Hello, Bookies:
I am fascinated by the scope of this book. Rebecca Skloot is telling three distinct but intersecting stories: the gripping personal history of Henrietta Lacks; the scientific importance of HeLa; and Skloot’s relationship with the Lacks family. This structure really worked for me. Before reading, I was nervous that I would have a hard time getting a toehold in the scientific aspect of this book. Despite its medicinal importance, I’m not sure that I would have found HeLa as interesting were I not intrigued by Henrietta and her family. By switching between the three veins, the science was contextualized by Henrietta’s life and became infinitely more meaningful to me. What did you think? Did this structure work for you?
I’ll start with the human aspect of Henrietta Lacks rather than the scientific, since that is what drew me in. Henrietta’s life was far from easy, even well before she got sick: She was abandoned by her father, became a mother at the age of 14, and then moved to Turner Station with her unfaithful husband, where she was faced with poverty and segregation. Still, Henrietta had a spirit that couldn’t be broken. All of her friends described her as being quick to laugh and having a sunny disposition.
Though I loved the story about going out dancing with her cousin Sadie, the scenes of Henrietta as a mother were the most powerful for me. Sadie suspected that Henrietta waited to seek medical care for as long as she did because she was afraid her treatment would prevent her from having more children. It was heartbreaking when Henrietta realized, while recovering from her hysterectomy, that the surgery had made her infertile—how could her doctors have neglected to explain the nature of the operation to her? As her condition worsened, Henrietta’s doctors forbade her husband, Day, from bringing their children to visit her in the hospital. The image of Day and the children picnicking on the grass underneath Henrietta’s window so she could watch them was poignant and bittersweet. What parts of the book made Henrietta come alive for you?
The importance of HeLa, Henrietta’s immortal cancer cells, can’t be overstated: They have played a vital role in the research of a diverse list of medical conditions. HeLa has been responsible for saving countless lives. As the birth of HeLa unfolds, I was struck by how casually the scientific community handled medical research. Dr. Richard TeLinde, a cervical cancer expert at Johns Hopkins Hospital, needed to grow cervical tissue for an experiment that he hoped would ultimately save lives and prevent unnecessary hysterectomies. George Gey, the head of the tissue culture research at the same hospital, was collecting whatever cells he could in an attempt to create the first immortal human cells. TeLinde and Gey agreed to work together: TeLinde would supply Gey with human tissue, and Gey would try to grow the human cells that both men needed for their research. They reached this decision as easily as if they were trading baseball cards rather than human cells. Did this surprise you? Did you find that the doctors were too nonchalant with their research, or did you think that their attitude was a product of the times? After all, Skloot points out that this was a very common practice. Unable to afford health insurance, many blacks in the Turner Station region used the public wards of Johns Hopkins for medical care. Some doctors felt that harvesting cells for research was a form of payment for their (otherwise free) medical services. What do you think of that argument, and would you feel differently if the doctors had the informed consent of their patients?
I’d really like to hear your feedback about any of these issues, as well as your general response to this first section. Let’s meet back here next Thursday to discuss Part Two: Death.
—Erin
Are you reading this via an e-mail or RSS feed? If you wish to comment, please click here.
Henrietta’s story is such an amazing window into what it’s like to be poor in this country – if she hadn’t intersected with research medicine we wouldn’t have this insider view of health care (or lack thereof) for people on the margins. And although the story starts off reading as if it were from a distant past (kids dropping out of school so they could pick tobacco? seriously?) this is a relatively current story. And it’s appalling!
I read the whole thing in one weekend, so I won’t play the spoiler. But it’s an amazing story, and a great read. It’s got MOVIE written all over it, too.
RH
The part that struck me most about Henrietta’s story was the plight of being poor and black in this country in the south. The saddest part for me was how the educated people in her life took such advantage of the poor and uneducated. The story of Henrietta’s daughter Elsie was heart breaking for me. I cried when I read that after Henrietta got sick that no one ever visited Elsie again. Though a small portion of the bigger story, Henrietta’s love for Elsie during a time when mental retardation was horribly misunderstood shows her strength of character and the depth of her love for all her children. I always was struck by Henrietta’s selflessness and how she suffered silently because she refused to be anyone else’s burden.
I read this section twice because there was so much to take in. Although the technical medical information was interesting I found myself wanting to hurry through it to get to more of Henrietta’s life story.
What made Henrietta come alive? Many things, but most notably Elsie’s story. While reading about Elsie I could only think about my old neighbor, Mrs. Symanski, whose beloved grand-daughter, Mary, was retarded and was institutionalized after her mother died from cancer. Mary and Elsie suffered the same tragic abandonment which neither one of them could possibly understand.
It would be easy to feel sorry for and even pity Henrietta after reading about the situation she grew up in. Ignorance, poverty, discrimination, lack of education, healthcare and hygiene, her living conditions and incestuous family practices; all deplorable. Yet despite all those horrific conditions Henrietta kept her dignity and self respect. She was never self-pitying, resentful, bitter,jealous. She chose happiness over hate and spent her life caring for everyone around her. She was a beautiful and strong person of great character; someone to emulate, not pity. Henrietta offers a great lesson: find joy in the small things like laughing, dancing and painting our toe-nails red.
Henrietta Lacks’ life was a gift to all of us. She deserves notoriety but I am sure she would denounce it. I look at my own healthy children who never had to fear Polio or many other illnesses because of Henrietta Lacks and I will always be grateful for her.
Posted by: chris |
The parts that make Henrietta come alive the most for me are, yes, the descriptions of her as a mother (especially with Elsie, oh my goodness) but also the stories of how enchanting and sexy she was. As a white person, I love hearing stories about the African American race that focus on the spirit and personalities of the people. That’s just as important as the big picture hardships that they’ve gone through. I loved that she wore pressed suits, never wore pants, was a beautiful and sassy woman, and had men chasing her around all her life. We are so lucky to have that kind of insight into her life. I like the idea that she is willing her story to be told beyond the grave.
As far as the ethics of her tissue being taken without her consent…I have to be honest in saying I don’t feel that torn about it, which I know is kind of contreversial! I just agree with the doctors when they say they were taking tissue in exchange for free health services. Trust me, if I could donate tissue in exchange for free and fair (which it seemed was the type of treatment Henrietta was receiving)medical attention, I WOULD! Now as far as how great her doctors were at treating her, that’s another questions – but we all know of doctors who are idiots…
What really makes me sad about her tissue is the way her family was harrassed and used and taken advantage of. If the medical community is not going to give that family anything they should be expecting anything from them either. But I guess that’s where the ethics of taking advangtage of the poor and uneducated really hits home for me. Hearing about Skloot’s first interactions with Debra makes me ache. I can’t wait to hear more about her. I hope that this book really brings that family solace. What if it brings them more unwanted attention?
RE: Did you find that the doctors were too nonchalant with their research, or did you think that their attitude was a product of the times?
I didn’t find the attitude to be nonchalant — single-minded, maybe, but not casual. I’m sure to those engaged in research, samples do tend to become just supplies. But when you consider the millions of cell lines that died off, the passion for continuing the work is even more impressive. Persistence in the face of that much failure is mighty admirable – and the stakes were so very high.
The controversy over informed consent is a bit of a straw man, I think. So if someone had put a piece of paper in front of Henrietta before the surgery and asked her to sign it, would she have been in any way “informed”? Sure, she would have signed it. But that doesn’t mean she would have been informed. It would have been a mere formality anyway – the vast majority of people who signed such a consent form would not have contributed anything of value. It was the luck of the draw that her cells turned out to be the “immortal” ones. And remember they were her CANCER cells, not her normal ones, that lived!
This doesn’t mean I agree that people who get free health care should be used as guinea pigs — far from it! And it’s not as if Gey took her cells and made a fortune off them. It was his work that made it happen. (The Mo story later is different – I think he DID deserve compensation. But I’m getting ahead.) Anyway, I started the book assuming the author would win me over and make me come to believe the Lacks family had been treated poorly by not having shared in the wealth. But I never did come to that conclusion.
I really like this book so far. The structure works for me but mostly because of the timeline at the start of the chapters that helps me keep things straight.
I have to disagree that this story is any kind of window into what it is like or what it was like to be poor or black in this country. While it may provide a glimpse of Henrietta’s life and the tribulations that she faced, I don’t think people should walk away with generalizations based on this book. Furthermore, while Henrietta and her family may have been materially poor, from the description of this author, it seems that they had many riches that we lack in our society today – a sense of family, of support, of generosity. It’s sad but it seems to me that our wealth has not made us rich.
I agree with the other posters that the stories of Henrietta and her family made her most real to me. The courage and heartache it takes to realize that you can’t care for your own child is tremendous. I felt most connected to Henrietta when she made it a priority to visit Elise on a weekly basis.
I absolutely disagree that the Docs were being nonchalant about their research. Trying to force our own ethical standards on individuals who lived half a century ago is unfair. They do not have the benefit of our current understanding, education or training. While, personally, I am not a big fan of how they treated Henrietta, I can in no way blame the docs. To my understanding and the author’s, they gave Henrietta the same treatment they would have give a white person. That was a vast improvement over how Henrietta would have been treated if she had been born a generation or two earlier.
Overall, I really like the way the author is intertwining the medical and personal. It’s a good book so far and fascinating to read about the history of the HeLa cells.
Wow! What a page turner. I only downloaded this book today and can’t put it down. The author has really given a lot of background on poor Henrietta from a time not many remember. The plight of the poor and colored was truly terrible.
I am looking forward to the next part!
Having just finished reading Mudbound, which was a story of families from Mississippi and racial differences between whites and blacks back in the forties, it gave me a better understandng of where I think Henrietta was coming from. She seemed very accepting right from the start as she started treatment and certainly did not ask questions. It was a mind-set back then.I think she was just grateful she was being treated, she was not going to make any waves. Today,it would be unheard of to prohibit someone’s children from coming to see them especially if they were so sick and probably not going to survive. But if the physcians were white, Henrietta and he husband would have never argued with them.
I was not suprised at the doctors nonchalant attitudes regarding research back then. I think not only were you dealing with times where government regulations were not what they are now regrding research,but also the thinking that because they were treating the indigent, they, the physicians, were intitled to take what they wanted from them in return. Sort of a barter system only just one party knew they were particapating. That party was the physicans.
I work for a large medical practice that is involved in many clinical trials. We have a large research department. There are so many boards governing these studies now, so many forms to be filed just to do anything,a million hoops to jump through, just to have the patient step in the door,that it would be very difficult to do this sort of thing today.
What an amazing story to tell! I am really enjoying this book thus far, and I have to say that everything I like about it is driven by the author’s passion for the story.
Henrietta comes to life in the author’s description of her as a deeply caring and selfless woman. She seems to accept the life she has been dealt, without remorse or bitterness. She makes the best of each situation, drawing from her own inner strength. She finds reason to laugh and enjoy simple pleasures.
Along with Roseann’s post, I did not find that the doctors were too nonchalant with their research. I also admired their perseverence.
This story raises a lot of questions, doesn’t it? I’m anxious to read Part II.
The structure of the story definitely works for me. This is not a book I would normally have chosen to read so I wasn’t sure what to expect. I am enjoying learning the medical history and being part of the author’s search for the true story. Henrietta’s life story is one that draws the reader in and leaves an impression.
I can relate to Henrietta as a mother. Many mothers put off medical concerns due to being busy with the family or feeling like there just isn’t time to take care of their own needs. Henrietta was a mother just like me. I agree the scene with the children playing outside her hospital window was poignant and made me teary-eyed as I put myself in that room and my own children outside the window. I love the sunny personality Henrietta had and that everyone was welcome in her home, to live or just to share a meal.
I think the doctors acted in accordance with the times. I think Henrietta’s biggest regret and shock was from the sterilization, not the scraping of her cells into a petri dish. So much good has come from the research that was done! My biggest issue is with the fact that while her cells have benefited so many, her family can’t afford medical care. That is a shame. I don’t think the doctors were doing anything sneaky, though. I believe she would have signed an informed consent, but as the other respondent pointed out, would she really have understood what she was signing? I am happy her story is finally being told. That seems to be the big issue with her family, that we know Henrietta and not just her cells.
What a great discussion! Thank you Erin and the team at Real Simple.
Bookies: we’d love to hear your story over on Rebecca Skloot’s website.
We’ve launched the HeLa Forum, where you can share your story and join the conversation.
http://rebeccaskloot.com/the-immortal-life/readers-talk/hela-forum/
We’ve also launched Readers Talk, where you can watch videos of other HeLa fans sharing their reading experience. We’d love to see your video, too!
http://rebeccaskloot.com/the-immortal-life/readers-talk/
What a great discussion! Thank you Erin and the team at Real Simple.
Bookies: we’d love to hear your story over on Rebecca Skloot’s website.
We’ve launched the HeLa Forum, where you can share your story and join the conversation.
http://rebeccaskloot.com/the-immortal-life/readers-talk/hela-forum/
We’ve also launched Readers Talk, where you can watch videos of other HeLa fans sharing their reading experience. We’d love to see your video, too!
http://rebeccaskloot.com/the-immortal-life/readers-talk/
I liked the structure. I was also hesitant to read it, but I was hooked. The story telling about Henrietta’s life is what has me hooked! I really liked how Henrietta would tend to the family no matter who walked through the door with her famous spaghetti. And when family moved into town, Henrietta made sure they were cared for, very touching! I think the doctors have to a certain degree put their feelings aside for their work. There is a recount that George Gey did go to Henrietta’s bedside, and I choose to believe that is true.
In general, I think Rebecca does an amazing job of describing Henrietta’s spirit and the life she led.