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Book Club – The Immortal Life of Henrietta Lacks

I don’t even know where to start with this one.  I thought the book was great.  And that the Lacks family is, to quote Smoochy, “slap-ass crazy.”

I should’ve written this post when I finished the book – back in early January.  But since I didn’t…. Jump in and tell me what you thought about Henrietta, her immortal cells, and her family’s quest for truth and knowledge.

Oh, I do remember one question I wanted to pose…are you surprised at the lack of control we have over our “discarded tissue?”  The fact that someone could use and profit from my cells once I voluntarily dispose of them blows my mind.

Okay, carry on!

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23 thoughts on “Book Club – The Immortal Life of Henrietta Lacks

  1. To answer your questions, this still bothers me and I read the book months ago. Like Deborah came to appeciate, I think the pure progress that can be made with a person’s cells is amazing, but they still deserve to know. Those cells have your dna…they are a part of you. Before reading this book, I didn’t even thinkg about things like that.

    I was and still am disturbed by the incest. I’ve heard of it happening, but my goodness I feel like they were raised as siblings, not cousins, and certainly not friends that should have led to sex and marriage. I know that was just an undertone of the larger story, but it often distracted me from the main story. Especially when the author mentioned their medical issues, and the anger issues of zakuriah (sp?).

    Lastly, I still can’t understand how there has been no compensation of any kind for the family. The least that could happen is Johns Hopkins should provide free medical care for her children. healthcare of any kind should have never been an issue for them.

    There is more I could talk about, but I’ll stop there. Simply put, the book was fascinating to me!

    • The incest just…ugh! I kept trying to explain it away by thinking “well, this happened a long time ago and things were different…” But really? Henrietta Lacks is younger than my grandparents on both sides and I can’t see them being in incestuous relationships, so there goes that theory.

      I think a lot of their issues were definitely related to the fact that their parents were first cousins.

      I didn’t think Hopkins really made any money off the cells. Am I remembering that incorrectly? Gey was just shipping them off for the use of other labs – it was another person (the one that founded a biotech company?) who was charging for the cells.

      Thanks for contributing – I hope we get some more folks’ opinions and input!

      • The book was great. I remember discussing it with a co worker and she told me her parents were first cousins. Awkward. I can’t believe that the family hasn’t been compensated in some kind of way either. I think there lack of education in the past didn’t help. They didn’t know how to articulate themselves well. They also didn’t really know how to pick someone that they could trust.
        The descriptions of how she found the tumor and how the radiology ravaged her body were intense.
        The environment that her children were left to grow in is just shocking. I just can’t imagine anybody being exposed to that life, much less a child. I’m not a science geek, but this whole story is fascinating.
        I honestly wanted more information on the family after I finished reading the book. There isn’t much out there. Kudos to Rebecca Skloot on a fabulous story.

      • I found it particularly sad that no one really seemed to care for or about the children – including their horrid father! I’m not certain what the standard response is when you find out your child is being molested, but I’m pretty certain David’s response was not appropriate!!! Their one aunt – name escapes me – tried, but I think the whole situation was too much for one person to handle well.

  2. I was glad I read this. It made me think about why consent for medical procedures is so important to get and also to make sure it’s understood by the patient. The fact that Johns Hopkins was able to remove cells from her body for research without even trying to explain it just felt wrong.

    That said, while I felt that the family should have been informed about how her tumor’s cells were being used, I didn’t think they deserved compensation at first. The fact that her cells are used worldwide and mixed in with all kinds of patents and stuff like that made it murkier to me.

    I completely agree that the incest was quite disturbing. My closest cousin growing up was male and the thought that they married and had kids makes me ill. I tried not to think about it.

    • Do you think that Henrietta Lacks’ being black had anything to do with the way she was treated? I went into the book thinking that it was a racial issue, but by the time I finished, I thought it was just a perfect storm of coincidences. Gey was taking cells from any patient he could as far as I could tell. Her cells just happened to survive. She just happened to be black…

      • I felt the same way. I went in thinking it was racial by the further along I got and the further away her cells go from Hopkins, it didn’t matter whose cells were giving them billions of dollars.

      • I agree with both of y’all. I went in expecting to be angered by the race-based unfairness of it all but I don’t think it was there. It was just a different time where patients (of all races) didn’t have the rights that they have now.

        The only racial connection that I can make is that because all this happened at Johns Hopkins, we can assume the worse. 🙂 From their lead paint experiments with kids in the inner-city to the kid that was made to fear furry white things, they haven’t earned much trust when it comes to how they deal with poor black Baltimoreans.

  3. The Immortal Life aspect is wrapped up in Scripture. How interesting. There are many perspectives for examinationin this book. But for her preacher cousin to be able to connect the religious with the scientific and use it to soothe Deborah was a highlight of the book for me.

    The incestuous relationship that produced this family seems to be a sound explanation for many of their life issues. Somehwere between limited roots in the family tree and the increased violence and lack of self-control on indiidual levels there is a mix of medications. The children had limited information and limited formal education, so there was sure to be shortcomings all of their lives.

    I thin Johns Hopkins owes monetaty compensation to the Lacks family and recognition and honoring of Henrietta Lacks for her contribution to medical science and Hopkins’ interantional standing as a medical research institution. That would coincide with the original purpose for Hopkins coming into existence.

    I am amazed that there is still so much untold about the HeLa cells. I am also amazed that this is a contemporary issue. This is not 2 or 3 generations removed.

    • Even though Hopkins didn’t profit from the Lacks cells? Those cells have certainly made a profit for someone, but I don’t think it was Hopkins. I do think the family is owed recognition beyond the pitiful attempts documented in the book.

  4. I AM surprised at the lack of control over how disgarded tissue/cells etc are handled! I didn’t know and never really thought to ask. I assumed that a Dr. or hospital had to get permission to use any part of your body removed during surgery. I bet there is wording in the 1000 form you have to sign before any proceedure.

    Anyway….I really enjoyed this book. My heart went out to her family especially Deborah. Not having a mother to raise her really haunter her, her entire life. I felt for her, and hurt for her. She just wanted her Mother so much. Her actions during their travels had me laughing. She was so protective of her Mother’s files, but the paranoia just got the better of her sometimes. I wish that she had gotten any compensation from anyone.

    I do think that family was a bit crazy, and definitely “back woods” thinking. This situation was way beyond their education level. I kept putting myself into the story and wondered how I would handle the news that part of my Mother lived on without the family having any knowledge of it for so long.

    • You’re right – the wording is in there, but it’s all a part of the consent form that patients sign before any procedure. That was one of the questions I posed during our campus-wide discussion. Could I theoretically consent to having a procedure done and NOT consent to a researcher, physician, whomever use and/or profit from my tissues??? There was no clear answer which is troubling.

  5. Something else jumped out at me – at the very end of the book. Do you find it…odd that Rebecca Skloot chose to set up an educational fund for the heirs of Henrietta Lacks with a portion of the monies she has earned/will earn from book sales? Here’s a family who historically does not pursue – for whatever reasons – higher education, yet she sets up an education fund. I questioned the motives behind that – how many of them will really ever touch that money? I felt like she could’ve made another decision – a healthcare fund perhaps – that would’ve better served the needs of this family. Does Skloot, in the telling of the Henrietta Lacks story, take further advantage of the Lacks?

    • But their lack of education is part of the problem. I’ll never fault someone for setting up an educational fund. They need that. She hasn’t said the money would revert back to her if they don’t use it for said purposes or that she would cut off the money at a certain point or only allow it for certain descendants, right? Is it the restriction on the money that bothers you? Like they should be able to use it on things they immediately need? Or not have restrictions at all?

    • I understand why Skloot set up the fund. It’s the same way I think many of us think, that education is KEY to progress. As long as that family remains under-educated they will never be able to move beyond their circumstances. The immediate needs is definitely health care. But without knowledge they could have been the healthiest family around and they would still be poor and ignorant to the ways of the world. At least outside of their own world.

      • I’m not bothered by the fact that she set up an educational fund, I definitely think the Lacks family could benefit from some schooling. Lots and lots of schooling. I’m bothered by the thought that not very many of them will access the fund and Skloot “gets away” with contributing very little back to the family whose story she has surely profited from.

        So yes, I suppose it is the restrictions. I don’t disagree with the fund, but I think Henrietta’s surviving children, grandchildren, etc., had/have some very pressing immediate needs that she could have addressed as well. Henrietta’s surviving children were pretty much lost causes (sorry!) and her grandchildren didn’t seem to be faring much better – wasn’t one of the boys incarcerated? Maybe some of her great grandchildren will break the cycle. I just know that for the majority of my family members – 1st, 2nd cousins, etc. – money sitting in a college fund would not mean a thing. Now if someone wants to fund LG’s education we are so on it!!

    • Yeah, but I think I was hopeful that someone would take advantage of it being htere. There’s always one kid who wants more and I hope that money is there for him or her when they’re ready for it.

      Maybe it would look better if she’d opened it up to vocational schools too? Cause if someone can pull themselves up through that type of training, their kids are a lot more likely (I’d think) to go further.

  6. I was FASCINATED and sickened by the fact that these cells have gone all over the world and made millions of dollars for people and her family is living in poverty. But the science was too much. I thought it was sloppily interwoven with the personal stories as well. It felt very abrupt when those moments arrived. It seemed like Skloot had far more information beyond her depth and wasn’t really sure how to handle it. I get it, but it didn’t make it really easier to read. I was really far more interested in the life of Lacks. I know the story really isn’t there (the disappearing town is BIZARRE!!) but I still felt that void and wanted it filled. For those reasons, the book fell flat for me. I was all in in the beginning but toward the middle and certainly by the end, I was underwhelmed.

    • I felt overwhelmed by the scientic information overload. I agree that she seemed to have “too much” information and not sure of how to edit to keep it from being over the top. I don’t think we needed to know of every scientic accomplishment of every Scientist who touched the HeLa cells.

    • The science didn’t bother me. I enjoyed it. But I was a biology major…I figured it would be more detail than most were looking for – I think my mother made a similar statement when we were discussing the book.

      • Since Skloot was obligated to share scientific information, I expected references to the HeLa cells life span, contamination, uses, their space travel and anything else she could share — briefly. I had the insatiable hunger like Deborah. I wanted to know more about Henrietta, her personal motivations, her activities growing up. Although my jaws dropped at the TOTAL acceptance of incest, I did want to know more about the family. There was too much tedious information about the scientific.

        Also, I think the violence and criminal elements in Zakariyya’s life were a direct result of the incest and a weak father figure. What was his excuse with not protecting Deborah from uncle/cousin?

      • I’m not sure I could’ve dealt with knowing any more about Deborah and the rest of her clan!

        Day-Day has got to be in the running for worst husband/father ever! There is little doubt that his whoring around, contracting and spreading VDs are what caused Henrietta’s cancer in the first place. Then he couldn’t be bothered to raise his own children. Then he couldn’t be bothered to protect his own child. He sucked all around. Pardon my francais!

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