrietta's cells.

There is no record that Henrietta gave consent for her cells to be cultured or that she even knew they were taken. She was under anesthesia when her cells were removed. Her husband actually refused to let the hospital take samples after her death. Her family didn't find out about her immortal cells until her youngest was over 20 years old.

This book is mostly the journey of the author, Rebecca Skloot, in her efforts to tell Henrietta's story and her friendship with Henrietta's youngest daughter, Deborah, who struggles with issues surrounding her mother's cells, poverty, crippling health issues and mental illness, and her longing for to know her mother.

The story is convoluted enough to make it difficult to easily discuss, but the fundamental injustice done to the Lacks family is clear. Each family member responds differently - anger, violence, depression, mania, anxiety, alcoholism, distrustfulness, and every other response. It's clear from the very beginning that there is no happy ending for Henrietta, who's long gone and hopefully resting in peace, or for her children, whose lives have been guided by these cells for the better part of the last 40 years (largely to their own detriment).

Henrietta's cells are responsible for many pivotal moments in scientific history and many great things have come from this. However, her own family can't afford health insurance. Her children don't benefit from any of the remarkable discoveries due to her cells because they can barely afford hearing aids or blood pressure medication. Billions of her cells were distributed for free to every medical research facility in the world, so there is no conceivable way to compensate her family for the cells. It's a huge gap in law and logic - her family cannot be compensated, there is no way to make reparations to them for the violation of their mother's body, and the Lacks children are left to deal with the emotional questions of grappling with the death and immortality of a mother they were too young to remember.

This was an excellent read, and I would recommend it to anyone with any remote interest in the subject matter. The story is emotional. Yeah, it’s a little like “the white lady came and saved the day, discovered all the answers and wrote the book” …. So, keep that context in mind. But Skloot’s work to uncover the story of Henrietta Lacks, her family & her cells is a tremendous contribution to the world. It’s just sad that it took a white journalist’s interest in the matter to bring this story to the public. ...more

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Aug 02, 2010 Beth Given added it · review of another edition

Shelves: blm

2020 UPDATE: My racism is showing in this review. I remember going into this book thinking it was about science and was disappointed when race was an issue. But race and racism are at the VERY CORE of this book. I haven’t reread it so I won’t reassign a star rating, but please know that I’m ashamed of my tone policing on this one and I’m hoping that I’ve changed since 2012.

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From reading other reviews, I knew going into this book to expect both some biographical and scientific information on Hen 2020 UPDATE: My racism is showing in this review. I remember going into this book thinking it was about science and was disappointed when race was an issue. But race and racism are at the VERY CORE of this book. I haven’t reread it so I won’t reassign a star rating, but please know that I’m ashamed of my tone policing on this one and I’m hoping that I’ve changed since 2012.

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From reading other reviews, I knew going into this book to expect both some biographical and scientific information on Henrietta Lacks and the cell line she "sponsored" (unbeknownst to her or her family). I knew that there would be questions raised regarding ethics, about the moral obligations we have in this new age of genetic technology. I appreciated all that I learned and especially appreciated all the interesting ideas to consider. I admired the author's ability to weave together two drastically opposing stories -- the poor and uneducated black family of Henrietta and the scientists who used her cells for everything from a polio vaccine to seeing how human tissue would fare in space.

What I didn't know going into this book was that it would read, in parts, almost like the author's memoir: the entire second half of the book was the story of Rebecca "interviewing" Henrietta's daughter Deborah. At first, the historian in me was fascinated by Rebecca's research, but then it went on for chapter after chapter -- it was just too much. There were things included that I didn't really care to know about (Deborah's abuse as a child and the younger brother's life of crime being a couple of examples) but mostly I was bored with the constant rehashing of whether or not Deborah would tell her story to Rebecca, whether Deborah was going to make herself sick with worry about her mother's cancer cells, etc. etc. And for all of the talk in the second half of the book of "wanting the world to know what Henrietta's cells have accomplished," I felt like this book really *didn't* talk about that except in the broadest of terms, and that left me just a little disappointed.

But I know I'm holding this book to a high standard (many of my friends gave it five-star ratings, so that's why!), and on the whole, I'm glad that I'd read this book. I do feel like it taught me a lot and opened my eyes to some issues I hadn't considered before. Worth reading just for that. ...more

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Feb 09, 2010 Joanna rated it it was amazing · review of another edition

Shelves: audiobooks, nonfiction, microhistory, 2011-read, rws-2011-spring

The reader for the unabridged audiobook did an excellent job. She performed the different characters with sufficiently differentiated voices without overdoing the accents/dialects. I read this book immediately after reading In Cold Blood: A True Account of a Multiple Murder and Its Consequences and the contrast is interesting. Capote completely leaves himself out of the story (even though he necessarily developed relationships with the folks he interviewed) and never mentions his own feelings. S ...more

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Sep 10, 2010 Larissa rated it liked it

Been on my to read list for awhile and read my sister's recent review and decided it would be my next read (break between reading next in Eragon series as I like to read differing books each time so I can enjoy the variety)....
I liked the book as I did learn a lot about science and the history of cells and so much more! The first half of the book I enojyed and then it slowed down a bit and got a bit muddled, so I went and read another book and then came back to finish it. A very neat story all i ...more

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Dec 07, 2010 Joan rated it really liked it

Several fascinating stories in one book - Henrietta, her children (especially Deborah), HeLa (Henrietta's cells), the author's quest to write the book. I found it hard to put this one down and can see why it's on almost every list of must-reads and best books of 2010. ...more

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