I’ve grown up in Britain with the NHS (National Health Service), never having to pay more than prescription fees for any treatment I or those close to me have needed. It is a privileged position, I realise, and, although the doctors haven’t always been right, I am very, very grateful. In recent years as I accompanied a loved one, afflicted by a life-threatening autoimmune disorder, for chemotherapy, steroid and other (thankfully successful) treatments, I first began to wonder. Whoever first imagined that these substances could help this condition? And how did they ever persuade anyone to be the human guinea pig? Quite unexpectedly, I found the answers in Rebecca Skloot’s amazing and very accessible book.
Henrietta Lacks died in 1951 at the age of 29 of cervical cancer. While she was still alive a sliver of her tumour was taken and cells from it became the first human cells to successfully replicate in a test tube. Hard to believe but those cells continue to grow today in their billions and are the objects of thousands of medical experiments each year. As a result medical history and the lives of millions have been transformed. We can thank HeLa cells, so named after their donor, Henrietta Lacks, for the development of the polio vaccine and countless other treatments. Although autoimmune disorders are not specifically mentioned in the book, a quick google search confirmed what I suspected. HeLa cells have been pivotal in the development of current treatments.
Don’t let me give the impression that Skloot’s book is a difficult medical text. The science is explained in terms I can understand and is interwoven with the very human legacy of Henrietta’s death. She died leaving 5 children, the youngest only a few months old. The lives of those children were blighted. If you thought wicked stepmothers were only for fairytales, think again. Also medical ethics and the notion of informed consent were not what they are now. There are differing opinions as to whether Henrietta Lacks gave permission for her cells to be used in this way – certainly her family believe she did not. But then they only found out about it years after her death when the name of the HeLa cell donor entered the public domain …. and that knowledge proved to be a source of stress and trauma to rival anything (including murder) that had happened in the meantime.
The Lackses, a poor coloured family, almost all partially deaf and, as a result, badly-educated were ill-equipped to understand the implications of what they were being told. Deborah, Henrietta’s daughter struggled to grasp the difference between her mother’s living cells and her mother being alive; Henrietta’s sons were resentful that billions of dollars were being made from their mother’s cells when her family couldn’t afford basic health care. All the family knew for certain was that the moment Henrietta’s name became known, their privacy was invaded. They were continually being hounded by the press or the medical establishment for more information, blood samples, more, more, more and ne’er did they receive anything in return.
It took persistence and let it be said bravery on Skloot’s part to persuade the family to trust and talk to her. She has rewarded that trust by telling their story in their own words, giving voice to their very real resentments and concerns. She places Henrietta’s story in context of medical history by including examples of contemporaneous and infamous medical experiments. She also details legislative and procedural changes that have been made in an attempt to prevent such events from repeating themselves.
The result is an informative, in parts uncomfortable, yet always compelling 3-sitting read (unheard of in these parts for a non-fiction title). It also appears that Skloot’s dedication and persistence has helped the Lacks family come to terms with their history, enabled them find a little peace. In May 2010 a memorial to Henrietta was erected in the graveyard where her body is buried in an unmarked grave. This would have delighted her daughter Deborah, who died in 2009, and was always concerned that her mother’s memory had never received due honour.
I’m sure that this publication has ensured that will never be the case again.