~~~Book Club Check-In...Here it is!~~~ — The Bump
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~~~Book Club Check-In...Here it is!~~~

We've read the first four chapters.  We've learned about Henrietta's childhood and a bit about her life as an adult.  We've learned about the struggles doctors had with diagnosing and treating cervical cancer and we've learned about George Gey's work in trying to find and grow immortal human cells.

Here's what I took away from it.  What a short and difficult life Henrietta Lacks had!  She lost her mother, got shipped off to her grandfather's, had her first baby at age 14, and married her cousin who then cheated on her all the time.  Yikes.  Even getting beyond the fact that she married into her own bloodline, I couldn't get over how incestuous their relationship was considering they had essentially grown up as brother and sister since they were children.  It seems like she felt she had no other choice.

How do you feel about the fact that the patients who were receiving free health care were being harvested for samples without their consent?  In some ways it seems like a small price to pay, but it really struck me that the author described the samples taken from Lacks as "dime sized."  That is not a small sample.  It could cause scarring and further problems down the road and it was done as a matter of course and without permission.  

Another thing I found interesting was how instrumental Margaret was in helping George culture cells.  Nowadays, even to a layman, growing such fragile cells in a sterile environment makes total sense.  It's hard to imagine that as recently as the fifties, this was not normal procedure.  I thought it was awesome that Margaret's experience as a nurse helped her teach George about sterilization and how he DIY'ed most of his lab equipment.  They were truly pioneers.



unaveragejaneDecafGrandeMocha

Re: ~~~Book Club Check-In...Here it is!~~~

  • Okay, I know the boards are imploding, but c'mon.

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  • The husband stepping out didn't really shock me. I mean, it sucks, but according to my mom it was kind of the norm even into the forties around here, even with very religious folks, no matter the race. My great grandmother was the product of such an arrangement.

    The unauthorized medical testing does bother me a bit. Sure, it's a small price to pay, but poor people have the same rights as the affluent. Plus I think it probably skewed a lot of data if they were only getting test samples from a small part of the population.

    Shoot, I've got to take a small bump break and go parent for a while.
                 

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    stoneycakesDecafGrandeMocha
  • The husband stepping out didn't really shock me. I mean, it sucks, but according to my mom it was kind of the norm even into the forties around here, even with very religious folks, no matter the race. My great grandmother was the product of such an arrangement. The unauthorized medical testing does bother me a bit. Sure, it's a small price to pay, but poor people have the same rights as the affluent. Plus I think it probably skewed a lot of data if they were only getting test samples from a small part of the population. Shoot, I've got to take a small bump break and go parent for a while.
    This is shocking to me.  Especially having unprotected sex when out of wedlock children were so frowned upon.

  • I am at work today, so I don't have time to discuss for awhile. I just wanted to share that last night when the boards were imploding, I kept thinking-- but who am I going to talk to about Henrietta Lacks!!!  (also I would miss this board)

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    DecafGrandeMocha
  • I had the same thoughts as nikki so I'm glad CD board/book club persevered! Thanks stoney. This book is so hard to put down! The prologue alone got me so interested and also made me want to slap my younger self for not paying more attention when I was a biology major. Did I ever handle HeLa cells when I worked at my school lab? I'll never know now.

    Anyway, I was especially creeped out about it not surprising anyone for first cousins to have a baby together. I was bothered by the infidelity too but kept going back to eewww, they're cousins. Now the unauthorized taking of samples...wow. This hit me because when I worked as a nurse, I would get/witness consents. We had so many forms: invasive procedures/patient privacy/understanding CA carseat law/allowing pictures for the affiliated medical school, etc, etc. All Henrietta signed was for an unnamed general procedure so reading how it used to be done is making me see why there's so many consents nowadays.

    I could go on and on about what we've read so far!
    stoneycakes
  • Ok I totally slacked and just started.
    Did anyone else get an Ebook with black pages and white words? It's messing with my eyeballs.

    If you have a kindle or the kindle app, the background and font colors can be changed.
  • What a short and difficult life Henrietta Lacks had!
    Very true.  Unfortunately, that was a fairly common practice especially with those who were underprivileged in that day and age.  I'm sorry, I'm sort of struggling with using PC terms here.  But yeah, if they shared a room since she was what, 6?  And had her first baby at 14, I wonder how long their "relationship" had been going on, and how consensual it was.

    How do you feel about the fact that the patients who were receiving free health care were being harvested for samples without their consent? 
    I struggle with this one being in the research field.  First off, I absolutely find it wrong and appalling that it was done without their consent.  But I also understand the researcher's thoughts in that day, that these cells are probably going to die anyhow, the patient will never know what happened, and they are receiving free health care.  It's totally wrong.  Of course it's wrong.  And I would be livid if it were me.  But I get how they could have thought that, especially considering the culture at the time (which was also, of course, absolutely wrong.)
    But imagine where we would be if these doctors hadn't taken these steps?  If this somewhat pompous guy hadn't just taken what he needed without asking?  Some of the greatest scientific discoveries have been the product of accidents.  So in the grand scheme of the greater good?  It's a tough call.  Obviously the easy answer would have been to just slip a line into the surgical consent form that stated that samples might be collected.  It's not like most of these people could read anyhow.  (Obviously still not saying that is okay, but it would have been an easy way to cover his arse.)

    Another thing I found interesting was how instrumental Margaret was in helping George culture cells. 
    Yeah!  Go lady!  But was anyone else grossed out that they were eating in the lab?  EWW!  Where was Margaret when THAT was going on?  Do you know how much dander, urine, and fecal matter gets aerosolized from animal cages kept in that quantity?  Blech.

    how he DIY'ed most of his lab equipment.  They were truly pioneers.
    They really were.  These people worked hard.  And they have a lot to show for it.  I'm really surprised I've never heard their names before. 

    My own thoughts:
    It's amazing what a strong person Henrietta was.  She didn't fret, she didn't bother anybody, she just had her H drop her off then went in for her surgery.  Stayed for a few days, then went on home like nothing had happened.  How awful that must have been to hold all of that in.

    The stuff about carrying radium in their pockets, inserting it directly into her!!!!  I know you can't know the risks of something until you know the risks of it, but that is so weird to me to think of these people just carrying it around in their pockets (and later dying of cancer.)  Also, so odd to think of how the same product is used to treat cancer, and also causes it.

    I never knew that Johns Hopkins did free medical care and treatment for those who couldn't afford it.  And walk-in apparently too!  Good for them.  Good. For. Them.
    TTC with PCOS since November 2009
    IUI#1 Femara/Ovidrel (cd 3-7) = BFP, m/c
    IUI#2 Femara/Ovidrel (cd 5-9) = BFN
    IUI#3 Femara/Ovidrel (cd 3-7) = BFP!
    beta #1 11/23 = 270, P4 = 75
    beta #2 11/28 = 2055
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    stoneycakesDecafGrandeMocha
  • Obviously the easy answer would have been to just slip a line into the surgical consent form that stated that samples might be collected.

    Do they do this now TJ? I feel like yes.
    Yep.  But a nurse goes through your consent line by line, not like how Henrietta was handed a page and signed it with no idea what it said.
    TTC with PCOS since November 2009
    IUI#1 Femara/Ovidrel (cd 3-7) = BFP, m/c
    IUI#2 Femara/Ovidrel (cd 5-9) = BFN
    IUI#3 Femara/Ovidrel (cd 3-7) = BFP!
    beta #1 11/23 = 270, P4 = 75
    beta #2 11/28 = 2055
    Our daughter E was born 7/29/2012!
    Surprise, our 2nd daughter P was born 5/22/14!
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    stoneycakesDecafGrandeMocha
  • Oh the other thing that struck me was the separate hospitals.  And that if a black person showed up at a white hospital they would likely get kicked out even if they were dying.  WTF? So much that happened before the civil rights era was disgusting, but that is particularly so.

  • Thank you to whoever suggested this book. I was visiting my parents with the kids last week, and my mom saw it and told me that she had read it recently. My grandmother died of cervical cancer in her 40s, in a kind of similar situation- multiple babies as a teenager, no-good husband, nowhere to go if she left, incredibly fast-moving cancer. I think it's going to give us an opening to finally talk more about what happened to her- my mom never talks about it, and I think she needs to talk about her mother's and her own life as much as I need to know about it.

    I have mixed feelings about the samples, too. They did so much good, and it's not like they have any identifying features, like a photograph or something. "Dime sized" is larger than I expected, though- I had thought that they used cells from the biopsy that they were already taking. The idea of people making money off of them while her family can't afford health care is horrible.

    It's interesting to read about this knowing what we know now about HPV and cervical cancer. As if having a cheating husband wasn't bad enough, to have him give you a deadly disease that didn't kill him, too? That's just cruel.

     

    [Deleted User]
  • Just caught up ... this book has been on my list for a while!

    I remember reading reviews of this book when it first came out, and I was struck by the assertion that Henrietta Lacks and HeLa cells were relatively unknown outside of the medical research community The reviews gave me the impression that her family was unaware of the tissue samples taken and what had become of them (until the author began research for this book), but the prologue gives a different impression, that at some point the family knew about it ... certainly by the time the magazine article had been published in the early '70s. I'm hoping this all gets straightened out as we read.

    I do remember in junior high reading something similar to what the author quoted .... that these cancer cells used in medical research came from a woman named Henrietta Lacks and were called HeLa cells. But no other information provided. Glad to be finally reading her story.

    Where the narrative is going ... does strike me as the kind of practice that would not engender a community to have a trusting relationship with medical establishment, that would only build on negative experiences such as the Tuskegee Syphilis experiments.


  • I tried to pick it up and read it yesterday and it made me super sad. So I'm going to try again tonight.

    Random aside: The author spoke at my grad school, and sadly I don't remember if I went or not, I don't think I did. I think I might go back and watch the video. If anyone is interested pm me and I'll send you the link. 

    I have read the book and have a lot of thoughts about all the questions, so I'll be back later to write them out, whether I can read it again right now or not. 



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    stoneycakesfreezorburnDecafGrandeMocha
  • I can't believe she had syphilis and gonorrhea and they were going untreated. I'm stuck on that.
    I was wondering if they had any home remedies for dealing with the symptoms at all, and how effective they might be. I know next to nothing about this topic.


  • I can't believe she had syphilis and gonorrhea and they were going untreated. I'm stuck on that.
    Yeah.  Obviously she was mistrustful of healthcare.  I can't believe how nonchalant she was about her cancer diagnosis and treatment.

  • edited January 2015
    Great discussion!

    ETA Oops, I didn't mean to post earlier without saying I think part of the reason she may have been so nonchalant about her diagnosis was people just didn't talk about cancer in the past the way they do now. MH grandmother was Henrietta's generation and when she had breast cancer, the grandkids were never told. MH only found out after I noted she had a mastectomy. The fact his grandma was a survivor was never brought up or celebrated the way we would now if it was one of our moms. Hope that makes sense, and that I'm not going off topic too much.
  • It's not surprising really. They were still purposefully giving syphilis to african americans back then. 
    The cancer thing is sad and shocking. I'm sure lack of education had a lot to do with it. 


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    freezorburnDecafGrandeMocha
  • It's not surprising really. They were still purposefully giving syphilis to african americans back then. 
    The cancer thing is sad and shocking. I'm sure lack of education had a lot to do with it. 
    Yeah.  I just learned about this today from googling some info for book club.  What a disgrace to the medical field. It makes me sad that we have so much embarrassing history.

    DecafGrandeMocharedrockmama
  • Did anyone else shudder at the description of the radium treatment? As horrible as it sounded, I bet that was the most rest Henrietta had in her whole life.

    On a lighter note, the Gey Chicken Bleeding Technique sounds incredibly similar to trying to use the snot sucker on my toddler.
                 

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    stoneycakes[Deleted User][Deleted User]freezorburn


  • I can't believe she had syphilis and gonorrhea and they were going untreated. I'm stuck on that.

    Yeah.  Obviously she was mistrustful of healthcare.  I can't believe how nonchalant she was about her cancer diagnosis and treatment.

    I didn't take it as nonchalance so much as just another task she had to handle.
    TTC with PCOS since November 2009
    IUI#1 Femara/Ovidrel (cd 3-7) = BFP, m/c
    IUI#2 Femara/Ovidrel (cd 5-9) = BFN
    IUI#3 Femara/Ovidrel (cd 3-7) = BFP!
    beta #1 11/23 = 270, P4 = 75
    beta #2 11/28 = 2055
    Our daughter E was born 7/29/2012!
    Surprise, our 2nd daughter P was born 5/22/14!
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    imageImage and video hosting by TinyPicimage
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  • I am really loving this book so far. 

    I think that it is so important to read stories like this. Living the life that I do, in the location and time that I do, I don't experience any of these awful things that Henrietta did so it would be easy to take it all for granted. It is really appalling that people had to go into separate hospitals (among many other things) and receive such treatment just based on the colour of their skin. 

    It is really great of Hopkins to offer the free medical care, but I don't think that it makes it okay to take samples from people and use them without their knowledge and consent. Things were so much different back then, and who knows what scientific advances might not have been made if rights weren't violated, as wrong as that is. 

    I think Henrietta seems like she was such a strong woman. She just did what she needed to do, and kept going on despite all of the negatives in her life. I know that I would want someone by my side if I received a cancer diagnosis, I can't imagine dealing with all of that alone. But people can summon great strength when they need to. 


    DecafGrandeMocha
  • Ok, the first two links were about the Tuskegee Study. Is that what you guys are talking about? They weren't giving them syphillis, but they were letting them think that they were being treated and then preventing them from actually seeking treatment when it became available.

    You're right, this is why I'm so bad at history on trivia crack. It was the Guatemalan experiment where the U.S purposefully gave people syphilis and gonorrhea.


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  • Oh, Trivia Crack. I think a lot of my games are going to expire since so much of my online time has been taken up by the New Great Migration.


    km_mdredrockmama[Deleted User]
  • I'm sorry but what book is everyone reading.  I googled Herietta Lacks and found the book called "The Immortal Life of Herietta Lacks".  I have an audible credit and would like to join in if it isn't to late.

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    MapleMomma
  • Yes, that's the book. We just read the first four chapters. I think Stoney will post 4-8 next week. Jump in!
                 

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  • Yes, that's the book. We just read the first four chapters. I think Stoney will post 4-8 next week. Jump in!

    It's posted!
    stoneycakesunaveragejane
  • Sorry I wasn't able to contribute earlier, my brain really just wasn't into real thinking. Lame.

    Thanks to all who voted for this book. It is something I never would have chosen to read, but I'm loving it.

    As sick as the whole first cousins thing was, I actually found it somewhat Romantic. UO right there.

    The unauthorized sample ticked me right off though. I'm sure things like that are why the medical field today is constantly covering their behinds.
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    DecafGrandeMocha
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