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The Immortal Life of Henrietta Lacks

Rebecca Skloot (Goodreads Author),

Cassandra Campbell (Narrator),

Bahni Turpin (Narrator)

4.09 · Rating details · 664,912 ratings · 37,661 reviews

Listening length: 12 hours and 30 minutes

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine. The first “immortal” human cells grown in culture, they are still alive today, though she Listening length: 12 hours and 30 minutes

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine. The first “immortal” human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings. 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 remains virtually unknown, buried in an unmarked grave.

Now Rebecca Skloot takes us on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells; from Henrietta’s small, dying hometown of Clover, Virginia — a land of wooden slave quarters, faith healings, and voodoo — to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells.

Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family — past and present — is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.

Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah, who was devastated to learn about her mother’s cells. She was consumed with questions: Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? And if her mother was so important to medicine, why couldn’t her children afford health insurance?

Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.

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Published February 2nd 2010 by Random House Audio

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Dec 02, 2010 Kemper rated it really liked it · review of another edition

Shelves: non-fiction, signed-by-author, medical, blinded-me-with-science

The doorbell rang the other day and when I answered it, there was a very slick guy in a nice suit standing there and a limousine parked at the curb. He started shaking my hand and wormed his way into the house.

“Mr. Kemper, I’m John Doe with Dee-Bag Industries Incorporated. I need you to sign some paperwork and take a ride with me. Don’t worry, I’ll have you home in a day or two,” he said. Then he pulled a document out of his briefcase, set it on the coffee table and pushed a pen in my hand.

“Wai ...more

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Nov 21, 2010 Petra in 4 days may have a bf fingers crossed rated it it was amazing · review of another edition

Shelves: popculture-anthropology, reviewed, 10-star-books

This is an all-gold five star read.

It's actually two stories, the story of the HeLa cells and the story of the Lacks family told by a journalist who writes the first story objectively and the second, in which she is involved, subjectively. The contrast between the poor Lacks family who cannot afford their medical bills and the research establishment who have made millions, maybe billions from these cells is ironic and tragic. It has been established by other law cases that if the family had gone This is an all-gold five star read.

It's actually two stories, the story of the HeLa cells and the story of the Lacks family told by a journalist who writes the first story objectively and the second, in which she is involved, subjectively. The contrast between the poor Lacks family who cannot afford their medical bills and the research establishment who have made millions, maybe billions from these cells is ironic and tragic. It has been established by other law cases that if the family had gone for restitution they would not have got it, but that's a moot point as they couldn't afford a lawyer in any case.

I have seen some bad reviews about this book. People who think that the story of the Lacks - poor rural African-Americans who never made it 'up' from slavery and whose lifestyle of decent working class folk that also involves incest, adultery, disease and crime, they just dismiss with 'heard it all before' and 'my family despite all obstacles succeeded so what is wrong with the Lacks?' I wonder if these people who not only totally can't see the wonderful writing that brings these people to life and who so lack in compassion themselves are the sort of people who oppose health care for the masses? As an extremely wealthy American tourist once put it to me, he had earned good health care by his hard work and success in life, it was one of the perks, why waste good money on, say, a a triple-bypass on someone who hasn't even succeeded enough to afford health insurance? That they were a drain on society, non-contributors and not the way America needed to go to move forward.

I don't think you can rate people by what they have achieved materially. Success depends a great deal on opportunity and many don't have that. Henrietta Lacks didn't have it and her children didn't have it, not even her grandchildren made much of a way for themselves, but the next generation, the great grandchildren - ah now they are going in for Masters degrees and maybe their children will be major contributors. The author intends to recompense the family by setting up a scholarship for at least one of them. All of us came originally from poverty and to put down those that are still mired in the quicksand of never having enough spare cash to finance an education is cruel, uncompassionate and hardly looking to the future.

HeLa cells have given us our future. They are the most researched and tested human cells in existence. All of us have benefited from the medical advances made using them and the book is recognition of what a great contribution Henrietta Lacks and her family with all their donations of tissue and blood, mostly stolen from them under false pretences, have made. Indeed one of the researchers who looks like having told a lot of lies (and then lied about that) in order to get the family to donate blood to further her research is still trying to get them to donate more. She's a hard-nosed scientist, with an excellent job and income and to her the Lacks are no more than providers of raw material.

Sometimes you can't make hard and fast rulings. No I don't think we should have to give informed consent for experiments to be done on tissue or blood donated during a procedure or childbirth - that would slow medical research unbearably. I don't think cells should be identifiable with the donor either, it should be quite anonymous (as it now is). However, there is only ever one 'first' in any sphere and that one does deserve recognition and now with the book, some 50 years after her life ended, Henrietta Lacks has it. Good on yer, Rebecca Skloot, you've done a good thing here. ...more

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Mar 17, 2016 Emily May rated it really liked it · review of another edition

Shelves: nonfiction, 2016

“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?”

I've moved this book on and off my TBR for years. The truth is that, with few exceptions, I'm generally turned off by the thought of non-fiction. I'm a fan of fictional stories, and I think I've always felt that non-fiction will be dry, boring and difficult to get through. Especially a book about science, cells and medicine when I'm more of a humanities/social sciences kinda girl.

But this book... it's just so interesting. It's written in a very easy, journalistic style and places the author into the story (some people didn't like this, but I thought it felt like you were going along for the journey). It's all the interesting bits of science, full of eye-opening and shocking discoveries, but it's also about history, sociology and race.

I started reading The Immortal Life of Henrietta Lacks while sat next to my boyfriend. Every so often I would unknowingly gasp or mutter "oh my god" and he was like "what? what?" and I hadn't even realized I'd done it out loud. It's just full of surprises - and every one is true! It uncovers things you almost certainly didn't know about. And it just shows that sometimes real life can be nastier, more shocking, and more wondrous than anything you could imagine.

Maybe you've heard of HeLa in passing, maybe you don't know anything about these cells that helped in cancer research, in finding a polio vaccine, in cloning, in gene mapping and discovering the effects of an atom bomb; either way, this tells an incredible and awful story of a poor, black woman in the American South who was diagnosed with cervical cancer. She is given back her humanity, becoming more than a cluster of cells and being shown for the tough, spirited woman she was. From her own family life to the frankly nauseating treatment of black patients in the 1950s, her story emerges.

Not only that, but this book is about the injustices committed by the pharmaceutical industry - both in this individual case (how is it that Henrietta's family are dirt poor when she has revolutionized medicine?) and on a larger scale (during the 1950s, many prisoners were injected with cancer as part of medical experiments!). It's hard to believe what so-called "professionals" have gotten away with throughout history - things that we generally associate with Nazi death camps.

I honestly could not put it down. Maybe because it's not just about science and cells, but is mainly about all of the humanity and social history behind scientific discoveries. Maybe because Skloot is so damn passionate about her subject and that passion is transferred to the reader. Whatever the reason, I highly recommend it.

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Nov 24, 2010 Will Byrnes rated it it was amazing · review of another edition

Shelves: biography, american-history, brain-candy, public-health, science

On October 4, 1951, Henrietta Lacks, a thirty-one-year old black woman, died after a gruesome battle with a rapidly metastasizing cancer. During her treatment, the doctors at Johns Hopkins took some cells from her failing body and used them for research. This was not an unusual thing to have done in 1951. But the cells that came from Ms. Lacks’ body were unusual. They had qualities that made them uniquely valuable as research tools. Labeled “HeLa”, Henrietta’s cells were reproduced by the billio ...more

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Jan 09, 2020 Always Pouting rated it really liked it · review of another edition

This was a really good book that leaves one with more questions than it answers, especially at this moment with the explosion in investment and growth in health/biotech. A lot of those questions are ones I wouldn't know how to answer myself either. I think it's really important though that we all start grappling with and instituting better processes around things like informed consent. Also really horrible to think about this in larger societal terms, in the context of institutional racism, and ...more

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Jan 07, 2011 Laura rated it liked it · review of another edition

Shelves: do-not-own, non-fiction, public-library, award-winner

Fascinating and Thought-Provoking.

Strengths:
*Fantastically interesting subject!
One woman's cancerous cells are multiplied and distributed around the globe enabling a new era of cellular research and fueling incredible advances in scientific methodology, technology, and medical treatments. This strain of cells, named HeLa (after Henrietta Lacks their originator), has been amazingly prolific and has become integrated into advancements of science around the world (space travel, genome research, ...more

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Jan 01, 2011 Chelsea rated it liked it · review of another edition

Shelves: topic-race-ethnicity, topic-science-health, genre-nonfiction, genre-biography

This could have been an incredible book. Henrietta Lacks' story is finally told--and Skloot makes very clear how important Lacks' cells have been to the last 60 years of science and, paradoxically, how much Henrietta and her family suffered because those cells were taken from Henrietta without her consent.

But in her effort to contrast the importance and profitability of Henrietta's cells with the marginalization and impoverishment of Henrietta's family, Skloot makes three really big mistakes. F ...more

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Nov 19, 2018 NickReads rated it it was amazing · review of another edition

This is such an important story. HeLa cells were a miracle to humanity and all thanks to Hernietta Lacks and the doctor.

It is a must-read.

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Mar 22, 2018 Angela M rated it it was amazing · review of another edition

4.5 stars.

A young black mother dies of cervical cancer in 1950 and unbeknownst to her becomes the impetus for many medical advances through the decades that follow because of the cancer cells that were taken without her permission. This book evokes so many thoughts and feelings, sometimes at odds with one another. It is thought provoking and informative in the details and heartbreaking in the rendering of the personal story of Henrietta Lacks. I was madder than hell that people/companies made l ...more

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Jul 18, 2010 Kathleen rated it liked it · review of another edition

My thoughts on this book are kind of all over the place. I feel for the Lacks family, I really do. It's hard to read about the poverty and lack of education and the cavalier approach towards informed consent in the early days of Johns Hopkins Research Hospital. The fact that the HeLa cell line is the foundation of so much valuable research is rightfully a source of pride for the family of Henrietta Lacks. I don't think they will ever see monetary compensation for their mother's cancer cell line, ...more

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Nov 06, 2020 Dr. Appu Sasidharan rated it it was amazing · review of another edition

Shelves: medicine

(Throwback Review) This is a book about Henrietta Lacks, whose cells were taken without her knowledge, which later came to be known as HeLa cells, which is considered as one of the most important landmarks in Cancer research.

Some interesting topics discussed in this book
Johns Hopkins Hospital in 1950's
Johns Hopkins Hospital is one of the best hospitals in the USA. It was built in 1889 as a charity hospital for the sick and poor in Baltimore. In the 1950s, Hopkins' public ...more

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Aug 09, 2018 Matthew rated it really liked it · review of another edition

Shelves: 2018, digital, non-fiction, library, biography

This is a very powerful and informative story. Also, with the history of personal freedoms, civil rights, and right to privacy/requiring consent, this is a very important books. I am not sure the details about the science involved in the story will appeal to all. Just the same as how those who are here for the science may be disinterested in the background stories of the people involved. But, if you think you will like one of the other, I don’t think the one you don’t care for will be distractin This is a very powerful and informative story. Also, with the history of personal freedoms, civil rights, and right to privacy/requiring consent, this is a very important books. I am not sure the details about the science involved in the story will appeal to all. Just the same as how those who are here for the science may be disinterested in the background stories of the people involved. But, if you think you will like one of the other, I don’t think the one you don’t care for will be distracting.

With that in mind, I will continue with the statement that it really is two books: the science and the people. First, the background of cell and tissue research in the last 100 years is intriguing and to hear about all of the advances and why Henretta Lacks was key to them is fascinating. Second, the background of not only the Lacks family, but also others who have had their tissues/cells used for research without permission, gives a lot of food for thought. Almost every medical advancement, and many scientific advancements, in the past 60 years are because of Henrietta Lacks. But, questions about the consent she gave, what she understood about her cells being used, and how much the family has benefited are all questioned and discussed. It really hits hard to think that you may have no control over parts of you once they are no longer part of your body. Also, the fiscal and research ramifications of giving people more rights over their body tissue/cells really creates a huge Catch-22. As I had surgery earlier this year that involved some tissue being removed for analysis, it started to make me wonder what I signed on all those forms and if my cells might still be out there being used for research.

The only part of the book that kind of dragged for me was the time that the author spent with the family late in the book. After listening to an interview with the author it was surprising to hear that this part of the book may have been her original focus (how the family has dealt with the revelations surrounding the use of their mother’s cells), but to me it kind of dragged and got repetitive. I don’t think it is bad and others may find it interesting, it just was what brought down my interest in the story a little bit.

If you like science-based stories, medical-based stories, civil/personal rights history, and/or just love a decent non-fiction, I think this book is very worth checking out.
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Oct 27, 2013 Bionic Jean rated it it was amazing · review of another edition

Shelves: read-authors-q-t, non-fiction, auto-and-biography, kindle

The Immortal Life of Henrietta Lacks is an extraordinary book. By turns it is shocking, informative and tragic. There is brilliance - but also deep injustice. It is in part an account of the development of genetics, part social commentary, and partly the story of one woman, Henrietta Lacks. She was an African-American woman descended from slaves and one white slave-owner (Lacks), and she lived as many hundreds of black people still did even as late as the 1950's, in poverty in an old slave-cabin ...more

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Aug 26, 2010 Liz Nutting rated it it was amazing · review of another edition

Shelves: science

When I was a graduate student in the field of Ethics, one of my favorite pedagogical strategies, as both a teacher and a student, was the case study. A good case study can make an abstract ethical issue more concrete. A really good case study can turn a deeply contentious issue into an opportunity for thoughtfulness and compassion; right and wrong (to the extent that those concepts even belong in the study of ethics) are nuanced by descriptions of circumstances or values or human need that can m When I was a graduate student in the field of Ethics, one of my favorite pedagogical strategies, as both a teacher and a student, was the case study. A good case study can make an abstract ethical issue more concrete. A really good case study can turn a deeply contentious issue into an opportunity for thoughtfulness and compassion; right and wrong (to the extent that those concepts even belong in the study of ethics) are nuanced by descriptions of circumstances or values or human need that can make it easier to see and hear and believe the ones on the other side(s) of an issue.

Often the case studies are hypothetical, or descriptions of actual cases pared to "just the facts, ma'am," without all the possible extenuating circumstances that can shape difficult decisions. For some students, this causes great angst. How could they be asked to make a judgment, especially one that might involve life or death, without knowing all the details? And of course, at the end of the lesson, everyone wants to know what really happened, how things turned out "in real life." On those rare occasions when we actually do know something of the outcome, it is clear that knowing what "really" happened almost never makes the decision easier, clearer, or less agonizing.

And that is what makes The Immortal Life of Henrietta Lacks so deeply compelling and challenging. It is the rare story of the outcome of a seemingly inconsequential decision by a doctor and a researcher in 1951, one that few at that time would have ever seen as an ethical decision, let alone an unethical one. A researcher studying cell cultures needs samples; a doctor treating a woman with aggressive cervical cancer scrapes a few extra cells of that cancer into a Petri dish for the researcher. The missing cells had no bearing whatsoever on the outcome of the woman's disease, so no harm done. A few weeks later the woman is dead, but her cancer cells are living in the lab.

The bare bones ethical issue at stake--whether it is ethically warranted to take a patient's tissues without consent and subsequently use them for scientific and medical research--is even now not a particularly contentious one...yet. Legally, the case law is settled: tissue removed in the course of medical treatment or testing no longer belongs to the patient. It is, in essence, refuse, and one woman's trash is another man's treasure. Ethically, almost all the professional guidelines encourage researchers to obtain consent, but they have no teeth (and most were non-existent in 1951 anyway). In reality, the vast majority of the tissue taken from patients is of limited use. But there are those rare times when a single person's cells have the potential to break open the worlds of science and medicine, to the benefit of millions--and the enrichment of a very few.

Such was the case with the cells of cervical cancer taken from Henrietta Lacks at Johns Hopkins University hospital. HeLa cells grew in the lab of George Gey. And grew. And grew, unlike any cell before it. Next, they were carried to a different laboratory at the University of Pittsburgh, where Jonas Salk used them to successfully test his polio vaccine, and thus the cancer that had killed Henrietta Lacks directly led to the healing of millions worldwide. Soon HeLa cells would be in almost every major research laboratory in the world. They traveled to Asia to help find a cure for hemorrhagic fever and into space to study the effects of zero gravity on human cells. Even today, almost 60 years after Henrietta's death, HeLa cells are some of the most widely used by the scientific community.

With such immeasurable benefits as these, who could possibly doubt the wisdom of Henrietta's doctor to take a tiny bit of tissue? But the "real" story is much more complicated. Henrietta Lacks was uneducated, poor and black. Her cancer was treated in the "colored" ward of Johns Hopkins. Her death left five children without their mother, to be raised by an abusive cousin. Should any of that matter in weighing the morality of taking tissue from a patient without her consent, especially in light of the benefits?

God knows our country's history of medical experimentation on the poor and minority populations is not pretty. Ironically, one of the laboratories researching with HeLa cells in the 1950s was the one at the Tuskegee Institute--at the very same time that the infamous syphilis studies were taking place. In light of that history, Henrietta's race and socioeconomic status can't help but be relevant factors in her particular case. But her children's status? What bearing does that have?

According to author Rebecca Skloot, in ethical discussions of the use of human tissue, "[t]here are, essentially, two issues to deal with: consent and money." Both become issues for Henrietta's children. The family didn't learn until 1973 that their mother's cells had been taken, or that they'd played such a vital role in the development of scientific knowledge. They spent the next 30 years trying to learn more about their mother's cells. As they learned of the money made by the pharmaceutical companies and other companies as a direct result of HeLa cells, they inevitably asked questions about what share, if any, they were entitled to. As Henrietta's eldest son put it, "If our mother so important to science, why can't we get health insurance?"

But even more than financial compensation, the family wants recognition--and respect--for their mother. They want the woman behind her contributions acknowledged for who she is--a black woman, a mother, a person with name longer than four letters. And they want to know the mother they never knew, to find out the facts of her death. In the lab at Johns Hopkins, looking through a microscope at her mother's cells for the first time, daughter Deborah sums it up: "John Hopkin [sic] is a school for learning, and that's important. But this is my mother. Nobody seem to get that."

Would a fully informed Henrietta Lacks have made the decision to give her tissue to George Gey if asked? Would her decision either way have had any affect whatsoever on her children's future lives? We'll never know, of course. But reading the story behind the case study makes these questions far more potent than any ethics textbook can. And as science now unravels the strains of our DNA--thanks in no small part to HeLa--these are no longer inconsequential questions for any of us. Perhaps we, too, like the doctors and scientists who have long studied HeLa, can learn from the case study of Henrietta Lacks.
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Aug 31, 2019 Ahmad Sharabiani rated it really liked it · review of another edition

Shelves: health, 21th-century, biography, medicine, united-states, science, literature, history

The Immortal Life of Henrietta Lacks, Rebecca Skloot

The Immortal Life of Henrietta Lacks (2010) is a non-fiction book by American author Rebecca Skloot.

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine.

The first “immortal” human cells grown in culture, they are still alive today, though she has been dea The Immortal Life of Henrietta Lacks, Rebecca Skloot

The Immortal Life of Henrietta Lacks (2010) is a non-fiction book by American author Rebecca Skloot.

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine.

The first “immortal” human cells grown in culture, they are still alive today, though she has been dead in 1951. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings.

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 remains virtually unknown, buried in an unmarked grave.

تاریخ نخستین خوانش: روز سی و یکم ماه آگوست سال2014میلادی

عنوان: حیات جاودانه هنرییتا لکس؛ نویسنده: ربکا اسکلاوت (اسکلوت)؛ مترجم: حسین راسی؛ تهران آرامش‏‫، سال1390؛ در426ص؛ شابک9789649219165؛ موضوع: هنرییتا لکس از سال1920م تا سال1951م؛ بیماران و سرطان - اخلاق پزشکی - کشت یاخته ها - آزمایش روی انسان از نویسندگان ایالات متحده آمریکا - سده21م‬

زندگینامه ی بیماری به نام «هنرییتا لکس» است، نامش «هنریتا لکس» بود، اما دانشمندان ایشان را با نام «هلا» میشناسند؛ یک کشاورز تنباکوی فقیر جنوب بودند، که در همان سرزمین اجداد برده ی خود، کار میکردند، اما سلولهایش - که بدون آگاهی ایشان گرفته شده - به یکی از مهمترین ابزارهای پزشکی شد؛ نخستین سلولهای «جاودانه»ی انسانی که، رشد یافته اند، و امروز هنوز هم زنده هستند، اگرچه ایشان در سال1951میلادی درگذشته اند؛

اگر بتوانیم همه ی سلولهای «هلا» را، که تکثیر شده اند، وزن کنیم، شاید وزن آنها، به بیش از پنجاه میلیون تن برسد؛ و آگر آنها را انباشته کنیم، به بزرگی یکصد برابر ساختمان «امپایر استیت» میشود؛ سلولهای «هلا»، برای ایجاد «واکسن فلج اطفال» حیاتی بودند؛ سلولهای ایشان، پرده از اسرار «سرطان»، «ویروسها»، و اثرات «تشعشعات بمب اتم»؛ برداشتند؛ همچنین پیشرفتهایی همانند «لقاح آزمایشگاهی»، «کلونینگ»، و «نقشه برداری ژن»، یاری کرده اند؛ و توسط میلیاردها انسان، خریداری و فروخته شده اند؛ با اینحال «هنریتتا لکس» ناشناخته مانده، و در یک گور نامشخص دفن شده است

این کتاب به بخش‌های: برخورد اخلاق در حرفه پزشکی با نژادپرستی، و محرومیت‌های «تاریخی- اجتماعی» رنگین پوستان، برخورد جنبه‌ های معنوی، و حقوقی مالکیت بافت‌های بدن انسان، به تنگدستی و خرافات‌، و برخورد با اکتشاف‌ها، راهکارها، و شیوه ‌های نوین پزشکی هم پرداخته، و نکاتی خواندنی را، پیش روی چشمان و انگشتان خوانشگران میگذارد؛ «حیات جاودانه هنرییتا لکس»: صحبت‌ها، یادمانهای نزدیکان «لکس»، و نگاهی به اسناد قانونی، و پرونده‌های پزشکی ایشان نیز، در این کتاب هست؛ نگارنده، در این نوشتار، علاوه بر نگارش تاریخچ ی زندگی «هنریتیا لکس»، به معرفی «سلول‌های هیلا»، و پاسخ‌گویی به پرسش‌‌هایی درباره ی دانش پزشکی، اخلاق، نژاد، و طبقه‌ بندی اجتماعی نیز، پرداخته است

تاریخ بهنگام رسانی 15/02/1400هجری خورشیدی؛ 06/12/1400هجری خورشیدی؛ ا. شربیانی ...more

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Oct 07, 2016 Matt rated it it was amazing · review of another edition

Recommended to Matt by: SoMany

Shelves: audiobook, buddy-read

There are some books that I finish and am left in awe, questioning everything that I thought I knew on a subject. Or, as is the case hear, having learned so much about which I knew nothing. My jaw is still on the floor after I finished this book and I can only imagine the controversies and discussions it might provoke. A thank you goes out to three Goodreads friends who recommended that I read this book and open an avenue for discussion. Aven, Brenda, and Rae, I hope we can begin a wild and intr There are some books that I finish and am left in awe, questioning everything that I thought I knew on a subject. Or, as is the case hear, having learned so much about which I knew nothing. My jaw is still on the floor after I finished this book and I can only imagine the controversies and discussions it might provoke. A thank you goes out to three Goodreads friends who recommended that I read this book and open an avenue for discussion. Aven, Brenda, and Rae, I hope we can begin a wild and intriguing dialogue, pulling others into the mix as things gain momentum.

Who was Henrietta Lacks? What are HeLa cells? These are two of the foundational questions that Rebecca Skloot sought to answer in this poignant biographical piece. While I have tackled a number of biographies in my time as a reader, Skloot offered a unique approach to the genre in publication. Henrietta Lacks grew up in rural Virginia, picking tobacco and made ends meet as best she could. After marrying, she had a brood of children, including two of note, Elsie and Deborah, whose significance becomes apparent as the reader delves deeper into the narrative. Skloot offered up a succinct, but detailed narrative of how Lacks found an unusual mass inside her and was sent from her doctor to a specialist at Johns Hopkins (yes, THAT medical centre) for treatment. The mass was malignant and Lacks was deemed to have cervical cancer. Her surgeon, following the precedent of many doctors in the early 1950s, took samples of her tumour as well as that of the healthy part of her cervix, hoping to be able to have the cells survive so they could be analysed. Past attempts by doctors and scientists failed to keep cells alive for very long, which led to the constant slicing and saving technique used by those in the medical profession, when the opportunity arose. As it turns out, Lacks' cells were not only fascinating to explore, but George Gey (Head of Tissue Culture Research at Johns Hopkins) noticed that they lasted indefinitely, as long as they were properly fed. Gey realised that he had something on his hands and tried to get approval from the Lacks family, though did so in an extremely opaque manner. After Lacks succumbed to the cancer, doctors sought to perform an autopsy, which might allow them complete access to Lacks' body. Ignorant of what was going on, Henrietta's husband agreed, thinking that this was only to ensure his children and subsequent generations would not suffer the agony that cancer brought upon Henrietta. So began the conniving and secretive nature of George Gey. He harvested these 'special cells' and named them "HeLa", a brief combination of the original patient's two names. Their phenomenal growth and sustainability led him to ship them all over the country and eventually the world, though the Lacks family had no idea this was going on. HeLa cells were studied to create a polio vaccine (Jonas Salk used them at the University of Pittsburgh), helped to better understand cellular reactions to nuclear testing, space travel, and introduction of cancer cells into an otherwise healthy body during curious and somewhat inhumane tests on Ohio inmates. During all this, Johns Hopkins remained completely aware of what was going on and the transmission of HeLa cells around the globe, though did not think to inform the Lacks family, perhaps for fear that they would halt the use of these HeLa cells. Through the use of the term 'HeLa' cells, no one was the wiser and no direct acknowledgement of the long-deceased Henrietta Lacks need be made. Skloot provided much discussion about the uses, selling, 'donating', and experimenting that took place, including segments of the scientific community in America that were knowingly in violation of the Nuremberg Rules on human experimentation, though they danced their own legal jig to get around it all. The crux of the biography lay on this conundrum, though it would only find its true impact by exploring the lives of those Henrietta Lacks left behind after her death.

Skloot took the time to pepper chapters with the history of the Lacks family as they grew up and, eventually, what happened when they were made aware that the HeLa cells existed, over two decades after they were obtained and Henrietta had died. Skloot split this other biographical piece into two parts, which eventually merge into one, documenting her research trips and interviews with the family alongside the presentation of a narrative that explores the fruits of those sit-down interviews. That Skloot tried to remain somewhat neutral is apparent, though through her connection to Henrietta's youngest daughter, Deborah, there was an obvious bias that developed. Superimposing these two narratives would, hopefully, offer the reader a chance to feel a personal connection to the Lacks family and the struggles they went through. In her discussions of the Lacks family, Skloot pulled no punches and presented the raw truths of criminal activity, abuse, addiction, and poverty alongside happy gatherings and memories of Henrietta. No biographical piece would be complete if it were only window dressing and trying to paint a rosy picture of this maligned family without offering at least a little peek into their daily lives. However, it balanced out and Skloot ended up with what the reader might call a decent introduction to this run of the mill family unit. Their ire at being duped by Johns Hopkins was apparent, alongside the dichotomy that HeLa cells were so popular, yet the family remained in dire poverty in the poor areas of Baltimore.

The legal ramifications of HeLa cell usage was discussed at various points in the book, though there was no firm case related to it, at least not one including the Lacks family. One person I know sought to draw parallels between the Lacks situation and that of Carrie Buck, as illustrated wonderfully in Adam Cohen's book, Imbeciles (https://www.goodreads.com/book/show/2...). While the courts surely fell short in codifying ownership of cells and research done on them, the focus of Skloot's book was the social injustice by Johns Hopkins, not the ineptitude of the US Supreme Court, as Cohen showed while presenting Buck v. Bell to the curious audience. While George Gey vowed that he gave away the HeLa cell samples to anyone who wanted them, surely the chain reaction and selling of them in catalogues thereafter allowed someone to line their pockets. Skloot offers up numerous mentions from the family, usually through Deborah, that the Lacks family was not seeking to get rich off of this discovery of immortal cells. While companies were spending millions and profiting billions from the early testing of HeLa cells, no one in the family could afford to see a doctor or purchase the medicines they needed (all of which came about because of tests HeLa cells facilitated!). It is both fascinating and angering to see the system wash their hands of the guilt related to immoral collecting and culturing of these HeLa cells. Skloot did explore the slippery slope of cells and tissue as discarded waste, as well as the need for consent in testing them, something the reader ought to spend some time exploring once the biographical narrative ends. It is sure to confound and confuse even the most well-grounded reader.

The latter chapters touched upon the aptly used word from the title "Immortal" as it relates to Henrietta Lacks. Be it a biography that placed a story behind the woman, a detailed discussion of how the HeLa cell came into being and how its presence is all over the medical world, or that medical advancements as we know them will allow Henrietta Lacks' being to live on for eternity, the reader can reflect on which rationale best suits them. While there is a religious undertone in the biography as it relates to this, Christianity is not inculcated into the reader's mind, as it was not when Skloot learned about these things.

Do I know Henrietta Lacks any better now, after Skloot completed her work? Most definitely! Can I, a complete scientific dunce, better understand HeLa cells and the idea behind cell growth and development? Completely! Do I feel there was an injustice done to the Lacks family by Johns Hopkins in 1951 and for decades to come? Yes, I do harbour a strong resentment to the duplicitous attitude undertaken by a hospital whose founder sought to ensure those who could not receive medical care on their own be helped and protected. Is there a lingering legal argument to be made for compensatory damages or at least some fiduciary responsibility owed to the Lacks family? That is a very grey area for me, only further complicated by the legal discussions in the Afterward and the advancement of new and complicated scientific discoveries, which also bore convoluted legal arguments. I will say this... Skloot brought Henrietta Lacks to life and if that puts a face to those HeLa cells, perhaps all those who read this book will think twice about those medicines used in their bodies and the scientific breakthroughs that are attributed to many powerful companies and/or nations. Maybe then, Henrietta can live on in all of us, immortal in some form or another.

Kudos, Madam Skloot for intriguing someone whose scientific background is almost nil. You brought numerous stories to life and helped me see just how powerful one woman can be, silenced by death and the ignorance of what those around her were doing.

Like/hate the review? An ever-growing collection of others appears at:
http://pecheyponderings.wordpress.com/ ...more

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Nov 13, 2010 carol. rated it really liked it · review of another edition

Shelves: non-fiction, medicine, science

Overall, a four star read that should probably be required reading for both biology and American history classes. (Actually, it was a far more interesting read than that makes it sound).

While I had heard a great deal of buzz on the book, I wasn't prepared for how the story evolved. The book alternates between Henrietta Lacks' personal history, that of her family, a little of medical history and Skoot's actual pursuit of the story, which helps develop the story in historical context. Skoots incl Overall, a four star read that should probably be required reading for both biology and American history classes. (Actually, it was a far more interesting read than that makes it sound).

While I had heard a great deal of buzz on the book, I wasn't prepared for how the story evolved. The book alternates between Henrietta Lacks' personal history, that of her family, a little of medical history and Skoot's actual pursuit of the story, which helps develop the story in historical context. Skoots included a lot more science than I expected, and even with ten years in the medical field, I was horrified at times. Skoots does a decent job of maintaining a journalistic tone, but some of the things she relates are terrible, from the way Henrietta grew up to cervical cancer treatment in the 50s and 60s. These were the days before cancer treatments approached the precision medicine it is aiming for today, and the treatments resembled nothing so much as trying to cut fingernails with garden shears. Just the thought of a radioactive seed tucked in the uterus causing tissue burn was enough to give me sympathetic cramps.

Part of the evil in the book is the violence her family inflicted on each other, and it's one of the truly uncomfortable areas. I think that discomfort is important, because part of where this story comes from has to do with slavery and poverty. There isn't really an ethical high ground here, and that's part of Skoot's skill in setting up the story, and part of the problem in being a white woman telling the story of a black woman.

The only reason I didn't give this a five star rating is that the narrative started to fall apart at the end, leaving behind the stories of the cell line and focus more on the breakdown of Henrietta's daughter, Deborah. While I understand she is the touchstone for the story, that she is partly telling the story of the mother through the daughter, much of Henrietta and the science is sidelined.

Interesting questions popped up while reading; namely, why does everyone equate Henrietta's cancer cells with her person? As an illustration, if you tell people they have a cancerous tumor, the reaction is "get rid of it." It is categorized as "other" in everyone's mind and not recognized it as an intrinsic part of the person with cancer. It is not "them." Biologically speaking, I'm not sure the book answered the question of whether of not the HeLa cells actually were genetically identical to Henrietta, or if they were mutated--altered DNA. While that might be cold comfort, it's a huge philosophical and scientific question that is the pivot point for a number of issues. Treating the cells as if they were "normal" is part of what lead the scientists into disaster as evidenced by the discovery that so many cell lines were HeLa contaminated (I don't believe that transmission mechanism was explained either, which irks me). It also could be the basis for a sophisticated legal and ethical argument. ...more

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Jan 07, 2015 Dan rated it really liked it · review of another edition

Shelves: 2015

When a poor woman dies of cervical cancer in 1951, her cancerous cells live on. But what happens when her biological material generates billions of dollars for the drug and pharmaceutical industry, leaving her dirt poor descendants in the lurch?

Yeah, I know I wrote that like the teaser for one of my mysteries but the only mystery here is how people who have profited from the diseased cells that killed a woman can sleep at night while her kids and grand kids don't have two nickels to rub together When a poor woman dies of cervical cancer in 1951, her cancerous cells live on. But what happens when her biological material generates billions of dollars for the drug and pharmaceutical industry, leaving her dirt poor descendants in the lurch?

Yeah, I know I wrote that like the teaser for one of my mysteries but the only mystery here is how people who have profited from the diseased cells that killed a woman can sleep at night while her kids and grand kids don't have two nickels to rub together.

The Immortal Life of Henrietta Lacks is really two stories. One of Henrietta Lacks and her cancer cells that lived decades beyond her years, and the other of Rebecca Skloot and the surviving members of the Lacks family.

Henrietta Lacks married her counsin, contracted multiple STD's due to his philandering ways, and died of misdiagnosed cervical cancer by the time she was 30. However, the cancer that killed her survives today in the form of HeLa cells, which have been taken to the moon, exposed to every manner of radiation and illness, and all sorts of other experiments.

While other people are raking in money due to the HeLa research, the surviving Lacks family doesn't have a pot to piss in or a window to throw it out of, bringing me to the real meat of the book: The pharmaceutical industry is a bunch of dickbags. Imagine having something removed that generated billions of dollars of revenue for people you've never met and still needing to watch your budget so you can pay your mortage. Fair? Shit no, but that's the way it is, apparently. It also seems illogical that you can patent things you didn't create but again, that's the way the cookie crumbles.

The Immortal Life of Henrietta Lacks is an eye-opening look at someone most of us have never heard of but probably owe some sort of debt to. Also, it drags the big money pharma companies out in the sun. Sadly, they do not burst into flames like the vampires they are. Four out of five stars. I'm going to go read something happy now. ...more

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Jan 19, 2017 Margitte rated it it was amazing · review of another edition

Shelves: american-history, american-author, reviewed, african-american, biography-and-memoir, nonfiction

The gift of life is surely the greatest gift of all. So how can the story of the remarkable woman who gave that gift over and over again to millions of people have been overlooked for so long?

In 1951 a poor African American woman in Maryland became an uninformed donor to medical science. Henrietta Lacks died at age 31 of cervical cancer at John Hopkins hospital in Baltimore. Then doctors discovered that tumor cells they had removed from her body earlier continued to thrive in the lab - a medical ...more

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Sep 21, 2019 Swrp rated it it was amazing · review of another edition

This book has been an incredible read! Clearly, a result of hard work and intense research and, above all the fact that the author has taken student loans and used her credit cards for the research work and had no other backing or support.

The story of Henrietta Lacks is a required read for all, specifically for those interested in life and science.

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Dec 12, 2015 Carol rated it really liked it · review of another edition

Shelves: health, medical, ebook, read-2015, non-fiction

This 2010 work of non-fiction regarding THE IMMORTAL LIFE OF HENRIETTA LACKS is a sad story and a tough, draining read that shocked me more than once along the way.

Henrietta was a poor black woman only 31 years of age when she died of cervical cancer leaving five children behind, her youngest, Deborah, just a baby. Her story is a heartbreaking one, but also an important one as her cancer cells, forever to be known as HeLa taken without her consent or knowledge, saved thousands of lives.

Through t

...more

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Aug 17, 2011 Rachel rated it it was amazing · review of another edition

Recommends it for: anyone in a white coat

Recommended to Rachel by: NYT

Shelves: nonfiction, bioethics, history-of-science, could-read-1000-times, mingei-book-club, biology-and-natural-history, cultural-studies, well-i-swan, six-stars

Full disclosure: I come to this book from a weirdly fortuitous place. Take my brief, but mind-searing, stint in gynecologic oncology research ca. 2002, which involved a weekly trek to the OR to pick up still-warm tumors, with the women who informedly consented to donate them often open on the table as I did so. Then throw in two years working in a tissue culture hood, two more in a narrative nonfiction book group, and another big chunk of time studying infectious diseases. Mix in interests in so ...more

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Dec 27, 2010 Stacey rated it it was amazing · review of another edition

Shelves: books-by-women, borrowed-from-library, nonfiction, my-review-or-notes, all-time-favorites, science

I've started and erased my little book commentary so many times because this story is so overwhelming and so important on multiple levels, I'm not sure anything I could say about it would do justice to the complexity and dichotomy of the story surrounding Henrietta Lacks. It might not be far from the truth to state that she was the most important person who ever lived. A physical part of her body has saved hundreds of thousands, perhaps millions, of lives, and improved the lives of countless oth I've started and erased my little book commentary so many times because this story is so overwhelming and so important on multiple levels, I'm not sure anything I could say about it would do justice to the complexity and dichotomy of the story surrounding Henrietta Lacks. It might not be far from the truth to state that she was the most important person who ever lived. A physical part of her body has saved hundreds of thousands, perhaps millions, of lives, and improved the lives of countless others. And her story is not over yet. Her cells are still being used in medical research all over the world. But these benefits came at the cost of a violation of her rights, in a time when it was commonplace for doctors and researchers to just do and take, without consent, especially among poor populations and people of color.

Some of the things done with Henrietta's cells saved lives, some were heinous experiments performed on people who had no idea what was being done to them, in a grotesquely distorted and amplified reflection of what was done to Henrietta. Nuremberg was dismissed in the United States as something that only applied to the fallen Nazi's. Any act was justifiable in the name of science. And yet, some of the things done right her in our own nation were reminiscent of the research being conducted under the direction of the notorious Dr. Mengele.

Reading certain parts of this book, I found myself holding my breath in horror at some of the ideas conjured by medical practioners in the name of “research.” Of course, we know.* Anyone who is even moderately informed on this nation's medical history knows about the Tuskegee trials, MK Ultra, flu and hepatitis research on the disabled and incarcerated, radiation exposure experiments on hospital patients, and cancer, cancer, cancer. The poor, disabled and people of color in this country, the “land of the free,” have been subjected to so many cancer experiments, it defies belief. Many of these trials, including some devised of Henrietta's cells, have involved injecting cancer, non-consensually, into human subjects.

So while it is true that there can be utterly no doubt that our lives, and the lives of much of the world, are better, because of the knowledge made possible by parts of Henrietta Lacks's body, still acknowledgment of this reality comes at the cost of knowing that procedures were performed on her without her knowledge or understanding, and without her consent, with impunity; these actions were made even easier because she was poor, black and female, and this is to say nothing of the numerous and unethical violations of her (and her children's) privacy. It's an old story.

It's a story that her biographer, Rebecca Skloot, handles with grace and compassion. Henrietta is not some medical spectacle, she was a real woman. If she has been deified by her friends and family since her death, it is maybe the homage that she deserves, not for her cells, but for her vibrance, kindness, and the tragedy of a mother who died much too young.

There are a great many scientific and historical facts presented in this book, facts that I couldn't possibly vet for veracity, but the science seems sound, if simplistic, and the history is presented in a conversational way, that is easy to read, and uninterrupted by footnotes and references. Family recollections are presented in storyteller fashion, which makes for easy and compelling reading. Fact-checking is made easy by a list of references, presented in chapter-by-chapter appendices.

Rarely do I read something that makes me want to collar strangers in the street and tell them, “You MUST read this book,” but this is one of those times. Henrietta's story is bigger than medical research, and cures for polio, and the human genome, and Nuremberg. Henrietta's story is about basic human rights, and autonomy, and love. It's about knowledge and power, how it's human nature to find a way to justify even the worst things we can devise in the name of the greater good, and how we turn our science into a god.

This story is bigger than Rebecca Skloot's book. But I am grateful that she wrote it, and thankful to have read it. Would the story have changed had Henrietta been given the opportunity to give her informed consent? That's the thread of mystery which runs through the entire story, the answer to which we can never know.

*documentation in this list is inconsistent, but most of these experiments can be independently verified. ...more

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Jan 06, 2017 Christy rated it it was amazing · review of another edition

I do believe this book must have scored near the top of all books used in college courses these last 5-6 years - from English to history and social sciences, but I wonder how much traction it got in medical school and across the healthcare and medical research fields. It quickly became a "classic" because so many issues are covered: race, class, gender, genetics, property rights, and about the social ends of science and our technological choices. As well, it's a story of how some people are used ...more

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Apr 27, 2010 Diane rated it really liked it · review of another edition

Shelves: medical, ethics, science, nonfiction, read-for-work

I am late to this book party, but let me explain: I get twitchy about medical stuff. Earlier this year I had to abandon Rosemary Mahoney's book about the blind because it described an eye surgery. I have never been able to finish Dr. Atul Gawande's Complications because of its description of medical procedures. It was a small miracle that I was able to finish the Call the Midwife series, because I hate childbirth scenes.

When this Henrietta Lacks book started tearing up the bestseller lists a fe ...more

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Jan 25, 2013 Suzanne Leopold (Suzy Approved Book Reviews) rated it really liked it · review of another edition

April 22nd will be a film on HBO !!!

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Jun 13, 2010 Kate rated it did not like it · review of another edition

Shelves: non-fiction

This book irritated me from the beginning. It couldn't decide if it was a history of the cells, the life story of one woman, a chronicle of how an author tracks down the life story of a woman, a position paper on racism, a position paper on human tissue ownership, or a position paper on disorganized rhetoric.

I think it was all of those, and it drove me absolutely up the wall.

As a history of the HeLa cells ... I read a Wired article that was better.
As the life story of Henrietta Lacks ... it rea ...more

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Jul 02, 2010 Christina rated it really liked it · review of another edition

Shelves: book-club-books, non-fiction

This was an interesting read. While I applaud Skloot's attempt to present a fair look at the history of the HeLa cell line used in research labs all over the world, the book is clearly skewed toward sympathy for the family. Not that they don't deserve sympathy, but really, the problems of the family is NOT the fault of anyone involved with the cell line. Don't get me wrong, Henrietta and her family have had a hard life, and they do deserve some sympathy. But not for this particular issue.

The sad This was an interesting read. While I applaud Skloot's attempt to present a fair look at the history of the HeLa cell line used in research labs all over the world, the book is clearly skewed toward sympathy for the family. Not that they don't deserve sympathy, but really, the problems of the family is NOT the fault of anyone involved with the cell line. Don't get me wrong, Henrietta and her family have had a hard life, and they do deserve some sympathy. But not for this particular issue.

The sad fact is that Henrietta died of an aggressive cancer, leaving her family to live their lives without her. That was not her fault or the fault of her family, but it was also not the fault of the hospital staff of Johns Hopkins. Yes, there was racial and socio-economic discrimination, but the fact remains that Henrietta was treated to best of the ability of the doctors at that time. Do we view the taking of cell samples from Henrietta without her permission as unethical today? Most people would say yes. But the law still remains unclear about that, and in 1954 that was most certainly not seen as unethical - it was common practice. So in the context of the time, the act was not unethical.

As for monetary compensation, Johns Hopkins did not profit from the growth of HeLa cells; in fact, the scientist that first worked with HeLa cells GAVE the cells away to many many many other labs FOR FREE. Those labs shared with other labs, etc. Are there companies that profit from the cells now? Yes. But they got the cells the same way everyone else did back then - for free. The company then did their own research to find a way to mass produce, store and ship living cells. At the point the first company started mass producing and selling the cells the identity of the donor was long hidden, and the fact the cells were widespread at that time made them common property, so people in possession of the cells could do pretty much anything they wanted with them.

And now for the part that is a little stickier - the family found out about Henrietta's cells, were (sort of) tricked into donating blood and cell samples and were kept in the dark about the cell line for decades. Was that right? NO, absolutely not. HOWEVER, I will point out that some of the subsequent anger, confusion and fear on the part of the family was due to their extreme lack of education rather than a malicious attempt to prey upon the Lacks family.

The science presented in the book is simplified somewhat for the lay person, which is nice, as is the look at the advances in medicine and research that HeLa cells have brought to the world. As a scientist, however, I think that Skloot's explanations were a little fuzzy and did not really dispel most people's image of how science works in the real world. Perhaps a little more objectivity and less family bonding would have made this a better book.

In conclusion: though Skloot claims she tries to give an unbiased view of the history of HeLa cells and the family from whence it came, I am concerned that lay people who read this will not understand some of the finer points and it will increase the already rampant fear of science that pervades American culture. The majority of Americans are woefully un-educated in the sciences, to the point that many people view it as no different than magic,but weirder and scarier. ...more

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Dec 14, 2016 Lata rated it really liked it · review of another edition

Shelves: auth-f, x2016-read

A lot to process with this book. This book's been out for a while, so I'm just going to put down a bunch of thoughts rattling around in my head, and probably leave it at that:

-legacy left by slavery and how it affected Henrietta Lacks and the members of her family, and African Americans in general (where they lived, what kind of employment was available to them, the quality of education available to them, the history of abuse and violence, and the impact on their mental health, and the quality a A lot to process with this book. This book's been out for a while, so I'm just going to put down a bunch of thoughts rattling around in my head, and probably leave it at that:

-legacy left by slavery and how it affected Henrietta Lacks and the members of her family, and African Americans in general (where they lived, what kind of employment was available to them, the quality of education available to them, the history of abuse and violence, and the impact on their mental health, and the quality and availability of healthcare)

-the assumptions and treatment by the medical establishment, at the time, of their patients and patients' rights

-the lack of laws, or their lack of clarity, around a patient's consent, and the ownership of a patient's waste products from medical procedures. This was well illustrated in this book, from the 1950s to the time of the book's publication.

-the quality of scientific education and knowledge in the general public. Unless people have some understanding of science, how are they to know what questions to ask of their doctors? The more affluent will generally fare better here, I suspect, what with their access to probably better trained teachers, and the ability to get higher education. And affluence and better outcomes would be partially dependent on where one started out in life.

-thank goodness medical procedures improve over time, or are retired in favour of treatments that work!!

-bioethics--thank goodness there is debate and evolution of ideas and laws. Though there are probably still lots of grey areas around research and commercializations

-I was interested to find out more about the point raised about the DNA of the cell descendants of Henrietta's original cancerous cells.

-I was sickened by the treatment, or perhaps I should say mystery around the treatment of Elsie, Henrietta's eldest daughter at the hospital for the insane. Or what doctors could call insane at the time.

This was a painful read, but an important accounting of a part of US history, and more specifically, the legacy of slavery on a family, and the changing attitudes and practices in medicine and science.
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Mar 29, 2020 Woman Reading rated it really liked it · review of another edition

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In The Immortal Life of Henrietta Lacks (ILHL), Skloot blends the Lacks' family history with that of medical sciences and all against a backdrop of systemic racism.

For decades, her cell line, named HeLa, has far eclipsed the woman of their origin. Henrietta Lacks was born in 1920 as the ninth child of Eliza and Johnny Pleasant in Roanoke, Virginia. When Eliza died after birthing her tenth child in 1924, the family was divided amongst the larger network of relatives who pitched in to raise the c In The Immortal Life of Henrietta Lacks (ILHL), Skloot blends the Lacks' family history with that of medical sciences and all against a backdrop of systemic racism.

For decades, her cell line, named HeLa, has far eclipsed the woman of their origin. Henrietta Lacks was born in 1920 as the ninth child of Eliza and Johnny Pleasant in Roanoke, Virginia. When Eliza died after birthing her tenth child in 1924, the family was divided amongst the larger network of relatives who pitched in to raise the children. Henrietta and David Lacks, her first cousin and future spouse, were raised together by their grandfather Tommy in a former slaves quarter cabin in Lacks Town (Clover), Virginia. Lacks Town had been the inheritance carved out of Henrietta's white great grandfather Albert Lacks' tobacco plantation in the late 1800s.

From Skloot's interviews with relatives, Henrietta was a generously hospitable, hard working, and loving mother whose premature death led to enormous consequences for her children. Henrietta suspected a health problem a year before her fifth and last child was born. She went to Johns Hopkins, a renowned medical institution and a charity hospital, in Baltimore and received a diagnosis of cervical cancer in January 1951. (view spoiler)

During her first treatment for cancer, malignant cells were removed - without Henrietta's knowledge - and cultivated in a lab environment by Johns Hopkins researchers attempting to uncover cancer's secrets. Although the brachytherapy with radium was initially deemed a success, Henrietta's brown skin turned black as the cancer aggressively metastasized. After several weeks of great pain, Henrietta died in October 1951.

ILHL raises questions about the extent to which we own our bodies, informed consent, and ethics surrounding the research of anything human. The HeLa line was a rare scientific success as those malignant cells thrived in lab conditions and eventually became crucial to thousands of research projects. Skloot reported that in 2009, an average human body was worth anywhere from $10,000 to $150,000. In the case of John Moore who had leukemia, his cell line was valued in millions of dollars. To prevent human trafficking, it is illegal to sell human organs and tissues, but they can be donated while processing fees are assessed.

As a charity hospital in the 1950s, segregated patient wards in Johns Hopkins were filled with African Americans whose tissue samples were regarded by researchers as "payment." One cannot "donate" what one doesn't know. The Lacks family discovered HeLa's existence 22 years after Henrietta died. They've struggled to pay their medical costs while biotechnology companies have reaped profits from cultivating and selling HeLa cells.

In 1999, the Rand Corporation estimated that 307 million tissue samples from 178 million people (almost 60 percent of the population) were stored in the US for research purposes. Although the US is nowhere close to definitively addressing the questions raised by ILHL , a little progress has been made. In 1974, the Federal Policy for Protection of Human Subjects (the "Common Rule") required informed consent for federally funded research. The Common Rule was passed in response to egregious and inhumane experiments such as the Tuskegee Syphilis project and another scientist who wanted to know whether injecting people with HeLa would give them cancer. Note that this rule exempts privately funded research. In 1996, the Health Insurance Portability and Accountability Act (HIPAA) made it illegal for health practitioners and insurers to make one's medical information public without their consent. This was after researchers had published medical information about the Lacks family.

It should be evident that human tissues have long been monetized. One method of creating monopoly-like control has been to obtain a patent. As of 2005, the US has issued patents for about 20 percent of all known human genes. Myriad Genetics patented two genes - BRCA1 and BRCA2 - indicative of breast and ovarian cancer. In 2009 the American Civil Liberties Union (ACLU), on behalf of scientists, sued Myriad Genetics. In 2013, the US Supreme Court gave the victory to the ACLU and invalidated the patents, thus lowering future research costs and obliquely taking a step toward defining ownership of the human body. ...more

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About Rebecca Skloot

Rebecca Skloot

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Rebecca Skloot is an award winning science writer whose work has appeared in The New York Times Magazine; O, The Oprah Magazine; Discover; and many other publications. She specializes in narrative science writing and has explored a wide range of topics, including goldfish surgery, tissue ownership rights, race and medicine, food politics, and packs of wild dogs in Manhattan. She has worked as a co ...more

Books by Rebecca Skloot

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The Immortal Life of Henrietta Lacks / Natives / Why Im No Longer Talking To White People About Race

The Immortal Life of Henrietta Lacks: Young Adult Edition

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“Like the Bible said,' Gary whispered, 'man brought nothing into this world and he'll carry nothing out. Sometimes we care about stuff too much. We worry when there's nothing to worry about.” — 93 likes

“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?” — 67 likes

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