Unsurprisingly, I was completely enthralled by the Immortal Life of Henrietta Lacks. With my background in social work and interest in how libraries and information agencies can be improved as a resource for disadvantaged members of society, this was right up my alley. Side note: I can be a very emotional reader, so if anyone spotted me reading this with a box of Kleenex by my side, that wasn’t because I had a cold. This book had me sobbing many times!
My favorite part though was actually a happier section, Chapter 32, where Christoph Langauer has Rebecca, Deborah and Zakariyya come visit his lab at Johns Hopkins’ so they can see Henrietta’s cells. He is so patient and kind to them, he even spends half an hour drawing diagrams of cells and explaining them. It s also there that Deborah finds out that although she inherited many things from her mother, such as her hair color, she didn’t inherit the cancer, because that was caused by an outside agent (HPV). She is so relieved to find this out, but it got me kind of mad too. I mean, how easy would it have been to have told her that a long time ago, so she didn’t have to worry all the years?
I also think the issue of trust is important. It took Deborah a long time to even take Rebecca’s phone calls, but thankfully Rebecca was persistent. I think it helped that Rebecca wasn’t trying to get anything out of them, besides information, and that only when they felt ready to give it. It really helped that she gave them so much of her time and came to family events and church. I think that helped them get to know her and see she wasn’t one of the bad guys trying to scam them. It will be really good for so many people to read this book and see these people’s backgrounds. I hope it helps us do less “judging a book by its cover” so to speak… for example, getting the background on how abusive and chaotic the Lacks’ children’s childhoods was, I really hope that will increase people’s empathy. Otherwise, people are often liable to see others who are in prison or on Social Security as just bad people or lazy people, but they don’t get the full story. The thing is, I think there is a lack of trust in many communities, especially between the haves and the have-nots. The haves might see the have-nots as being leeches or “working the system” and the have-nots may view the haves as begrudging or looking for ways to stop services. It makes me think how can libraries and information help bridge this gap. This is part of what I was trying to do in my Collection Development Exercise (sorry to keep bringing it up, but I must not have explained it very well considering the grade I got). Since I was including music and literature from different backgrounds, I was hoping patrons would see it as they looked at the materials they were already interested in and then check it out as well.
Another issue that the book raised was of access: although Henrietta’s cells have helped create wonderful advances in science and health, not everyone has access to these advances, because we do not have universal health care. As is stated several times in the book and on the book’s website, many of the Lacks’ children and family do not have any health insurance. That is crazy considering how they could be billionaires if they got payment for Henrietta’s cells. I’m someone who believes certain things is a right for everyone, including safety, nutrition and healthcare. But unfortunately this is not reality, and instead, millions of Americans have no health care. As the book also points out, whether or not someone has health care, they don’t usually even know all their rights or what’s being done with parts of their body that is sliced or sucked out of them. I wonder how can we get more basic information passed on to the general public? It seems most people would not want to know all the details, but at least have some more information. It would be nice if Doctors could spend more time with each of their patients to explain things better to them. As it stands now, it seems it is often up to the patients to seek out information on their own, which obviously some are much more capable of doing than others. It seems like some patients needs their own personal Rebecca Skloot and Christoph Langauer to help them understand the process and navigate the system. And maybe that’s not too much to ask. Perhaps if we a society put more emphasis on treating every human being with respect and dignity, our society would be less messed up and we wouldn’t have to be building so many prisons…instead we could use that money to build more libraries!
There is so much more I could say about this great piece of work but I’ll just end it with saying I’m glad the author also included background in to a lot of the scientists’ lives to help give us a well-rounded view. I think in general there is not necessarily clear-cut “good guys” and “bad guys”, and usually people are just doing the best they can at the time. So many of these scientists weren’t trying to take something from the Lacks’ on purpose, but through circumstance they ended up doing just that. The thing is, now that all this has come to light, it would be nice if Johns Hopkins could apologize (which in their letter they said they would not do) and give some money back to the Lacks. Even if that doesn’t happen though, hopefully this book will enlighten people for the future and help others see how valuable information and education are!
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