Upon reading this book I felt cheated, not by this book but by all the science books I’ve read before it. I earned my first three science degrees (including my medical degree) in the late 1980’s early 1990’s, and at that point women’s contributions to science were barely acknowledged, regardless of race. I’m convinced the only reason we learned of Madam Curie was she won the Nobel Prize and couldn’t be ignored. I never heard of Rosalind Franklin and her contribution to DNA studies until an injury-forced career change took me back in pursuit of another science degree. I’m working up two new anatomy classes both of which have chapters on genetics and there is still not one mention of Hela or Henrietta (though there will be in my own notes).
I’m not including the tooting of my own horn here just to brag but rather to point out my own background in science is extensive and to illustrate just how ignore Henrietta Lacks’s unknowing contribution to science still is so I am very glad to have this book (which will be going on the suggested reading list for my classes). To begin with I think Ms Skloot manages a difficult task, making non-fiction as easy to read and as compelling as fiction (Personally I often find non-fiction to be almost like work in reading it, too dry). Her passion for this story comes through so strongly and her care and concern for the Lackses is touching. She had more patience than most people would have and I commend her for it.
She deftly weaves Henrietta and the family’s past in with the modern day search to bring the truth to the surface. Henrietta had a hard short life and the sad reality was in 1950’s America people of African descent had every reason to fear hospitals. Any number of studies was undertaken then that today are horrifying to the point many of my students can’t even believe that it happened when I tell them about things like the Tuskegee experiments. I know from personal experience with patients that would have been Henrietta’s contemporaries that no one, regardless of race, questioned doctors back then. None of the family would have known that her cells had been harvested and that is true today (points to the afterward, most people don’t realize that biological tissues are often used for study rather than destroyed. My surgery last month was purposely done at a teaching hospital so that both the surgery and the tissues taken could be used for research but there were no consent forms for that purpose as they’re still debating the pros and cons of such a thing).
However, this, along with fears that their mother was purposely allowed to die, tainted several generations of the Lacks family. Ms Skloot had a lot of hard work to win their trust. The inarguable thing about the whole story is though, how revolutionizing Henrietta’s cancerous cervical cells really were. They were so successful in living in culture that they are still here today decades after Henrietta’s death. This immortality of her cells allowed for an incredible amount of research done, vaccinations, the effects of space travel and so much more.
I was stunned at how hounded for information Henrietta’s descendants were (given how little I have ever seen about HeLa cells in text books. Professional articles are a different story). At least from Ms Skloot’s telling of it, Deborah, Henrietta’s daughter, and her siblings did seem to find a measure of peace through Skloot’s investigation which is good especially in how wronged they felt (and rightfully so).
I’m not sure at all how I feel about some of the questions raised about today’s medical ethics (you can not go back and apply today’s HIPPA laws and patented cells lines to the days when the cells were first harvested). I’ve volunteered for medical research (but only very occasionally, women are rarely taken as research subjects unless it’s female related). Sometimes you’re paid, sometimes not. What would happen to science if there had to be a pay out to every volunteer? It’s a question not to be taken lightly. Would it bankrupt the whole system? Or, like in the case of the Lackses who have very little, would it be fair compensation. I don’t know the answer to that. I’m not sure anyone does. I know I’ve always been bothered by funeral homes making extraordinary sums for tissue harvesting for donations while the family sees none of it. Is this any different? I guess you’ll have to read the afterward of the book and wrestle with these questions yourself. I did find it very telling as to where humans put their priorities though when the book talks about animal rights in the lab getting protected in 1909 and we didn’t even start talking about humans in the same way until 50 years later and legislation wouldn’t follow for another couple decades.
Anyhow, to sum up this rambling mix of review and personal experience, go read this book. If you have any interest in science research, social injustice and medical ethics, this is an absolutely fascinating book that will amaze, frustrate and infuriate you as you go along for the ride.