Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer, yet her cells--taken without her knowledge--became one of the most important tools in medicine. The first "immortal" human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer and viruses; helped lead to in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks is buried in an unmarked grave. Her family did not learn of her "immortality" until more than twenty years after her death, when scientists began using her husband and children in research without informed consent. The story of the Lacks family is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.
In early 1951, Henrietta went to the gynecology clinic at Johns Hopkins Hospital after feeling a "knot" in her womb. After she was taken to a "Colored" examination room, the gynecologist on duty found a firm mass on her cervix that seemed cancerous, but was unlike anything he had ever seen. He sent a slice of the mass for analysis, and Henrietta was soon diagnosed with cervical cancer.
Henrietta returned to Johns Hopkins a few weeks later, where she underwent treatment for cervical cancer. She was given a generalized consent form that gave permission for her doctors to perform any operative procedures necessary to treat her illness. However, she was not told that one of the staff gynecologists was collecting specimens of clinic patients with cervical cancer for a clinical study, and biopsies of healthy and cancerous cervical tissues were taken from her during her initial procedure. The cancerous cells, which were named HeLa after the first two letters of Henrietta's first and last names, proved to be the first human cells that could be grown indefinitely in a nutrient broth, and the Johns Hopkins researchers were overjoyed at this long awaited success.
The treatment she received at Hopkins was state of the art, but was unsuccessful, due to the aggressive nature of her primary tumor, and she succumbed to her illness several months later. The researchers wanted to acquire more specimens from her tumor ridden body by performing an autopsy with biopsies. Her husband, after initially denying a request for an autopsy, was misled into agreeing to allow the Hopkins pathologists to perform a limited autopsy, after he was told that the doctors wanted to run tests that might help his children someday.
The HeLa cell line was provided to scientists and organizations worldwide for minimal cost, as neither the researchers nor Johns Hopkins profited from the first immortal human cell line. However, a number of companies made millions of dollars by mass producing HeLa and selling them at a much higher cost. HeLa was used in numerous important biomedical studies, including the development of the Salk polio vaccine at the University of Pittsburgh in the mid-1950s, cancer and viral research projects, and studies of the effects of weightlessness and space travel on the human body by NASA.
During this time Henrietta's husband and children were completely unaware that her cells had been harvested for medical research by the Hopkins doctors. By that time most of them were living in poverty in Baltimore, and were unable to afford basic health insurance. Articles about HeLa began to appear in medical journals and in the lay press, but it wasn't until 1973 that the family accidentally learned about the HeLa cell line. The family was contacted by Johns Hopkins, so that their cells could be analyzed and compared to those taken from Henrietta 22 years earlier. Once again they were misled into believing that the purpose of these tests was to determine if any of her children also had cancer, which caused Deborah, Henrietta's oldest surviving daughter, many years of anguish.
Once Henrietta's name was released in the media, the family was besieged by journalists and others wishing to profit from her story, causing her husband and children to become distrustful and wary.
Rebecca Skloot became interested in Henrietta Lacks after hearing about the HeLa cell line and its forgotten host as an undergraduate student. She spent many months and countless hours attempting to contact the Lacks family, and she slowly but painfully gained the trust of Deborah and her siblings, after she promised to tell the family's story alongside the history of HeLa.
The Immortal Life of Henrietta Lacks is a fantastic achievement, given the hurdles that Skloot had to overcome to obtain information from the Lacks family, Johns Hopkins, and the other key actors in this story. In addition to an in-depth history of this ordinary yet quite remarkable family, she provides just the right amount of information about HeLa and what it meant for biomedical research, along with information about informed consent from the 1950s to the present, the effect of race on medical care in the United States and the views of African-Americans toward medical experimentation, and the biology of cancer. The book is meant for a lay audience, but it would be of interest to those with a formal medical background. I found the book to be a bit overly sentimental and personal at times, but this is a very minor criticism of a fabulous book that I would like everyone to read.
What I Liked: First, the book was a quick read that I was always happy to pick up. I didn’t know anything about HeLa cells, so that was interesting. And though I think she bungled the bioethics angle of this story, it’s good that she raised the questions “Is it illegal for doctors to take our cells without our knowledge?,” “don’t they have to tell you?,” and, “if they make a ton of money, don’t they have to share it with you?”No easy answers, but a conversation that needs to take place. Anyway . . .
The best part about the book was the short story of Henrietta Lacks’s shockingly sad life. The descendent of slaves, Her life from birth to dying at age 31 from an aggressive cervical cancer is as sad as any story I’ve ever read. Truly heartbreaking. Her story is a snapshot of the cultural and social life for African-Americans living in dire poverty and dysfunction in mid-twentieth century Virginia. If these two topics—the cells, and Henrietta Lack’s life—had been the book, I would agree with all the 5 star ratings. It would have made a fabulous feature-length magazine article, and that’s what it should have been.
What I Didn’t Like: The most interesting thing I learned at university was how books can be “slippery,” especially when the author isn’t aware of the undercurrents that he or she has submerged in the text. From the first paragraph, I detected a troubling overtone. The story she tries to tell here is worthwhile; my problem is in how she tells the story. First, there is way too much about Rebecca Skloot in this book, which is why I described it as her memoir, rather than the story of the woman named in the title. Henrietta Lacks dies in the first third of the book, and I was left wondering what the rest of the book would be about. It then bogs down with all the incidents of Skloot trying to get Lacks’s descendents to cooperate with her. In her portrayal of them she highlights the family’s dysfunction, lack of education, and luridness, and thus denies them dignity and respect. This may sound like a strange comment for those who know that Lacks’s sons were criminals—drug dealers and a murderer—but she should have mentioned it briefly as a matter of fact and not have sensationalized it--it's not the story. Worse is her focus on Deboarh, Lacks’s daughter who was too young to remember her mother. Skloot plays off Deborah’s manic irrationality to show herself as the level-headed voice of reason in this world she’s created of crazy black people. She presents all the African-Americans as colourful caricatures for the entertainment of the reader.
Skloot also tries to create tension in her book by attempting to make the family victims of the medical establishment. Yes, it’s sad and ironic that the HeLa cells have done so much to advance medical science while the family suffers without medical insurance. But one did not cause the other, and this does not turn the Lacks descendents into victims.
Finally, throughout the book, the Lacks family makes it clear that they do not want to be exploited. Yet, it appears to me that’s exactly what Skloot has done. I could say a lot more, but I will stop here.
I encourage you to read more at:
An Open Letter to Those Colleges and Universities that have Assigned Rebecca Skloot’s The Immortal Life of Henrietta Lacks as the Common Freshmen Reading for the Class of 2016
Rating: There are 640 five star reviews at LT, and this book made countless “best of the year” lists, so who am I to criticize it? I’ve read many glowing reviews, and I can see why people really like this book. Obviously, most readers do not have the problems with it that I do. But from the beginning, Skloot rubbed me the wrong way, and a few days after finishing it, my overall impressions are strongly negative. There was enough good stuff In it though that I will balance out the bad and give it three stars.
Henrietta Lacks was a black woman, who grew up poor, working her family’s sharecropping tobacco fields in the rural south during the depression. In 1950, as a young, married mother, who had fled north to prosperity in Baltimore, she contracted an aggressive form of cervical cancer and was treated by the doctors at Johns Hopkins Hospital, whose original ministry was to care for the poor blacks who lived in the neighborhoods surrounding the hospital. During her treatment, and before and after her death, cancerous tissue was removed from her cervix, without her knowledge or permission:
“A surgeon took samples of her tumor and put them in a Petri dish. 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 human cells ever grown in a laboratory. (Page 4)
The book then goes on to tell how Henrietta’s cell line, named HeLa, taking the first two letters of her first and last names, was used in the research and development of treatments for polio, cancer, AIDS and other diseases, an invaluable contribution to mankind. If that was everything the book entailed, it would have been an interesting and highly significant entry in the world of scientific literature. But Sloot did not stop there. She dove into the personal lives of Henrietta and her family, into the multibillion dollar world of cell retailing, and into the racism, ethics and questionable medical practices surrounding medical research, making this book compulsively readable. She shows the progression of patient confidentiality laws from the early 50’s to the present very strict HIPAA laws.
It’s this human interest story that draws you in and makes the book so memorable. It turns out that Henrietta’s cells were very valuable, yet after her death, her family was so poor they couldn’t even afford the health care so enhanced by their wife and mother’s contribution to science. Sloot is so adroit at weaving the stories together and painting a portrait of science, medicine, and life that is endearing and frightening at the same time. Very highly recommended.
Author Rebecca Skloot first learned about Henrietta's cells, known as HeLa, in a high school biology class, and thus began more than a decade of research to learn everything she could about the woman whose cells still exist today in laboratories all around the world. Skloot explains the process of cell division and cell culture, how the cells were used in research, and some of the accomplishments enabled by HeLa cells. This was all fascinating material in its own right.
But even more interesting is the human story behind the science. Henrietta was a poor African-American woman who grew up in Virginia and moved to Baltimore when her husband found employment in the steel industry. She had several children, including a daughter who was institutionalized and died young, several sons, and another daughter, Deborah, who was about 50 when Skloot began working on her book. Deborah and her brothers had learned about the cells several years earlier, and were outraged. How could scientists make so much money off their mother's cells, when Henrietta's children could not even afford their own healthcare? And what business did (mostly white) journalists have, poking around in their family's affairs?
Slowly and with incredible patience, Skloot gained a bit of Deborah's trust and pieced together Henrietta's story. And, it seemed, she also helped the family better understand what happened to their mother, and work through some of their anger and grief. When Henrietta died, doctors were perceived as infallible, not to be questioned. And a black patient would never have considered questioning a white doctor, or even seeking clarification. The family was left to draw their own conclusions. Their emotions were fueled by a basic lack of knowledge: of the facts behind their mother's condition and treatment, and of the basic scientific concepts.
There were some incredibly moving moments in this story. Deborah's younger brother had led a life of violence and crime, catalyzed by losing his mother at a young age. But he achieved a degree of inner peace, thanks to the kindness of a young researcher who showed him his mother's cells for the first time. And Deborah's story -- wow. She was a rock, and yet so fragile. Her pain brought tears to my eyes many times.
This was an absolutely fascinating book, raising challenging and controversial ethical issues while telling a very real story of love and family.
I appreciate the care the author took to include in her book the impact Henrietta’s death had on the extended Lacks family. Doing so was key to illustrating first how the death of a mother of five young children had on the lives of her husband, siblings, cousins and friends, and secondly, how learning more about what had been hidden from them drove the demons feeding each of their personalities. Looking at their lives, it is easy to see how their economic status, race, and level of education contributed to their view of how the family had been treated. What is frightening is that almost nothing has been done that would change these circumstances since Henrietta cancerous cervical cells were harvested in 1951.
I hope this book gains the recognition it deserves. The author, Rebecca Skloot, has put in order this astonishing record of events and narrated it with a sensitivity and humanity that extends beyond the goals of a normal science writer. You will find the book impossible to put down, and thought-provoking after finished.
Rebecca Skloot is a journalist and her pitch for this story is "whose side are you on". Is it the side of the downtrodden black American family kept in ignorance of their ancestors contribution to medical science and whose subsequent notoriety has served to damage them even further. Or is it the side of the medical profession who ride roughshod over peoples feelings in the interests of medical science. Behind these two positions the spectre of the filthy lucre looms ominously large. If you think that this is over the top then you have not read Skloots non fiction work that so skillfully plays with the emotions.
Henrietta Lacks was a poor black woman who had an aggressive cancer of the cervix. She was treated unsuccessfully at the renowned John Hopkins hospitals and during her treatment some body tissue were removed. After her death an autopsy was performed with the consent of her husband. George Gey head of tissue culture at the hospital became very excited when he was able to keep cells belonging to Henrietta alive and was amazed to see how easily they multiplied. He labelled the cells HeLa and gave them away to other scientists to assist in medical research. They were used successfully to test the first vaccine for polio a disease that was at the time to reaching epidemic proportions. HeLa cells have been at the forefront of medical research ever since; by 2009 over 60,000 scientific articles using them have been published.
Henrietta Lacks died in 1951, but it was only in 1973 that the Lacks family heard that their mothers cells were still alive and had played a crucial role in the advancement of medical science. They were angry and outraged that they had not been told and when they tried to find out more information they found this impossible to obtain. Medical professionals could not understand why they needed to know and any answers that were given to them were not understood because of the families lack of medical knowledge. later in 1973 the family were asked to donate blood after it was suspected that HeLa cells were responsible for a contamination problem. They complied but were still none the wiser as to why the samples were needed. They thought they were being tested for cancer. The family became angry and resentful.
Skloot masterfully tells her story jumping within a time line that runs from the 1920's to 1999. In this way she expertly weaves the following threads:
1) Henrietta's background 1920-42
2) Henrietta's diagnoses and treatment in 1951
3) The story of the HeLa cells 1951-1974
4) Skloots investigation starting in 1999
At the start of each chapter the date from the time line is shown and so there is no danger of the reader getting lost or confused. Skloots narrative skills are superb, the reader is effortlessly informed of the medical and ethical issues. The rural background and then the booming urban background of Turner's Station are vividly portrayed. The deprivation and tensions within the Lack's family are laid before us with no punches being pulled and the scientific and medical staff at the hospital are shown to not only have been working well within the laws of the time but also to have been genuinely motivated by altruism in getting the cells distributed for the benefit of mankind.
The central concern of the book however is Skloots investigation and intervention in the affairs of the family and this takes up the whole of the third section. This is a dysfunctional family where rape, murder, incest, drugs and violence feature in their recent history. When they discover that Henrietta's cells are alive and being used in research they believe that they should benefit, they believe they have been wronged. They enjoy their 15 minuted of fame when a documentary is made featuring Henrietta, but they want more, they see the cells as their meal ticket. Skloot bravely faces down the families hostilities, she wins the confidence of Deborah: Henrietta's daughter and together they undertake a search for more information on the life and death of Henrietta. Skloot of course is collecting information for her book and her intrepid story is told with all the bravura of a woman fighting the powers that be to get at the truth. She plays the human interest card relentlessly in this section with all the families woes seeming to be the result of their search for some kind of redemption, that will be resolved when they find the answers to Henrietta's death and a supposed cover up of the financial gain that is being made by the scientists and drug firms. The family are portrayed as victims.
Rebecca Skloot knows the ingredients for selling books. She finds a good story invests it with a mass of human interest adds a hint of conspiracy theory and make herself out as the knight in shinning armour. She is extremely subtle because you barely realise what is happening as you are carried along with some fine writing, meticulously researched, and early on some even handed treatment of the material. She has made an issue of peoples rights to their cells/tissues (once they are separated from the body) that to my mind can only complicate what is already a difficult question and for this reader of no importance at all.
Either Rebecca Skloot has done an outstanding job in producing a book of non-fiction that is an expose of important medical and social issues that are relevant to everybody alive today or she has manipulated and distorted her story in order to shift a boat-load of books. As usual the answer probably lies somewhere in between. Such a well written book, but I objected to the subtle manipulation.
Henrietta Lacks was a young, poor black woman who died of a particularly virulent form of cervical cancer in 1951. A sample of the cancerous cells taken from her before her death were the first human cells to be successfully cultivated for any length of time. Because of their rapid growth and hardiness billions upon billions of the HeLa cells, as they are known, are still in use today in research labs around the world. Amongst many other applications they have been used to develop vaccines for polio, to develop treatments for AIDS, to investigate the effect of radiation and to test new cancer drugs. But Henrietta Lacks's children remained impoverished, unable to afford health care for themselves or their families, with no idea of the importance of their mother's cells to the scientific community until details started to appear in the press many years after her death. And even then the cursory explanations that they were given, combined with their own lack of understanding of scientific matters, meant that they were plagued by fears that their mother was in some sense still alive and being experimented on. The privacy of the Lacks was invaded with details of their mother's genome being published in a form that could clearly be traced back to her children, and they suffered frequent harassment from reporters and others jumping on the bandwagon of Henrietta's memory. In this book Rebecca Skloot tells both stories, that of Henrietta and the journey that her cells took after her death, and that of her family after her death, but above all the book focuses much more than I would have liked on Skloot's own obsession to discover the truth about Henrietta Lacks and the HeLa cells.
Much of the book focuses on the idea that the Lacks family, and Henrietta in particular, had been exploited and manipulated by the medical authorities and researchers: the implication is that they would have been treated very differently had they not been poor and black. However, I came away from the book feeling that far from Henrietta having been exploited, virtually the only aspect of their lives in which the Lacks had not been let down by society at large was that of their mother's medical care. She seems to have received prompt and free medical care, and was given the standard treatment for sufferers of cervical cancer at that time whether white or black. But in most other aspects of their lives Henrietta's family's experience of poverty, ill-health, lack of education and lower life expectancy does seem at least in part a consequence of their colour trapped as they seemed to be until recently in a cycle of poverty which could be traced back to discrimination in the segregated South, and then the Baltimore of the 1940's where they did the dangerous and unhealthy jobs that others would not do, An example of this can be seen in the hearing problems suffered by the Lacks children, which were not identified or treated when they were children and which contributed to their failure in school, and later problems: this is rather dismissively attributed by Skloot to their parents being first cousins. But it seems to me that surely this failure of the medical and school systems to even identify and then treat a hearing problem would have been a far bigger failure of people in authority than anything ever done by medical researchers in relation to their mother's cells. Much is made in the book of the fact that despite Henrietta Lacks's cells having been used latterly to develop profitable drug treatments, her own family were not able to afford health care. This seems a valid argument, but what about the woman whose cells were sampled immediately before Henrietta's cells were taken, and the one whose cells were sampled next? Don't their children deserve proper health care too? After all it was only a chance accident that Henrietta's cells were tested at the time when many other elements came together to ensure that it was her cells that became the standard research tools.
I also had issues with the role of Rebecca Skloot's in the Henrietta Lacks story. While critical of journalists and others who had harassed the Lacks family, it seemed to me that her behaviour was little different. If someone phoned me up every few days for a year to leave messages on my answerphone when I had specifically asked them to leave me alone, as Skloot did to Henrietta's vulnerable daughter Deborah, I certainly know what I would call it.
So while the book raised some important and interesting issues on the medical side about ethics and privacy and ownership of biological material, and on the social history side about the racial discrimination experienced by black people in their dealings with the medical authorities, for me it was an opportunity missed to write something much better.
As I sat beside my husband's hospital bed today holding the finished book to my heart I wanted nothing more than to wrap my arms around the Lacks family and say "Thank you."
Rebecca Skloot set out to put a name and a face to the cell line that has had such a big impact on medical research and she does it readably, thoughtfully and with great humanity (I'll admit I had tears in my eyes for much of the latter part of the book). Yes this is the story of the origin of the HeLa cell line and of the birth of sterile cell culture, but more importantly, it is the story of Henrietta Lacks, the lady from whom these incredibly aggressive cancer cells came and of her family - who for years didn't even know of the cells existence or why they were so important. In particular, she focuses on Henrietta's daughter Deborah an unusual but truly remarkable lady who just wanted to understand and to know more about a mother she barely remembered.
The story of Henrietta Lacks, her family and her cells raises many moral issues, none with clear cut answers - medical practice has changed hugely since the cells were first harvested - and Skloot deals with these well, avoiding judgement (most of the time - there are occasions on which it is clear where her feelings lie), trying to give both sides of the story.
- The story of Henrietta's life and that of her family
- The author's investigative journalism
- The medical history of HeLa's final illness and the use of her cells
- The issue of biomedical ethics as related to human tissues
She doesn't always succeed, and her focus is much more on the melodramatic rather than the scientific or medical. I was expecting more information, less soap opera and would have preferred far less of the author's own story -- her dogged pursuit of this family in search of material for her book. Whether this was the author's intent or nor, the family comes off badly, especially with the decision to recreate the family's "dialect" in the large chunks of dialogue that make up a surprising amount of the book. The medical ethics discussion was largely limited to the Afterword.
What has it cost Lacks family? They were poor and uneducated in the early 20th century. They suffered emotional upheaval and real distress. The standards for privacy and consent were not yet in place when Henrietta contracted cervical cancer. As she is dying, her doctor secretly obtains live samples of her cancer cells which prove to be unique in their ability to stay alive and reproduce right up to the present time. These cells have made a few people wealthy and famous - but not the Lacks family who remain poor and unaware of what is happening for many years. It has taken generations for a positive impact to bubble up in this family.
Rebecca Skloot, a freelance writer of science and medicine, authors a clear and credible account of the journey to reconcile the Lacks family and the legacy of these special cells commonly used in research facilities worldwide. The cooperative effort of Skloot and the Lacks family is a fragile and emotional endeavor. An excellent look at some ethical issues still facing us today, this is recommended reading for everyone.
Before the rights of medical patients became "law" and the Medical Ethics committees were in place, many tissue samples were taken from patients without their consent. One of those patients was a young black woman who went to Johns Hopkins for medical care and was diagnosed with cervical cancer. By the way, it is reveled later in the book that even the diagnosis of the type of cancer was not accurate.
After her treatment she did not recover, and when she died, her husband gave permission for the clinic to do an autopsy. Neither he or any other members of her family were informed that a researcher had already cultured the cancer cells found in the biopsied tissue he had taken from on Mrs's Lacks' cervix and they were not only surviving in a culture medium but multiplied very rapidly and were very healthy.
This book took many years (I believe around ten) for the author to research and write. Rebecca Skloot deserves not only a commendation for excellence, but an literary award for this non-fiction book. (It dispels any myth surrounding the now very famous and widely used in medical research HeLa cells which have contributed to breakthrough findings in several areas of disease worldwide). In this way, it reminds me of [Columbine] by [[Dave Cullen]] which recently won the 2010 Edgar Award for Best Fact Crime.
This gripping book and the story it tells reveals the history of how many patients were "subjects" and especially focuses on African American patients. Many layered, scientifically sound, Lack's family centered, human, pulls no punches and really "tells it" straight. Ms. Skloot's compassion for family members combined with her steady persistence in discovering and revealing the truth to the family members and now "the world of readers" leads her to many experiences of calling on her innermost resources to maintain and nurture long-term friendships, try new behaviors and report the science in an accurate fashion simultaneously.
Very highly recommended.
I guess because it's 'true' I should have more patience for the characters in it, but ... they all seem so scattered. One minute they want to talk about Henrietta then in the next breath they do not, then they do again, then they cry racism...
I just got tired of the on-again, off-again story. That, and... well, I don't really see what the issue is regarding a deceased person's tissues. It's not like Henrietta needed her cancer cells when they took them, and those nasty white doctors did treat her to the best of their abilities at the time. So the cells reproduced and the family didn't get rich off them.... which is the crux of the story: the family didn't get to make any money from their dead mother's cells.
There really should be better things to stress about in life than that... like the fact that their mother is dead and/or that her cells might find a cure for [insert illness here] that might ultimately save them or their loved-ones down the road. Yeah, I'd say that's more important than the 50 bucks they'd have gotten if the doctors had "paid" for the cancer cells at the time of taking them - which, of course, wouldn't have been far off what they would have offered, and what the family might have accepted at that time, after all, it was just a cancer tumor, not the family jewels.
This has got to have been one of the most accessible non-fiction books that I have read. I do have a science background, though in plants, not animals, but many of our book group did not have any prior knowledge and they enjoyed it too (with the possible exception of the 'afterword', which goes into slightly more detail and mainly discusses ethics).
Henrietta Lacks would have died of cervical cancer, unnoticed by the world, if it hadn't been for the removal and subsequent culture of some of her cells. This strain became known as HeLa and formed the basis of extensive research into such diverse issues as drug testing, genetic theory, cures for disease and nuclear bomb testing.
Henrietta came from a poor, coloured, American family and although she died in 1951, her family had no idea about the consequences of her death for at least 20 years. Even then, their poor education meant they did not fully understand the significance of the information and they continued to struggle without any part of the financial rewards that were surely their right.
The author spent a lot of time with Deborah, Henrietta Lacks' daughter, not only hearing and recording her story but also enlightening her as to what had really happened and its significance. At the end of the book is a facinating section detailing the current legal position.
The book also provides a revealing comment on the mental health, ethnicity, and social history of USA since 1951
I am always curious about other people's lives and I enjoy reading biographies. This one had the added benefit of also being scientifically engrossing. There was an excellent balance between the science of cell propogation and the fascinating story of the family as they discovered their mother's contribution to science. I also liked the time lines at the start of each chapter, fixing us date-wise.
An excellent read and highly recommended.
I hope that Rebecca Skloot has a very long career and writes many more books of this type.
In this book, there were actually two stories at the same time but there is no problem keeping them straight partly because of Rebecca Skloot writing skills and also the stories intertwine. One story is about John Hopkins and other hospital's history of experimentation on patients, mostly poor and black, Henrietta Lacks being one of them. This story never really came out in the open until this book. The other one was about Henrietta's earlier life, the family that she grew up in and the family that she had.
Actually the cells taken from Henrietta Lacks without her knowing it had a life of their own in research against polio, cancer, aids and many other diseases. Her cells even went into outer space!
I can remember the polio scare of 1951 because at the age of six, I was disappointed that the public swimming pools were closed. They were closed because of the polio scare. Later, there was a girl my grade school class with braces on her legs because of polio. I wondered why her and why didn't I get it.
The story about Henrietta's family was just as engrossing. I admire the author's persistence in uncovering the facts and showing how taking the cells affected all of the family.
This is the best book that I have read this year so
I highly recommend it to anyone interested in medicine and ethics.
I began reading this book and found I was angry on every page. At first I was angry at the author, who I felt was stalking the family. Then I became angry at the circumstances that allowed all that unfolded. The problem faced by Henrietta and her family was not the care she received from Johns Hopkins. She received standard care in those days for cervical cancer. Her biggest problem was the circumstances in which she was raised. She and her family were victims of the post-slavery era who never had an opportunity to live in a decent place, get a decent education, and have decent health care. If she had had consistent medical care, she might have found the cancer sooner. I was angry at the segregation that still existed in the 50s, which made it difficult for the family to know if they were really being treated fairly. I was angry at the inability of doctors, journalists, friends, anyone! to explain to the family what Henrietta's cells actually were. The tragic loss of their mother that burdened her children for their entire lives. The way in which their blood was taken without their understanding for further studies. I was shocked (and frankly, surprised) at the treatment of Henrietta's daughter, Elsie, in the Hospital for the Negro Insane. The Nazi-like experiments, the brutality, so horrific, so tragic.
Why was it worth reading a book that made me so angry? First of all, the author did an superb job telling the story in a very objective manner that did not demonize everyone, but still brought to her book all the emotional pain and anxiety that the family suffered. She also was able to relate their story to the larger picture of the need for informed consent for clinical research that is very relevant today. Finally, I could see hope for Henrietta's family. Her grandchildren are beginning to establish decent lives for themselves and I am pleased that some of the proceeds from this book will be used for their education.
Instead, we must see in every person a universe with its own secrets,
with its own treasures, with its own sources of anguish,
and with some measure of triumph.
from The Nazi Doctors and the Nuremberg Code ”
From Rebecca Skloot: “When I tell people the story of Henrietta Lacks and her cells, the first question is usually Wasn't it illegal for doctors to take Henrietta's cells without her knowledge? Don't doctors have to tell you when they use your cells in research? The answer is no--not in 1951, and not in 2009, when this book went to press.”
In 1951, a young black woman named Henrietta Lacks became a cancer patient at the famous (and infamous) Johns Hopkins hospital.
During an initial biopsy of a tumor on her cervix, a sample of the cells was also sent to Dr. George Gey's lab. Dr. Gey had attempted to grow human cells in the laboratory from hundreds of other samples and been unsuccessful. But Ms. Lacks' cells proved different. They grew and thrived and became an important and ubiquitous scientific tool which ended up revolutionizing the distribution of the polio vaccine, cancer and genetic research and many other specialties in the microbiological research world.
In some ways, the story of HeLa cells in laboratories parallels the story of the explosion of the internet. No one could foresee how both would thrive and change the world.
Henrietta Lack's family had no idea that her cells were being used. The family was both frightened and shocked when they discovered this fact, some twenty years later. They imagined the worst, believing that Henrietta's cells were somehow sentient; scientific techniques such as cell cloning and hybridization terrified them. They also questioned how an industry could earn billions of dollars using her cells, and yet they themselves were so poor they couldn't afford doctors or insurance.
It's an interesting story of medical ethics.
Rebecca Skloot presents the case that Ms Lacks had no knowledge that her cells were being used. Indeed, Johns Hopkins issued a statement confirming that version. Yet, it is reported that Dr. George Gey said he had talked with Henrietta before her death, a fact that Skloot mentions and dismisses. And courts decided there was no evidence one way or the other if Henrietta had given consent since whatever consent papers Lacks may have signed were destroyed. Cells grown from a second biopsy didn't grow. Neither did cells recovered at Ms. Lacks autopsy which the family gave permission for.
Skloot brings in many other medical ethics cases involving racism and the de-humanizing of research subjects. She also recounts other cell ownership cases. By telling these instances in parallel to the HeLa story, one is left with the distinct impression that a wrong was committed against Ms. Lacks.
There are medical inconsistencies throughout the book which bother me. For instances of page 16 in Henrietta's presenting notes: “Two months prior to current visit, after delivery of fifty child, patient had significant blood in urine. Tests showed areas of increased cellular activity in the cervix. Physician recommended diagnostics and referred to specialist for ruling out infection or cancer. Patient cancelled appointment.” On the next page, p 17, the doctor states “No note is made in the history at that time, or at the six weeks' return visit that there is any abnormality of the cervix.” “Yet here she was, three months later, with a full-fledged tumor. Either her doctors had missed it during her last exams- which seemed impossible or it had grown at a terrifying rate”.
There is one more issue that bothers me. That is medical privacy.
Skloot says “Dead people have no right to privacy.” It seems to me that an incredible error in judgment was made when one of the doctors released details about Henrietta Lacks and her medical records to a reporter for an article that appeared in Rolling Stone in the 70's. I acknowledge that without this leak, Henrietta's story would have been unknown and her family would never have been able to point with pride to her unique contribution.
But one of my questions is why did Skloot let her inner reporter loose to write about that the mental problems several of Henrietta's children had that were probably due to being born from a syphilitic mother? Did the Lacks' children and grandchildren know that these details were coming out in the book? How did these details of Henrietta's children tell the story of the HeLa cells other than making the book a bit more titillating? Henrietta appears to have been such a private person – keeping her cancer diagnosis away from her family even while she was having inpatient treatments. Would she have approved of this?
Skloot worked long and hard to gain the trust of Henrietta's daughter, Deborah, who felt that the family had been exploited at every turn. Deborah died before the book was published. How would she have felt about these details of her own medical history in the book?
So I'm torn about this book. It raises interesting medical ethics questions, blithely skips over other questions such as that of privacy, and leaves the majority of people who read with a rather false impression of the events; not by facts, but by the technique of combining this story with other stories where boundaries were clearly crossed.
The author first hears about HeLa in college and it fascinates her and this leads her on a relentless journey of discovery. Who was this unknown woman? This is where the story shines, as Skloot learns that the woman’s name is Henrietta Lacks and she begins to track down her surviving family, who know very little about their mother’s monumental contributions. The author meets the children, of course all grown now, and eventually has a strong on-going relationship with them. There is plenty of anger, frustration and some revelations, as she strives to tell their mother’s story.
Skloot is able to express the science in an easy and digestible manner but her ability to put a human face on this amazing real-life drama, is triumphant.
Enter Rebecca Skloot, a new-to-me author, to enlighten me. She tells the story of Henrietta's cells. Henrietta was a young mother who grew up in rural Virginia and later lived in a poor section of Baltimore, Maryland. As a young woman and pregnant at the time, she was diagnosed with an aggressive form of cervical cancer. With no laws in effect in the 1950's to protect her privacy or the use of her "waste tissues", malignant cells were cultured from Henrietta's body before she died. As a result of tissue culturing (laboratory growth of cells), these cells continued to reproduce today and have resulted in a megamillion dollar business which has helped medical research around the world.
This book, however, is not only the story of Henrietta's cells. It also is the story of Henrietta's family who had little to no idea that any of this was happening. They were always suspicious of "John Hopkins", the hospital which treated her mother before she died, but they had no understanding of Henrietta's illness nor the consequences of the harvesting of Henrietta's cells.
With great devotion to explainingthe scientific basis of this book, deep respect for Henrietta's family, and a fierce determination to complete the story she began, Rebecca Skloot has produced a heartbreaking yet amazing work of literary nonfiction which contains the gripping tension of any novel. I highly recommend this work, Sloot's debut book, to anyone who is interested in medical research, patient privacy, or informed consent. It's a wonderful eye-opener.