posted on 03 Sep 2017

The Immortal Life of Henrietta Lacks by Rebecca Skloot

All of us owe an astonishing debt of gratitude to Henrietta Lacks, whether we know it or not – and most of us don’t. Lacks was a poor African-American woman who at the age of 31 was diagnosed with cervical cancer and, without her knowledge, had some of the cancerous cells removed for research purposes during a biopsy.

Although Lacks herself died in 1951 shortly after getting her diagnosis, her cells were cultured and distributed widely amongst medical research laboratories and the cell culture known as HeLa became central to a host of medical research projects. It’s a legacy that is still alive today and still contributing to our medical knowledge.

Scandalously, the Lacks family were not made aware until the early 1970s of the continuing pivotal role Henrietta’s cells were playing and even then had partial and conflicting information about what had happened. Skloot’s book brings out very clearly the inherent racism that underpinned this astonishing, heartless and exploitative negligence.

Skloot not only tells this story very well, she also unravels the medical significance in a really accessible way. But the story of the HeLa cell culture, fascinating as it is, is only a part of the story that this book unfolds. There’s another fascinating tale here about how a white author gains the confidence of a family that has become so accustomed to be fobbed off and exploited that they are reluctant to let anyone else into their story.

Skloot worked hard to convince the family that she would help bring Henrietta’s story to a wider public and was meticulous in going through all the papers relating to the case. She sets out the story of the Lacks family, not just in respect of Henrietta’s illness but in the round – a story of a black marginalised family and their generational struggles. The critical question that emerges from the research Skloot sets out is the one voiced by the family:

"if our mother cells done so much for medicine, how come her family can't afford to see no doctors?".

It wasn’t until 2001 – fifty years after the death of Henrietta – that the medical establishment finally got around to talking directly to her daughter and explaining exactly what the legacy means and to allay the family’s fear that some part of their mother was still ‘alive’ in some kind of Frankenstein fashion.

Tom Wilkinson, writing in The Independent in 2010 finishes his article by asking what seems to me to be the crucial question of this hugely enjoyable book:

Have we learnt anything since the cells were taken without permission? That would not happen now, but the ownership of genetic material is a still a vexed issue. Many human genes have been patented and a battle is currently being fought through the US courts between physicians and a biotech company owning the patents for genes used in expensive breast-cancer screening. Skloot's book discusses the wider ethical issues but mostly stays close to its aim of putting one family's story on record. Lacks has now achieved immortality twice over: through the HeLa cells and, thanks to Rebecca Skloot, in the story of her family.

The book is very cheap to find in paperback and it’s a gripping read – almost a detective thriller in the way it’s constructed. Unusually we get a chance here to see how thoughtless, institutional racism is constructed and how the ripples seem to wash out into the lives of other people.

Highly recommended.

 

Terry Potter

September 2017