“When he asked if she was okay, her eyes welled with tears and she said, “Like I’m always telling my brothers, if you gonna go into history, you can’t do it with a hate attitude. You got to remember, times was different.”
It’s a great quote from a great book about a great story that’s been near lost to time. But I still got plenty mad at what happened.
Henrietta Lacks, as HeLa, is known to present-day scientists for her cells from cervical cancer. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells were taken without her knowledge and still live decades after her death. Cells descended from her may weigh more than 50M metric tons.
HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks was buried in an unmarked grave.
The journey starts in the “colored” ward of Johns Hopkins Hospital in the 1950s, her small, dying hometown of Clover, Virginia — wooden slave quarters, faith healings, and voodoo. Today are stark white laboratories with freezers full of HeLa cells, East Baltimore children and grandchildren live in obscurity, see no profits, and feel violated. The dark history of experimentation on African Americans helped lead to the birth of bioethics, and legal battles over whether we control the stuff we are made of.
I have been meaning to read this book for a long, long time now. It first caught my attention, with its bold orange cover, on one of the feminist sites I visit regularly, and put it on my reading list. It’s a non-fiction story of a black woman in the 1950s and how, as her life ended, her DNA continued through sscience … and I had never heard of this before. And that made me think at first, that I was gettign forgettful – that highschool bio-chem was flitting out of my brain. Worrisome especially since this is exactly the type of story I would pay attention to in bio-chem, a human interest story. Then I realized, no, I hadn’t forgotten this story – it had never been told, because no one really knew about it, and those who did, apparently didn’t think it super necessary to share.
So I am super glad that I found this book.
I started reading it at the track a few weeks ago, under the dessert sun, while the Boy was racing around his car. I think it took me a few chapters, but I was suddenly in Maryland, in the 1950s, with all the bitterness that entailed. It was a harsh time – segregation ran deep, women were nowhere near the status we currently have, and a poor black woman with cancer in her body was never going to get the treatment or consideration she deserved. It made me cold thinking about it, but I couldn’t stop reading. It’s a powerful story on so many levels.
Firstly, the overhanging question through the whole book is this: Does a patient’s right to know trump commercial rights of doctors and researchers? I would say yes. Actually, I have always said yes – I think I was one of three students in my torts class who came down harshly on the decision in Moore. Henrietta Lacks’ cells were taken without consent, and the commercialization of HeLA was done without any knowledge of her descendants. From what could be understood to have transpired between the 1950s and now, the Lacks family was also mined for blood in order to further this research without proper consent or explanation. The idea with this, and behind Moore for what it’s worth, is that if you get consent from patients or share profits with them from their own DNA or cells or whatever, than there will be no incentive to do that kind of research.
Let that sink in for a second and then let your mad get up.
Because … yeah, no of course – that makes a lot of sense.
Told you this book got me plenty mad.
The idea that research will come to a standstill because proper compensation is paid is as ludicrous as saying abstinence education programs encourage safe sex practices: it just doesn’t make any sense. But that is only one part of this book, though a large part.
The book is also the story of – not only a woman – but a family, set against the backdrop of race, slavery, plantations, poverty, medical insurance (or lack thereof), and the single-minded pursuit of science.
It would be impossible to review this book without mentioning race: Henrietta herself was a black woman, from a family of former slaves who picked tobacco off a farm, lived in the same town as their ancestors and never had very much in the way of money. They relied on the John Hopkins hospital – an institution set up in order to help the needy – in their “colored” section, and as many of thee poor had been taught – they just listened to the doctor and did as they were told. I recall the older people in my family being the same way – trust the doctor, they’re smarter than we are, we should do as we’re told, we’re just lucky to be a position to see a qualified doctor. But we didn’t have that double sided experience that Henrietta’s family – her whole community, the entirety of the black community in the United States, had. I will let the book speak for it, as I am no expert – but warning, it cuts to the bone:
“To discourage slaves from meeting or escaping, slave owners told tales of gruesome research done on black bodies, then covered themselves in white sheets and crept around at night, posing as spirits coming to infect black people with disease or steal them for research. Those sheets eventually gave rise to the white hooded cloaks of the Ku Klux Klan.”
Can you imagine? Thinking that, because of your body – the colour of it, the sex of it – you have that extra risk of being alive (or dead, really). It’s terrifying, and the book does a wonderful job of drawing you in – both Skloot’s words and the quotes she uses from Henrietta, her family and her old friends, just resonate. It truly is a horror to understand that this was not so long ago, and that this is a continuous experience by many blacks even today. I mean, stop and frisk, anyone? Or gun laws … or rape convictions … or really anything. It makes me so sad inside.
The book is not only sadness and loss, however.
There is a great part of the book that is devoted to the good that has been accomplished through the use of HeLa, the way that scientists have been able to create vaccines for things like polio, through the experimentation on HeLa cells. There is something amazing to be said of that – that a poor black woman from rural Maryland contributed to science at a foundational level – without her cells, we’d be far, far behind where we are now.
The book does a good job of weaving together all those strands – jumping from Henrietta’s own life story, to that of her daughter Deborah (who seems like quite the character), to the various scientists who worked with HeLa cells to Skloot’s own life and journey of discovery. Just as you get mad enough to spit, you’re transported to a snippet about the development of the polio vaccine, and just as you’re about to really sob for the children that Henrietta left behind, you’re taken to their own words, where they are resolutely alive and living. It’s a complicated narrative – it goes through decades of various peoples’ lives as well as the ongoing journey of the immortal cells. It’s easy to get lost in it, but the book does a good job of grounding you in the facts, even as the Bible is quoted.
To end off this review, I will use the same quote Skloot used at the start of the book, and encourage you to go out and read it – you won’t regret it:
“We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish, and with some measure of triumph. —ELIE WIESEL from The Nazi Doctors and the Nuremberg Code”
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