Author Topic: The Immortal Life of Henrietta Lacks by Rebecca Skloot ~ Oct Book Club Online  (Read 31641 times)

PatH

  • BooksDL
  • Posts: 10921
The Book Club Online is the oldest  book club on the Internet, begun in 1996, open to everyone.  We offer cordial discussions of one book a month,  24/7 and  enjoy the company of readers from all over the world.  Everyone is welcome.

October Book Club Online

The Immortal Life of Henrietta Lacks
by Rebecca Skloot

"There's a photo on my wall of a woman I've never met, its left corner torn and patched together with tape.   She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red.  It's the late l940s and she hasn't yet reached the age of thirty.  Her light brown skin is smooth, her eyes still young and  playful, oblivious to the tumor growing inside her-a tumor that would leave her five children motherless and change the future of medicine." -Rebecca Skloot

http://www.nytimes.com/2010/02/07/books/review/Margonelli-t.html?pagewanted=all&_r=0

http://www.biography.com/people/henrietta-lacks-21366671

http://www.lacksfamily.net/

         Part One: LIFE  Oct. 1-8
       Part Two: DEATH  Oct 9-21
       Part Three: IMMORTALITY
           Chapters 23-31 Oct 22-?
           Chapters31-38

Discussion Leaders: Ella, Adoannie, PatH 


PatH

  • BooksDL
  • Posts: 10921
What is G6PD-A, and why does it matter?  The only important thing for this story, is that it's an easily measured genetic maker which occurs only in Blacks, and is rare, even among them.  So once you see it in all your cell cultures, your problem is obvious.

G6PD is an enzyme important in cell metabolism, especially in red blood cells.  There are several variations in humans.  Some of these are harmful, leading to aplastic anemia, but there are also some variations that don't matter--they all work well--and G6pD-A is one of them.  It doesn't matter to you which one you have, any more than it matters what blood type you are.

BarbStAubrey

  • BooksDL
  • Posts: 11265
  • Keep beauty alive...
    • Piled on Tables and Floors and Bureau Drawers
Remember all the movies - I do - they were B movies of 'mad' scientists or some were melodramatic stories of scientist using their own bodies to try out various experiments - there would be the caring nurse, who had usually more on her mind than just caring, trying to get them to stop before they would be too ill or had gone mad - or there would be fellow scientists talking him up as a hero for doing what they were not willing to do  -

Interesting how they were always scientists and not doctors - I guess because to most people even into the late 1940s science was a suspect discipline and not to be taken seriously - sort of a Frankenstein result was the way folks thought of any science - now of course we can laugh at ourselves where as then, we laughed at the idea of taking scientists seriously and after we heard of the atom bomb scientiests were still not revered but no more slap stick comedy about the profession. By then they were mentioned with awe in our voices.

It was never the doctors who were dismissed as crack pots or engaged in dangerous things but then we depended upon Doctors for what they could do and saw them with their little black bag and stethoscope not as someone in a white coat behind a table filled with glass tubes and dishes trying out experiments.

I'm thinking back, as a kid and I do not think anyone questioned anyone who had a collage degree - but then we forget - until the GI bill allowed hundreds of thousands of returning WWII vets to attend collage only about 5% of this nation had a collage degree - did you know today according to the U.S census about 43.8 percent of African immigrants achieved the most college degrees, compared to 42.5 percent of Asian-Americans, 28.9 percent for immigrants from Europe, Russia and Canada and 23.1 percent of the U.S. population as a whole.

All to say there was some sort of unspoken and maybe unknowing privilege we gave to anyone who attained higher education so that I can see how those working with the cells never thought to ask and how at the time Henrietta or her family never imagined asking or had any concept of the wealth that would be created by others from the cells. Where as today there is more common knowledge among all of us with the increase in education in this country and so our sensibilities have changed.

Saw the documentary about Nikola Tesla last night and he too was not interested in money as he was developing what he imagined. He was so driven to find answers he ended up having a nervous breakdown. My take is the wealth that was the outcome of Henrietta's cells was not even a speck of dust in the eyes of those who were first seeing and using these cells - I bet the wealth caught them by surprise and the profits grew like they did for Tesla who was ignorant of business, appearing cavalier with a contract he had with GE giving them more of the profits. Tesla had no legal or ethical advisors where as these doctors and scientists would be called to task by their own regulations. And the resulting profitable Business - the only regulations there is what the Federal Government could negotiate.  Hind sight, once the genie is out there is no stuffing it back. Today it has gone so far the other way - seems folks will not do anything without receiving compensation.   
“A man should hear a little music, read a little poetry, and see a fine picture every day of his life, in order that worldly cares may not obliterate the sense of the beautiful which God has implanted in the human soul.” ~ Goethe

bellamarie

  • Posts: 4092
Thank you PatH.,  it puts it all into perspective.  It had to be reassuring to Hayflick to have the explanation of the culture being contaminated with the HeLa cells, after his wife confirming to him it was his daughter.

Barb, you are so on point in mentioning back then the money was not of their thought and priority at the time they used Henrietta's tissue .  It did indeed become it in the not so distant future, as it always does seem to. 
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

ANNIE

  • BooksDL
  • Posts: 2977
  • Downtown Gahanna
    • SeniorLearn
Sorry not to be commenting much but my DH has some kind of virus which has kept both of us up the last two nights plus we have been watching all the baseball games.  Buuuut!  I have truly enjoyed all the posts. 

BARB, loved your comparisons of Tesla and the scientists in the book.  Yes, money really didn't count much in the beginning. It was the huge number of experiments that could done because of the huge number of HELA cells being reproduced or produced??.
About our knowing more in today's world than they knew back then. You should read the article in National Geographics about what science is doing with DNA.  It's called CRISP and I bet if we Googled it we could just read about right here.😄😄
"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

PatH

  • BooksDL
  • Posts: 10921



Here is Annie's 6 foot robot.  Her grandson is inside, talking to his grandfather.

BarbStAubrey

  • BooksDL
  • Posts: 11265
  • Keep beauty alive...
    • Piled on Tables and Floors and Bureau Drawers
A Dalek - Love it - what fun -
“A man should hear a little music, read a little poetry, and see a fine picture every day of his life, in order that worldly cares may not obliterate the sense of the beautiful which God has implanted in the human soul.” ~ Goethe

ANNIE

  • BooksDL
  • Posts: 2977
  • Downtown Gahanna
    • SeniorLearn
Yes, he has been a big part of our lives for the last three or four years!  We break him down into four pieces, load him into our van and take him anywhere someone wants to show him.  Did I mention that he went to the Dr Who 50th Anniversary Convention in Atlanta in 2013, or was that 2014?  Well, lots of pics were taken and up on the internet!  He was the hit of the ball! Hmmm, my memory is getting spacey! 😀😀😄

"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

ANNIE

  • BooksDL
  • Posts: 2977
  • Downtown Gahanna
    • SeniorLearn
PatH, I just sent you a link to the DNA article in National Geographic asking you to post it here for those who are interested.  And it's being tested by something called CRISPR and that's explained in the article.

If you read it, keep scrolling as there are pictures too plus a long story and more links to what it could mean!  ENJOY!!!😋
"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

PatH

  • BooksDL
  • Posts: 10921

BarbStAubrey

  • BooksDL
  • Posts: 11265
  • Keep beauty alive...
    • Piled on Tables and Floors and Bureau Drawers
Our entire body is bits and parts - for a while in a design class - would you believe an art design class at SCAD my grandson was working with the House of Yves Saint Laurent designing body parts - they see a future in designing and manufacturing attractive body parts - starting with artificial limbs. 
“A man should hear a little music, read a little poetry, and see a fine picture every day of his life, in order that worldly cares may not obliterate the sense of the beautiful which God has implanted in the human soul.” ~ Goethe

bellamarie

  • Posts: 4092
Annie, Thank you for sharing a pic of your robot.  I would never have imagined it looking like that, a mix between Darth Vadar and R2D2.   
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

BarbStAubrey

  • BooksDL
  • Posts: 11265
  • Keep beauty alive...
    • Piled on Tables and Floors and Bureau Drawers
 ;D  :D  :) It is a Dalek from Dr. Who, the series on PBS - been on PBS every year since 1963 with many Famous British actors playing the part of Dr. Who -



Which of the actors was your favorite - I liked Christopher Eccleston - I thought he was a little bit in love with Rose which of course couldn't happen but he was tender and at times he appeared to be smitten with her. I did not start to watch till the early 80s when Peter Davison played the Doctor which was fun since he still looked so much like Tristan Farnon- I do not think he had the Daleks while he played the Doctor.

These are the actors who played the Doctor - which of them was your favorite Doctor Who.

    William Hartnell (1963–66)
    Patrick Troughton (1966–69)
    Jon Pertwee (1970–74)
    Tom Baker (1974–81)
    Peter Davison (1982–84)
    Colin Baker (1984–86)
    Sylvester McCoy (1987–89)
    Paul McGann (1996)
    Christopher Eccleston (2005)
    David Tennant (2005–10)
    Matt Smith (2010–13)
    Peter Capaldi (2014–present)

“A man should hear a little music, read a little poetry, and see a fine picture every day of his life, in order that worldly cares may not obliterate the sense of the beautiful which God has implanted in the human soul.” ~ Goethe

BarbStAubrey

  • BooksDL
  • Posts: 11265
  • Keep beauty alive...
    • Piled on Tables and Floors and Bureau Drawers
Found these



And this - Henrietta was a pretty lady.

“A man should hear a little music, read a little poetry, and see a fine picture every day of his life, in order that worldly cares may not obliterate the sense of the beautiful which God has implanted in the human soul.” ~ Goethe

ANNIE

  • BooksDL
  • Posts: 2977
  • Downtown Gahanna
    • SeniorLearn
BARBARA, couldn't resist answering your question! 😊😊
Tom Baker and Matt Smith

Don't you love that headstone!!!  They wrote Henrietta's whole story on it!

BELLA, I read somewhere that the two robots' (R2D2 and 3CPO, from Stars Wars) were actually based on the Dalek!

"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

Ella Gibbons

  • Posts: 2904
Fun stuff to look at, but let's get back to the book.   I read that  the scientists using tissue samples have made some historic discoveries, cigarettes cause lung cancer, and that normal cells die but cancerous cells don't.   etc., etc.,(pg.139)

I've missed something I think.   Why is it that cancerous cells don't die?  Is that why Henrietta's cells kept living and growing. What is different about her cells than other cancerous cells?

bellamarie

  • Posts: 4092
Ella I think we tackled this question earlier and it was a bit of a phenomenon. The Lacks family being a faith filled family, credit it to God wanting to give the world a way to cure diseases through their mother's cells.   

Why didn’t Henrietta’s cells die like all the other cells before them?
That’s still a bit of a mystery. Scientists know that Henrietta’s cervical cancer was caused by HPV, and her cells have multiple copies of the HPV genome in them, so some researchers wonder if the multiple copies of HPV combined with something in Henrietta’s DNA caused her cells to grow the way they did. Henrietta also had syphilis, which can suppress the immune system and cause cancer cells to grow more aggressively. But many people had HPV and syphilis (particularly in the ’50s) and their cells didn’t grow like Henrietta’s. I’ve talked to countless scientists about HeLa, and none could explain why Henrietta’s cells grew so powerfully when others didn’t. Today there are other immortal cell lines, and it’s possible for scientists to immortalize cells by exposing them to certain viruses or chemicals; but there still hasn’t been another cell line like HeLa, which grows in a very unique way.

http://rebeccaskloot.com/wp-content/uploads/2011/03/HenriettaLacks_RGG_convo.pdf

WOW!  Barb, what a great find.  Henrietta sure was a very beautiful woman inside and out.

Annie, Interesting about the two robots being Dalek!  I know nothing about robots.

Are we ready to move on to Part 3 of the book? 
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

PatH

  • BooksDL
  • Posts: 10921
Bellamarie:
Quote
Are we ready to move on to Part 3 of the book?
I think so.  Let's divide it in two.  I'll figure out exactly where shortly, but roughly 50-50.

bellamarie

  • Posts: 4092
Okay, thanks PatH.
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

PatH

  • BooksDL
  • Posts: 10921
Ella:
Quote
Why is it that cancerous cells don't die?
A big factor is something called telomerase.  When cells divide, the ends of the chromosomes tend to get damaged or stick to each other.  They are protected from this damage by having something called telomeres on the ends.  These are neutral bits, that aren't needed genetically, and serve as protection.  Any damage happens to the otherwise unneeded telomeres.  Eventually, all the telomeres are used up, the chromosome is damaged, and the cell dies.

Embryo cells are doing a lot of dividing, and they have something called telomerase, that can add more telomeres back on, allowing the cells to divide more times.  As a person grows to adulthood, the telomerase is turned off where it isn't needed, remaining active in some cells that still divide a lot, like skin cells.

It's not turned off, or is turned back on, in cancer cells, and this is why they can keep on dividing.

PatH

  • BooksDL
  • Posts: 10921
The possible cancer drug heavenseden mentioned some while back works by interfering with the telomerase in cancer cells.

ANNIE

  • BooksDL
  • Posts: 2977
  • Downtown Gahanna
    • SeniorLearn
PatH, my daughter read this book earlier and this morning when she called me from her home in Ithaca,NY, she explained the telemorese to me and the junk DNA and how it works in our bodies. She is going to read that article that you put up the link, while she' s on vacation next week. 😋😋
I will be reading part 3 over this weekend!  Well, the first half!  😊😊

Ella, this one of the best books we have discussed in a long time! With Pat's on point scientific helpful explanations using simple language that we can understand, I am truly enjoying it.  Wish our lurkers would speak up! 
"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

bellamarie

  • Posts: 4092
Annie, I agree I am enjoying this book too.  It reminds me of reading the book on the ebola virus.  Very informative.
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

PatH

  • BooksDL
  • Posts: 10921
It's a remarkable book in that the author does an equally good job on the scientific part and the human story.  And in this next section we learn just what Skloot was getting into when she tried to get the personal side.  We see the events that made the Lacks family so unwilling to talk, how poorly they were served by anyone they had to deal with, how little information they were given, and how poorly equipped they were to understand it in the technical way it was given, the emotional devastation that some of them felt from what happened to them.

ANNIE

  • BooksDL
  • Posts: 2977
  • Downtown Gahanna
    • SeniorLearn
As you all know, Ella asked PatH and me to continue the discussion if she got weak.   Well, with her falls, she has gotten weaker and PatH and I will be here to discuss the rest of the book.  Please keep Ella in your good thoughts and prayers. 🙏💕🙏
"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

PatH

  • BooksDL
  • Posts: 10921
Ella did the hardest part--picking the book.  She has a sense I don't for seeing what books will be great for discussion.

BarbStAubrey

  • BooksDL
  • Posts: 11265
  • Keep beauty alive...
    • Piled on Tables and Floors and Bureau Drawers
these are the times when I wish we lived closer to each other - so much love in my heart for Ella - and so many great books Ella has arranged for us to read - her choices never disappoint and she gives so much care to a discussion, rallying everyone to share their thoughts. Thanks Pat and Annie for continuing her work - as usual the books Ella brought to us had far more than the story of who did what, when.
“A man should hear a little music, read a little poetry, and see a fine picture every day of his life, in order that worldly cares may not obliterate the sense of the beautiful which God has implanted in the human soul.” ~ Goethe

PatH

  • BooksDL
  • Posts: 10921
Ella has a whole lot of prayers winging their way to her from all of us.  Hang in there, Ella.

PatH

  • BooksDL
  • Posts: 10921
One thing that stands out in this section is how poorly the Lacks clan was served by the medical profession, both in their ordinary lives, and in their interactions with the professionals studying Henrietta's cells.  Notice the many ways they were shortchanged.  How different would this have been if they had been white and middle class?  How different would it be now?

ANNIE

  • BooksDL
  • Posts: 2977
  • Downtown Gahanna
    • SeniorLearn
Good question, PatH, and one that I think we here might want to discuss.  When you read the book and know that the Lacks family were undereducated and very poor and Black, one almost has to assume that if they had been white, they would have been listened to and cared about much more than they were.  I believe that the writer paid more attention to them and even helped them try to understand the HeLa cells and their mother's contribution to our society.  I am not very far into our assigned reading as I am really trying to learn just what all this means. 

Think of poor Deborah back then trying to figure out why her mother's cells were so important to the world.  And her studying about the cells and writing a journal on what she thought of how her mother might have been treated, did she know about her cells had celebrity status before she died?  I seem to remember Mary Kusick saying that Dr Gey went to Henrietta's bedside and whispered in her ear about the wonderful discoveries  science could make, using her cells.

I am rereading the book as I go and discovering many stories that I'd forgotten.  All the legal happenings and the suing of some of the drs really makes one think and wonder if any of one's own cells have been used after surgery.  But, I would have been informed and asked what I did or didn't want science to do with my cells.  You are so right about NIH and its control of all that it permits to happen in our science
world.  Are their rules now laws? 

When I was a freshman in H.S., my Health and Safety teacher(a nun with a PHD in genetics) taught us about Mendel's peas, which fascinated me.  She also was a baseball fanatic and let us listen to the World Series! ;D ;D   When I was a sophomore, our teacher(a nun with a degree in biology) taught us about the theory of evolution.  She wanted us to understand what it meant so we would be able to converse  about it when we went to college. 
"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

BarbStAubrey

  • BooksDL
  • Posts: 11265
  • Keep beauty alive...
    • Piled on Tables and Floors and Bureau Drawers
Just a thought - I'm thinking others would be given what we would consider more compassionate, humane and professional treatment and with that thought I realized, it would not be the average person but the so called elite. Looking at that, it quickly becomes apparent the upper middle class and wealthy did not get that way or stay in that category without 'smarts' so to speak - just knowing the right person will only go so far - Communication is based on a shared understanding, which is affected by education and exposure to decision making with the belief that things can happen because we can, not only figure it out but if someone figures it out we are capable of understanding. Those with more wealth, beyond money and what money can buy, enjoy a certain expectation of respect and the confidence that goes with the ability to understand new ideas.

I think today the reason we receive a different level of respect and therefore, treatment from our health care is we are more educated and have different expectations - we are not 100% totally dependent on those providing us with health care so that we follow without question anything and everything they say with no thought of personal research or asking for another opinion much less even asking questions.

I am remembering when we were first encouraged to ask questions of a Doctor and to have our list of questions - unheard of even during the early days of my marriage and birth of my first two children - living so far from family I had no idea what to expect - the only women prepared were those who lived near their family and the kitchen talk was Mom's and Aunts, not so much grandmothers who had all their babies at home.

On the Doctor's side - two things - a research doctor is not known for what has been called bedside manner - they do little explaining. Also, few professionals look at their 'smarts' both education and simply living in a different economic environment as making them unique or different and how they can relate more easily to others who may not share their profession but have what they assume is a natural ability to understand and ask questions. They are not so completely dependent, almost like puppets of doing exactly what they are told because they do not understand and do not have the education to understand or to ask questions.

Taking this beyond health care - say in the area of investing - you have to understand how interest works and feel confident that if you are investing money in anything you will understand the professional who can help - How many banks or stock exchange offices do you see in the community is not just because of available wealth in that community but also, because the people living there understand they can add to their wealth and they learn that before most are out of high school. They may not know the ins and outs of the Stock Market but they know it is an investment that can add to their wealth and they are smart enough to understand with guidance. That is not true in low income communities or communities with lower opportunities for education or generations of the kind of 'smarts' that allows you to be more than dependent on those who do have the 'smarts'. 

The the huge issue of introducing smarts into a community has been tackled by many universities - this involved far more than accepting lower test scores in order to assure those with less opportunity are given a chance - it involved tons of special classes before and often during the first year to bring students to a level where they could even function in a collage class. The cost of these special classes as well as the lower tuition was absorbed by the collage.

There is more to the differences in various communities but rather than faulting the profession I think it is as if two cultures came together and the healing culture became aware after the fact that they could have handled things differently but to me I see it more as if 'in the fog of war' and so they reacted with no thought to put themselves in the shoes of the other, the patient much less even have a clue of what those shoes were like. The emotions, capabilities, lack of opportunity with limited smarts in relation to any professional thinking that those shoes held. 

The only saving opportunity for the Lacks was for the family to become dependent on the law and then a new set of dependence but also, hindsight is great and today what happened is only understood by someone who has a sense of entitlement that comes with being born where the opportunity for higher education was expected so that injustice is seen that those without that viewpoint only know of dependence on any professional not as equal who will offer an equal exchange.

Going back to the time when Henrietta was being helped and looking at the differences in poor communities - part of what helped many an immigrant family is they settled where there were more opportunities for various work skills - not only was money available, and yes, they worked exceedingly hard with long hours, but the areas had many middle class and upper middle class to learn there was something to aim for, something to save for and urge your children to take hold in a better life. Where as swaths of the country did not have opportunity for advancement regardless race and so there is a different mindset.

I see the author seeing injustice where the opportunities for the Lacks family was limited by far more than their race. Even we as we read we are questioning how much of our own DNA or cells have been used and for the most part, we are a more educated group of readers - can you imagine those, without our understanding and education even thinking much less questioning such a premise?   

Yes, Annie I think the nuns and the teaching priests get a bad rap - but all we can do is smile and go forward... In fact surprise to me I was a part of a group discussing the ministry as expressed in most churches as compared to the education a minister receives - shock to me the sharing among the protestant ministry that numbered about 20 - they all agreed that in order to graduate any Bible-focused, ministry prep college, the collage or university in order to receive that status was required by the state to teach science so that these minsters were taught the very science they chose to ignore when preaching to their congregations. Those ministers present took this issue into another set of meetings to explore the problem. 
“A man should hear a little music, read a little poetry, and see a fine picture every day of his life, in order that worldly cares may not obliterate the sense of the beautiful which God has implanted in the human soul.” ~ Goethe

bellamarie

  • Posts: 4092
PatH., those are very legitimate questions you ask.  My heart just goes out to the Lacks family as I am reading this section.  It's very difficult for me imagining how Henrietta's daughter was so very concerned that they were drawing the blood because they wanted to see if any of her children or husband carried the cancer.  How awful it had to be just going there to let them draw the blood, then to wait and wait for the results which never came.  Then to receive a phone call asking for yet more blood.  She clearly had NO idea why they were taking their blood.  The fact they weren't more clear and honest with this family just breaks my heart.  It's difficult enough even in today's world for some people to speak up and ask questions to your doctor or anyone in the medical field, let alone being black, poor and uneducated back in those days.  Gosh this book has at times depleted me emotionally and as you can see, I put it down and let it sink in and fade before reading more.  How difficult it had to be for Rebecca the author to sit with this family and learn first hand, seeing their raw emotions as they told her their story about such injustices.  I'll stop here and check back in tomorrow since I have to prepare for my CCD lesson for tonight. 

Please let Ella know she is in my daily thoughts and prayers, and to get plenty of rest to recuperate.  She is truly a gem to our discussion group and will be missed.  Til her return, thank you Annie and PatH., for filling in for her. 
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

PatH

  • BooksDL
  • Posts: 10921
Bellamarie:
Quote
It's very difficult for me imagining how Henrietta's daughter was so very concerned that they were drawing the blood because they wanted to see if any of her children or husband carried the cancer.  How awful it had to be just going there to let them draw the blood, then to wait and wait for the results which never came.  Then to receive a phone call asking for yet more blood.  She clearly had NO idea why they were taking their blood.  The fact they weren't more clear and honest with this family just breaks my heart.
That seems to me to be one of the worst lapses.  If they had paid any attention at all to her, they should have realized what she was thinking, and could have reassured her.  I don't blame them for not bothering to tell her all about their research, but leaving her in suspense through a misunderstanding was plain wrong.

PatH

  • BooksDL
  • Posts: 10921
Barb, here's an odd way the poor health care system limited the Lacks family.  Most of the family had hearing problems, but none of them seem to have been treated, or given hearing aids until they were adults.  This made it harder for them to learn in school, and more likely to drop out, and the less education they had, the fewer opportunities they had.

One person who gave teacher nuns credit was my husband.  When he started college on the GI bill after WWII, a housing shortage at the University of Illinois meant that he had to take the first year at a local Catholic junior college.  The rest of his life he was grateful to the formidable, fearsome old nun whose killer rhetoric class taught him how to express himself well in writing.  He wasn't one of those scientists who don't write up their work because they can't write.  (It's still a pain, though.)

BarbStAubrey

  • BooksDL
  • Posts: 11265
  • Keep beauty alive...
    • Piled on Tables and Floors and Bureau Drawers
Yes, I remember that as a kid - not just hearing but eye sight as well - I remember when they finally had free eye examinations at the local firehouse and than later in schools - a tax dollar initiative - so again according to the kind of job opportunities in the area that allowed for a greater tax base the more services - I bet from the look of the cemetery that would have been an issue where the Lack family lived - It wasn't till my youngest was in grade school in the mid 60s that there were any free hearing tests offered usually in grade school - however, we had the kind of income that allowed for pediatric care from birth.
“A man should hear a little music, read a little poetry, and see a fine picture every day of his life, in order that worldly cares may not obliterate the sense of the beautiful which God has implanted in the human soul.” ~ Goethe

ANNIE

  • BooksDL
  • Posts: 2977
  • Downtown Gahanna
    • SeniorLearn
I remember that, as a volunteer at my kids school, I was on the hearing test team (in the early '60's). When we moved to a new school district, eye check-ups were given also.
And both of my boys(at age 6) were referred for further tests at The Ohio State University. They had spots behind their eyeballs!  Inherited from their dad!😋😋

Okay, back to our book!  And the new laws imposed by NIH and more suggestions given to the
AMA that maybe they should require new Dr's to pay closer attention to the HIPA oath that they
took on becoming doctors!

Off to an appointment! Back later!
"No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth." Robert Southey

bellamarie

  • Posts: 4092
Annie, I just finished chapter 26 Breach of Privacy, which was dealing with the new laws. 

Gosh, it seems the Lacks family just could not catch a break, in being able to learn about things in the time frames that may have made a difference in them being able to sue Hopkins, or any of the doctors.  I could barely get through reading the part where Deborah got her hands on the book Gold had written, and it not only detailed Henrietta's medical records, but the extent and graphic description of the autopsy.  I can see how Deborah would fall apart, not be able to sleep, and cry endlessly.  What a horrible nightmare it was for her.

Seems these doctors, scientists and writers all can remember everything, yet can't remember where they got Henrietta's medical records or her personal picture.  This is deplorable how this family was violated.  This last sentence seems like such a catastrophic injustice, 

"And the dead have no right to privacy__even if part of them is still alive."

The next of kin or executor to her estate should have those rights, being either her husband Day, or her children. 

Can we take a moment to let each other know where you are at in the book?  I am beginning chapter 27  The Secret of Immortality.
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

PatH

  • BooksDL
  • Posts: 10921
It's very helpful to know where you are.  I read the whole book rather quickly before we started, since I knew I was going to co-lead, but the details fade.  In re-reading, I'm through chapter 31, the last of the chunk we're on now.

This section has two notable inner journeys: Deborah's attempts to find out more about her mother, come to terms with the past, find some peace for herself and trust for others, and the author's efforts to win the trust of the Lacks clan, and become enough of a part of them to understand what happened to them over the years.

Let's notice how well each succeeds.

bellamarie

  • Posts: 4092
Thanks PatH., I am now beginning chapter 31, so I will finish it and discuss up to this point. 
“What on earth could be more luxurious than a sofa, a book, and a cup of coffee?...Was ever anything so civil?”
__Anthony Trollope, The Warden

PatH

  • BooksDL
  • Posts: 10921
You did a lot tonight.