The Immortal Life of Henrietta Lacks [Paperback]

 

 

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In 1951 human tissue culture was in its infancy, with researchers struggling to keep cells alive beyond a few cellular generations; normal cells are subject to apoptosis (programmed cellular lifespan/death)

Henrietta Lacks, a poor young black woman, was admitted to hospital in Baltimore in 1951 with an exceptionally invasive and aggressive cancer.

A standard biopsy was taken of her cancerous cells. She did not know that the biopsy would not be used purely for diagnostic purposes, but also tissues would be used for research. No consent was sought for this. In 1951 and indeed still today samples of tissue taken for diagnostic purposes can be used for other purposes - we do not own our tissues once they are no longer part of us.

Cancer cells are not subject to apoptosis. The particular aggressiveness of Henrietta Lack's cancer yielded astonishing results for tissue culture, and within a short space of time the `HeLa' cell line was being used for a wide number of medical research studies world wide, whether testing the actions of many pharmaceutical drugs or as part of the human genome project, and more.

`HeLa' has had profound, beneficial effects on probably most of us who benefit from modern medicine. HeLa has earned millions of dollars and much prestige for many predominantly white male scientists, as patents have been taken out on advances only possible through tissue culture using the HeLa line

However, Henrietta's family were unaware of the rich legacy she left the world - or the rich financial legacy reaped by institutions and individuals. In fact, they remained poor and unable to afford healthcare.

Rebecca Skloot has written an angering, compassionate and educative book, looking not only at the science made possible by HeLa - but also exposing the arrogance, hypocrisy and callousness of some individuals and establishments within scientific research. She also tells the story of Henrietta and the Lacks family - indeed, formed strong relationships with that family. Inevitably, given time and place the book is also a shameful expose of how America used its poor in unethical `research' very little different from the `research' which Mengele and others were using in concentration camps a decade or so earlier

This book pulls no punches, and may not be for those sensitive to medical issues - there are graphic descriptions of medical procedures and the ravages of terminal illness. It is, however, extraordinary.

This is without question the best non-fiction book I've read in years. Skloot's debut is thrilling, original and refuses to be shoehorned into anything as trivial as a genre. Equal parts popular science, historical biography and detective novel, it reads as evocatively as any work of fiction.

Skloot repeatedly appears as a character in her own book, narrating her journey from first hearing about HeLa cells in a classroom to her attempts to contact and support the Lacks family. Her narration reveals the trials that the Lacks family have undergone since Henrietta's cells went global, and the sheer amount of trust it took to uncover the details of this story.

But this is really a book about three heroines - the two whose names grace the cover and Henrietta's daughter, Deborah Lacks. Skloot's personal mission to tell this story and Deborah's quest to know about her mother's life and legacy are central parts of Henrietta's story and they form some of the book's most compelling segments.

I write this review as someone who isn't typically a fan of historical non-fiction. Particularly in popular science, I often find descriptions of researchers to be distracting attempts at shoehorning in a human element that is out of keeping with the rest of the book. Not so here - this work has the most human of stories at its core, and never deviates from that important, and often heartbreaking, humanity. When science appears, it does so effortlessly, with explanations of cell anatomy or techniques like "fluorescence in situ hybridization" seamlessly worked into descriptions of the coloured wards of Johns Hopkins hospital to Lacks's hometown of Clover, Virginia.

Skloot's prose is witty, lyrical, economical and authoritative. But The Immortal Life of Henrietta Lacks is not a comfortable read. Learning about Henrietta's devastating radiation treatments, the history of experiments on black Americans and the events in the book's conclusion are heart-rending. But the story is uplifting too, particularly in a stand-out chapter where Henrietta's children, Deborah and Zakariyya, visit a cancer researcher to see their mother's cells under a microscope.

All of this is to be expected of a book that refuses to shy away from tackling important themes - the interplay between science and ethics, the question of who owns our bodies, and the history of racism in the US. Actually considering these issues seems to be too much for some people, like the anonymous reviewer who appears to be attacking a straw-man version of the book. Those who actually make the effort to read the book and heart the story will be rewarded for it.

For all its grand scope, skilful writing and touching compassion, there is one simple element that makes The Immortal Life of Henrietta Lacks an instant classic - this is one of those stories that genuinely needed to be told. By right, it will achieve the same immortal status as the cells it describes.

This book is something of a one-off not only because of its unique subject matter but also the way in which the author treats it. Cells from an individual suffering from cancer have, because of their capacity to propagate, become the default cellular material for generations of researchers. In itself this would make for an interesting factual account but Rebecca tries (and to an extent succeeds) panning back from the core scientific facts to show how there are many different and not necessarily interconnecting perspectives on a story. How `Blacks' were treated by the establishment in 50s America. The story of the individual and her family, who were as representative of the millions of the poor as her cancer cells were unique. A glimpse of medical science and quality of life at the time. The arrogance of the establishment (the cells were taken without her consent). And so on. Overall a kaleidoscopic picture, which reflects Rebecca's background as a journalist and is effective in its approach.

Rebecca did not `uncover' the story; there was an award-winning BBC documentary a dozen years ago, which triggered many newspaper features and there were also plans for the Medical establishment to honour Henrietta in 2001 (thrown awry by 9/11). I am left unclear as to where the author figures relative to these other efforts to publicise the story and it is almost as if she elbows her way to the front. It is apparent that Rebecca was involved with Henrietta and her family over quite a period of time and has taken them forward as something of a personal crusade. This shows and it is slightly disappointing that, having successfully shown the multi faceted nature of the subject, she then forces the perspective with the content weighted towards the family.

There is nothing wrong with such a focus in one sense but whilst every family has its unique story to tell I am unclear whether Rebecca is trying to single out this family as remarkable or simply as representative. I understand that we must see the humanity behind the facts (she quotes in the frontispiece `we must not see any person as an abstraction') but thousands, perhaps millions, have unwittingly contributed to medical science and received no thanks. I agree that the story of Henrietta deserves attention, but not because there is anything exceptional to report. Rather, it is just one example of the legions that have been treated with disregard by the medical establishment which benefits from studying them. You only have to think of the wretched thousands grieving after discovering that their loved ones body parts were cannibalised by researchers. I can therefore read about Henrietta with immense compassion but concious that unfortunately, unlike her cells, her experience was (and remains) far from unique.

Perhaps the fact that the book has provoked my remarks indicates that it has succeeded in engaging me. For that reason, I score it as a book worth reading even if I am unsure as to the basis of the author's crusade. There are certainly issues highlighted in this book that are worth campaigning about but sometimes a journalist's motivation (and this is Rebecca's first book) is more about creating a story than reporting on it. I note that she lectures on 'creative' non-fiction, which a cynic might interpret as 'spinning the facts'. I also feel that she gets in the way of the camera lens a lot (there is a degree of `and when I rang...') almost to remind that she deserves thanks for bringing the story to our attention.

In some places I detected that Rebecca 'made large' on issues (such as consent) without being able to follow through on the substance, as if having made the headline she didn't know where to go with it. On the other hand, any book that simultaneously strives to educate about science, provides an insight into social history, informs on prejudice and shines a light on what life was like for everyday people at the time deserves high praise if it can succeed in most of its ambitions. This book does.

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4.0 out of 5 stars More human interest than science
This book is well worth reading due primarily to the human interest element rather than science. It left me thinking about bioethics issues, particularly informed consent and end... Read more

Published 5 days ago by Mrs. Wang

4.0 out of 5 stars A unique and astounding tale of life after death
I'm sure I'm not alone when reading this book, thinking "how have I not heard of Henrietta Lacks and her incredible story before"? Read more

Published 11 days ago by Nicola Wilson

4.0 out of 5 stars A Science breakthrough, a human price
Having decided that I had a shortfall in my general knowledge regarding Science i took a wander round the Popular Science section. Read more

Published 21 days ago by R. A. Davison

4.0 out of 5 stars Thoroughly researched and beautifully written
The writing style made this book a relatively easy read. Content-wise, it was very interesting; I was amazed to learn how one woman's cells changed the face of medicine and... Read more

Published 22 days ago by Purple Rose

3.0 out of 5 stars M Lane
A good read but..
1) not optimised for Kindle - plenty of typographical errors which I personally find distracting. Read more

Published 1 month ago by Sparky

5.0 out of 5 stars Fantastic
An extremely well written, well researched book. It has the perfect balance of scientific fact and personal accounts. I absolutely couldn't put this down. Read more

Published 1 month ago by ladybug

5.0 out of 5 stars Lindylou
This is a first class book well written would recommend this to anyone.
The mixture of science and history is well proportioned.

Published 2 months ago by Linette

3.0 out of 5 stars Mixed
I had a mixed response to this book. The history of the period - and particularly the lack of any ethical legislation for genetic material - was really interesting. Read more

Published 2 months ago by SueW

3.0 out of 5 stars Gripping but has flaws
This book is well written and is mostly well told, the story of Henrietta, what happened to her cells once they were removed and the impact on her family is interesting and makes... Read more

Published 2 months ago by J. Willis

5.0 out of 5 stars Should be Compulsory Reading
This should be compulsory reading for everyone at school. I remember learning about HeLa cells under cytology in Human Biiology. To me, they were always just cancer cells. Read more

Published 3 months ago by pigsmayfly

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