This is one of those books with way too many reviews already, so let me add what I can. I came into this book pretty skeptical. Medical ethics is one of the most overwrought of fields, mainly because a vast number of research projects, worth billions and billions of dollars, are all required to employ bioethicists; and every research hospital in the country has to have a team of them on staff who all have to publish. The field's origin story is that of Dr. Robert Knox, a 19th century Scottish anatomist, who made it known that he needed bodies for his dissection lab, the fresher the better, no questions asked. The moral questions that this story raises are perfectly obvious, as are those of the Tuskegee Experiments, for example, in which doctors withheld treatment from poor black men with syphilis in order to study the progression of the disease. There are real, serious bioethical issues out there.
Rebecca Skloot makes a valiant effort trying to convince us that the ethics of the Henrietta Lacks case are similarly fraught, and while I'll agree that there are some interesting twists and turns to the story, I'm just not buying the central premise. Henrietta's cancer cells were taken from her biopsy and grown without getting her consent or even informing her. This was neither illegal nor unusual (in how the patient was treated--the cells themselves were very unusual) at the time. About halfway through the book, in a section on contemporary law, Skloot seems to say that such a thing would still not be illegal today, though she was not 100% clear on this. The doctor who collected the cells did not directly profit off of them--he gave them away freely--though biomedical companies today do sell batches of HeLa cells for profit, and certainly lots of researchers have achieved fame and significant salaries on the back of HeLa research.
The most interesting part of the book is when Skloot explains the history of the development of cell culturing techniques over the 1950s through 1980s, which HeLa was at the center of. Though the same two or three examples of the cell's importance get mentioned again and again throughout the book--that HeLa was shot into space, that it's used to test cancer therapies--the real contribution of the cells to science was in allowing methods for cell culture to be developed on an extremely hearty strain. Though other immortal cell lines have been discovered since, HeLa was the first, and is still one of the easiest to grow. And apparently the HeLa strain was only found after the exact same culture techniques were tried on dozens of other people's cancer biopsy samples without success, an important example of the need for persistence in science. It's not certain just how much HeLa advanced medical science, but clearly by quite a lot. Perhaps the doctors should have gotten Henrietta's permission, but honestly if she'd said no and the doctors had obeyed, the world would be a significantly worse place, and Henrietta wouldn't have lived any longer.
Unfortunately, the book really bogs down in the author's story of her personal interactions with the Lacks family. Parts of this story are interesting--Henrietta's youngest daughter suffered horribly at a mental asylum for indigent blacks in a grisly example of the genuine ethical violations common in medicine at that time--but there's a seriously self-indulgent vibe to the whole thing on Skloot's part. She's the kind white woman dropping in to help the poor black family who have been so mistreated by medicine and other journalists and even a genuine con artist. We get it: you really are well-intentioned, and you're even donating some of the profits from the book to a scholarship fund for the Lackses. This doesn't justify the book being twice as long as it needs to be. Skloot clearly has some talent as a science writer, and I'm eager to see her tackle a subject beyond the one that piqued her interest ten years prior as a high school student sitting in a biology class.
A note on the narration: I like Cassandra Campbell's voice, but she's painfully slow. I recommend at least 1.25X speed.
There is no Frigate like a Book To take us Lands away Nor any Coursers like a Page Of prancing Poetry – Emily Dickinson
I can really appreciate the depth of the research that went into this book. Since the book is structured around the chronology of Rebekka Skloot's research, it becomes apparent that it was pretty much her whole life for many years. I found the weaving of human interest stories about Henrietta and her family along with interesting scientific facts to be an engaging technique. It's interesting that several reviews I read fault her for NOT being scientific enough and for including her own story into the book. To me, those parts made all the science palatable and the book very readable!
One thing that struck me is the depth of the ignorance of all of the Lacks. They were underprivileged and uneducated mostly. In addition, there had been a lot of inbreeding in their family, so their were other issues that hampered their development. They mostly had so little education that even basic scientific explanations swished right by them and they relied more on some kind of magical thinking or myth. One myth was how Johns Hopkins medical center was snatching black people off the street to do medical research on them. In fact the author shows how Johns Hopkins was founded on the principal of helping blacks and any indigent people! There are definitely morally ambiguous decisions that were made at Johns Hopkins, but it didn't involve snatching blacks off the street! I like the way the author then went back in history to explain how this type of thinking originated. She said black oral history is filled with stories of "night doctors" who did kidnap black people and use them for research. Evidently slave owners used prey on blacks' belief that ghosts caused disease and death and their fear of these "night doctors" by dressing up as a ghost in a white sheet and scaring them into thinking that they were going to be taken away. This was a technique to keep the slaves from running away or meeting together, evidently. And, most interesting, is that these white sheeted costumes were the precursor of the Ku Klux Klan robes.
In the end, I found the book easy to read and follow, but I did get a little tired of it. I'm really only marginally interested in HELA cells, so this was a lot to read. It's a tribute to the author that she could make it as interesting as she did!
Audible Member Since 2003
Rebecca Skloot spent ten years of her life researching and writing this book. At the time she had no way of knowing just what she was getting herself into.
The HeLa cell line is one of the most important and studied subjects in the world of medicine and biology, but practically nothing was known about the person from which these cells were named, Henrietta Lacks. In fact, for years even the name Henrietta Lacks was intentionally obscured by the fictitious names of Helen Lane or Helen Larson.
Skloot was a young student at the time she became interested in the mostly anonymous Henrietta Lacks, who died at the age of 31 from a terribly aggressive form of cervical cancer. Her cells were extracted, without permission or informed consent, becoming for all purposes the first line of "immortal" human cells living outside of the host body. The author decided to attempt to put a human face on the donor of the cells which played a vital part in such scientific advances as in the cure for polio, aids research, genetic discoveries, cancer cures, drug developments, to name just a few. However, learning the true story of the Lacks family two generations after the death of Henrietta turned out to be quite the daunting venture as Skloot tenaciously uncovers layers of family suffering, mistrust, ignorance and exploitation.
The Immortal Life of Henrietta Lacks is a real-life story of family and all that goes along with it, good and bad. It is in-part a tale of mystery that walks into real human drama, tackling many difficult issues of racism, bio-ethics, privacy and profiteering.
This book is perfectly narrated and is one of the best audio books I have encountered in quite some time. Do not miss this one!
Avid reader of classics and fiction, history and well-written genre novels. Music lover and huge audiobook fan.
This is one of the best audiobooks I have heard in a long time. FIrst of all the readers are so wonderful it transforms the experience into theater. The story is about science and ethics but is even more the story of a family and how it is affected by the discovery that the cells of a mother that died in 1951 go on living today. The cell donor was 29 when she died leaving five children. Her cell line was the first to be kept alive and replicating after her death from cervical cancer in 1951. Apparently her family didn't know anyone had taken a tissue sample. Her children lacked the money to visit the doctor but their dead mother's cells went to the moon and were part of the discovery of a polio vaccine and many other important medical discoveries. It is stunning to see how badly the subjects of medical research were treated such a short time ago. THis book would be an engaging story for people with many divergent interests. Highly recommended."
I wasn't sure if I was going to like this book but to tell the truth, it's probably the best book I've read in ten years, which is appropriate since it took ten years to write. When you're finished with it, Check out the WNYC RadioLab Podcast on Itunes (from npr) which has some of the actual recordings Skloot made with Debra, including the beautiful sequence between Debra and her cousin singing to sooth her. The episode is called Famous Tumors. I have listened to Radiolab for years and had read the book almost three months before Radiolab did a story on it. I knew Skloot was a good writer, but her power of description is so amazing that when I heard the tapes it was EXACTLY how I had pictured it in my head. How many writers can you say that about?
I know it seems to be a book about boring old science, and perhaps in the beginning that's what Skloot might have thought would happen, but the actual story is so rich and beautiful it's difficult to put into words how thoroughly amazing it really is.
Do yourself a favor, download this book. You won't regret it.
I loved this book.
I usually listen to history and science with a few novels thrown in for balance. Occasionally I listen to a mystery. This was all 4!
The narrator weaves together three stories (by my count) into one book. The juxtaposition of the stories of 1) Henrietta and her family, 2) the author's research, including interactions with Henrietta's family, and 3) the scientific breakthroughs and fallbacks because of Hela cells helps each story to bring out the strengths in the other and to cause the listener to become more invested in the story.
This was such a great story. The only complaint that I have is that the medical information was very repetitive. Learning about the contribution a black woman unknowningly made was eye opening for me. I would recommend this book to friends.
What an eye opener. The history of our discovery and exploitation of genetic material is fascinating and more complex than I had imagined. Skloot covers the subject from all angles.The chronological and technical aspect is informative. The ethical observations raised through the study of the Lacks family are both clinical and personal. As we race to find cures for disease and better understand ourselves at the genetic level, we forget that it couldn't be possible without the most important component of the research process - human genetic material.
Worth a second listen. Thank you Ms Skloot.
I'm a country potter, gardener, flute player and tin tinker living with my husband, an electrical engineer & cabinet maker.
This book is worth 2 listens. What of our bodies do we own? How can we say "liberty and justice for all" in a country where corporations own the genes and even the tissue of our brains that allow formation of the words? The author brings Henrietta's family into focus and also provides a great deal of medical and legal background for HeLa cells.
Narrated very well. Every African American needs to know the examples of violation. This is just one of many that was well researched and brought to the public through barriers. Skloot is dedicated.