The book I’m reviewing today, The Immortal Life of Henrietta Lacks by Rebecca Skloot, is a bestseller, and deserves its popularity – it is an enthralling story and a fantastic piece of popular science writing, the first time I have seen bioethics presented in such an engaging manner. It tells the story of Henrietta Lacks, who died of a very unusual cancer of the cervix in 1951. Doctors who treated her cancer at Johns Hopkins hospital in Baltimore took a sample of the excised tumour. Cells from this cancer proved to be ‘immortal’ – if kept in the right environment, they reproduce without end. These were the first human-derived immortal cells to be grown succesfully. They were named HeLa after Henrietta, and rapidly spread to laboratories across the world. Without them, many medical and scientific advances of the past 60 years would have been difficult or impossible.
At the time, however, informing patients and obtaining their consent before doing this was not required or even commonplace in the US. The cells also proved to have enormous commercial value as they became mass-produced for cell biologists everywhere, but the family only discovered that this had happened decades later, and only by coincidence. Rebecca Skloot’s narrative is divided between historical reconstruction of the lives of Henrietta and her children, and direct accounts of the family’s experiences when Rebecca was researching the story in the early 2000s. Spanning 89 years, the story winds together the threads of research, medical practice, poverty and race. Henrietta’s children experience turmoil as new truths come to light about the way Henrietta and her eldest daughter Elsie were treated by doctors. They also find it difficult to accept that they struggle to obtain medical care because of their income and insurance status, having never received any compensation for the contribution that her cells have made.
Since the books’ publication, there have been some happy developments. In this blog by Nursing student Meg, you can read about the steps Johns Hopkins has taken toward recognising Henrietta’s contribution, nearly 50 years after the fact. A headstone has been placed on Henrietta’s previously unmarked grave. The profits from the book have also been sufficiently healthy to help fund the education of Henrietta’s five grandchildren, meaning that her family at last is gaining something from the story.
In the UK the Human Tissue Act 2004 has considerably strengthened the rights of tissue donors, as I saw firsthand when I had the privilege of learning anatomy by dissection in my first year as a medical student. In the US many issues remain equivocal – in particular, significant commercial gain from one person’s tissues often does not entail compensating them in any way, although the genes and cell lines derived from the them are often patented by individuals or corporations with commercial gain in mind. Thus patent-holders may restrict access to scientific discoveries or demand money for them, but the person from which they are derived often cannot. Thankfully, the current trend international trend in intellectualy property seems to favour the opinion that cells and genes ought not be patented, with all eyes set on Myriad’s patent of the BRCA1 gene for breast cancer. Myriad is set to have its appeal heard in the federal circuit of the US courts. Meanwhile, it remains unclear how to adequately compensate tissue donors for income generated from their samples. 60 years on, the ethical questions raised by Henrietta Lacks are still with us.