The Immortal Life of Henrietta Lacksby Rebecca Skloot Published 02 Feb 2010
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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.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.
"The Immortal Life of Henrietta Lacks" Reviews
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.
“Wait a second. What the hell is this all about?” I said as I tried to pick up the paper to read it, but Doe kept trying to force my hand with the pen down on it so I couldn‘t see what it said.
“Oh, that’s just legal mumbo-jumbo. You’d rather try and read your mortgage agreement than this old thing. Just put your name down and let’s be on our way, shall we?” he said.
There was a brief scuffle, but I managed to distract him by messing up his carefully gelled hair. As he shrieked and ran around looking for a mirror, I finally got to read the document.
“This is a medical consent form. What’s going on?” I demanded as I shook the paper at him. Once he had combed and smoothed his hair back into perfection, Doe sighed.
“Very well, Mr. Kemper. I guess I’ll have to come clean. Do you remember when you had your appendix out when you were in grade school?”
“Sure. That gave me one of my better scars, but that was like 30 years ago. Why are you here now?” I asked.
“You’re probably not aware of this, but your appendix was used in a research project by DBII,” Doe said.
“Really? I assumed it just got incinerated or used in the hospital cafeteria’s meatloaf special. Why would anyone want to study my rotten appendix?”
“Oh, all kinds of research is done on tissue gathered during medical procedures. Most people don’t know that, but it’s very common,” Doe said.
“OK, but why are you here now?”
“Well, your appendix turned out to be very special. It was secreting some kind of pus that no one had seen before. After many tests, it turned out to be a new chemical compound with commercial applications. So a patent was filed based on that compound and turned into a consumer product,” Doe admitted.
“That sounds disgusting. What was it used in? Because I want to make sure to never buy it,” I said.
“It’s the basis for the adhesive on Post-It Notes,” Doe said.
“Are you freaking kidding me? Post-It Notes are based on my old appendix?”
“I’m absolutely serious, Mr. Kemper. Now we at DBII need your help. Unfortunately for us, you haven’t had anything removed lately. So I have to get your consent if we’re going to do further studies,” Doe said.
“But you already got my goo-seeping appendix. I don’t have another one,” I said.
“True, but sales have been down for Post-It Notes lately. So after the marketing and research boys talked it over for a while, they thought we should bring you in for a full body scan. Maybe you’ve got a spleen giving out or something else that we could pull out and see if we could use it,” Doe said.
“This is pretty damn disturbing,” I said.
“Why? You’re an organ donor, right? Same thing,” Doe said.
“I don’t consider someone lucking into an organ if the Chiefs win a play-off game and I have a goddamn heart attack the same thing as companies making money off tissue I had removed decades ago and didn’t know anything about,” I said.
“Fortunately, the American government and legal system disagree. So how about it, Mr. Kemper? Will you come with me?” Doe asked.
“I dunno. What’s my end of this? You already owe me a fat check for the Post-Its.”
“Oh, no. You won’t get any money from the Post-Its, or if any future discoveries from your tissues lead to more gains.” Doe said.
“That’s complete bullshit!”
“Again, the legal system disagrees with you. But this is for science, Mr. Kemper. You don’t want to hold up medical scientific research that could save lives, do you?”
“It’s for Post-It Notes!”
“Maybe, but who is to say that the cure for some terrible disease isn't lurking somewhere in your genes? Could you live with yourself if you prevented crucial medical research just because you were ticked off that you didn’t get any money for your appendix? Remember that it’s not like you could have NOT had your appendix removed. At least, not if you wanted to keep living. And I highly doubt that you would have had the resources to have it studied and discovered the adhesive for yourself even if you would have taken it home with you in a jar after it was removed. We’re the ones who spent all that money to get some good out of a piece of disgusting gunk that tried to kill you. So shouldn’t we be compensated? What are you? Some kind of damn dirty hippie liberal socialist?” Doe said in disgust
“You’re a hell of a corporate lackey, Doe,” I said.
“Fine. I’ll do it,” I said as I signed the form. “But I want some free Post-It Notes.”
“No deal. Steal them from work like everyone else,” Doe said.
Obviously, I‘m a big fat liar and none of this happened, but I really did have my appendix out as a kid. Plus, my tonsils got yanked and I’ve had my fair share of blood taken over the years. What this book taught me is that it’s highly likely that some of my scraps are sitting in frozen jars in labs somewhere. Yours, too. If any of us have anything unique in our tissues that may be valuable for medical research, it’s possible that they’d be worth a fortune, but we’d never see a dime of it.
Henrietta Lacks couldn’t be considered lucky by any stretch of the imagination. A black woman who grew up poor on a tobacco farm, she married her cousin and moved to the Baltimore area. Her husband apparently liked to step out on her and Henrietta ended up with STDs, and one of her children was born mentally handicapped and had to be institutionalized.
In 1951, Henrietta was diagnosed with cervical cancer by doctors at Johns Hopkins. During her biopsy, cell samples were taken and given to a researcher who had been working on the problem of trying to grow human cells. Henrietta’s cancer spread wildly, and she was dead within a year. But her cells turned out to be an incredible discovery because they continued growing at a very fast rate.
The doctor at Johns Hopkins started sharing his find for no compensation, and this coincided with a large need for cell samples due to testing of the polio vaccine. The HeLa cells would be crucial for confirming that the vaccine worked and soon companies were created to grow and ship them to researchers around the world. Since then, Henrietta’s cells have been sent into outer space and subjected to nuclear tests and cited in over 60,000 medical research papers
Unfortunately, no one ever asked Henrietta’s permission and her family knew nothing about the important role her cells played in medicine for decades. Poor and with little formal education, Henrietta’s children were confused by what was actually done to their mother and upset when they learned that her tissue was part of a multi-million dollar industry that they‘ve received no compensation from..
Rebecca Skloot has written a fascinating book that clearly outlines why Henrietta’s cells were so important, why she went unrecognized for decades, the pain it’s caused her family, and the way that new medical discoveries over the last sixty years have opened a potential Pandora’s Box of legal and ethical issues regarding tissue collection, research, patents and money. This book brings up a lot of issues that we’re probably all going to be dealing with in the future.
Also posted at Kemper's Book Blog.
“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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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 billions over the following sixty years and have been instrumental in experiments across a wide range of biological science. Today, HeLa cells are sold by the vial at impressive prices. Yet, Ms. Lacks’ family has seen not a penny of compensation from the work that has been made possible by their relative’s unique cells.
Rebecca Skloot - from Powell's
Rebecca Skloot, a science writer with articles published in many major outlets, spent years looking into the genesis of these cells. The Immortal Life of Henrietta Lacks tells four stories. First is the tale of HeLa cells, and the value they have been to science; second is the life of, arguably, the most important cell “donor” in history, and of her family; third is a look at the ethics of cell “donation” and the commercial and legal significance of rights involved; and fourth is the Visible Woman look at Skloot’s pursuit of the tales. Each story is significant.
The contribution of HeLa cells has been huge and it is important to know how these cells came to be so widely used, and what are the characteristics that make them so valuable. Skloot goes into a reasonable level of detail for those of us who do not make our living in a lab coat. She adds information on how cell cultures can become contaminated, and how that impacts completed research. She also offers a description of telomeres, strings of DNA at the end of chromosomes critical to longevity, and key to the immortality of HeLa cells. Fascinating stuff.
Henrietta Lacks - From Science And Film
Skloot constructs a biography of Henrietta, and patches together a portrait of the life of her family, from her ancestors to her children, siblings and other relations. It is with a source of pride, among other emotions, that her family regards Henrietta’s impact on the world. Skloot delves into these feelings, and the experiences the Lacks family members have had over the decades with people trying to write about Henrietta, and people trying to exploit their interest in Henrietta for dark purposes.
The author had to overcome considerable family resistance before she was able to get them to meet with and ultimately open up to her. She takes us through her process, showing who she talked with, when, and the result of those conversations, what institutions she contacted re locating and gaining access to information about Henrietta and some other family members. Most interesting, and at times frustrating, is her story of how she gained the trust of some, if not all, of the Lacks family. This is like presenting a how-to of her research process, a blow-by-blow description of the way research is done in the real world, and it is very enlightening.
The Immortal Tale of Henrietta Lacks has received considerable acclaim. It is all well-deserved. The book is an eye-opening window into a piece of our history that is mostly unknown. It presents science in a very manageable way and gives us plenty to think about the next time we have a blood test or any other medical procedure. This book may not be as immortal as Henrietta’s cells, but it will stay with you for a very long time.
The HBO Film airs on April 22, 2017
8/8/13 - NY Times article - A Family Consents to a Medical Gift, 62 Years Later
3/29/17 - Washington Post - On the eve of an Oprah movie about Henrietta Lacks, an ugly feud consumes the family - by Steve Hendrix
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 loads of money on the Hela cell line while some members of the Lacks family didn’t have health insurance . Yet, I am grateful for the research advances that made a polio vaccine possible, advanced cancer research and genetics, and so much more.
Rebecca Skloot does a wonderful job of presenting the moral and legal questions of medical research without consent meshing this with the the human side giving a picture of the woman whose cells saved so many lives. We get to know her family, especially her daughter Deborah who worked tirelessly with the author to discover what happened to her mother. This made it all so real - not just a recitation of the facts. The scientific aspects are very detailed but understandable. It was the sections on Henrietta and her family that I wanted to read the most.
In 1950 there was “no formal research oversight in the United States.” Years later there are laws on “informed consent “ and how medical research is conducted, and protection of privacy for medical records. Yet even today, there are controversies over the ownership of human tissue. The in depth research over years in writing this book is evident and I believe a heartfelt effort to recognize Henrietta Lacks for her unwitting contribution to medical research.
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, however. That horse left the barn a long, long time ago.
Furthermore, I don't feel the admiration for the author of this book like I think many others do. She wanted to make herself out to be different than all the rest of the people who wrote about the woman behind the HeLa cell line but I only saw the similarities. Yes, she has established a scholarship fund for the descendants of Henrietta Lacks but I got tired of hearing again and again how she financed her research herself. I think the exploitation is there, just prettied up a bit with a lot of self-congratulatory descriptions of how HARD she had to try to talk to the family and how MANY times she called asking for interviews. At times I felt like she badgered them worse than the unethical people who had come before.
The sadness of this story is really about the devastation of a family when its unifying force, a strong mother, is removed. Piled on with more sadness about the appalling institutional conditions for mentally handicapped patients (talking about Henrietta Lacks' oldest daughter) back in the 50's and you have tragedy on top of more tragedy.
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.