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The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks

Book by Rebecca Skloot

 


DETAILS


Publisher : Crown; 1st edition (February 2, 2010) Language : English Hardcover : 384 pages ISBN-10 : 1400052173 ISBN-13 : 978-1400052172 Lexile measure : 1140L Item Weight : 1.37 pounds Dimensions : 6.4 x 1.3 x 9.6 inches , #1  NEW YORK TIMES  BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”— Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” ( LITHUB ), AND “BEST” ( THE PHILADELPHIA INQUIRER ) BOOKS OF THE DECADE • ONE OF  ESSENCE ’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE  CHICAGO TRIBUNE  HEARTLAND PRIZE FOR NONFICTION NAMED ONE OF THE BEST BOOKS OF THE YEAR BY  The New York Times Book Review  •  Entertainment Weekly  •  O: The Oprah Magazine  • NPR •  Financial Times  •  New York  •  Independent  (U.K.) •  Times  (U.K.) •  Publishers Weekly  •  Library Journal  •  Kirkus Reviews  •  Booklist  •  Globe and Mail 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, which 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, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.  Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more 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 of.  Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? 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. Read more

 


REVIEW


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)

 


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