The Immortal Life of Henrietta Lacks
First published in: 2010
This edition: Pan Macmillan, 2010
Genre: non-fiction, ethics
Cover typography by Stephen Raw
Ever since I was a student in elementary school, I have been fascinated with ethics. I can still discuss it, with a passion. Even if that means being the only one in the 'pro' or 'con' team. Ethics to me isn't about popular opinion. It's about carefully weighing one situation with the knowledge at hand. Using the mind as well as the heart.
Life is important. In order to benefit and sustain life, there's science. After all, it's how we humans develop everything, from our beloved iPads for entertainment to developing medicine and new technologies to help understand and treat devastating diseases. Science, then, could be considered to be our friend.
But what if science becomes something else entirely? What if science forgets that which is supposed to be so valuable? What if science loses respect for human life? Science, then, becomes an enemy. As it has to the Lacks family, whose story Rebecca Skloot outlines in THE IMMORTAL LIFE OF HENRIETTA LACKS.
Henrietta Lacks died in 1951, of a very bad case of cervical cancer. Before passing on, her cancer cells were removed from her body and subsequently used for research. As it turns out, Henrietta's cancerous cells formed the first immortal (thus forever multiplying, forever useful) strain of human cells in the scientific world.
HeLa cells are still used in science today, worldwide. Henrietta Lacks's cells were initially used with enthusiasm (it was a breakthrough after all), sold to one research facility after the other. Researchers seemed to forget the human being behind them, not even knowing her name.
Henrietta, an African American woman from a low social economic status, wasn't made aware of her cells being used for (future) research. The family she left behind wasn't made aware of her cells being used for (past and current and future) research.
Rebecca Skloot poses the question: has the Lacks family – Henrietta and offspring – been exploited by science? Henrietta's children in (the book's) present day live in poverty, in poor health, and without health insurance. Skloot wonders: is it right that the family members of the one person whose cells have been a tremendous benefit to science (also financially), cannot afford their own health care?
I admired, immediately, Rebecca Skloot's obvious dedication to this story. A lot of time, effort and (I believe) love went into this book. She has clearly done her research, which she outlines neatly and clearly in the first (fascinating) section of her book. She translates scientific material in an understandable English: people who know zilch about cell research will be able to understand most of this. (The one thing that disappointed me was learning, after I'd already finished the book, that Skloot had included notes in the back of the book. I wish she / the editor would have referred to them in-text.)
The second part of the book changes gear: whereas the first section deals with cell research and HeLa's history, the second part of the book lets us readers know about what effect HeLa has had on the people closest to it, genetically. Skloot really appears to care about the Lacks family, which allows for readers to connect with them and form an understanding of their plight. It also keeps the story from being too scientific and makes it human, which is what this eventually is all about: that human life.
But this is where Skloot lost me as a reader. The first part had me – ethics buff – completely enthralled; the second part brought out the book- and general critic in me.
Skloot has, at this point, inserted herself into the story, turning it from a book about scientific ethics into a semi-memoir: "How I met Henrietta's daughter Deb and her relatives & how I wrote this book". She even appears in the book in several scenes. She gets too close and while, as mentioned, it makes the book human, the book becomes obviously biased and extremely preachy.
It caused me to wonder in how far I agreed with the Lacks family and Skloot. Are the scientists responsible for their life of poverty? Perhaps. Yes and no.
But are the scientists who researched HeLa responsible for Deb's various physical and mental health issues? No. Did they make her ill? No. Are the scientists responsible for the life of crime lead by one of Deb's brothers, Zak – or his anger management issues? No. Are the scientists to blame for the abuse Zak endured at the hands of his stepmother? No. Are the scientists to blame for the admitted fact that the Lacks family never asked any questions – but always just assumed what was easy and convenient to them – until they learned of the actual impact HeLa has had, how big it had gotten? No.
But that's what Skloot keeps hammering on about, and it gets old fast.
I answered a rather decided 'no' on every question, except the one on poverty. Part of me feels the Lacks family deserves some form of compensation because HeLa earned science a looooot of money. I understand that they'd need the money. And HeLa is major.
But another, bigger part of me feels the Lacks family is a little greedy for feeling, so angrily, that they must have money for cell research which has been a benefit to thousands of lives. There's the big picture that I'm looking at here. And they come across as selfish in a way. They may not be. But Skloot fails to paint them in another light.
I feel that these cells which Henrietta had removed from her body were not actually "a part of her". Deb Lacks, who comes across as a paranoid, hostile and unsympathetic person, would look at HeLa cells and exclaim that they "are her mother". In a way this moved me; I am a sentimentalist despite what you are reading in this review. It's all she has left of her mother. But the realist in me would say, they are cancer. They are foreign cells that have invaded her mother's body and caused her death. They themselves are not her mother. A removed tumor to me is not part of someone's actual "natural" tissue. And they weren't stolen from Henrietta as if they were a cherished part of her body. I'm just not sure the Lacks family has a financial claim over removed tumor cells.
Should they receive compensation? In some ways, yes. But are the Lacks's helpless victims of evil scientists? I don't think so personally. Not in the way Skloot describes them, anyway. (They are, each and every single one of them, unsympathetic.)
I also reach out towards the grey area as opposed to the black and white area when I say that it was the 1950's. Ethics were not much of a thing at all. African Americans were treated abysmally, yes. And there is no excuse for that. None. And it horrifies me that people, human beings, are still being treated differently because of skin color, (non-)religion, or sexual orientation – to name a few things. To be fair I could see how this plays a major role in the Lacks family's present-day anger.
Right now though, I'm referring to the ethics of removing cancer cells from any dying patient, and using those cells for research – it just was a different time. And no one expected, before removing those cells from Henrietta, that they would be so valuable. (But it would have been nice if Henrietta was acknowledged in some way.)
It bothered me that Skloot seemed so biased against the scientists in question – I expected more objectivity from this book in that sense, outlining facts, which is how the book started. It turned into a soap opera next (there's a scene where Deb gets completely paranoid and attacks the author, for example).
Why wasn't Skloot more critical of Henrietta's husband Day – the man whose constant philandering gave Henrietta so many STD's, antagonizing and who knows maybe even causing her severe cervical cancer? The man who allowed his girlfriend to physically abuse his children? The man who neglected his children and didn't provide them with any chance for education. The man who withheld from his daughter Deb any information about her mother('s death) she so desperately, almost heartbreakingly needed. All she had were those cells.
Was she not allowed to, by the family? Or was he actually not on her radar as being someone to criticize because he wasn't a "terrible, greedy scientist"?
And finally, the one thing I couldn't get over, especially once I got through that meta-fiction nightmare of Skloot's "My Life as the HeLa author" – the book accuses everything and everyone of exploiting the Lacks family.
What is this book, with its sensationalist tag lines and intimate details of the Lacks's lives, doing?