4.29

4

Dec 02, 2010

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.

“ 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.

“Thank you.”

“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. ...more

5

Nov 21, 2010

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

4

Mar 17, 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 “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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5

Nov 24, 2010

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 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

==============================EXTRA STUFF

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 ...more

3

Jan 07, 2011

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, 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, pharmaceutical treatments, polio vaccination, etc).
*Thought-Provoking Ethical Questions
This book makes you ponder ethical questions historically raised by the unfolding sequence of events and still rippling currently.
Ex. 1) Informed consent: Henrietta did not provide informed consent (not required in those days).
Ex. 2) Genetic rights/non-rights: her family (whose DNA also links to those cells) did not learn of the implications of her tissue sample until years later.
Ex. 3) Patents and profits for biologic material: zero profits realized by Henrietta or her descendants; multiple-millions in profits have been realized by individuals and corporations utilizing her genetic material.
*Biographical description of Henrietta and interviews with her family. The biographical nature of the book ensures the reader does not separate the science and ethics from the family. These are not abstract questions, impacts and implications. We're reading about actual, valuable people and historic events.

Weaknesses:
*Framework: the book is framed around the author's journey of writing the story and her interactions with Henrietta's family. I thought the author got in the way and would have preferred to have to read less of her journey and more coverage of the science involved and its ethical implications. I found myself distinctly not caring how many times the author circled the block or how many trips she made to Henrietta's birthplace.
*Lack of Clarity: By mid-point through the book, I was wishing the biographical approach was more refined and focused. The narrative swerved through the author's interest in various people as she encountered them along the way: Henrietta, Henrietta's immediate family, scientists, Henrietta's extended family, a neighborhood grocery store owner, a con artist, Henrietta's youngest daughter, Henrietta's oldest daughter, etc. Everything was a side dish; no particular biography satisfied as a main course.

Bottom Line:
This book won't join my 'to re-read' shelf...but has whetted my appetite for further exploration of this important woman, fascinating topic and intriguing ethical questions.

I was left wanting more:
-more detail surrounding the science involved,
-more coverage of past and present ethical implications
-a more refined biography of Henrietta, and
-a more focused look at the impact and implications of the HeLa cell strain line on Henrietta's descendants. ...more

5

Mar 22, 2018

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 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 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. ...more

5

Nov 19, 2018

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.

3

Jan 01, 2011

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. 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. First, she's not transparent about her own journalistic ethics, which is troubling in a book about ethics. Did the Lacks family end up benefiting from her book financially? Did all Lacks give permission for their depictions in the book? We never know.

Second, Skloot's narration when describing the Lacks family suffering--sexual abuse, addiction, disability, mental illness--lacks sensitivity; it often feels clinical and sometimes even voyeuristic. Again, this is disturbing in a book that concerns the importance of dignity, consent, etc.

Finally, Skloot inserts herself into the story over and over, not so subtly suggesting that she is a hero for telling Henrietta's story. Sometimes, it appears that she is making the very offensive suggestion that she, a highly educated unreligious white woman, has healed the Lacks family by showing them science and history. ...more

4

Aug 09, 2018

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 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.
...more

5

Aug 26, 2010

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 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.
...more

3

Jul 18, 2010

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, 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. ...more

5

Oct 27, 2013

The Immortal Life of Henrietta Lacks is 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 The Immortal Life of Henrietta Lacks is 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 - the "home-house" - in East Baltimore. And although the events do not always make for easy reading, the author assures us that it is completely non-fiction. Nothing has been invented, nothing exaggerated. The author has done her level best to tell things as they were.

Although the name "Henrietta Lacks" is comparatively unknown, "HeLa" cells are routinely used in scientific experiments worldwide today, and have been for decades. They are the only human cells thought to be scientifically "immortal" ie if they are provided with the correct culture and environment they do not die. They were cut from a tumour in the cervix of Henrietta Lacks a few months before she died in 1951; extracted because she had a particular virulent form of cancer. Despite extreme measures taken in the laboratories to protect the cells, human cells had always inevitably died after a few days. HeLa cells though, stayed alive in the petri dish, and proved to be virtually unstoppable, growing faster and stronger than any other cells known.

These HeLa cells were used to develop the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilisation and a host of other medical treatments. They were sent on the first space missions to see what would happen to human cells in zero gravity. It is fair to say that they have helped with some of the most important advances in medicine. But there is a terrible irony and injustice in this. The people to benefit from this were largely white people. Henrietta Lacks's family and descendants suffered appalling poverty. Working from dawn to dusk in poisonous tobacco fields was the norm as soon as the children were able to stand. Moving from Virginia's tobacco production to Bethlehem Steel, a boiler manufacturer in South Boston, was little better, as they were then exposed to asbestos and coal.

The families had intermingled for generations. Henrietta and Day, her husband, were first cousins, and this was by no means unusual. So the predisposition to illness was both hereditary and environmental. But access to medical help was virtually nil. Most hospitals accepted only whites, or grudgingly admitted so-called "colored" people to a separate area, which was far less well funded and staffed. The Lacks family had to travel a long way in order to be treated, and then were not allowed the privilege of proper explanations as to the treatment given - or the tissue samples extracted.

At this time unusual cells were taken routinely by doctors wanting to make their own investigations into cancer (which at that time was thought to be a virus) and many other conditions. No permission was sought; none was needed. The Hippocratic oath doctors set such store by dates from the 4th Century BC, and makes no mention of it; neither did the law of the time require it. It was not until 1947, that the subject was raised. Nazi doctors had performed many ethically unsound operations and experiments on live Jews, and during the trials after the war the Nuremberg Code - a 10 point code of ethics - was set up. This states that, "The voluntary consent of the human subject is absolutely essential." Even then it was advice, not law.

Rebecca Skloot says that Howard Jones, the doctor who had originally diagnosed Henrietta Lacks' cancer, said, "Hopkins, with its large indigent black population, had no dearth of clinical material." It was clearly a racial norm of the time. In fact to be fair, the white doctors had no real conception that what they were doing had an ethical side. George Gey and his assistants were responsible for isolating the genetic material in Henrietta's cells - an astonishing feat. Gey happily shared the cells with any scientists who asked. The issue of payment was never raised, but the HeLa cells fast became a commodity, and the Lacks's family, who were never consulted about anything, mistakenly assumed until very recently that Gey must have made a fortune out of them. As Henrietta's daughter Deborah said, "Them white folks getting rich of our mother while we got nothin."

Skloot carefully chronicles some of the most shocking medical stories from these times. The reader infers from her examples that testing on the impoverished and disadvantaged was almost routine. One notorious study was into syphilis and apparently went on for 40 years. It was called the "Tuskegee study", and involved thousands of males at varying stages of the disease. At the time it was known that they could be cured by penicillin, but they were not given this treatment, in order that doctors could study the progress of the disease. In this case they were volunteers, but were encouraged by the offer of free travel to the hospital, a free meal when they got there, and the promise of $50 for their families after they died, for funeral expenses. There are many such poignant examples.

The author also says that in 1954 thousands of chronically ill elderly people, convicts and even some children, were injected by a Dr. Chester Southam with HeLa cells, basically just to see what would happen. Of course many of them went on to develop cancer. One man who had Hela cells injected in his arm produced small tumours there within days. But the patients were never informed of this, and if they did happen to ask were told they were being "tested for immunity". (We are told that Southam was prosecuted for this much later in 1966.) It was not until 1957 that there was any mention in law of "informed consent." Confidentially and privacy violation issues came far later.

After her death, four of Henrietta Lacks's children, Lawrence, Deborah, Sonny and Joe, were put in the charge of Ethel, a friend of the family who had been very envious of Henrietta. It appears that she was incredibly cruel to the children, hardly ever feeding them until late, after a day's work, when they would be given a meagre crust. She would also drag the youngest one, Joe, out of bed at will, and beat him unmercifully. Joe was only 4 months old when his mother died and grew up to have severe behavioural problems. In fact later on on life, all these children grew to have not only health problems (including all being almost deaf) but a myriad of social problems too - being involved in burglary, assault and drugs - and spent a lot of their lives in prison.

One of Henrietta's five children had been put in "Crownsville Hospital for the Negro Insane" when she was still tiny, because Henrietta was too ill to care for her any more. The story of this child, which is gradually told through Skloot's text as more of it is revealed, is heart-breaking. It is not clear why Elsie was so slow, but her mental retardation is now thought to be partly due to syphilis, and partly due to being born on the home-house stone floor - which was routine for such families at the time - and banging her head during birth. It was not known what had subsequently happened to Elsie until Skloot's research, but then some records were discovered.

A photograph of Elsie shows a miserable child apparently in pain in a distorted position. Apparently brain scans then necessitated draining the surrounding brain fluid. Never mind that the patient might then suffer violent headaches, fits and vomiting for 2-3 months until the fluid reformed; it gave a better picture. Many people had been sent to this institution because of "idiocy" or epilepsy; the assumption now is that that they were incarcerated to get them out of the way, and that tests like this, often for research, were routine. Figures from 1955, when Elsie died, showed that at that time the hospital had 2700 patients, which was 800 over the maximum capacity. The ratio of doctors to patients was 1 doctor for 225 patients.

Add into this the appalling inhumanity of history where white people used black people for their own ends, and the fears of Henrietta's family and community become inevitable. There had been stories for generations of white-coated doctors coming at dead of night and experimenting on black people. This became confused - or perhaps vindicated - by the Ku Klux Klan. Stories of voodoo, charismatic religious experiences, dire poverty, lack of basic education (one of Henrietta's brothers was more fortunate in that he had 4 years' schooling in total) untreated health problems and the prevailing 1950's attitudes of never questioning the doctor, all fed into the mix resulting in ignorance and occasional hysteria.

Much of the first part of this book includes descriptions of scientific research and discoveries; both the theory and practise of how genes were isolated. Alternating with this is the background to the racial tensions, and the history of Henrietta Lacks' ancestry and family. Rebecca Skloot, a science writer, had been fascinated by the potential story since school days, when she first heard of HeLa cells, but nobody seemed to know anything about them. She started this book in her 20's, and spent a decade researching it, financed by credit cards and student loans. As a white woman she was treated with gross suspicion by all Henrietta Lacks's family. Eventually she formed a good relationship with Deborah, but it took a year before Deborah would even speak to her, and Deborah's brothers were very resistant. Several of them were pastors, as was James Pullam, her husband. They believed the Bible literally and had many fears about how Henrietta's cells were used. Deborah herself could not understand how they were immortal. Could her mother's cells feel pain when they were exploded, or infected? Would they develop into half-human half-chicken freaks when they were split and combined with chicken cells? Were there millions of clones all looking like her mother wandering around London? The media worldwide had played its part in adding to these fears, which had been spawned by a genuine ignorance.

The interviews with Henrietta's family, and the progress and discoveries Skloot made accompanied by Deborah in the second part of the book, do make the reader uneasy. Indeed parts of these passages read like a trashy novel. Skloot says she wanted to report the conversation verbatim, so the vernacular is reported intact. Fair enough. But there is a lot of, "Deborah shouted" or, "Lawrence yelled". Of course they did! All of Henrietta's children had severe health problems, probably due to a variety of factors; their environment, upbringing and genetic inheritance. They were all very hard of hearing, so yes, they would shout when amongst themselves. Add to this Skloot's tendency to describe the attributes and appearance of a family member as "beautiful hazel-nut brown skin" or "twinkling eyes" and there is a whiff of condescension which does not sit well. Does it add anything to this account? Would a description of the author as having "raven-black hair and full glossy lips" help? Of course not. The author may feel she is being complimentary; she is not. She is being patronising. But it is difficult to know how else the total incomprehension and ignorance of how a largely white society operated could have been conveyed, other than by this verbatim reportage, even though at worst it comes across as extremely crass, and at best gently humorous.

It would be convenient to imagine that these appalling cases were a thing of the past. But the book continues detailing injustices until the date of its publication in 2010. Henrietta's son, Sonny had a quintuple bypass in 2003. Skloot reports, "The last thing he remembered before falling unconscious under the anesthesia was a doctor standing over him saying his mother's cells were one of the most important things that had ever happened in medicine." So far, so good. There was recognition. But Skloot then delivers the final shot, "Sonny woke up more than $125,500 in debt because he didn't have health insurance to cover the surgery." As Lawrence (Henrietta's eldest son) says elsewhere, "It's not fair! She's the most important person in the world and her family [are] living in poverty. If our mother [is] so important to science, why can't we get health insurance?"

Henrietta's original cancer had in fact been misdiagnosed. It was discovered years later that because she had syphilis, she had the genital warts HPV virus, which does actually invade the DNA. There is an intriguing section on this, as well as the "HeLa bomb", where one doctor painstakingly proved to the whole of the scientific community that a lot of their research had been flawed, as HeLa cells were contaminating many of the other cells they had been working with and drawing conclusions from. They were so virulent that they could travel on the smallest particle of dust in the atmosphere, and because Gey had given them so generously, there was no real record of where they had all ended up.

Deborah herself always lived in fear of inheriting her mother's cancer. Because of this she readily submitted to tests. Victor McKusick took blood samples, which Deborah believed were for "cancer tests." In fact though, Skloot claims, they were for his own research. This is another example of chronic misunderstanding. He knew of the family's mental anguish and the unfair treatment they had had. He thought she understood why he wanted the blood. He gave her an autographed copy of his book - a technical manual on Genetics. Of this, Deborah commented wryly, "It would have been nice if he'd told me what the damn thing said too." And again, "I would like some health insurance so I don't got to pay all that money every month for drugs my mother cells probably helped to make."

In 2001, Skloot tells us, Christoph Lengauer, now the Head of Oncology in one of the biggest pharmaceutical companies in the world, said of Henrietta, "Her cells are how it all started." And to Deborah, "Once there is a cure for cancer, it's definitely largely because of your mother's cells."

In 2005 the US government issued gene patents relating to the use of 20% of known human genes, including Alzheimer's, asthma, colon cancer and breast cancer. The injustices however, continue. Pharmaceutical companies, scientists and universities now control what research is done, and the costs of the resulting tests and therapies. An example of how this continues to impede scientific development according to the author is that of the company Myriad Genetics, who hold the patent on BRCA1 and BRCA2 genes. (These are the genes which are responsible for most hereditary breast cancers.) The company had arbitrarily set a charge of $3000 to have this test, amid furore amongst scientists. They had licensed the use of the test. Anyone who ignored it received a threat of litigation. Eventually in 2009 they were sued by the American Civil Liberties Union, representing a huge number of people including 150,000 scientists for inhibiting research. The commercialisation of human biological materials has now become big business.

There seems to have been some attempts at restitution since this book was published, the most recent being in August 2013. There was an agreement between the family and The National Institutes of Health to give the family some control over the access to the cells' DNA code, and a promise of acknowledgement on scientific papers. The committee set to oversee this arrangement will have 6 members, 2 of whom will be members of the family. The wheels have been set in motion.

All in all this is an important and startlingly original book by a dedicated and compassionate author. It speaks to every one of us, regardless of our colour, nationality or class. Skloot admitted that it took a long time to decide the structure of the book, in order to include all the important aspects that she wished to. There are three sections: "Life", "Death" and "Immortality", plus an "Afterword". The main thrust throughout is clearly the enduring injustice the Lacks family suffered. So perhaps the final words should be Joe's, or (as he changed his name when he converted to Islam in prison), Zakariyya's:

"I believe what them doctors did was wrong. They lied to us for 25 years, kept them cells from us, then they gonna say them things DONATED by our mother. Them cells was stolen! Those fools come take blood from us sayin they need to run tests and not tell us that all these years they done profitized off of her…. You don't lie and clone behind their backs. That's wrong - it's one of the most violating parts of this whole thing….Then doctors say her cells [are] so important and did all this and that to help people. But it didn't do no good for her, and it don't do no good for us. If me and my sister need something, we can't even go and see a doctor cause we can't afford it."

It's too late for some of Henrietta's family. For how many others will it also be too late? ...more

5

Jun 04, 2011

May 2012

Henrietta Lacks vs. Jesus: Final Exam
(With apologies to believers)

Directions
Please read the following excerpts, and answer the questions below:

From the Last Supper: While they were eating, Jesus took bread, and when he had given thanks, he broke it and gave it to his disciples, saying, "Take and eat; this is my body." Then he took a cup, and when he had given thanks, he gave it to them, saying, "Drink from it, all of you. This is my blood of the covenant, which is poured out for many May 2012

Henrietta Lacks vs. Jesus: Final Exam
(With apologies to believers)

Directions
Please read the following excerpts, and answer the questions below:

From the Last Supper: While they were eating, Jesus took bread, and when he had given thanks, he broke it and gave it to his disciples, saying, "Take and eat; this is my body." Then he took a cup, and when he had given thanks, he gave it to them, saying, "Drink from it, all of you. This is my blood of the covenant, which is poured out for many for the forgiveness of sins."
(Matthew 26:26-28, NIV Bible)

From The Immortal Life of Henrietta Lacks: There's no way of knowing how many of Henrietta's cells are alive today. One scientist estimates that if you could pile all HeLa cells ever grown on a scale, they'd weigh more than 50 million metric tons--an inconceivable number, given that an individual cell weighs almost nothing....Her cells were part of research into the genes that cause cancer and those that suppress it; they helped develop drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson's disease; and they've been used to study lactose digestion, sexually transmitted diseases, appendicitis, human longevity, mosquito mating, and the negative cellular effects of working in sewers....Like guinea pigs and mice, Henrietta's cells have become the standard laboratory workhorse.
(The Immortal Life of Henrietta Lacks, pp. 2-4)

Questions:
1) Assuming Jesus Christ was speaking literally, please calculate the total mass and volume of the Body of Christ consumed in the period between the Last Supper (c. 30-36 AD/CE) and the present day. Use only estimates for churches and denominations that preach Transubstantiation. Make sure to factor in such estimates as: average mass and volume of the Host and sacramental wine given per recipient, number of recipients per church, number of churches practicing Communion, number of ceremonies per year (approximate), and time elapsed since the Last Supper. Remember to SHOW YOUR WORK.


2) Compare the Body of Christ to the Body of Henrietta Lacks. Is the size of the first greater than, lesser than, or equal to, the second?


3) Compare growth rates and determine which is greater:
a) Your answer in Question #1 over the past 1,980 years (approximate), or
b) HeLa's growth since 1951


Essay question:
Does size really matter? If, in fact, the Body of Henrietta Lacks were larger than the Body of Christ, would that make her worthy of her own religion?


Bonus:
Pretend you are a prophet of this new religion. Explain the central tenants of HeLaism. Use your imagination, and have fun!
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4

Jan 07, 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 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

5

Jan 19, 2017

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 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 first.

Before long, her cells, dubbed HeLa cells, would be used for research around the world, contributing to major advances in everything from cancer treatments to vaccines; from aging to the life cycle of mosquitoes; nuclear bomb explosions to effect of gravity on human tissue during flights to outer space. An estimated 50 million metric tons of her cells were reproduced; thousands of careers have been build, and initiated more than 60 000 scientific studies until now, but Henrietta Lacks never gave permission for that research, nor had her family.

In The Immortal Life of Henrietta Lacks, Rebecca Skloot gracefully tells the story of the real woman and her descendants; the history of race-related medical research, including the role of eugenics; the struggles of the Lacks family with poverty, politics and racial issues; the phenomenal development of science based on the HeLa cells, in a language that can be understood by everyone. She combined the family's story with the changing ethics and laws around tissue collection, the irresponsible use of the family's medical information by journalists and researchers and the legislation preventing the family from benefiting from it all.

COMMENTS
I was gifted this book in December but never realized the impact it had internationally, neither would have on me. Until I finished reading it last night, I did not know it was an international bestseller, as well as read by so many of my GR friends! It was total surprise, since nonfiction is normally not a regular star on bestseller lists, right?

The debate around the moral issue, and the experiences of the poor family were very well presented in the book, which was truly well written and objective as far as possible.

For me personally, the question of how this woman, who basically saved millions of people's lives, were overlooked, is answered in the arrogance of scientists who deemed it unnecessary to respect the rights of people unable to fend for themselves.

The ethical and moral dilemmas it created in America, when the family became aware of their mother's contribution to science without anyone's knowledge or consent, just enabled the commercial enterprises who benefited massively from her cells, to move to other countries where human rights are just a faint star in a unlimited universe. The Lacks family drew a line in the sand of how far people must be exploited in America. Unfortunately the medical fraternity just moved their operations elsewhere.

Tissue and organ harvesting thrive in the world, it is globally a massive industry, with the poorest of the poor still the uninformed donors. An open secret. There are numerous stories, especially in India, where people wake up and realize they were operated on and one of their organs is missing. Stolen. By the time they became aware of it, the organ had already been transplanted in America and elsewhere in the world. That's no secret.

Everything is justified as long as science is involved.

Nowadays people in other parts of the world sell their organs, even though it is illegal in most countries. According to American laws people cannot sell their tissue, which is part of human organs? People can donate it though, then it is acceptable.Yet someone else can patent your cells, but you're not allowed to be compensated, since the minute it leaves your body, it is regarded as waste, disposed of, and therefor not deemed your 'property' anymore. Huh?

This book was a good and necessary read. The human interest side of it, telling the story of the family was eye-opening and excellent. A little bit of melodramatic, but how else would it become a bestseller, if ordinary readers like us could not relate to it. It was very well-written indeed.

Thanks to Rebecca Skloot, in 2010, sixty years later, HeLa now has a history, a face and an address. Finally, Henrietta Lacks, and not the anonymous HeLa, became a biological celebrity.

In 1951 Dr. Grey's lab assistant handled yet just another tissue sample of hundreds, when she received Henrietta's to prepare for research. She named it HeLa(first two letters of the patient's name and last name). But a few months later she visited the body of the deceased Henrietta Lacks in the mortuary to collect more samples. When she saw the woman's red-painted toenails, a lightbulb went on.Mary Kubicek: “Oh jeez, she’s a real person. . . . I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we’d been working with all this time and sending all over the world, they came from a live woman. I’d never thought of it that way.”John Hopkins hospital could have considered naming a wing of their research facilities after Henrietta Lack. Why don't they?

Nevertheless, this book should be read by everybody. Without it the world would have been a lot poorer and less human.

The world has a lot to answer for.

RECOMMENDED for sure!

EDIT
I googled the Lacks family and landed upon the website of the Lacks Foundation, which was started by Rebecca Skloot.
http://henriettalacksfoundation.org/

That news TOTALLY made my day. I wish them all the best and hope they will succeed in their goals and dreams. A wonderful initiative. Just imagine what can be accomplished if every single person, organization, research facility and medical company who benefitted for Henrietta Lacks's tissue cells, donate only $1 (one single dollar)? Yes, just imagine that!

So many positive things happened to the family after the book was published. It just brings tears of joy to my eyes.
http://www.lacksfamily.net/index.php

And finally:
May 29, 2010
A Historic Day: Henrietta Lacks’s Long Unmarked Grave Finally Gets a Headstone
thanks to Dr. Roland Pattillo at Morehouse School of Medicine, who donated a headstone after reading The Immortal Life of Henrietta Lacks.

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4

Dec 12, 2015

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

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 ten long years of investigative work by this author, this narrative explores the experimental, racial and ethical issues of HeLa (the cells that would not die), while intertwining the story of her children's lives and the utter shock of finding out about their mother's cells more than twenty years later.

"Physician Seeks Volunteers For Cancer Research." Yeah, right........So many parts of this book made me sick to my stomach.....like the uncaring treatment of animals and all the poor souls injected with cancer cells without their knowledge in the name of research and greed; and oh, dam Ethel for the inhumane and brutal abuse to Henrietta's children too. Unbelievable!

Whew! I must admit to being glad when I turned the last page on this one, but big time kudos to Rebecca Skloot for researching and telling Henrietta's story. She deserved so much better.

...more

5

Oct 07, 2016

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 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

5

Aug 17, 2011

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 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 social justice, bioethics, the history of science, and mysteries, and you’ve got me primed for some outsized adoration of Rebecca Skloot’s The Immortal Life of Henrietta Lacks, because its three main narratives are:

1) The history of tissue culture, particularly the contribution of the “immortal,” fabulously prolific HeLa cells that revolutionized medical research.

2) The life, disease and death of Henrietta Lacks, the woman whose cervical cancer cells gave rise to the HeLa cell line.

3) The story of Henrietta Lacks’s impoverished family, particularly her daughter Deborah, belatedly discovering and coping with their mother’s cellular legacy.

Intertwined with all three is the concept of informed consent in scientific research, and who owns those bits of us and our genetic information that are floating around the research world. See? That perfect scientific/bioethical/historical mystery doesn’t come along every day. My expectations for this one were absolutely sky-high.

And Rebecca Skloot hit it higher than that pile of 89 zillion HeLa cells.

Thing is, my particular background can make reading about science kind of painfully bifurcated. I mean first, you’ve got your books that are all, “Yay! Science is totally objective and awesome and will solve all of our problems, so just shut up and trust it already!!” But then you’ve definitely also got your, “Science is just one (over-privileged and socially influenced) way of knowing among many / Medicine is patriarchal and wicked and economically motivated and pretty much out to get you, so avoid it at all costs” books too.

Yes, Skloot could have written the story of a poor, black, female victim of evil white scientists. But she didn’t do that. Given her interests, it’s conceivable she could have written the triumphant history of tissue culture, and the amazing medical breakthroughs made possible by HeLa cells, and thank you for playing, poorblackwomanwhomnobodyknows. But she didn’t do that either.

Instead, she spent ten years researching and writing a balanced, multifaceted book about the humans doing the science, the human whose cells made the science possible, and the humans profoundly affected by the actions of both. Her book is a complex tangle of race, class, gender and medicine. Of reason and faith. Of knowledge and ethics. Of the chasm between the beneficiaries of medical innovation and those without healthcare in the good old US of A.

And Skloot doesn’t have the answers. We don’t get to tut-tut at how much things sucked in the past, while patting ourselves on the back for living in the enlightened present. This is vital and messy stuff, here. The problems haven’t been fixed. Who owns our pieces is an issue that is very much alive, and, with the current onslaught of new genetic information, becoming livelier by the minute. Which is why I would feel comfortable recommending this book to anyone involved in human-subjects research in any capacity...so a boatload of us, really, whether we know it or not.

But, buyer beware: to tackle all this three-pronged complexity, Skloot uses a decidedly non-linear structure, one with a high narrative leaps:book length ratio. The three main narratives unfold together and inform each other: we meet Deborah Lacks, while learning about the fate of her mother, while learning about what HeLa cells can do, while learning about tissue culture innovators, while learning about the fate of Deborah Lacks. And Skloot saves the nuts and bolts of informed consent and the ownership of biological materials for a densely packed Afterward. Me, I found this to be a powerful structure and ate it all up with a spoon, but I can see how it could be a bit frustrating.

You should also know that Skloot is in the book. According to Skloot herself, she fought against this for years. But you know what? I think she needs to be there. This is a book about adding the human complexity back into an illusion of objective scientific truth. When the author has become a character in the lives of her subjects, influencing events in their lives, it works to have the author be a textual presence disrupting the illusion of the objective journalistic truth. She only appears when it’s relevant to her subjects’ story; you don’t hear anything about her story that doesn’t pertain to theirs. And having been in that narrative nonfiction book group for two years, Skloot’s stands out as an elegant and thoughtful approach to the author/subject connection (self-reported femme-fatale author of The Angel of Grozny: Orphans of a Forgotten War, I’m looking at you so hard right now.)

This book pairs well with: The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures, another excellent, non-judgmental book about the intersection of science, medicine and culture. With The Mismeasure of Man, for more on the fallibility of the scientific process. It would also taste really good with a kick-ass book about the history of biomedical ethics in the United States, so if you know of one, I’d love to hear about it!
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4

Nov 13, 2010

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 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

4

Apr 27, 2010

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 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 few years ago, I read a few reviews and thought, "Yeah, that can wait."

Then I started a new library job, and the Lacks book was chosen as a Common Read for the campus. Guess who was volun-told to help lead upcoming book discussions? (Hint: it was me.)

So, with a deep sigh, I started reading. And then, oh happy day, my fears turned out to be unfounded because I ended up really liking the story. Rebecca Skloot wrote that she first heard about Henrietta Lacks and her immortal cells in a community college biology class. Lacks was a black woman who died in 1951 from cervical cancer. Before she died, a surgeon at Johns Hopkins Hospital took samples of her tumor and put them in a petri dish. A key part of this story is that Henrietta did not know her tissue had been taken, and doctors did not tell her family.


Scientists had been trying to keep human cells alive in culture for decades, but they all eventually died. Henrietta's were different: they reproduced an entire generation every twenty-four hours, and they never stopped. They became the first immortal cells ever grown in a laboratory.


Henrietta's cells, nicknamed HeLa, were given to scientists and researchers around the world, and they helped develop drugs for treating herpes, leukemia, influenza, hemophilia, Parkinson's disease, and they helped with innumerable other medical studies over the decades. At first, the cells were given for free, but some companies were set up to sell vials of HeLa, which became a lucrative enterprise.


The reason Henrietta's cells were so precious was because they allowed scientists to perform experiments that would have been impossible with a living human. They cut HeLa cells apart and exposed them to endless toxins, radiation, and infections. They bombarded them with drugs, hoping to find one that would kill malignant cells without destroying normal ones. They studied immune suppression and cancer growth by injecting HeLa cells into immune-compromise rats, which developed malignant tumors much like Henrietta's. If the cells died in the process, it didn't matter -- scientists could just go back to their eternally growing HeLa stock and start over again.


Unfortunately, the Lacks family did not know about any of this until several decades after Henrietta had died, and some relatives became very upset and felt betrayed by the doctors at Hopkins. A few threatened to sue the hospital, but never did.

There is a lot of biology and medical discussion in this book, but Skloot also tried to learn more about Henrietta's life, and she was able to interview Lacks' relatives and children. Additionally, there is some good discussion on the ethics of taking tissue samples from patients without their consent, and on the problem of racism in health care.


"I always have thought it was strange, if our mother cells done so much for medicine, how come her family can't afford to see no doctors? Don't make no sense. People got rich off my mother without us even known about them takin her cells now we don't get a dime. I used to get so mad about that to where it made me sick and I had to take pills. But I don't got it in me no more to fight. I just want to know who my mother was." -- Deborath Lacks, who was very young when her mother died


My favorite parts of the book were the stories about Henrietta and the Lacks family, and the discussions on race and ethics in health care.


There's no indication that Henrietta questioned [her doctor]; like most patients in the 1950s, she deferred to anything her doctors said. This was a time when 'benevolent deception' was a common practice -- doctors often withheld even the most fundamental information from their patients, sometimes not giving them any diagnosis at all. They believed it was best not to confuse or upset patients with frightening terms they might not understand, like cancer. Doctors knew best, and most patients didn't question that. Especially black patients in public wards. This was 1951 in Baltimore, segregation was law, and it was understood that black people didn't question white people's professional judgment. Many black patients were just glad to be getting treatment, since discrimination in hospitals was widespread.


Skloot worked on the book for more than a decade, paying for research trips with student loans and credit card debt. I would highly recommend the book to anyone interested in medical ethics, biology, or just some good investigative reporting.

Favorite Quote
"Like I'm always telling my brothers, if you gonna go into history, you can't do it with a hate attitude. You got to remember, times was different." -- Deborah Lacks ...more

5

Jan 06, 2017

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 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 by institutions for other ends, whether admirably or not, and how unjust and unfair it was to Henrietta to have her cancer cells taken without her permission. She died at age 31 from the cancer, yet the gene treatment her cells produced is tremendously useful in the medical field and will be for a long time to come, hence her "immortal" status, yet it gives little comfort to the reader. Ironically, her own family now suffers from a lack of access to healthcare.

Kudos to author Skloot who started a the Henrietta Lacks Foundation to help families like the Lacks with healthcare and other financial needs, including more victims of similar experiences, including those of the infamous Tuskeegee experiment with treating only some Black soldiers with syphilis. You can check it out at http://henriettalacksfoundation.org/ ...more

5

Dec 27, 2010

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 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

4

Dec 14, 2016

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 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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4

Feb 26, 2017

You know all those forms you have to fill out while waiting at the doctor and dentist office? The tedious, repetitious ones that you could have sworn you already completed at least a thousand times? Next time you sigh loudly or roll your eyes at the prospect of this task, think about the people who came before us who were never offered the luxury of informed consent, confidentiality, and protection from discrimination. Horrendous injustices prompted these forms into action so that history does You know all those forms you have to fill out while waiting at the doctor and dentist office? The tedious, repetitious ones that you could have sworn you already completed at least a thousand times? Next time you sigh loudly or roll your eyes at the prospect of this task, think about the people who came before us who were never offered the luxury of informed consent, confidentiality, and protection from discrimination. Horrendous injustices prompted these forms into action so that history does not repeat itself. It's a sad thought.

The Immortal Life of Henrietta Lacks offers historical insight into human rights issues within the medical field. Primarily though, it focuses on the woman behind the most famous and widely researched human cells in the world: Henrietta Lacks. Her name has only recently become known to the world which is quite sad, but thanks to her family's perseverance and Rebecca Skloot's heavy research and publication, the world now knows who to credit with most medical advances to date. It has been reported that Ms. Lacks had no knowledge of her contribution, as she was unaware that tissues were saved after multiple cancer biopsies/treatments, and therefore, she gave no permission for her cells to be used in any way, shape, or form, but Ms. Skloot reminds us that even today, none of us have any say over what is done with our cells and tissues once removed from our bodies.

I appreciated Ms. Skloot's attention to Ms. Lacks' remaining family members and their immense struggles in spite of all the progress (and profits) made in the medical field. In my opinion though, she was a bit too forthcoming in regards to the family. Factors related to race, poverty, education, medical issues, disabilities, and access to healthcare are definitely warranted in a book like this to show the overall contrast between those benefiting from Ms. Lacks' contribution and the family that was left behind, along with the insensitivity and injustice of it all. However, criminal histories, superstitions, and mental illness had no place in this book in my opinion. I believe this was potentially harmful to the family's character, and some portions of the book painted the family in a money-hungry and incompetent light which was unnecessary even if that may have been Ms. Skloot's perception or experience. Regardless, the family's inclusion in this book did make all the difference and I thoroughly enjoyed my reading experience.

If you'd like to gain some insight into the history of medical/science research along with a look at human/civil rights issues throughout the decades, check out The Immortal Life of Henrietta Lacks!

My favorite quote:
"You don't mess with Henrietta — she'll sic HeLa on your ass!" ...more

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Aug 31, 2019

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. It was the 2011 winner of the National Academies Communication Award for best creative work that helps the public understanding of topics in science, engineering or medicine.
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 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. It was the 2011 winner of the National Academies Communication Award for best creative work that helps the public understanding of topics in science, engineering or medicine.
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 سال 2014 میلادی
عنوان: حیات جاودانه هنرییتا لکس؛ نویسنده: ربکا اسکلاوت (اسکلوت)؛ مترجم: حسین راسی؛ تهران: آرامش‏‫، 1390؛ در 426 ص؛ شابک: 9789649219165؛ موضوع: هنرییتا لکس 1920 - 1951 م. بیماران و سرطان - اخلاق پزشکی - کشت یاخته ها - آزمایش روی انسان - سده 21 م‬

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 بود، که در همان سرزمین اجداد برده ی خود، کار میکردند، اما سلولهایش - که بدون آگاهی ایشان گرفته شده - به یکی از مهمترین ابزارهای پزشکی تبدیل شد. نخستین سلولهای «جاودانه»ی انسانی که، رشد یافته اند، و امروز هنوز هم زنده هستند، اگرچه ایشان در سال 1951 میلادی درگذشته اند. اگر یتوانیم همه ی سلولهای «هلا» را که تکثیر شده اند، وزن کنیم، شاید وزن آنها به بیش از پنجاه میلیون تن برسد. 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 است. و توسط میلیاردها انسان خریداری و فروخته شده اند. با این حال «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 شیوه‌های نوین پزشکی هم پرداخته، و نکاتی خواندنی را پیش روی خوانشگر میگذارد. «حیات جاودانه هنرییتا لکس»: صحبت‌ها، یادمانهای نزدیکان «لکس»، و نگاهی به اسناد قانونی، و پرونده‌های پزشکی ایشان نیز هست. نگارنده، در این نوشتار علاوه بر نگارش تاریخچة زندگی «هنریتیا لکس» به معرفی «سلول‌های هیلا» و پاسخ‌گویی به پرسش‌‌هایی درباره ی دانش پزشکی، اخلاق، نژاد، و طبقه‌ بندی اجتماعی نیز، پرداخته است. ا. شربیانی ...more