Sunday, August 1, 2010

The Immortal Life of Henrietta Lacks


Henrietta Lacks may have died 60 years ago, but her cells live on.  The book has been a runaway success this summer, as Rebecca Skloot has become a celebrity in the wake of her first book.  Of course, when you have a story as compelling as this one it is hard to go wrong.  But, it seems Skloot's heart remains in the right place, as of the proceeds from this book are going to the Henrietta Lacks Foundation.  Let the discussion begin!

You can review comments made on an earlier board.

103 comments:

  1. We can get the ball rolling with a few general impressions before NYT returns.

    I suppose Skloot was limited somewhat by the surviving family in this book. She opens by telling the reader how difficult it was to gain access to the Lacks family, and the tangential route she went about it. As a result, you get the sense that she is being ultra-respectful to the family, rather than digging deeper into the Henrietta side of the story.

    In the early going, it is more interesting reading about the history of microbiology and virology, especially in regard to the early lab work of George Gey.

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  2. Yes, I'm sorry to dive in with all my negative thoughts when NY isn't here to keep the discussion on track.

    But I will say in response that I didn't get the impression that she _was_ all that respectful of the family, at least not in print.

    A couple examples that really got under my skin. Setting the book off with excessive use of dialect which is difficult for anyone to pull off. This may (or may not) be an exact transcription of what was said, but it sets the tone that the family is somehow ignorant -- and yet their life stories, or what you can get from the book, suggest something entirely different.

    And there are other ways of handling that. For example, later in the book, she says about Day, I think, that his accent was so thick even his family had a hard time understanding him. She could have then attempted to give an example or two and left it at that. I saw all that other as disrespectful and, ultimately, meant to reflect on her -- the young, educated white woman, sort of digging for a story --rather than those she was writing about.

    Ditto an entire chapter on the daughter's attempts to fend off her uncle or cousin. Again, a comment would have taken care of that, but she needed another chapter I guess.

    It's interesting that this book moved between three or four publishers (see the acknowledgments). In the end it seems like she published a first draft of all her notes -- some of which are very good, others that needed to be cut.

    The stories about the cells and the history of the labs etc. are fascinating. She is obviously more comfortable with the science than the people. Although I give her credit for setting up the foundation.

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  3. I told my daughter about what I see as the central message of this book -- even though the HeLa cells have led to amazing scientific discoveries and breakthroughs in health care, the family has no health insurance and cannot afford to see a doctor. Her response, "what a country."

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  4. That is the central irony of the book, but I don't see any necessary connection between the success of the HeLa cell line and the current status of the Lacks family. They would have no health insurance and could not afford to see a doctor readily in any event.

    I'm having a lot of trouble with the concept of owning my cells. I'm not allowed to sell my spleen or a kidney to someone who needs one. Under certain very strict circumstances I can give it away. What's the difference? Organ or cell, they can be deemed to have an economic value, but so what? I just don't see how one owns any part of one's body, at least in the sense it's meant in this book.

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  5. Gintaras, I think the article you posted does a superior job of addressing the issues taken up in the book. Thank you for putting it up.

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  6. Johns Hopkins University does not enjoy a sterling reputation in the lacrosse sports community. Nicknamed 'JHop' its lax playing field is known as Homewood but we call it 'Homerwood' because the NCAA referees have given it a great many home town decisions in their matches. It is also reputed to be the most conservative college in the northeast. This is why so many pro-Iraq critics were startled when the school backed up the Lancet study which reported that deaths in that war have been under reported by the controlled media. Thus, the school has long had a reputation for being allied with the right wing.

    From the HELA book we see that it has long had a reputation for racism. This despite the legacy created by its founder which mandated that all patients (regardless of ethnic/racial origin) were to be treated alike with equal charity to all. Sadly, the school has not lived up to its humane legacy. Therefore, some of the sad disclosures made in Skloot should not come as a surprise.

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  7. I was surprised to read about what the African American community felt about Johns Hopkins, particularly given its mission to provide free or affordable health care to anyone who couldn't afford it -- which was also news to me.

    They still segregated the wards, which I always find startling not having experienced the south. But in health care that seems particularly odd since a cell is a cell is a cell, or at least until someone identifies it as "black" as noted in that article Gintaras posted.

    But in theory, the hospital was there for anyone who came to them for help. And yet there were stories that the hospital would steal you away from your family at night. That's terrifying.

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  8. Diane, I think that anyone who might treat you with the least bit of care (not respect as we would call it) would be very suspect. Also, I think that black people in mid-century US would be different, but not very different from white people, who even at that time saw a hospital as a place one went to die (one of my grandmothers, for instance). That their dying experiences might have been that much worse would mostly be an indicator of the poor treatment they had previously received (see grandmother above). Even today, my experience tells me that many black people are reluctant, whether from financial or less obvious reasons, to go to a hospital; clinics do a better job of health care in some communities. However, my experience also tells me that all the black people I know who have medical insurance are not behindhand in seeking care. So I think the negatives blend into barriers whereas a small positive breaks barriers down.

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  9. The main theme I picked up early going in this book, and in Landecker's essay, is that the doctors seemed more interested in Henrietta's cells than in her condition.

    At the very least, more could have been done to make her dying days less painful, but it seems a series of misdiagnoses and seeming indifference on the parts of the various doctors pretty much doomed her. The part about Gey supposedly seeing her near the end and saying that her cells would become part of a greater good seemed apocryphal to me. Seems Gey saw Lacks as little more than a host for the immortal cells he long coveted.

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  10. Carol, that's interesting and I'm sure true. No one wants to go into a hospital.

    Having spent time in one here, I can assure you I don't ever want to go back! What I hated the most is the total loss of identity and control over your person.

    If anything, the fears the black community expressed confirm my own experiences (although I hadn't thought of it that way until you pointed it out).

    I guess my initial reaction to Johns Hopkins was the hospital's failure to represent itself as a place where people in the community could come to get help.

    That said, the terror or fear expressed in Baltimore seemed to be something even greater -- that doctors were digging up graves (indeed they may have paid for it) and that they snatched children off the street. Some of this fear was well-founded when you put it into perspective of the Tuskegee experiments and other parts of life in the South.

    Gintaras, I seriously doubt the Gey story -- I think that was one of those sort of "death bed" conversions. That said, I don't hold anything against him -- I think he personally acted in the best interest of human health and research as he knew it. It's just that research at some point becomes very depersonalized (see comment about hospitals above).

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  11. Yes, and Skloot noted this when she described the autopsy, with Margaret apparently able to see the humanity in Henrietta, while George was more concerned with one last set of tissue samples.

    That doesn't exactly make George heartless, but it was pretty clear he placed science above humanity.

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  12. By some years I'm the oldest person here, and I remember the 1950s very well, so when Skloot says Henrietta got the existing standard of care treatment I believe it since is it so very like the treatment my aforementioned granny received for the colon cancer that killed her in 1957 in Oklahoma. It is interesting that Henrietta's doctor died of radium poisoning later; apparently the connection of the Curies' deaths to their discovery had not been made even at this date.

    In the '50s, Hopkins was the only hospital in Baltimore and surrounds that would treat non-white people. In Dallas, there was just one hospital available for treatment and care of non-white people, and it was not a great teaching hospital like Hopkins. If one called an ambulance one had to say whether the patient or victim was white or non-white, as there were different servicers for each group. (This was not totally negative for the black ambulance companies, as it assured them business they would otherwise not have had. A sort of Huey Long solution.)

    People who weren't around in those days have a very hard time conceiving of how it was, but it is important to put the events into context. (That essay Gintaras linked to does a great job.) We still had several kinds of mneales not to mention the dreaded polio; I lost more than one high school peer to it in the mid '50s.

    As for Gey, since he was a researcher, not Ms. Lacks' treating physician, I think it would have been highly remarkable for him to have visited her at any time. I give Margaret good marks for realizing what that nailpolish represented, but I expect very few men would get it, even today, present company excepted.

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  13. Hippocratic Oath:

    ''I swear by Apollo, the healer, Asclepius, Hygieia, and Panacea, and I take to witness all the gods, all the goddesses, to keep according to my ability and my judgment, the following Oath and agreement:
    To consider dear to me, as my parents, him who taught me this art; to live in common with him and, if necessary, to share my goods with him; To look upon his children as my own brothers, to teach them this art.

    I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.

    I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion.

    But I will preserve the purity of my life and my arts.

    I will not cut for stone, even for patients in whom the disease is manifest; I will leave this operation to be performed by practitioners, specialists in this art.

    In every house where I come I will enter only for the good of my patients, keeping myself far from all intentional ill-doing and all seduction and especially from the pleasures of love with women or with men, be they free or slaves.

    All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal.

    If I keep this oath faithfully, may I enjoy my life and practice my art, respected by all men and in all times; but if I swerve from it or violate it, may the reverse be my lot.''

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  14. ''War On Cancer''

    While this is mentioned much later in the book, I think it should be pointed out that this so called ''war'' has been subjected to much attacks and criticism over the years. Critics have said it was an intentional failure designed to generate much profits for certain wealthy elites:

    http://www.preventcancer.com/losing/acs/wealthiest_links.htm

    This is very similar to the criticism levelled at the military industrial complex over the way it profits from government created wars.

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  15. Trippler, you might be interested in a conversation going on at the blog Crooked Timber about whether people who perceive themselves as liberal actually are, and how questions can be phrased to draw wrong answers. I think it sheds good light on how to look at a lot of criticism, regardless of its source.

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  16. Thanks for the black/white ambulance story, Carol. Those truly were amazing times. Who needed communist propaganda in the 1950s when they could simply show footage of life as it was lived in America in those days?

    I'm not anti-technology or anti-science -- indeed most of the work I do is to help ensure that more students learn about science so they can make informed decisions for themselves -- but there is something to be said about the way medicine is conducted in this country as a for-profit venture (there is a little about this at the end of the book as well as the article Gintaras posted). I lived in England for a couple years, and there doctors are public servants -- working for the benefit of everyone. (and as Michael Moore noted, they still have good lives)

    The best thing I've read about cancer treatment is by Barbara Ehrenreich, who argues that corporate sponsorhips go for "races for the cure" (which the medical establishment is pretty good at if you can tolerate the methods) but there's no money for "races for the cause."

    http://www.barbaraehrenreich.com/cancerland.htm

    The treatments Henrietta Lacks endured were probably the best they could do at the time. But she also appears to have had a very aggressive form of cancer -- those cells are still aggressing after all!

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  17. And thanks for Crooked Timber. Great (albeit bogus) discussion about wages and "fairness."

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  18. You are right, Carol, it was a whole different time and place. Hard to even imagine it unless you lived through that era, which I didn't. The Hippocratic Oath carried about as much weight as the Federal Constitution in those days.

    I thought the part about the toenails an excellent note as well.

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  19. Human-animal hybrids? This scary thought was written about long ago by HG Wells:

    http://www.broadwayworld.com/columnpic/dr_moreau.jpg

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  20. Humans are animals. Various animals are interbred all the time, see mules for example. What's puzzling is that humans seem to assume that a hybrid involving a human will automatically be an enemy. I suppose that fear goes very far back in evolutionary history.

    Many types of treatment are tried out on the animals humans can control through superior strength and intelligence of a sort. The belief in Aryan supremacy is just a subset of the belief in human supremacy. (But realizing that doesn't keep me from accepting medical treatment or killing cockroaches and house flies, not to mention enjoying a blt.)

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  21. ''enemy ... fear ... Aryan supremacy''

    Throughout the book there are various passages in which the Lacks family complains about whites profiting from black's misery. All this reminds me of an online exchange I had with a racist a while ago:

    Some guy who openly avowed white supremacy expressed his disgust with professional sports. He felt it was a bad thing because black men profited too much and that blacks should live in poverty in total subservience to whites.

    I wrote back and told him, not to worry. That while a few blacks undoubtedly made good money in sports, always remember that their coaches, business managers, lawyers, accountants, publicists, stylists, taylors, and yes, their biographers all had one thing in common: they are invariably white. He wrote back and indicated that he felt better after my revelations (no, I did not tell him I am Hispanic).

    The complaints made by the Lacks family is the same made by other minorities whether in sports or in any other form of public appearance - that indeed many whites profit from them. The black athlete, the black actor or singer, or any other type of public figure - invariably, whites make a good deal of money from them. Generally, you do not see complaints about this as they are rarely made in public. But in my years in the accounting/tax field in NYC and as a former free lance sports writer this is an issue that has come up in private conversation numerous times. Hopefully, some day this will no longer be an issue. And hopefully, some day the Lacks family will receive prooper compensation for their misery.

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  22. I suppose that's the crux of this book. While the Lacks family suffered with the loss of Henrietta, the medical world prospered by her cells. And, so we get a "Tale of Two Worlds," sort of speak. She never really said whether this was just a fluke and if any cancer cells would have sufficed, but HeLa cells became immortal.

    As Skloots noted, doctor/patient confidentiality was a pretty new thing and the Nuremburg Code was lightly enforced, so all that she describes there in the early going was pretty common procedure. Racism was endemic, and someone like Henrietta Lacks an easy mark.

    It was interesting to see that subsequent virologists used cancer patients and hard felons as their guinea pigs, figuring there would be less public outcry.

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  23. It's my understanding that some convicts even today are offered the opportunity to participate in serious medical trials. They receive various benefits for their cooperation. These might mean more to incarcerated folks than they do to the thousands of people who participate in medical studies for more altruistic reasons. Of course, the more serious the trial, the larger number of benefits even the folks at large receive. Many terminally ill patients participate in quite dangerous trials aimed at understanding their particular ailments, knowing full well that no cure is in the offing.

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  24. Marti, you should join the discussion! What did you think of the book?

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  25. ''the medical world prospered by her cells''

    In a related case, Skloot refers to Moore in which the courts, once again, defers to corporate interests while disregarding the interests of the aggrieved patient and of society:

    '''The Moore court's concern was, if you give a person property rights in their tissues, it would slow down research because people would withhold access for money. But the Moore decision backfired - it just handed that commercial value to researchers.''

    p 324


    In other words, once again, the public be damned.

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  26. Doesn't she say or suggest that it actually ends up having the opposite effect? That by giving the researchers proprietary rights they are less inclined to share breakthroughs until they can be patented, or tested, or whatever.

    Howard Dean believes pharmaceuticals benefit from being motivated by profit, but it seems like so many of these areas should be non-profit or have profits turned back into further research support.

    Much of the earliest fundamental research that ultimately benefits pharmaceuticals is supported by the government -- in the form of NIH or NSF research grants or post-doc support or whatever.

    I'm not sure how this all works in the health research world, but I've never seen an NIH grant say that any profits resulting from the research are due back to NIH or the university it is supporting. It may be there, but if so it's in very small print.

    No matter what you think of Gey and his wife, they seemed motivated to find methods to improve human health and advance the study of medicine, and never profited from what they did. That sort of gets lost when people want to be paid for their body parts.

    This is where the profit motive seems way out of balance to me -- but then that's our culture (no pun intended). And it's our culture (not medical research per se) that results in the Lackses having no health insurance. As my daughter said, what a country.

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  27. I posted a few days ago and later realized it didn't go through. I liked the book, found it interesting, but realize that it was more about Lacks's family and Skloot's encounters and experiences with them, particularly Deborah.

    Until I heard about this book, I wasn't aware of HELA cells.

    I was surprised to read that HeLa cells were used in testing for development of polio vaccine. I remember receiving the shots and later the sugar cube with the vaccine in the 1950s.

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  28. Adding to my first paragraph:

    than about Henrietta Lacks.

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  29. It is interesting that this particular book struck a nerve, whereas others before went virtually ignored. I didn't know much about HeLa cell before this book either, but I guess that was more to do with the media not picking up on the story in a long time.

    Probably the most interesting aspect of the book is the media reaction to the early bio-engineering experiments and the greatly exaggerated implications of cell research. But, Skloot chooses to jump around rather than stay focused on any one particular subject. I suppose in that sense the book serves as a nice compendium on the subject.

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  30. 'Much of the earliest fundamental research that ultimately benefits pharmaceuticals is supported by the government'

    A point made by Skloot. And as you noted, the profiteering pharmaceutical groups are not requuired to pay back anything. Thus once again, it's a matter of socializing the cost for research or for the correction of a problem in society, while privatizing the profits.

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  31. Skloot is a pretty woman, and the book is intellectually modest, so good for appearances at book stores and on the radio. It was published at a moment when awareness of medicine in America was rather high because of the health care legislation. Skloot has good ties among the literary powers; she extends her "deep gratitude" to her "former colleagues" on the National Book Critics Circle board of directors. These factors might have contributed to its success.

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  32. It seems the Lacks biggest beef is that they werent' part of the action when it came to the sale of Henrietta's cells. Skloot notes that it was the Rolling Stone article that brought the financial side home for the Lacks, and so they began to take more interest in what was going on. At least, as far as the Day and the boys were concerned.

    I suppose if you have been living in poverty for that long it would be a real eye opener to find out you could sell a vial of your departed mother's cells for $25 a vial. The only entity they had to direct their frustration and anger at was Johns Hopkins, but as Skloot points out they weren't really the bad guys here.

    Hall takes on the biotech industry in Merchants of Immortality.

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  33. Skloot has hit the big time,

    Oprah To Produce 'Immortal Life Of Henrietta Lacks' movie For HBO

    http://www.huffingtonpost.com/2010/05/12/oprah-to-produce-immortal_n_573647.html

    Hard to believe this is the first Oprah has heard about Henrietta, as the documentary I linked noted that Henrietta Lacks Day (October 11) was inaugurated at Morehouse College in Atlanta in 1996.

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  34. This raises an interesting question, who has rights to Henrietta's story? And, who stands to profit from it the most?

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  35. Interesting! As the writer of the "story," Skloot has the rights to sell it. The story now becomes like the cells -- a source of profit for someone else.

    I give her credit for setting up the foundation and donating a percentage from the book to it. It was the right thing to do. Hopefully she will put aside even more for the family now.

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  36. Wasn't Moorehouse the campus where they first grew the cells? That was also an interesting twist -- how they were able to benefit the black community initially, but the big labs came in and were able to "corner the market" by sheer size alone.

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  37. What happened to NY? Hope she made it home okay.

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  38. Skloot has written for Oprah Winfrey's magazine in the past, although I don't know on what topic, but I, too, think it unlikely that the big O had never before heard of Henrietta Lacks. She probably forgot. I wonder who's going to do the screenplay.

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  39. Rats, I see there could be a slur perceived in that post, where I used the word "big." I was thinking influence and power, nothing else. Sorry.

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  40. "What happened to NY? Hope she made it home okay."

    Thanks, avrds, got back fine but events have transpired that cause me to refocus my attention away from the online world. Regards to all.

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  41. I hope you will come back at some point, NYT. You can drop me a line at dzimas61@gmail.com

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  42. What I'm trying to figure out is how much research Skloot actually did? Seems virtually everything in this book had already been covered, including interviews with the Lacks family by Adam Curtis. I think that Skloot saw a good story, probably after watching Curtis' documentary, and decided to follow up on it.

    I noticed that she teaches "creative nonfiction" at the University of Memphis. Interesting subject.

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  43. This book reads as though Skloot is making a case, ethical it seems, against all those who "exploited" Henrietta Lacks' body and cells for their own personal gain. She takes each person in turn to task for breaching patient confidentiality, even when she herself noted that no such confidentiality existed at the time. Federal legislation regarding patient confidentiality didn't come into being until the 1980s, so even Gold was perfectly within his rights to seek medical records on Henrietta for his book, as painful as it might have been for Deborah to read about the autopsy.

    It seems that the family could have attained these records from Johns Hopkins if they had chosen to, but instead they preferred to avoid returning to this painful issue until Rogers came along looking to bag a story for the Rolling Stone. They covered this painful issue one more time with Adam Curtis. Then comes Skloot to pick the scab yet again.

    I guess if anything has come out of this book it is that the Lacks family has finally garnered some spotlight and that the foundation Skloot set up in Henrietta's name may do some good. But, I just can't help seeing this as journalistic opportunism on Skloot's part. Having written for O, she knew all too well what kind of stories would appeal to Oprah, and getting her signature on a book is a major marketing boon.

    Few of the persons she mentioned "profited" from HeLa cells, but Skloot stands to gain considerably from this book.

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  44. ~~ records from Johns Hopkins if they had chosen ~~

    Unfortunately, there was no one they could trust. When a character like Dr Sir Lord Kester Cofield comes along, pretends to be a lawyer, and creates such a mess, you can understand why they were hesitant to trust anyone. Evidently, he was the first person to tell them anything specific about what happened to Henrietta. Nobody else did nor did anyone even try to help. It's the old story of having the deck stacked against you.

    As for Cofield, nowadays he appears to be on the run from the law.

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  45. NY, hope you're doing okay! I have missed your comments about the book.

    Gintaras, I think you have summed up the book very nicely. These are indeed the stories that Oprah likes to promote and, as Carol noted, she is big in the world of popular culture. This book seems to have been written in a way to make inroads into that world -- and succeeded. It's a BIG book.

    Watching that video only confirms what I thought -- that Skloot has also exploited the family for her own gain. And I think she creatively, non-fictionally stereotypes them and makes them come off like southern fools, who speak a poor version of something like English, when in fact they are anything but. Or at least the BBC certainly doesn't make them out that way, which is telling. From my experience living in London, the English don't have the same issues with race that we do over here.

    In many ways the Lackses remind me of my own family -- low-income, working class people who come to the realization that they have been robbed of the one thing that might have made a difference to all of them -- their mother's life.

    The foundation and the 10% or whatever Skloot is donating to the family is heart warming, and may lead to opportunities for the next generation, but it would have been nice if she had done more in the book itself to give back. That said, finding the information on the other daughter seems to have been a real gift to Deborah.

    Trippler, I had totally forgotten about Cofield. Now there's a story! There are characters like that one throughout the history of the American West, but you don't expect someone like that to waltz into a story about biotechnology.

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  46. Just for fun, I sent rebecca@rebeccaskloot.com an e-mail to tell her about our little group read. I also noted what I thought of her book, in polite words of course, but got a message back saying she was on "The Immortal Book Tour" and left a number of contacts, which included agents for speaking engagements, film rights, and using her book for Freshman Year Experience programs. This gal has all her bases covered. You should check out her site.

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  47. Trouble maker! Someone also promoted her site at the BBC site you linked -- you can find a link to this film (which is right there) at the Rebecca Skloot website....

    I don't know why my reaction has been so negative since it's a great story. My guess is it's because she does so much to promote herself in the book at the expense of the people she's writing about. In any event, I think I've had enough of Rebecca Skloot.

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  48. Reminds me a lot of Nathaniel Philbrick and that book he wrote about the Whaleship Essex. It struck me as pretty much a cut-and-paste job. Reading Owen Chase's first-hand account was much more interesting, which for whatever odd reason Philbrick decided to challenge in his book.

    There seems to be a number of these "armchair historians" out there, ready at the word processor to fill us in a story that has become obscure over time.

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  49. Some stories definitely have a time and probably an author, too. This seems to be Henrietta Lacks's time and, for whatever reason, Skloot seems to have struck a cultural nerve.

    The BBC emphasis on the search for a cure for cancer and the biotech boom in the 1980s really put a lot of this research into a broader context. But during those heady days people were probably not all that interested in the source of HeLa cells, other than the contamination factor which Landecker really gets right.

    I have actually enjoyed Philbrick's accounts -- I haven't read the Mayflower book, but have read all the other "ship" books. He seems to have a way of taking a story off the shelf, as you say, and giving it a strong or at least consistent narrative voice. I would put maritime history close to military history in my interest level, but he keeps me reading.

    To draw that parallel, though, it would have been as if he went to Chase's family who are, let's pretend, down and out living on the coast of Nantucket, amid all that wealth, and no one knows who their ancestors were, but here comes Nathaniel and he's going to set them straight, and attend their primitive churches, and sorta of go along with it all for the story, showing what an adventurer he is in his slumming. Maybe I'm being too critical, but that's how this story strikes me.

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  50. avrds, you're not too critical.

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  51. ~~ 10 % ~~

    Geez, I dunno. Somehow, I just get the feeling that the only motive Sklott had for writing the book was the profit motive.

    Without all the help she got from the family, she would not have completed that book and earned anything from it. Moreover, why give the money to the foundation (where she gets writeoffs) when it is the family that is underprivileged and still without medical insurance? The book sums up what others have alreadly disclosed though it gives more of a personal touch because the family with their problems is exposed. Thus, while the book is somewhat revelatory, it fails to bring about any justice for the Lacks family. If this book does have one degree of success, however, it is in revealing that justice will never be served for them.

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  52. Trippler, I can't find it in the book so can't document that it's 10%. At the website it just says "a portion." But, for the cynic in me, there's this:

    http://rebeccaskloot.com/2010/08/first-henrietta-lacks-foundation-grants-awarded/

    That's impressive!

    And thanks, Carol. I know how hard it is to write a book and get it published so I tend to try not to criticize. It's why I'm not a good book reviewer unless, of course, it's someone who really deserves to be taken down a notch like Brinkley....! But for some reason -- I think it was her treatment (in print) of the family -- this one really rubbed me the wrong way.

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  53. Rebecca Skloot has a page in Goodreads, a fan page in facebook and she uses Twitter. It was through the Goodreads page, or maybe it was Skloot's website, that I learned that Lacks finally got a headstone a few months ago. She has links to press about the headstone.

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  54. "I noticed that she teaches "creative nonfiction" at the University of Memphis. Interesting subject."

    And something of a family tradition: http://en.wikipedia.org/wiki/Floyd_Skloot

    Thanks for the good wishes and my apologies for being vague yesterday. Recently had to put down a beloved but very old and very sick pet, subsequently & still having to help pregnant daughter who got smacked by a big ol' wave in Maui and ended up with broken tibia (never mind Lonely Planet guides, beware of Big Beach--it's a direct feed to the ER at Maui Memorial Hosp!). All's well with the baby and she fortunately will not need surgery but must live with brace/immobilizer for next 8 weeks. She acknowledges nurses make the worst patients and that healing time will be hard on her hubs (and pets, and friends) as well as herself. We can only rejoice it's not worse and prepare to dig in for the interim.

    I skipped to the end of the thread to expand on my post of yesterday, when I didn't read far before becoming aware that the reading experience was vastly different for me than for those here. I don't mind saying I'm astonished at the level of ill will directed at Skloot, my own admiration of her achievement is undiminished. Her patience and persistence, her ability to enlist the cooperation of so many (did you read the acknowledgements???--I don't know if I've ever talked to that many people on any subject!), her ability to make understandable a wide variety of often abstruse information and to weave it all into a compelling tale that deepens one's humanity. I think she richly deserves her success and wish her all the best.

    I don't know why I expected discussion of the book to get into subjects like medical/legal ethics, the commodification of body parts and products, and even some sci-fi premises. I've even looked differently at things I would not have even noticed before, such as a sign in the Castro subway station advising care in participating in stem cell research projects. Hmmmm. I also find myself thinking again and again about Lacks and Oppenheimer as two iconic 20th century figures. But that's just my left field kind of thinking.

    At a minimum, I hope I'll take away Deborah Lacks' admonition to her brothers not to go into history with a "hate attitude."

    Am off to teach my second kid how to make my first kid's favorite dish. Again, best regards.

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  55. NY, sorry to hear about your pet and your older daughter -- terrible way to end a holiday. But good to hear the daughter is okay and glad you could join in the conversation about the book.

    I hope you don't think that the negative comments here about the book reflect a hate attitude towards history or the Lackses. On the contrary, the way Skloot has written about both is what I object to.

    Hopefully you can go through some of the other comments here and respond from your perspective. It makes for a much better investigation of the book and the subject matter if we don't always agree!

    Glad you're back and that you and the family are doing okay under the circumstances.

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  56. No one has directed 'hate' towards Skloot. In fact the word 'hate' is becoming too much of a convenient catchphrase in society nowadays. Cynicism is perhaps more apropos. For good reason, too, considering the facts and circumstances behind the unhappy and undeserved fate of the Lacks family.

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  57. Ny, I'm sure you will have a healthy bunch of recuperative reading for your older daughter. And how nice that the younger one is all ready to learn to make special treats for her. (And I'm sure that coming from sunny Hawaii to gloomy, drizzly SF couldn't have brightened your day.) I hope all will be well for everyone in your household soon.

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  58. For most people, myself included, the book revealed a new subject. For that I am grateful to Skloot, but the tone she sets in the book bothers me as she seems to be putting all these researchers on trial for having taken advantage of Henrietta Lacks and her family.

    Sure, one can say 20, 30, 60 years after the fact that a better effort should have been made to properly inform the Lacks, but those were different times, which Skloot begrudgingly admits, and these persons operated under the laws and ethics of their day. All of the key persons she takes to task believed they were working for the greater good of society, in particular George Gey.


    What happened to the Lacks family is a far cry from the Tuskegee experiments, which Skloot repeatedly mentioned, as no one in this family was intentionally shot with HeLa cancer cells, and the cancer patients and inmates who were shot with cancer cells were made aware of it and gave their consent.

    If there is any "villain" in this story it is the biotech industry, which apparently got its jump start with free HeLa cells. But, then the biotech industry has long been taking advantage of the NIH for its own personal profit. Stephen Hall's book, Merchants of Immortality, which I linked, looks like a good follow up.

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  59. My other problem with this book is the lack of any real primary research. Essentially, she followed up on previous research. I say this because she made a big song and dance about having worked so hard to get this information and access to the Lacks family, when much of it is available through the Internet, including interviews with the Lacks family. Indeed, this is a work of "creative nonfiction."

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  60. I hadn't thought specifically about Tuskegee, but now that you mention it, this is probably why Oprah is interested in it. She does have a pretty consistent record of choosing books with the theme of rape, victimization, etc.

    For me, a far more interesting analysis was Landecker's piece when she talks about the "aggressive" female cells taking over the lab and the "contamination" of the white baby cells and the one drop rule. That says more about scientific culture than collecting cells from biopsies. (And for those of us who have had biopsies, those cells are out there somewhere....)

    As I said earlier, I think the story is a much stronger indictment of US culture and capitalism than of science.

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  61. I think Skloot would counter that she befriended the Lackses, which is why her book is unique (and why Skloot puts herself so much in the center of the book). But I also question that.

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  62. We apparently are not the only ones to have noticed all of this:

    http://www.politicsdaily.com/2010/03/27/the-making-of-a-best-seller-rebecca-skloot-and-a-great-obsessio/

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  63. I hope ny is going to post here; I'd like her thoughts (and those of the rest of you) about the elephant in the room - who owns the cells? If you see my first post I said I had a very hard time having any sense of ownership about my own cells - I did nothing to make or get them and only in a very vague, universal aggregating sense do I have any responsibility to them. What about you?

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  64. I hope she does, too!

    In the meantime, I will argue no one "owns" the HeLa cells or any other cells since they were taken with permission for a biopsy and, following standard protocol for the hospital at that time, given to researchers working on curing diseases -- a cure that may at some point help someone in Henrietta's position. The cells then took on a life of their own as it were.

    What I have a problem with is selling the cells (not technologies or whatever that they may have facilitated) to other researchers at a profit. A more ethical solution might be to donate all the net profits to research or medical schools.

    I'm not convinced, however, that the net profits should go to the Lackses. They have a legitimate complaint that others have profited while they haven't, and that we live in a country with very weird values when it comes to human health, but I don't think anyone should profit from the basic cell line.

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  65. here's an excellent example from tonight's paper of what happens when the research establishment actually shares:

    I"t was unbelievable,” said Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania. “It’s not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.”

    http://www.nytimes.com/2010/08/13/health/research/13alzheimer.html

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  66. I think the biggest worry, which Skloot noted, as that these cells can be used to profile people, and used by health insurance companies and other agencies against you.

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  67. I have just found a Diary of an Australian soldier in WW1, which hasn't been seen by anyone since 1919. This has never happened to me in 30 years as an academic. Parts are in Pitman's shorthand and refer to "horizontal refreshment". Clearly wife wasn't meant to read these.My man also had an illegal camera. This could be good.

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  68. Yes, I had a sentence in there about identifying sources for those cells (i.e., mine or yours) but took it out because it was difficult to follow with everything else I'd crammed in there. But with DNA etc. now that is a huge concern.

    You have to give Skloot credit. This book has initiated a fascinating discussion!

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  69. ~~ cells can be used to profile people ~~

    Indeed, a very important point. The solution to that is to have universal health care just as they do in Europe. It's time for the USA to join the rest of advanced civilization in that regard.

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  70. Yep. "Biobanks" like this one raise many ethical concerns,

    http://www.wired.com/medtech/health/news/2002/05/52176

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  71. Here's a link to a story in the SF Chronicle about a scaling back of some DNA testing of incoming freshmen at UC Berkeley where three gene profiles would be shared with the students in whom they were found: http://tinyurl.com/26rcv75

    I do not understand why the students should not be given this information; some people apparently are afraid they will misuse knowledge about their own bodies. Why they think they have the right to prevent the students from knowing about themselves is beyond me. They remind me of people who think they have the right to decide who can get married to whom (or not).

    I hope people are willing to comment on my questions regarding cell ownership. Do you own your own cells? What does that mean?

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  72. Also, I don't see how privacy can be protected. If something is knowable, it will be known. It seems to me that the way to protect individuals from misuse of genetic information it to make sure there are good laws to prevent it. What do you say?

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  73. Cells are unique, so in that sense Carol I believe we do have propriety over our cells. Not that there ever could be much control given all the blood tests I've given freely over the years.

    What bothers me is the biotech and private health care industry, which obvious stand to profit most from this "knowledge" and guard it like the Holy Grail. Brings to mind the science fiction movies of the 70s.

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  74. Cells all by themselves are useless. Our bodies shed millions of them every day. Their extrinsic value arises only after someone has studied, manipulated, tested, etc. That's all value added. Or commodification, depending on how we choose to look at it. But after all that, are they even "my cells" any more?

    Has anyone here had enough interest in their cells to try to find out their DNA profile? What was it like?

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  75. Skloot mentioned a hemophiliac who was able to gain propriety over his cells and establish his own "biobank," so to speak, and bring in others who had unique conditions that researchers coveted. This turned into a multi-million dollar business.

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  76. I thought of linking that article, too, carol--glad you did so. I was surprised and a little disturbed when I first learned of the DNA test option offered to incoming freshmen because I understand the pressure of university authority on that age group and I thought many would go along without adequate information. The project seemed ill or insufficiently considered, but I don't regard the solution put forward as an improvement.


    As for cell ownership, it may be a kind of basic instinct that says if we own our bodies, we own the totality of our bodies. What is slavery but ownership of bodies and their functions such as work, production of other slaves or of useful substances (remember the scene in "Beloved" where the slave woman was milked? a shocking aspect of slavery that never occurred to me before I read that) by the owners? If we are free, we own ourselves, and by extension we own our body parts, including the cells of which they are made. At what level and for what purpose does such properly/justifiably become the property of another entity, by what right and what entity is such claimed? Aren't we horrified by stories of people's organs being "harvested?" I recall in the 90's when stories came out that China was harvesting organs of those executed for crimes; a co-worker (Chinese, btw) couldn't understand why that bothered me since the prisoners would have been executed anyway, apparently not understanding that the practice could provide an incentive to make more crimes capital ones.

    Ownership, and commodification to a certain extent. would be implied by the words used, such as "donation" when we part with blood and organs to be used by others, and stored in a "bank." However, our fingerprints are not donated but taken, as are blood and urine samples for alcohol and drug testing, and now DNA samples are required by law even of those arrested whether or not convicted. There's even a new law in CA that allows the DNA of family members to be used in investigating crimes.

    Obviously, my view is skewed toward the relationship of the individual to the state rather than to the market, as in other questions of commodification involving licensing, patents, gene modification, etc. But what if the state could exercise eminent domain powers over, say, genetic or cellular material present in a particular group that could be used to benefit a larger group; would one have the right to deny/withhold such? Sci-fi material, indeed.

    Another thing that leads me to think there's some fundamental idea that individuals own their cells is the element of choice. The development of the concept of informed consent was a very interesting aspect of Skloot's book for me. There are educational as well as medical/legal implications involved in the question of how to guarantee that the individual whose consent is needed adequately understands the purpose of the proposed "taking."

    My time's up for now. Hope to be able to come back later in the week.

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  77. As I noted (I think) very early in the discussion, we aren't allowed to sell our organs, although we can give them away in certain circumstances, and like nyt, I'm horrified by the takings to which she alluded. It seems to me that these social and legal circumscriptions would also govern the disposition of our cells, but apparently not.

    Unlike nyt, I was excited when I read of the Berkeley DNA project. Given the multitude of ways it was to be expressed it seemed a great learning opportunity both for the students and for the science community which would be analyzing and collating the data. As for protecting the students from themselves, there was nothing to require any individual to obtain the information about him/herself. A certain number of very young adults, just like a certain number of older ones, will behave in stupid, life-endangering or -ending ways and most of them will behave in life-preserving and -enhancing ways. They are adults, able to vote, perform military service, execute contracts. Why should they be deprived of knowledge?

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  78. NY, good to have you back!

    Carol, but we can sell our blood -- people apparently do it here (a college town) all the time -- which I think is very odd when you think about it. And yet, wasn't the hemophiliac Gintaras mentioned unable in the end to profit from his little body-based business?

    It all gets very tricky when profit from body parts of any size gets involved. Whatever happened to public good?

    I, too, was fascinated by the Berkeley story. I "get" what they are trying to accomplish. Give students an opportunity to engage with science on a first-hand basis regardless of their major.

    Odd, too, that we have to worry about protecting them from this kind of information. I think it's more in the realm of getting insurance, jobs, etc., that they should worry, which brings up Trippler's argument about universal health care. Then that wouldn't be an issue.

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  79. As for informed consent, what do we have to sign to give a hospital or caregiver permission to take our blood or do a biopsy? I'm assuming we sign something that gives them the right to do the procedure -- although I don't recall doing so when I've had my cholesterol screened, for example.

    But what if my blood sample turns out to contain the cure for cancer? Did I consent to that?

    In Lacks's case, she did give consent for the biopsy to be done whether or not she signed something or not. Even the autopsy samples were taken with consent of her family -- they weren't stolen from her against their will.

    For me it gets tricky when others profit specifically from them, but that's just me I guess.

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  80. avrds, I share that anxiety about the trickiness. But I see the HeLa cells, and other samples, more like ore than like gold. Until a lot of effort (and money) are expended on them they seem pretty useless. I would guess that almost all our blood that goes through the professional phlebotomist's needle for testing gets discarded as medical waste, even if it potentially was the philosopher's stone in liquid form. It was by sheer accident that Gey got the HeLa cells. Had Henrietta Lacks become ill in Clover, chances are she might not have got back to Hopkins for treatment. Had Gey been working at Women's and Children's in Boston, there would never have been a HeLa cell line. Or Skloot's book, or our conversation. So let's hear it for accident!

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  81. Interesting metaphor and, yes, it was definitely chance.

    I wonder what it was that she "caught" that created those cells in the first place -- but I suppose that's one of those unanswerable questions.

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  82. "I see the HeLa cells, and other samples, more like ore than like gold. Until a lot of effort (and money) are expended on them they seem pretty useless...."

    The one thing I would add to this is that in the case of the cells themselves, they seem to be able to reproduce without any human interference. So there isn't really any "value added" that someone should profit from. Gey gave them away and they grew wherever they went.

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  83. oh, av, isn't the fact they grew where others didn't a mere curiosity? Gey was able to give them away because his research was being funded - although fitfully and not well. Figuring out why those telomeres (sp?) enabled that immortality was a substantial value added, affording confidence in the material for persons starting multiple year/participant research projects.

    Such studies are incredibly expensive to maintain and take years to come to fruition, whether there is a positive outcome or not. My former brother-in-law was one of the first clinicians to recognize the disease we've come to know of as AIDS. He has been dead over 20 years, but papers continue to be published in which he is credited as an author because of the ideas he got his graduate students to follow. He could tell some hair-raising stories about getting freezers to store the blood and tissue samples he was taking from the many patients he was seeing, including his neighbors to store a couple of boxes in their home freezers while he sought funding for some at work. Oddly, in our circumstances here, he was on the faculty at Johns Hopkins. Since he did clinical research he probably didn't work with HeLa cells, but I don't know.

    Anyway, I tell this tale to emphasize that the cells, immortal or not, only have value when people find uses for them. We all hope those uses will be beneficial, but they do have to be paid for. Paying for them includes making a profit to encourage investment in research.

    Big pharma of course perverts both research and profit making, just like big government perverts funding to satisfy the loudest clamorers (e.g., juvenile diabetes, breast cancer, prostate cancer), not to tackle the most prevalent time-robbing and health-destroying ailments (stroke, heart attack). We need a better taxing system which will not only acknowledge the research which didn't work out but also make sure society at large doesn't give up too much.

    Well, I seem to be rattling on. I'll stop.

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  84. If we are going to look at the human body as a potential "gold mine," then a person should have the right to stake out his own mineral claim. After all, mining companies stake out claims on land.

    What I do worry about is the use of all this new information. We see how detectives try to use DNA as a sure-fire murder mystery solver, and I believe a former governor of Illinois freed a number of death row inmates because of lack of DNA matches, taken long after the crimes were committed. If the OJ Simpson trial taught us anything, it is that DNA can be tainted, and if the glove don't fit then probably the DNA doesn't fit as well.

    I just think researchers and forensic specialists are reading way too much into DNA. Sure each pattern is different, but one can imagine that the differences are very subtle, unless you stumble across some extremely virulent cancer cells like HeLa.

    To use these DNA profiles the way police are now doing so worries me, as does the potential screening by private health care companies. This takes Orwell's 1984 and brings it down to the microscopic level.

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  85. If you're interested in a reasonably smart discussion of the body as a source of income, try to catch Philosophy Talk tomorrow at noon, PDT. Two Stanford philosophy department faculty members and usually an outside guest will hash over the implications of selling body parts; I'm sure cells will come up in the conversation. I expect they will find some angles I haven't thought of; perhaps you too. They take a limited number of calls from listeners, too. The program is broadcast by KALW, 91.7 fm or over their website. KALW also offers you the opportunity to hear the show at your own time for several days; you can find the right button at KALW.org.

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  86. I'm not having a difficult a time with the last section of the book. If she had put her meetings with Deborah and the Lacks family at the front of the book it would have made much more sense, as it would have read as their search for the truth, rather than her search for the truth. I like her description of Deborah. She sounds like a great woman.

    Seems to me that she wrote the last part first anyway, and everything in front is more or less a prologue.

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  87. Interesting distinction. I guess that's ultimately my problem with the book -- it's all about the author and her "discoveries."

    But then, I didn't like the way she described the Lacks family either. They seemed like easy targets.

    Skloots is best when she's discussing the science, not the people. I liked, for example, the addendum on ethics.

    Glad you're sticking with the book.

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  88. Just about to the end, and I stick to my editorial opinion that Skloot should have flip-flopped her stories. The closing segment with the Lacks family is quite gripping and offers insights not previously covered. If the book had evolved more out of Deborah's search rather than her own search, it would have made a big difference. I loved the episode Skloot described in the motel where Deborah finally lets her look at her family history but not without coming in every 20 minutes to check on her. One gets a better sense of what Deborah had endured all those years and how important this information was to her. I also liked the way Deborah looked back on the past without anger, but with the hope of better understanding her condition. A lot to be learned from this.

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  89. Interesting that there was an 8 year gap from the time of her interviews with the Lacks family and the publication of the book. Doesn't seem like what she wrote as a "preamble" to the Lacks story justified 8 years of "research." Seems like she pretty much set aside her work, trying to find the best way to frame it and dare I say "package" it.

    In that time, Deborah died, unable to enjoy the fruits of their "work." It seems to me that this book is heavily indebted to Deborah Lacks, who shared so much of her story and records with Skloot. It really is a shame Skloot couldn't get this book to press sooner.

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  90. The issue of medical and scientific abuses upon minorities along with the lack of proper compensation to the victims has been documented in other writings. Skloot succeeded in bringing to public attention the fact that the Lacks family remains without proper redress. To this day hundreds of thousands (if not millions) of similar victims remain without redress as well. Hopefully this writing will stimulate changes that will end this long neglected injustice. Considering the popularity of the book, it is a good bet that some good may come about soon.

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  91. Greetings all, I've been unable to get back here for a while, so some of these remarks (which I may have to post in parts) may be out of date since I last looked in:

    I see things are slowing to a crawl so will take the time to thank the group as I head off on reading all-too-easily relatable to the saga of Henrietta’s cells: Margaret Atwood’s “The Year of the Flood” (first follow-up to “Oryx and Crake”—another is planned). It has been in my TBR pile since I got it for C’mas and the time seems just right. http://www.amazon.com/Year-Flood-Margaret-Atwood/dp/0307455475/ref=sr_1_1?s=books&ie=UTF8&qid=1282846802&sr=1-1 (Atwood steadfastly declines to be called a science fiction writer, but many of her themes involve extrapolating current events/trends into the future.)

    After a recap of the discussion here, I almost hesitate to write the author’s name in light of the still-surprising-to-me negativity about her, or maybe just to her success. Honestly, when I read a post attributing her success to her good looks—not a factor for me—and her “intellectually modest” work, I felt an urge to head for the frig for a saucer of milk.

    As for lack of primary sources, it seems the work is itself a primary source in certain aspects of the history, such as the medical records guarded for so long.

    Whether the book would have been improved by putting the 2nd half first, it’s hard to say. The book does have a written-as-she-went-along-and-what-she-learned-on- the-way structure, with the writer describing how she set out to write a sort of saga of the cells and later realized she couldn’t leave out the story of the story, which meant she couldn’t leave herself out because she’s the one who pursued it. I‘m pretty certain I would not have been able to pursue the matter (or much else!) for so long and with the cooperation of so many, then leave out what many may consider the most compelling part.

    (Cont.)

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  92. Part 2:

    I don’t know the basis for what one poster wrote about the author being only motivated by money—what led to that conclusion? Would it have been the same if the public had shown no interest in the subject? And I’m resigned to not knowing why the author’s treatment of the Lacks family—or could it be the family itself?—caused such discomfort for others. I sensed no “disrespect” in their depiction—was it because their speech was rendered in dialect? Is dialect itself offensive, if so, why? As for them being “targets,” targets of what? How were they harmed?

    I do appreciate the additional resources the discussion elicited and thank the contributors. As for a “different” Deborah Lacks in the documentary, she may very well have been more confident, etc. on film—how much time did the filmmaker spend with her (and who did the editing)? It seems perfectly possible to me that she could appear one way in a film and be freer to be herself with someone (dare I say of the same gender?) she knew much longer, with her complexities revealed by greater time and exposure, and with neither observer being wrong or untruthful. I’m happy at least one other shared my respect for her “remarkable” nature and her struggle to learn about/understand her mother in spite of the fear, anxiety, etc. the struggle to know involved.

    Speaking of fear, anxiety, etc., that part of such based in racial (and don’t forget class) distrust—the sources and development of which were so well described—as well as the effort to overcome it, even for one daughter or one family, may be what some readers responded to. I’m going to choose to hope so.

    (Cont.)

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  93. Part 3 of 3:


    I’m so glad the discussion turned to other issues, such as “commodification” of bodies/body parts. It occurred to me that sperm and egg “donation” could be considered in that category, one of the more positive developments though certainly full of ethical questions. The news this week about the court decision re research on embryonic stem cells is yet another in a series of stories/issues I for one might have paid less attention to if I had not read this book.

    Many thanks to the participants in the discussion, even (or maybe especially) those who liked it so much less than I did--your willingness to complete the book in spite of your objections is to your credit.

    I’m off to the dystopian future where CorpSeCorp rules and...well, that's a discussion for elsewhere. Best regards.

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  94. Ooops, forgot to post a link to the story re stem cell research:

    http://blogs.wsj.com/law/2010/08/25/whats-next-for-stem-cell-research/

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  95. NYT, I totally respect your opinion and glad you took the time to post all of this, but in the end I still disagree with it.

    I took the book back to the library, so can't post examples of what I found so disrespectful towards the Lacks family, but my guess is that what I found distasteful, you might find perfectly okay in any event. That's why these kinds of wide ranging discussions are so interesting and illuminating. And I hope one reason we all participate. As I said earlier, if we all think the same, there's no reason to think at all.

    I wish I could remember where I heard or read it, or even who or what it was about (this is the world I live in now -- sort of all greyish when it comes to memory), but I heard or read somewhere a story about an attractive young woman who would "travel well" in promoting her book. I wish the world of publishing were otherwise, but this is part of their understandable considerations. They are out to sell product after all. Whether or not that was a consideration for Skloot who knows? But trust me on this, that is a major consideration for publishing.

    And as my writer friends are fond of saying, only a fool writes for anything but money.

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  96. Trippler, I agree. There was an editorial in the NYTimes the other day pooh-poohing people who believe in conspiracy theories.

    One of the commentators used the experiments at Tuskegee experiments as an example of how "foolish" such conspiracy theories are. While I"m not inclined to believe in conspiracies generally -- too much money to be made by uncovering them -- this is one of those areas that this country has a real serious track record with.

    I particularly liked reading the article Gintaras linked that showed the obsession the research community had at the time with syphilis and the black community. Horrible legacy that Henrietta Lacks is part of.

    This discussion and hopefully hundreds like it are taking place around the country because of this book (and even in Lithuania -- welcome back Gintaras).

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  97. I suppose anytime a book gets as much attention as this one has, it invites more scrutiny. I imagine her motivations were good and that the success of the book will most likely inspire her to do more in addressing the issues she raised in the book. But, I really didn't see the need to turn persons like Gey into "bad guys" when they too were pursuing what they regarded as the "common good."

    Anyway, I enjoyed the discussion, the turns the discussions took and the book itself. It raised my awareness of the subject, which was almost nil before hand. I guess I would call it a good bad book as Orwell once said of Uncle Tom's Cabin,

    "It is an unintentionally ludicrous book, full of preposterous melodramatic incidents; it is also deeply moving and essentially true; it is hard to say which quality outweighs the other."

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  98. What a dull world it would be if we all agreed on everything. Gintaras, what an apt remark by Orwell. As Skloot herself points out, she used all the means she could think of, from writing for "O" in order to get on Oprah's show to serving as a functionary of the National Book Critics Circle for several years, to get her book a positive reception. Her publicity shots show that she perceives herself, rightly, to be pretty, a condition that usually is more beneficial than not. This is, I suppose, what's needed for publishing success. I do wish that her writing skills were as good as her subject (but see Gintaras' Orwell cite above).
    She does a good job with explaining the science of it all; it's with the humanity that I think she misses the mark.

    Thank you for inviting me in to participate in this discussion. I look forward to future conversations through which I might learn something more about our nation's history. It's been a long time since the bicentennial, when I read all those multi-volume biographies of the founding fathers and their successors, and I"m sure the understanding of their positive and negative influence and effect has changed a lot.

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  99. Thanks for joining us, Carol!

    And yes, Gintaras' quote is the perfect way to sum up the discussion I think.

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  100. Thanks for responding, folks, and sorry if my posting lagtime detracted from the flow of the discussion--getting laptop time when teacher-husband and student-daughter return to school at the same time becomes problematical.

    I think my foray into fiction will not take long and would love to read "Zeitoun." I don't know how the 1 city 1 book program works but will check it out. I requested it for C'mas less precisely than I should have, as "Dave Eggers new book" so it wasn't entirely the fault of a somewhat hasty shopper (or maybe a less-than-up-to-date bookstore worker) that I was given "What Is The What" instead. I have not yet braced myself sufficiently to read that.

    Also, it's not Amer. History, but a co-worker came into my office last week raving about "Hunting Eichmann"

    http://www.amazon.com/Hunting-Eichmann-Survivors-Agency-Notorious/dp/0547248024/ref=sr_1_1?s=books&ie=UTF8&qid=1282957330&sr=1-1

    and I admit it did sound riveting.

    I'll check back anon, best regards in the meantime.

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  101. HA, I see I just submitted post #100 in this discussion. Remember when posters would jockey for such back in the very oldest NYT forums--guess it wasn't all heady ratiocination...

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  102. Congrats, NYT, on #100. You should enjoy Zeitoun.

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  103. I didn't realize I'd missed reading so many of the comments here until just now, perhaps because I usually check in on the latest postings on the left side of the website.

    There was a company that sold the cells. Gey didn't profit from them, but the company (or was there more than one?) sold the multiplying cells to various researchers around the world. So someone did profit from this, and it wasn't the donor.

    I do think that Skloot's intentions were honorable and I'm glad that the book has done so well. It's not a perfect account, but it was a good, interesting read. She brought this all to public attention, and now Henrietta L's burial site has a good headstone.

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