The Immortal Life of Henrietta Lacks, by Rebecca Skloot

Nine stars

There are some books that I finish and am left in awe, questioning everything that I thought I knew on a subject. Or, as is the case hear, having learned so much about which I knew nothing. My jaw is still on the floor after I finished this book and I can only imagine the controversies and discussions it might provoke. A thank you goes out to three Goodreads friends who recommended that I read this book and open an avenue for discussion. Aven, Brenda, and Rae, I hope we can begin a wild and intriguing dialogue, pulling others into the mix as things gain momentum.

Who was Henrietta Lacks? What are HeLa cells? These are two of the foundational questions that Rebecca Skloot sought to answer in this poignant biographical piece. While I have tackled a number of biographies in my time as a reader, Skloot offered a unique approach to the genre in publication. Henrietta Lacks grew up in rural Virginia, picking tobacco and made ends meet as best she could. After marrying, she had a brood of children, including two of note, Elsie and Deborah, whose significance becomes apparent as the reader delves deeper into the narrative. Skloot offered up a succinct, but detailed narrative of how Lacks found an unusual mass inside her and was sent from her doctor to a specialist at Johns Hopkins (yes, THAT medical centre) for treatment. The mass was malignant and Lacks was deemed to have cervical cancer. Her surgeon, following the precedent of many doctors in the early 1950s, took samples of her tumour as well as that of the healthy part of her cervix, hoping to be able to have the cells survive so they could be analysed. Past attempts by doctors and scientists failed to keep cells alive for very long, which led to the constant slicing and saving technique used by those in the medical profession, when the opportunity arose. As it turns out, Lacks’ cells were not only fascinating to explore, but George Gey (Head of Tissue Culture Research at Johns Hopkins) noticed that they lasted indefinitely, as long as they were properly fed. Gey realised that he had something on his hands and tried to get approval from the Lacks family, though did so in an extremely opaque manner. After Lacks succumbed to the cancer, doctors sought to perform an autopsy, which might allow them complete access to Lacks’ body. Ignorant of what was going on, Henrietta’s husband agreed, thinking that this was only to ensure his children and subsequent generations would not suffer the agony that cancer brought upon Henrietta. So began the conniving and secretive nature of George Gey. He harvested these ‘special cells’ and named them “HeLa”, a brief combination of the original patient’s two names. Their phenomenal growth and sustainability led him to ship them all over the country and eventually the world, though the Lacks family had no idea this was going on. HeLa cells were studied to create a polio vaccine (Jonas Salk used them at the University of Pittsburgh), helped to better understand cellular reactions to nuclear testing, space travel, and introduction of cancer cells into an otherwise healthy body during curious and somewhat inhumane tests on Ohio inmates. During all this, Johns Hopkins remained completely aware of what was going on and the transmission of HeLa cells around the globe, though did not think to inform the Lacks family, perhaps for fear that they would halt the use of these HeLa cells. Through the use of the term ‘HeLa’ cells, no one was the wiser and no direct acknowledgement of the long-deceased Henrietta Lacks need be made. Skloot provided much discussion about the uses, selling, ‘donating’, and experimenting that took place, including segments of the scientific community in America that were knowingly in violation of the Nuremberg Rules on human experimentation, though they danced their own legal jig to get around it all. The crux of the biography lay on this conundrum, though it would only find its true impact by exploring the lives of those Henrietta Lacks left behind after her death.

Skloot took the time to pepper chapters with the history of the Lacks family as they grew up and, eventually, what happened when they were made aware that the HeLa cells existed, over two decades after they were obtained and Henrietta had died. Skloot split this other biographical piece into two parts, which eventually merge into one, documenting her research trips and interviews with the family alongside the presentation of a narrative that explores the fruits of those sit-down interviews. That Skloot tried to remain somewhat neutral is apparent, though through her connection to Henrietta’s youngest daughter, Deborah, there was an obvious bias that developed. Superimposing these two narratives would, hopefully, offer the reader a chance to feel a personal connection to the Lacks family and the struggles they went through. In her discussions of the Lacks family, Skloot pulled no punches and presented the raw truths of criminal activity, abuse, addiction, and poverty alongside happy gatherings and memories of Henrietta. No biographical piece would be complete if it were only window dressing and trying to paint a rosy picture of this maligned family without offering at least a little peek into their daily lives. However, it balanced out and Skloot ended up with what the reader might call a decent introduction to this run of the mill family unit. Their ire at being duped by Johns Hopkins was apparent, alongside the dichotomy that HeLa cells were so popular, yet the family remained in dire poverty in the poor areas of Baltimore.

The legal ramifications of HeLa cell usage was discussed at various points in the book, though there was no firm case related to it, at least not one including the Lacks family. One person I know sought to draw parallels between the Lacks situation and that of Carrie Buck, as illustrated wonderfully in Adam Cohen’s book, Imbeciles (https://www.goodreads.com/book/show/25938480-imbeciles). While the courts surely fell short in codifying ownership of cells and research done on them, the focus of Skloot’s book was the social injustice by Johns Hopkins, not the ineptitude of the US Supreme Court, as Cohen showed while presenting Buck v. Bell to the curious audience. While George Gey vowed that he gave away the HeLa cell samples to anyone who wanted them, surely the chain reaction and selling of them in catalogues thereafter allowed someone to line their pockets. Skloot offers up numerous mentions from the family, usually through Deborah, that the Lacks family was not seeking to get rich off of this discovery of immortal cells. While companies were spending millions and profiting billions from the early testing of HeLa cells, no one in the family could afford to see a doctor or purchase the medicines they needed (all of which came about because of tests HeLa cells facilitated!). It is both fascinating and angering to see the system wash their hands of the guilt related to immoral collecting and culturing of these HeLa cells. Skloot did explore the slippery slope of cells and tissue as discarded waste, as well as the need for consent in testing them, something the reader ought to spend some time exploring once the biographical narrative ends. It is sure to confound and confuse even the most well-grounded reader.

The latter chapters touched upon the aptly used word from the title “Immortal” as it relates to Henrietta Lacks. Be it a biography that placed a story behind the woman, a detailed discussion of how the HeLa cell came into being and how its presence is all over the medical world, or that medical advancements as we know them will allow Henrietta Lacks’ being to live on for eternity, the reader can reflect on which rationale best suits them. While there is a religious undertone in the biography as it relates to this, Christianity is not inculcated into the reader’s mind, as it was not when Skloot learned about these things.

Do I know Henrietta Lacks any better now, after Skloot completed her work? Most definitely! Can I, a complete scientific dunce, better understand HeLa cells and the idea behind cell growth and development? Completely! Do I feel there was an injustice done to the Lacks family by Johns Hopkins in 1951 and for decades to come? Yes, I do harbour a strong resentment to the duplicitous attitude undertaken by a hospital whose founder sought to ensure those who could not receive medical care on their own be helped and protected. Is there a lingering legal argument to be made for compensatory damages or at least some fiduciary responsibility owed to the Lacks family? That is a very grey area for me, only further complicated by the legal discussions in the Afterward and the advancement of new and complicated scientific discoveries, which also bore convoluted legal arguments. I will say this… Skloot brought Henrietta Lacks to life and if that puts a face to those HeLa cells, perhaps all those who read this book will think twice about those medicines used in their bodies and the scientific breakthroughs that are attributed to many powerful companies and/or nations. Maybe then, Henrietta can live on in all of us, immortal in some form or another.

Kudos, Madam Skloot for intriguing someone whose scientific background is almost nil. You brought numerous stories to life and helped me see just how powerful one woman can be, silenced by death and the ignorance of what those around her were doing.

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