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 thanmillion 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 s to stark white laboratories with freezers full of HeLa cells from Henrietta s small, dying hometown of Clover, Virginia a land of wooden slave quarters, faith healings, and voodoo to East 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 questions Had scientists cloned her mother Did it hurt her when researchers infected her cells with viruses and shot them into space What happened to her sister, Elsie, who died in a mental institution at the age of fifteen And if her mother was so important to medicine, why couldn t her children afford health insurance Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences 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.Further, 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 withsadness 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 oftragedy The doorbell rang the other day and when I answered it, there was a very slick guy in a nice suit standing there and a limousine parked at the curb He started shaking my hand and wormed his way into the house Mr Kemper, I m John Doe with Dee Bag Industries Incorporated I need you to sign some paperwork and take a ride with me Don t worry, I ll have you home in a day or two, he said Then he pulled a document out of his briefcase, set it on the coffee table and pushed a pen in my hand Wai 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 togains 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 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 60,000 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 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 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 donateShe s a hard nosed scientist, with an excellent job and income and to her the Lacks are nothan 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 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 insuranceI 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 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 insuranceI 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 mof 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,shocking, andwondrous 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, becomingthan 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.Blog Facebook Twitter Instagram Youtube Store