By Clare Wilson, Senior Research Nurse.
“A fascinating, harrowing but necessary book” Hilary Mantel 2010.
This book tells the true story of a young African-American woman who at the age of 31 died of an aggressive invasive cervical cancer. The legacy of this young woman is quite amazing.
Her name was Henrietta Lacks; she was a poor tobacco farmer who married at the age of 14 and had consequently struggled to bring up her children. In 1951, following the birth of her 5th child, she was admitted to the John Hopkins Hospital in Baltimore for an investigation into a growth on her cervix, this was the only hospital in the area that treated black patients at that time. A cervical biopsy was taken for histological diagnosis, however, without her knowledge, some of the cells were given to a research scientist within the hospital, Dr George Gey. He soon discovered that they, unlike any other human cells he had previously attempted to cultivate, did not die after a few divisions, they were hardy enough to remain alive within the petri dish and new human cells could be grown and cultivated from them.
They were immortal.
This was a revelation; an enormous breakthrough for medical science which would go on to become one of the most important findings of the 20th Century. Dr Gey named these cells “HeLa” cells after Henrietta Lacks and within a short while the HeLa cell lines were being produced in large quantities and sent across the world to thousands of laboratories where they were used for scientific research. Most notably, in 1954 Dr Jonas Stalk used the HeLa strain of cells to carry out his research into the development of the polio vaccine. These cell lines have gone on to provide the scientific world with an invaluable tool that has proved vital in the advancement of medical science. In fact there are probably very few of us in the modern world that have not benefited from some form of research carried out on the HeLa cell line. The understanding of diseases from AIDS and cancer, to genetics, DNA and IVF has been made possible because of these few cells. An astonishing 50 million metric tons of her cells have been reproduced so far, as much as 100 Empire State Buildings, and some of these cells have even been sent into space.
Henrietta died 8 months after her diagnosis completely unaware of this incredible turn of events.
The development of treatments and the production of the HeLa cell line is now part of a multimillion-dollar business.
It was not until 1973 that Henrietta’s family became aware of this legacy and the effect it had had on the entire medical world. Researchers, studying genetics, approached the family requesting blood samples for their own research purposes. The history of their mother’s “contribution” to medical science finally came to light as well as the vast profits and wealthy benefits it had offered the industry.
The book continues with Henrietta’s daughter, Deborah’s quest to find out the truth behind the discovery. It shares with us the emotions that her family experience as they learn the story of Henrietta’s life, the immense suffering she endured before her death and the shameful breaches of privacy and lack of human kindness that took place. It demonstrates the anger they feel towards the rich pharmaceutical giants as they remain in poverty. Ironically, Henrietta’s children had remained so poor since her death that they were unable to afford their own healthcare or medical insurance.
Not only does the author inform us of the discovery of the cells but exposes us to the life and hardships for the black community during 1950’s America. It does not shy away from issues such as racial politics and the fight for equality and we learn of the many medical experiments taking place on black Americans at that time. It highlights the insensitivities of the journalists and the arrogance shown by some of the medical profession; particularly well demonstrated by the Dr who carried out Henrietta’s post mortem. During the procedure she glanced down at Henrietta’s feet and noticed that her toenails were painted with bright red nail varnish, which had since chipped, the Dr very nearly fainted as she was instantly reminded that Henrietta was in fact a “real person” and not a cluster of cells that she had been working with in the laboratory.
It is an informative and scientific book but written in such a way that can certainly be read and appreciated by all. It is powerful yet compassionate and a story that should be told. It does however have a tendency to jump timelines which can become confusing. I preferred reading the scientific part of this book rather than the family’s fight for their mother’s recognition as this seemed to be unnecessarily long.
I would thoroughly recommend reading The Immortal life of Henrietta Lacks as it does indeed prompt us to think about moral and medical ethics and certainly provokes an emotional reaction. It touches on so many of the ethical dilemmas that we face today in both our working and personal lives.
It certainly asks the questions…. Were the Doctors right to use Henrietta’s cells for research purposes without her permission and where would we be today if this had not been the case? Who indeed owns our body parts once they have been removed from our bodies? Should Henrietta’s children deserve some form of compensation?
Informed consent and the codes of conduct by which we now operate are relatively new concepts, do we therefore have the liberty to judge and condemn others that lived and worked in a different era? It seems to me, though, that in the case of Henrietta and her family, common decency and mans humanity was somewhat lost along the way.
In closing – a quote from Henrietta’s daughter.
“Truth be told, I cannot get mad at science, because it helps people live, and I’d be a mess without it. But I won’t lie. I would like some health insurance so I don’t got to pay all that money every month for drugs my mother’s cells probably helped make.”
The 2010 Chicago Tribune Heartland Prize for Nonfiction
The 2010 Wellcome Trust Book Prize, and the American Association for the Advancement of Science’s Award for Excellence in Science Writing,
The 2011 Audie Award for Best Non-Fiction Audio book, and a Medical Journalists’ Association Open Book Award,
Named by more than 60 critics as one of the best books of 2010