The title, Henrietta Lacks, suggests a fictional novel or something akin to a spiritual experience,  however, upon reading the small print; “She died in 1951. What happened next changed the world.” also by Hilary Mantel, who we see on the front  cover, we are intrigued ; “ No dead woman has done more for the living…A fascinating harrowing necessary book.”  After reading this I had to know more.

The book belongs to the scientific and medical non-fiction genre. It is a story about some cancer cells that were taken from a poor black tobacco farmer without her knowledge and the subsequent contribution of those cells to breakthroughs in science and medicine. Henrietta Lacks was the woman from whom those cells were taken but her family did not know about this for more than 20 years. Rebecca Skloot charts the journey of the “immortal He-La cells” and the distressing experiences of Henrietta Lacks and her family, in a balanced yet sensitive narrative.  Skloot is writing for a general audience yet she manages to make very difficult scientific concepts about cell culture and genetics easy to understand. Her explanations are clear and succinct.

Although the book is written from the point of view of many people, scientists, researchers and Skloot’s own narrative voice, she maintains the predominant focus on Henrietta’s family and especially her daughter Deborah, with whom she spent most of her time gaining her trust to elicit her story.

It’s an intensely personal story and there were times I wondered how Skloot balanced intrusion and maintained objectivity. Nevertheless it is an important story and it had to be told. Skloot has managed to navigate difficult situations very skilfully with sensitivity and tact. Her tenacity in the midst of the suspicions and volatility of the Lacks family is admirable and I wondered at certain parts how she maintained her composure.

One telling episode that shows how stretched her capacity was, was when Deborah attacked Skloot in a hotel room over a misunderstanding. Skloot writes, “Then, for the first time since we met, I lost my patience with Deborah. I jerked free off her grip and told her to get the fuck off me and chill the fuck out,” (p.324). If anything that part really brought home to me the author as a person, deeply involved with a family who found themselves objects of scrutiny not of their making. Up to that point the image Skloot portrays of herself, whether conscious or not, was as a researcher and scientist with an objective.  This incident highlighted the risks she took to get the book written. Deborah’s (Henrietta Lacks’ daughter) response to Skloot’s outburst was interesting, “Then suddenly, she grinned and reached up to smooth my hair, saying, “I never seen you mad before. I was starting to wonder if you was even human cause you never cuss in front me.”  From that point Deborah saw Skloot as a fellow human being and not merely someone after her for information and I liked that show of “solidarity”.

Skloot illustrates very well the confusion and horror of Henrietta’s family’s perceptions of what was really going on. It was harrowing to read about the distress Deborah felt, especially when she wondered if her mother felt the pain of what was being done to her cells. Skloot portrays those perceptions sensitively, at the same time she tries to unseat some of the misconceptions so Deborah would have peace about her mother.  One thing I found very stark was that the imagined horrors of the family can be worse than reality and emphasizes the inequalities faced by the family. Already disadvantaged in terms of health, education, poverty and race, the Lacks family could not cope with the reality of knowledge.

Skloot brings home the HeLa cells’ human origins, she firmly reminds readers that Henrietta was a real person, unique and yet like any of us. Her description of the researcher in the mortuary who saw Henrietta’s bright red painted toes sticking out under the blanket is vivid and unforgettable.  The personal tragedy of Henrietta Lacks brought breakthroughs in modern medicine and if not for Skloot’s persistence in unearthing the truth she would still be an unsung heroine.

There were parts of the book I found hard to read, the family’s hardship, suffering, and the racial prejudice against them. I was shocked to read about the segregation, for example,  ‘the colored wards’. Skloot brings attention to the stark health inequalities of the time period in which Henrietta and her family lived. These health inequalities are by no means banished today but the injustice is tempered, and at least there are no longer “colored wards”. Still we continue to have health inequalities or as we say in the UK, the ‘postcode lottery” where affluent areas have better health facilities and easier access to resources than less well resourced neighborhoods.

The book is a major contribution to understanding the process by which modern medicine and science has come to make major breakthroughs for humankind. It stimulates awareness of the lack of accountability, ethics and governance in those early research days. Perhaps Henrietta and her family’s suffering may have been somewhat alleviated had there been ethical guidelines in place although theirs was a different era. However, the book highlights lessons to be learned and thankfully ethics is now an integral requisite of medical research.

The book is a tribute not only to Henrietta and her family, sadly Deborah did not live to see the book published, but a testament to Skloot’s skill and ability to get the family to open up to her which has made the book possible. Her attention to detail and accuracy and her storytelling skills are evident throughout the book. What makes the book compelling is that instead of listing all the facts and events in chronological order, the focus around the family forms the human interest. It makes prominent elements of the human condition with which we can all identify.  In some ways it is ironic that in seeking ways to heal and cure human suffering, humanity was violated in the process. Skloot’s book has important messages for future scientists to reflect on the ethical quagmire of medical research so that the same mistakes are not made.

I enjoyed this book and found it hard to put down. If you’re looking for a good read, this is not to be missed. You’ll also gain an insight into how much medicine and science owes to one woman.