Sunday, August 28, 2011

Book Eight Chat, The Immortal Life of Henrietta Lacks

We had our chat for Rebecca Skloot's The Immortal Life of Henrietta Lacks, this afternoon. Check out the discussion and stay tuned for the next book.

Amanda: Okay, let's get started, then!
CC: so, overall thoughts?
Amanda: I enjoyed the book. I definitely did not know very much about HeLa cells, and I think this was an important historical event to explore.
Susan: I really liked this book. I knew nothing of the history of cell cultures and such. So it was fascinating to read about the bumpy road from both the science and human interest perspectives
and disconcerting about the skeevy things going on in the name of science
Amanda: What did you think of Skloot’s treatment of the subject, of how she researched and wrote the book, and of her infusion of her own perspective into the writing? Was it an effective way of exploring the issues?
CC: I like how she gives perspective on the family, particularly explaining their state of mind and how the experience really shook them
I think it is fascinating when Deborah shares with her about Jurassic Park and how she thinks they are cloning her mom in London
Susan: And obviously given her interaction with the family, it would have been weird had she removed herself from the story
since the intrusion by reporters was key to the damage done to the family
Amanda: Yes, it was fascinating and disturbing to learn about the family's misconceptions about what HeLa cells really meant for the world.
Amanda: I think Skloot needed to be in the book, because it made it more authentic. Her descriptions of the family wouldn't have felt as trustworthy if you didn't have her sitting in the living room, her in the car, etc.
CC: It is interesting because they were given such few details and then basically filled in the blanks
Amanda: Yes, with truth and fiction.
Susan: I don't think it was that big of a leap/misconception for them. scientific language (as well as legal language) can be confusing/misleading even for those with a high school diploma
Amanda: And, they didn't have anyone that they could trust to tell them the real facts (until Skloot, and later that scientist at Hopkins), so what else could they do?
CC: I wonder what the family thinks of the book, if they think Skloot represented them well. She acts as their voice
Amanda: That's a great question. Not everyone is portrayed favorably. I'm thinking in particular of the honesty with which Skloot discusses the history of criminal offenses.
Susan: But they were very honest with that with her
Amanda: This is true.
Susan: I think her portrayal was very fair
CC: I was surprised by Christoph's honesty and when he basically blames Hopkins
Amanda: Yes. That was refreshing. But, I suppose it was because he wasn't from that generation of scientists that had screwed it up in the first place.
CC: I wondered if he got reprimanded
Susan: very true, Amanda
probably not. depends where his money was coming from
CC: it was really interesting to learn the policy behind medical testing and ethics, and to see the progression
Susan: also, Hopkins of today could hide behind the excuse of, "well that was back then, not us"
more like appalling
Amanda: Ah, yes!
Susan: the afterward about today's ethics and the patenting of genes is so frustrating
Amanda: I wanted to discuss the informed consent issues with you. I was excited about the IRB discussion in particular, because I had to go through the IRB approval process for my human rights research last year. It was intense! They had us learn about Tuskegee.
CC: and when they ruled in the 80s that individuals gave up right to their cells, basically,when they left the hospital!
Amanda: Yep.
I found the epilogue particularly informative about coming to terms with the ongoing controversy.
Susan: (something for you to look forward to Cindy!)
Amanda: Cindy, I had copied a couple of quotes from the epilogue to discuss, basically quotes from various scientists. Do you want me to hold off on mentioning them?
CC: sure
oh wait
sure, you can share them
Amanda: Okay, cool.
On the one hand, at location 5446: For Korn, the consent issue is overshadowed by a public responsibility to science: “I think people are morally obligated to allow their bits and pieces to be used to advance knowledge to help others. Since everybody benefits, everybody can accept the small risks of having their tissue scraps used in research.”
So, then what’s the real issue with the use of discarded “bits”? Is it about the potential financial gain, or is it, as Andrews suggests at location 5451, about “autonomy and personal freedom,” the psychological benefit of getting to decide what happens to something that is a part of you, much as with wills for personal property?
Susan: yes, but if those "bits" are then patented by the companies and used to make a profit, that hurts more than it helps. as I believe was also brought up in the epilogue
they want to prevent the patient from meddling, but they also need to prevent the coprs. from medling/hinering
CC: I think the minute the "bits" are used for profit, then they cease being used purely to "advance knowledge"
Amanda: Yes, yes, yes. I think that's the big issue. Not requiring consent doesn't prevent the commodification of the human body, but rather just shifts the beneficiaries of the process from the so-called "donor" to Big Pharma.
Susan: Yes
CC: it reminds me of Dupont patenting seeds, and this movie I watched that chronicled how the patent basically forced many small farmers out of business when the seeds were spread (via wind) onto their farm. Dupont took them to court claiming they stole their seeds
Amanda: Bingo. A good comparison, Cindy.
Susan: That sucks. And is totally exactly the same thing that is happening here
CC: I just think there are certain things that shouldn't be patented
and how on earth can someone patent a cell that has someone elses DNA?
Amanda: Well, the patent law issues are tricky, because many of these scientific advances do meet the requirements for a patent--that is, they are new, non-obvious, and useful or industrially applicable.
CC: patenting something that came from nothing, fine. but patenting something that has someones unique DNA inscribed in it,no
unless it is your own DNA
as the one individual did for the Hepatitis research
Susan: not even DNA, which is pretty unique, but a single gene - which can be found in MANY places
Amanda: Well, the issue with HeLa, and later with Moore v. Regents, was less about the patent, and more about the commercialization.
The patent issue cuts both ways.
Amanda: For example, with the Moore case, Moore argued that he had unique property rights to his cells and the profits deriving from their use, but the judge ruled that he didn't have that right because the products of his body were not unique to Moore. So, I think the real focus in terms of protecting patients' rights should be a process of informed consent that works.
But, how do you accomplish that when you don't really know the value of the discarded "bits" until after the fact?
Susan: But even with informed consent, that puts patients in a precarious position: have the potentially life-saving surgery and allow medical companies to use your "abandoned bits" or not have the surgery
CC: also, with the Lacks, it sounded like they were told a lot of stuff by different doctors and they just never really understood any of it
Amanda: Hence informed consent. It's not just about telling the patient, but rather about ensuring that they understand.
CC: so how can you be certain the person understands it?
Amanda: Therein lies the problem.
Susan: And how far does it extend. Just to that patient (Henrietta) or her whole family?
(this is just about taking her cells, not the taking blood part)
Amanda: I had to deal with this challenge for my human rights research in Jamaica in January, because we were interviewing deported persons with mental disabilities. How do you really know for sure that someone with paranoid schizophrenia understands that you are going to quote them anonymously in a report? Ultimately, we just had to make a case-by-case determination.
If you're not sure that someone understands, you should assign them a guardian ad litem, who can represent the best interests of the patient and has the capacity for informed consent.
Susan: But let's just say that the doctors had explained to Henrietta the donation and what they might do. And say she had understood and truly consented. How far does the explanation go for her family?
CC: I don't know if I'm just very pessimistic or not, but I always wonder with that, "do they really have the patients interest/safety at heart?"
Amanda: Well, it's Henrietta's body, so I'm not sure what rights the family really has. DNA stuff gets a little dicey, since you can learn things about the family's genetic disposition, though.
CC: I think I watch too many law/crime dramas. I doubt everyones intentions
Amanda: Heh, yeah, I can understand your pessimism, Cindy. But, the Hippocratic Oath seems to interdict that sort of behavior...
(I wish Carla were here...)
CC: based on what you read about Henrietta, do you think she woul have honestly given consent?
but the Hippocratic Oath is not law, isn't it just a "suggestion"
Amanda: True, it has not been codified.
Susan: I really think she cared more about the fact they didn't tell her she wouldn't have more children after this
CC: if they had told her that in the beginning, then she would have probably walked right out and just lived w the pain
Amanda: I think she would have consented, but it wouldn't have been because of the potential scientific benefits, so much as because of the naturally coercive power relationship she and her family felt toward doctors.
Susan: But she had no problem saying no to doctors given her history of suffering from STDs given to her by her husband
and refusing further medical treatment about them
Amanda: Though, she may have been moved to consent if she thought that the research might help her family--her children in particular. What if the research cured cancer, and her children got cancer?
Susan: but I think that might have fallen under the issue of coercion. How true is that really?
Amanda: Well, it's about what if, right? I mean, it could have played out like that. Intent and hopes are not invalid considerations.
Susan: I guess it goes back to their intentions. Did they really mean that they believed it would help her/her children or were they just saying anything to get her to say yes
Amanda: Precisely.
CC: when they took her sample, it was purely for Gey's research, it had nothing to do with her actual illness.
CC: it was, "since we have her under, lets grab some cells for Gey" bc Gey and the other doctor had some agreement, right?
Amanda: Yep.
What did you think of Deborah? Did the process of learning about her mother help her or hurt her?
CC: i haven't finished, but I think it was great for her to learn about where she came from
I think, knowing the good that came from the research on her mom, gave her hope and some pride
CC: their whole childhood they were just suppose to keep quiet and not ask questions, this gave her and her bothers an opportunity to feel something other than shame or fear
Susan: I think it helped to get some basic understanding of the science. otherwise she would have been left with the horror stories
Amanda: I'm not sure at what point in the book it occurs, but Deborah suffers physically from the stress of researching with Skloot. Even in spite of those challenges, I think it left her with a sense of peace about her mother, her sister, and her own place in the world.
Susan: And it was a way for them to connect with their mother, even though the youngest never really knew her
Amanda: Yes.
Amanda: Though, I must say, I am really impressed with Skloot's ability to connect with Deborah in spite of her inability to trust people asking about her mother (due to so many negative experiences in the past). Skloot really had to stick with it to get the family in general, and Deborah in particular, to trust her.
CC: it shows how dedicated Skloot was to telling the story
Susan: She was far more patient than I think anyone else could have been
Amanda: Well, she had to be. She couldn't have written this book without Deborah's cooperation.
Amanda: What did you think of the religious aspects that Skloot explored toward the end of the book? From location 4960: “You don’t have to be fearful,” Gary said. “The word of God said if we honor our father and mother, we can live long upon the earth, and you doing that, you honoring your mother.”
And, at location 5073: Of course [the cells] were growing and surviving decades after her death, of course they floated through the air, and of course they’d led to cures for diseases and been launched into space. Angels are like that. The Bible tells us so.
Susan: You know, I wasn't sure what to think of that.
Amanda: Skloot made it very clear that she was not religious, so it felt a bit like she wasn't sure what to make of it, either, but threw it in because it seemed meaningful.
CC: do you remember when Zakariyya said something about how, "if God wanted us to have a cure to dieseases then he'd just give it."
Susan: I don't think she "threw it in"
Amanda: It was an interesting change of pace from Skloot being the person in possession of knowledge, sharing it with the family. With religion, the family knew a lot, and was teachign Skloot.
Susan: She was trying to understand how they were understanding it all from their religious perspective
CC: I think maybe Skloot has a religious journey as a result, and she was just open to different ideas
remember when she almost prays at the Jesus statue
the family is totaling converting her
Amanda: It was unclear to me whether she was holding back on explaining her feelings on the religious experiences because she was unmoved/disconcerted, or if it was because this wasn't really a part of Henrietta's story, and she didn't want to infuse her story more than appropriate. I like to think that she got something religious out of the experience, though.
Susan: At least was open to the possibility
Amanda: Yes.
CC: I think the family makes a pretty convincing argument when they start compiling the list of "bad" things that happened to people when they went digging for HeLa
Amanda: I loved that. Henrietta will get you!
CC: I mean, I'm not saying I believe that Gey got cancer as a result of his HeLa research, but it is interesting when you look at the list.
or rather, as a punishment
Amanda: Regardless of the accuracy, it was a good articulation of how the family felt about the whole thing.
Susan: They were giving her agency, when she was alive she had little (in regards to her body/treatment)
Amanda: Ah ha, yes.
CC: I like how one of Deborah's main goal is just to make people understand that HeLa is Henrietta Lacks. Not just some cell that a lab created, but that it came from a living, breathing woman/mother/wife/sister/friend
whereas the brothers want a cut in the profits, she just wants people to understand and she just wants to understand
Amanda: Yes. I loved when one lab person described seeing Henrietta's red toenails in the autopsy, and realized for the first time that this was a human being, a woman, not just an experiment or research.
Susan: Yes
Susan: Though other journalists tried to go from the human interest angle, they just did a poor job of it
Amanda: They didn't spend enough time with the right humans.
Susan: so they acknowledged her as a human, just not a complex human with a family
Amanda: The story needed a book, not an article.
(Or a couple of paragraphs in a science book.)
CC: or they misrepresented her. Didn't one place publish an article that stated she probably got HPV as a result of sleeping around
Amanda: Indeed.
And, not to mention so many getting her name wrong in the first place.
CC: they didn't take time to uncover who Henrietta Lacks is
about the name, do you think it was good for Gey to not release the name? was he protecting the family?
Amanda: Yes and no. The issue, yet again, was that he didn't ask the family what they wanted. The mentality of "I know what's best for them" is really not helpful, and actually quite insulting, classist, racist, sexist, whatever you want to call it.
What did you think of the theme of “immortality,” which is in the title of the book and is the name of the final third of the book? To what extent is Henrietta “immortal”? Is it about the ongoing existence of her cells? Is it about her impact on history and science? Or, is she immortal at all? Are those cells really Henrietta?
Susan: I think it is a bit of the first two
the cells and her continued impact on science
Those cells still are from Henrietta, no matter how many generations removed
And I guess for her family, who believe they are her, than she herself is immortal
CC: I agree. I think the immortality refers to her continued impact on science.
and yes, those cells are still a part of her
Amanda: I agree. The immortality is significant because of the impact of the cells, rather than their continued replication.
CC: I think, also, Skloot and the Lacks family want the science world to recognize Henrietta's presence
Susan: But I think a very strong part of it is her FUTURE impact
these cells aren't done being used
CC: agreed. they are just beginning to alter the science world
Amanda: That's part of what's so interesting about this story. I wasn't sure how Skloot would end the book, since it's ongoing. It's interesting to think about how this book would have differed had it been written ten or twenty or forty years ago.
Susan: true
CC: maybe there will be a part 2!
Amanda: A reprint with a new afterword, at least...
CC: her history is an ongoing history, and I hope that here great grand children get to be proud of that history that her own kids didn't learn about until so many years later
Amanda: Amen.
Susan: Very true

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