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Her name was Henrietta Lacks but scientists know her as HeLa She was a poor Southern tobacco farmer who worked the same land as her slave ancestors yet her cells—taken without her knowledge—became one of the most important tools in medicine The first “immortal” human cells grown in culture they are still alive today though she has been dead for than sixty years If you could pile all HeLa cells ever grown onto a scale they’d weigh 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 billionsYet Henrietta Lacks remains virtually unknown buried in an unmarked graveNow Rebecca Skloot takes us on an extraordinary journey from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells; from Henrietta’s small dying hometown of Clover Virginia — a land of wooden slave uarters faith healings and voodoo — to East Balti today where her children and grandchildren live and struggle with the legacy of her cellsHenrietta’s family did not learn of her “immortality” until than twenty years after her death when scientists investigating HeLa began using her husband and children in research without informed consent And though the cells had launched a multimillion dollar industry that sells human biological materials her family never saw any of the profits As Rebecca Skloot so brilliantly shows the story of the Lacks family — past and present — is inextricably connected to the dark history of experimentation on African Americans the birth of bioethics and the legal battles over whether we control the stuff we are made ofOver the decade it took to uncover this story Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah who was devastated to learn about her mother’s cells She was consumed with uestions Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister Elsie who died in a mental institution at the age of fifteen? And if her mother was so important to medicine why couldn’t her children afford health insurance?Intimate in feeling astonishing in scope and impossible to put down The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery as well as its human conseuences


10 thoughts on “The Immortal Life of Henrietta Lacks

  1. says:

    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 saidThere 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 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 saidObviously 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 uniue 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 itHenrietta 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 Balti 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 60000 medical research papersUnfortunately 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 fromRebecca 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


  2. says:

    This is an all gold five star readIt'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 forwardI 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 uicksand of never having enough spare cash to finance an education is cruel uncompassionate and hardly looking to the futureHeLa 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 She's a hard nosed scientist with an excellent job and income and to her the Lacks are no 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 uite 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


  3. says:

    “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 of a humanitiessocial sciences kinda girlBut 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 raceI 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 shocking and wondrous than anything you could imagineMaybe 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 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 emergesNot 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 campsI 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 itBlog | Facebook | Twitter | Instagram | Youtube | Store


  4. says:

    This was a really good book that leaves one with uestions than it answers especially at this moment with the explosion in investment and growth in healthbiotech A lot of those uestions are ones I wouldn't know how to answer myself either I think it's really important though that we all start grappling with and instituting better processes around things like informed consent Also really horrible to think about this in larger societal terms in the context of institutional racism and the ways in which the Lacks family still is so socioeconomically disadvantaged while private biotechnology companies sell their mother's cells for so much money I just feel so extremely uncomfortable with that I think I wouldn't care so much if the cells were just part of the commons available for free or extremely cheaply but to know people are profiting off of it it really is uite disgusting I try not to bring my politics to bear here uite too often but this really really makes me feel strongly that commercialization of things in biological research especially people's biological matter and tissue shouldn't be happening This whole situation just feels uite perverse honestly and the book left me feeling disheartened The dual dehumanization of the Lacks family through science and commercialization is horrifying And I think if we wants things to be better moving forward both need to be addressed not just one


  5. says:

    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 ualities that made them uniuely 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 uniue cells Rebecca Skloot from Powell'sRebecca 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 FilmSkloot 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 purposesThe 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 timeThe HBO Film airs on April 22 2017EXTRA STUFF8813 NY Times article A Family Consents to a Medical Gift 62 Years Later32917 Washington Post On the eve of an Oprah movie about Henrietta Lacks an ugly feud consumes the family by Steve Hendrix


  6. says:

    Fascinating and Thought Provoking Strengths Fantastically interesting subjectOne 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 uestions This book makes you ponder ethical uestions historically raised by the unfolding seuence of events and still rippling currently Ex 1 Informed consent Henrietta did not provide informed consent not reuired in those days Ex 2 Genetic rightsnon 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 materialBiographical 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 uestions 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 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 birthplaceLack of Clarity By mid point through the book I was wishing the biographical approach was 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' shelfbut has whetted my appetite for further exploration of this important woman fascinating topic and intriguing ethical uestionsI was left wanting detail surrounding the science involved coverage of past and present ethical implications a refined biography of Henrietta and a focused look at the impact and implications of the HeLa cell strain line on Henrietta's descendants


  7. says:

    This is such an important story HeLa cells were a miracle to humanity and all thanks to Hernietta Lacks and the doctorIt is a must read


  8. says:

    45 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 peoplecompanies 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 Rebecca Skloot does a wonderful job of presenting the moral and legal uestions 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 mostIn 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


  9. says:

    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 etcFinally 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


  10. says:

    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 agoFurther 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 beforeThe sadness of this story is really about the devastation of a family when its unifying force a strong mother is removed Piled on with 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 tragedy