'On October 4th 1951, a young woman from Baltimore died of cancer.
Her death changed medical science for ever.'
Perhaps the first thing I have to do, as someone who works daily with those either battling cancer or caring for those who are, is to issue a health warning. Only you can decide whether you want to read a book that dwells in some part on the virulence of cancer.
Everyone reacts differently to knowledge like this and the first half of The Immortal Life of Henrietta Lacks by science writer Rebecca Skloot may make for grueling reading if you, or someone you love, is fighting cancer.
Or perhaps think carefully if reading a book like this is likely to raise your own anxieties.
In January 1951 Henrietta Lacks was diagnosed with advanced cervical cancer. A black American woman, born and raised among the tobacco plantations of Virginia, the thirty-one year old wife of David (her first cousin) and mother of their five children, (the eldest born when Henrietta was just fourteen,) The treatment was surgery followed by local application of a very rudimentary form of radium and before the year was out, fifty-nine years ago today, on October 4th 1951, Henrietta Lacks died.
I will spare the details but again, this makes for very painful reading as does the fate of her children especially little Elsie, sent as a child to a Hospital for the Negro Insane.
During the period of diagnosis and surgery cells were collected from Henrietta's tumour for culture in the lab. Cell growth under laboratory conditions had thus far been a complete failure, no one had been able to replicate the growth of human cells in a test tube, so it was with a resigned air that lab assistant Mary Kubicek set to work when the cells arrived.
Within a week Henrietta's cells had started to multiply with a 'mythological intensity', doubling every twenty four hours, filling as much space as they could be given, growing twenty times faster than Henrietta's normal cells which quickly died, and the 'first immortal human cells' had been discovered.
Hard to imagine that those same cells are still alive today.
HeLa cells (pronounced hee-lah) have been the foundation of a vast amount of medical research and drug development ever since; the 'standard laboratory workhorse' for a wide range of diseases, leukaemia, influenza, haemophilia, Parkinson's disease, the development of the polio vaccine and countless others. Instrumental in advances in in-vitro fertilisation and gene mapping, HeLa cells are still likely to be found in their billions in just about every cell culture laboratory in the world, which makes the story behind the cells even more fascinating and often deeply disturbing.
Not only does this bring ethical issues regarding ownership and consent to the fore, but central to Rebecca Skloot's story are the Lacks family who have lived in near-poverty, and endured years of mental anguish over their misunderstanding surrounding the immortality of the HeLa cells. It is this fascinating human story that has been uncovered with some fairly strenuous and demanding research, much of it conducted with an understandably suspicious, fearful and at times aggressive family. Little had been explained to them about the exact nature of the cell replication thus wild assumptions had been made about cloning and Henrietta still being alive in some form, fears that had led to a great deal of hurt and in some cases serious mental illness as various family members grappled with the impossibility of the science, and all tangled up with ideas of immortality and fundamental religious beliefs.
Alongside this was a sense among family members that they had been duped; the cells were taken from Henrietta without her express knowledge and much seemed to have been done since without the family's permission. Though the now familiar notion of informed consent was unknown in the 1950s, there are some hair-raising episodes concerning breach of confidentiality, and further very dubious research amongst members of the family that was only very 'lightly' explained to them beforehand.
But perhaps even more disturbing than the racism that also emerges, is an issue that has caused the family further devastation. The irony of a situation where they have received no financial benefit from the HeLa cells, and could afford little or no health insurance to cover the cost of any life-saving treatment that Henrietta's cells alone have made possible.Little wonder they were confused and angry over the duplicity of a system, one that has grown from the benevolent deception of the 1950s into a law declaring the possession of human tissue is not a right once it has left the body, but one that allows a vial of HeLa cells to retail at $167 a time. That's very rough justice indeed and Rebecca Skloots outlines the family's distress in their own words throughout the book which makes this a highly compelling read.
Rebecca Skloot's journey with Deborah, to trace details about Deborah's sister Elsie who had died in the Hospital for the Negro Insane at the age of sixteen, is unbearably moving. None of the younger family members had known she was there and Elsie saw no one again after Henrietta's death, it's hard to imagine what she went through.
The research whilst deep and at times highly scientific is essential to the whole and thankfully largely understandable, I think I only got lost once in the clinical depths of cell division, but that all serves to emphasise the complexities and confusion that this held for Henrietta's family. Once Deborah, Henrietta's daughter, had mastered the detail (and mastered it to a very high level) a calmness seemed to descend for the first time in her life, and when someone finally had the courage to apologise for past wrongs the family were largely at peace with themselves, their history and each other, allowing many restless ghosts to finally be laid to rest.
Reparation can sometimes consist of such a simple action.
That those apologies were finally forthcoming seems thanks in large part to Rebecca Skloots's tireless efforts and courage in pursuing this story so tenaciously in the face of frequent setbacks, and over many years, with both the family and the medical authorities.
So as aforementioned, if you can cope with the early part of the book, The Immortal Life of Henrietta Lacks is indeed a brilliant read and yes, as the blurb suggests, it was impossible for this reader to put down. Finally a fitting tribute exists to the contribution that this poor Southern tobacco farmer, buried in an unmarked grave, (though a memorial has recently been placed in the vicinity) has unwittingly made to the quality of all our lives.
May Henrietta Lacks never be forgotten.