In college, I taught a colloquium course to incoming freshmen to let them know about the resources and opportunities available to them on- and off-campus. We also encouraged freshmen to read a book that was selected every year to be the freshman book of the year, where we often invited the author and other people affiliated with the book to campus in a series of events.
One of the years that I taught this colloquium, The Immortal Life of Henrietta Lacks was our book. I was really keen on reading it, as a pre-med student who had just started developing an interest in social issues. (I was becoming, as the kids may say, woke.)Alas, while I worked hard to secure copies of the book for all of my students, and encouraged them to see author Rebecca Skloot and relatives of Henrietta Lacks when they were on campus, I never managed to read the book myself. (I gave my copy to a student.) So, I was really glad to have the opportunity to read a book that everyone loved that year and in the years that followed…
This book is just so… crucial. Henrietta Lacks came to Johns Hopkins to have her cervical cancer treated. This, in and of itself, was a loaded decision because Hopkins was the only hospital in Baltimore that admitted black patients at all, but there were already stories of black patients being taken advantage of by hospitals around the country (like the infamous Tuskegee syphilis trials). On top of that, even if a doctor did treat patients well, they often didn’t take the time to make sure patients understood what was being done to them, which is a huge problem when you are a hospital that serves the poor and underserved like Hopkins, and most of your patients aren’t literate, let alone have any kind of basic medical knowledge.
So some of Henrietta Lacks’s cervical cancer cells were scraped and saved to culture without her permission. This was a fairly standard practice at the time, and this book really details how far we have come as far as ethics in medicine. And medical ethical practices have changed drastically since Henrietta Lacks sat scared in a hospital.
The real crux of the book is this: How is it possibly okay that the biomedical field and industry have benefited so much – in many ways but especially financially – from the HeLa cell line, named for Henrietta Lacks (as was the naming convention at the time), but Henrietta and her family were unable to afford basic health insurance?
Much of the book revolves around author Rebecca Skloot trying so hard to get close enough to Henrietta’s family as to get their story. Henrietta Lacks had not been thought of as a real person for so long, the taking of her cells thought to have had no consequence to the point where her name was released without much thought that her living family would be affected. Her family was so taken advantage of that they were, understandably, not open to sharing their story with some white reporter.
And Rebecca Skloot understands that. I really appreciated how aware of her privilege she was throughout the book, and how she really worked to make sure that the Lacks family was treated with respect, that their story was told. She wanted Henrietta Lacks the woman to be as famous as her immortal cell line.
As educational about HeLa, biology, medicine, and the ethics that tie all of these together this book was – and you will learn so much about the history of all 4 – I think that Skloot’s focus on how race played an unfortunately large role in them all is really important. It would have been so easy for her to just trace the history of biomedical ethics and the struggle to get a surviving cell line and how things have changed in medical technology since pre-HeLa.
But it’s because Henrietta Lacks was a black woman, easy to take advantage of because of her race. It’s because black Americans heard hospitals like Hopkins were literally snatching black people off the streets for their experiments, and they weren’t too far from the truth. It’s because they suspected that black Americans, if they were able to get treated in a hospital at all, which was difficult enough as it was, were being left to die because doctors didn’t care enough, which was too close the truth.
Meeting Henrietta’s daughter, Deborah, and the rest of her family, and seeing how the HeLa story had changed their lives for the worse, when it should have done anything but, is heartbreaking. And I finished the book so frustrated with how things were and how these people were treated, and just hoping that the publication of this book and the positive press it gleaned since has helped Henrietta’s family.
The book wasn’t perfect. At times, I felt frustrated and annoyed by Rebecca Skloot. But at the same time, I think I appreciated that she is flawed. She has no real right to be the person responsible for telling Henrietta’s story, and I think she knows that. But she cared enough to step forward to give the Lacks family a voice because they didn’t have anyone else fighting for htem.
I highly recommend reading this, because you’ll learn so much history. You’ll learn about biomedicine and ethics, yes, but you’ll also get a glimpse of where persisting beliefs held by the African-American community regarding healthcare come from and the obstacles that they have been, and unfortunately continue to be, overcoming.
Disclosure: I received a copy of this book from Blogging for Books in exchange for my honest review.