My book club met twice in March! Such a treat for me. In our discussion of All the Ugly and Wonderful Things, the book The Immortal Life of Henrietta Lacks came up and most of the people at book club were really intrigued by the sound of the book, so we decided on that for our next book.
I had heard of the book before, because in addition to attending the Johns Hopkins University, where the book take place, my family is also from Baltimore. My mom was even neighbors with one of the characters in the book as she was growing up! I knew that she had read and loved the book, and also that a number of my friends had read and loved it. A bunch of my college friends actually read it for their DC based book club a couple years ago!
I’ll get to the synopsis shortly, but I thought I should state my bias ahead of time – I love Hopkins and don’t find most of the book too ethically objectionable. I thought most of the Hopkins representatives including Dr. Howard Jones, the PhD candidate, and former President Brody acted with respect for the Lacks family. Taking the cells without consent is not something that would happen there today, but they are a research institute and I’m sure that with consent, they are testing a lot of cells/organs that we don’t know about or may not be comfortable with if we did know.
So with that, here’s a quick synopsis and then we’ll get right in to the discussion:
Synopsis from Goodreads:
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.
Q: Let’s start with the elephant in the room – was this ethical?
To be honest, most of us were actually kind of OK with the book. Several of us have higher ed degrees in a scientific field, and understand how research facilities function. To us, it was similar to being an organ donor. So we started to talk about ‘What are some bigger ethics questions that have come up in science?’
Here are a few – Do doctors have to tell you if they find something wrong with your baby while you are pregnant? That question led us down the path of do you want to know if your baby may only live to be a toddler? And the question of how widely autism is being diagnosed in recent years. We eventually started talking about how one member of our group worked on early detection of autism through hearing tests! I learned that research is being done to be able to diagnose Autism by a hearing test that determines if there’s a lag in brainwaves between ears – down to the millisecond.
Q: One of our group members began this question with “this may be heartless, but” and finished with the question at hand: How much was the family really affected?
Were they more affected by the hype? Was the real issue not as much the taking of them, but the revealing of the name b/c then they started to be contacted? I think they were affected by the idea that so much knowledge about their mother was out there, but all they had were the medical records. I think it brought their grief back to the surface, and gave them the ability to track down some answers to grieve differently than they had before.
The real issue for me was the health care and the lack of health care that black people had access to. This wasn’t’ even that long ago, but it felt like this book was more about black people in Baltimore than the Lacks family in particular
Q: Thoughts on Henrietta marrying her cousin?
It was funny to see how all the group members reacted to this and we all thought the concept was funny. I also brought up the irony that Johns Hopkins married his cousin, but they never had children, and that’s how Hopkins University and Hospital came to be! When Johns Hopkins died, he had no heirs, so he donated $7 million to start a hospital and research university.
Q: More of a statement — The description of the cancer sounded horrible!
To be honest, we were all amazed at the description of Henrietta’s cancer and her treatment. I don’t want to go in to too much here, because a) it was pretty grewsome and b) this was some of the best writing in the book, so you should hear it from Skloot herself.
Q: (Another Statement) I kind of liked that Skloot wasn’t religious – not because I have anything against religion, but that her disagreeing with the family showed her objectivity.
Rebecca Skloot was SO different from the Lacks family and so we started to think about her as a journalist. We had two thoughts on that. 1) Her differences from the Lacks made the book so much better b/c it showed how hard she had to work to gain trust and 2) how cool would it be to just find a story and run with it. One of my friends, Lauren, said she would love to do it, and Megan, my friend with a recent doctorate degree, said she’d never do it again.
Overall we thought Rebecca Skloot did an amazing job with this one – it could’ve been really boring but she wrote it so well. Chime in in the comments if you have anything to add! And definitely add this one to your TBR list 🙂