The Immortal Life of Henrietta Lacks

This book is 50% biography and 50% science; and it adds up to 100% fascinating. Wow - I couldn't put it down!I have worked with HeLa cells many times during my career in microbiology, and I've always wondered about the woman from whom they originated. I was always very much aware that behind every one of the medical tests I performed lay a real person whose life might depend on the accuracy and insight of my work. I wanted to know as much as possible about that person, both to keep my focus on the real reason for the work I was doing, and to gain insight that might contribute to the patient's diagnosis and treatment.And although I knew that "HeLa" had died in 1951, I felt the same way about working with the cells from her malignant cervical tumor. I wanted to know more about her, to always be aware of and empathetic to the real person and her suffering. But I graduated before Rebecca Skloots did, at a time when even less was known about "HeLa." I didn't know Henrietta Lacks' name, that she was African-American, her age when she died, or how long she was ill; and I had never seen the photo of her that is now so famous. I wondered whether she had any children, and what became of them when she died.So I was thrilled when this book came out, and it has been on my "priority tbr" list since I first heard of it. It lived up to, and even exceeded, my expectations. It answered all my questions, and brought up many new ones, the answers to some of which may never be known.Henrietta's life was a hard one. She lost her own mother at the age of four and was raised by her grandparents. Life for her was an endless struggle against poverty. But one thing she did have was a large and close-knit extended family. Even without a mother, she learned well the arts of caring and nurturing; and all of her adult life she fed and took in other family members who needed help. She married a cousin with whom she'd grown up, and they had five children. There doesn't seem to be so much as a hint of a rumor that she ever had any other lover in all her life. But life was unfair to Henrietta. Her husband was a notorious philanderer, with the result that she was constantly plagued by sexually transmitted diseases. One of them - HPV - gave her cervical cancer and was also the reason for her cells' immortality. (Normal cells live for only about 50 divisions, then die. But the HeLa cells cultured from Henrietta's tumor are still living and reproducing sixty years later, and that is what makes them so valuable to science.) Henrietta had three venereal diseases at the same time during her cancer treatments. Her cancer was incredibly aggressive, and she died after months of terrible agony. One can only hope that her spirit survives somewhere to know that the tragedy of her life was given meaning by her contribution to medical science - arguably the most important in the history of medicine.The story of Henrietta's older daughter Elsie is even more heartbreaking. She was born deaf, mute, epileptic, and perhaps retarded due to congenital syphilis (meaning she contracted it in her mother's womb. All 5 of the Lacks children suffered neural hearing disabilities from the same cause.) At least one family member believes that Elsie may not have been retarded at all, but was simply unable to communicate due to her deafness. No matter what her IQ might have been, her story is utterly horrifying. A photo of Elsie from when she still lived at home shows her to be a strikingly beautiful child; and also clean, healthy, and happy. But when Henrietta became so ill, she could no longer care for her daughter and Elsie was institutionalized. What happened to the 11-year-old girl in the Crownsville State Hospital for the Negro Insane is so shocking and awful that it's almost unbelievable. This part of the book is very difficult to read, but it's important that people know - both to honor Elsie's memory, and to make sure that such things do not happen again.Henrietta died before her younger daughter Deborah was old enough to remember her, and Deborah was to spend the rest of her life longing for information about her mother and sister, trying to forge some kind of connection with her lost ones. Deborah's help and commitment to finding the truth was vital in the writing of this book.Sloot comes across as sincere and as having developed a genuine and lasting bond with Henrietta's family, rather than as simply a dispassionate and objective reporter. This was instrumental to her research, as the family had been "burned" several times by unscrupulous characters who only wanted to cash in on the story for their own profit. It made the Lacks family defensive and ultra cautious. Before Skloot could even begin writing the book, she first had to win their trust. And she does seem to have honored that, by setting up a scholarship trust fund for the education of Henrietta's descendants and donating a portion of the book's profits to it. Another, indirect, result of this book is the donation of tombstones for Henrietta's and her daughter Elsie's previously unmarked graves.The information given in the book about the ways in which Henrietta's cells have contributed to science and helped other people is fascinating and amazing! Without HeLa, the polio vaccine and the most effective cancer medications wouldn't exist; nor could the HIV virus have been identified. And these are just the beginning: the list goes on and on.The book concludes with a thorough discussion of the ethics of medical research on human tissues. Henrietta's sons have a strong sense of injustice that their mother's cells were taken without her knowledge or permission, and that so many people have made vast amounts of money off of them while her children cannot afford basic medical care. And who can blame them? They do have a point. Patient privacy is another problem that arises when working with human cells, especially now that their DNA can be fingerprinted. Skloot interviews many experts with widely varying opinions about these issues, and shows us how extremely complex the matter is, with no easy answers.The book includes some great photos. And if you go to the author's website, you can see many more photos, including some of the ones described but not included in the book. [...]My one criticism of this book was that it left some questions unanswered that probably could have been answered. Especially - and this one's driving me crazy - what were the caged creatures that frightened Margaret Lacks so, when she got lost in the basement of Johns Hopkins Hospital - the "man-sized rabbits"? (I'm guessing kangaroos.) Also, why were Henrietta's children allowed to be born with damage from congenital syphilis? Why wasn't Henrietta treated for it? Her first two kids (including Elsie) were born at home, so she probably didn't have access to professional medical care at that time. But the others were born in hospitals. Was it that she didn't have any prenatal care, so that by the time she was in labor it was too late? Or that the effective penicillin treatment wasn't commonly available yet? Was it available but not given to indigent black patients?I also noticed that Skloots uses the inaccurate term "hereditary syphilis" rather than the correct "congenital syphilis." But given the extensive amount of research she did (the book took 10 years to write) I suspect that was a deliberate choice rather than an error. Skloots may have felt that readers without a scientific background would better understand the word "hereditary". Actually "hereditary" refers to features that are inherited by way of genes; "congenital" simply means that a person is born with some condition, and it may or may not be hereditary. Syphilis is not a genetic disease, but one that comes from being infected by the microorganism. In congenital syphilis, the fetus is infected while in the womb and the disease has already caused permanent damage by the time the baby is born.Further evidence of the massive research project undertaken by Ms. Skloots can be seen in the appendices. The "Acknowledgments" section is actually interesting to read, as it gives further information about members of the Lacks family and their story. And beware when reading the "Notes" section - as well as thousands of technical scientific articles, it describes hundreds of interesting-sounding books for further reading that might threaten to overwhelm your tbr list!Oprah Winfrey and Alan Ball are working together on producing a movie based on The Immortal Life on Henrietta Lacks. Thanks to this book, Henrietta and her family are finally getting the recognition they deserve. On the inside back of the book jacket, there is a website address given where you can donate to the foundation for the education of Henrietta's descendants. I hope that everyone who reads the book will do that, even if they can only afford a small contribution. [...](358 pages)

Rebecca Skloot tells the story of the family of Henrietta Lacks whose cancer cells were the first human cells to be grown and reproduced in a culture medium. The Lacks family is terribly poor partly as a result of segregation and discrimination against African Americans. However, their poverty is partly a result of their own conduct. Henrietta had her first child at 14 by her first cousin. She and her husband were an attractive couple. The family has much white blood as well. There was a great deal of inbreeding. As a result many of them suffered a genetic hearing loss and mental illness. They did not appear particularly bright. Henrietta knew something was wrong when she first felt a "knot" on her cervix. Still she got pregnant again with Zakariya. By the time she sought medical treatment the lump had really grown. While she received the standard treatment for the age from John's Hopkins, her pain and discomfort were not treated as agressively as the pain and discomfort experienced by white patients. Her caretakers were often flippant about her pain. While she had a surgical proceedure to pack her cervix with radium bars, the doctor took a sample of her tumor and sent part of the tissue to a Hopkins researcher, Dr. Gey, who was trying to culture human cells. Henrietta paid nothing for her medical care. Dr. Gey was wildly successful with her cells and dubbed them Hela cells. He sent them gratis to any researcher who asked for them. He did not patent his discovery or any of the lab equipment he invented that is still used today. Money was unimportant to Dr. Gey, and he often used his own money to fund research equipment and supplies to the detriment of his family. His family lived in a modest house with a modest life style. The cells had no value until Dr. Gey and his assisstant grew them. All their value came from their efforts.Deborah, who was Henrietta's daughter was Skloot's source for much of the background information. She was an unpredictable demanding woman who had a hard life. Her mother, Henrietta, died when she was a little more than a year old. Her brother Zakiariya was an infant. Their father, David, in need of a wife married a woman who badly abused Henrietta's children. She kept Zakariya chained to a post in the basement. He was so damaged that he could not function in society. He was in and out of jails, on disability, and living in subsidized housing. The author appears to make the case that Henrietta's family should have been compensated, because many of the discoveries that arose from culturing the Lacks' cells made researchers and pharmeceutical companies rich. I don't agree with her tone. These cells had no value until some experts' efforts gave them value. I have had many pieces of tissue removed, and I neither expected nor received any compensation. Jonas Salk used the Hela cells to develop the Salk vaccine. He never patented it nor made money from it. He did it for the good of mankind and for the pure science of it. Should the Lacks family receive some of the money made by drug companies who produced it or still do?One must ask oneself: If the Lacks family were white and wealthy, would you want them to be paid for their cells? For society to work properly, the law must be the same for rich & poor, sophisticated & naive, etc. While I may believe that there should be a change in the law, the law must be equally applied. Today one cannot sell body parts which includes blood and tissue. Mr. Moore who discovered that his cells were being used to enrich his physican, sued in the U.S. courts for part of the profits created by the doctor's research. The court said "...if you give a person property rights in their tissues, it would slow down research because people might withhold access for money....it will slow research... and ... interfere with health-care delivery." Since that is the law, it must be applied evenly. A Mr. Slavin who was informed by his physician about the value of his cells did arrange to sell them before donating them. He became rich as a result. Whatever contract he had required him to give regular access, and he was able to profit without technically charging for his blood.Also one must look at the law and the customs which existed at the time of harvesting. No one was being paid for tissues and there was no evidence of commercial viability. No law at the time of harvesting was broken. No custom was breeched.What is more troubling in this story is the Tuskegee syphiliss study and the epilepsy study probably perpetrated on Deborah's retarded sister, Elsie. Most people don't realize that Tuskegee is a black medical school. So African Americans willingly perpetrated this horror on their own people. It is true that white doctors designed the study and participated in it, but the patients came from Tuskegee's black patient population. More upsetting was the epilepsy study perpetrated on mentally defective black people in a public hospital called Crownsville. There they drilled holes in patients skulls, poured out all their spinal fluid and took clear films of their brain tissue. For months afterward the patients suffered severe pain, headaches, nausea etc until the body replaced the fluid. If the reader has ever had a spinal tap where just a small amount of fluid is removed for testing, one knows about the intolerable headache pain that follows for days. This experiment was done into the 1970's. Those doctors and researchers should be hung by their toes. It smacks of the Nazi medical experiments and was just monstrous. The family should receive damage payments for that wrongful conduct. But so should all Crownsville patients and their families who were so treated.I personally think that if we paid people for donating their loved ones' useable organs, we would not have an organ shortage. The amount and kind of payment would have to discourage people from killing their relatives in order to sell their organs. We could pay for a medium level funeral, service, or cremation for anyone who died and donated their organs. Payment could be made directly to the funeral home, casket seller, cemetary etc. Skloot offers a solution. She suggests a payment scheme similar to oil royalty payments. The payments would be geared to productivity if and when the researcher using the cells made them commercially viable. However, the payment would have to be a very small percentage. Usually when one sells the mineral rights to property, one has greater disturbances and inconveniences. The surface of the property is partly occupied by a well, oil drilling equipment and workers. There is also the chance of a destructive blowout which would make oil property uninhabitable. But that sort of scheme with a very small percentage of the profits going to the donor would be feasible. In oil leases the property owner usually receives 1/8 th of the earnings. A smaller percentage would be doable for tissues.The Lacks family including Deborah bore children they could not adequately care for because of their own personal deficits as well as poverty. The anger the Lacks family felt was because they did not receive any money while others did. The money really didn't come until the 1970's or so when biochemical inventions became truly marketable. Because of all the inbreeding the Lacks descendants should have few children and use amniocentisis to determine the health of the fetus with an eye toward pregnancy termination if hearing loss or mental illness are genetically evident. Deborah used her value as a source for Ms. Skloot to run her ragged over the years. Deborah wanted respect and control which she never had. Ms. Skloot had to jump through many hoops to get the story from Zakeriya, Gary and others. Deborah was unpredictable and demanding. She wanted to be paid for her information from time to time. Ms. Skloot had no money to pay her because she was financing her research herself. Deborah died before the book was published. Still I believe that those enriched by the Hela cells should pay for a monument to mark Henrietta's grave.

Livro fantástico, vale muito a pena.

This is a great book. It is non-fiction but written in an engaging fiction style, but based in true facts. She is nonjudgmental and doesn’t criticize most of the common medical practices that were common at that time. The advances in Medicine with these cells in favor of humanity are explained in a clear and accesible way. The human side of the story is as compelling as the scientific. Highly recommended

la ricostruzione della vita di una donna che tanto ha dato alla ricerca senza saperlo, e della sua famiglia le cui vicende sono emblematiche delle disuguaglianze ed ingiustizie legate alla questione razziale negli USA. La storia della scienza e degli esperimenti di grandi (e a volte folli) scienziati. Il rapporto tra scienza, società e sistema di giustizia. La storia di un'amicizia, quella tra la scrittrice e la figlia di Henrietta che ha curato tante ferite.

Todavía no he terminado el libro pero sin duda es un libro fascinante, bien escrito, conmovedor y además he aprendido mucho. Es uno de los libros que es muy fácil de leer pero te hace pensar.

I enjoyed reading this book and finding out about tissue and cell research.