Born a poor, black tobacco
farmer, her cancer cells – taken without her knowledge – became a
multimillion-dollar industry and one of the most important tools in
medicine. Yet Henrietta's family did not learn of her “immortality”
until more than twenty years after her death, with devastating
consequences.
I hear and read so many
accounts of research companies using unethical practices for the
greater good of us all, I find this worrying and a dilemma. I am
interested to read the story of Henrietta and her family. To
hopefully gain some insight into the workings of some of these
companies , to maybe see how these scientists explain their actions.
I wonder what we will learn from reading this story?
What will
surprise us the most?
What will disturb us the most?
Thank you, Nancy, for whatever you wrote on our behalf to the aspiring author. I’m very appreciative of your diplomacy. And thank you, too, for displaying the cover of this month’s book. That picture, referred to several times in the text, does not appear in my copy. It has lots of pictures, but not that one.
ReplyDeleteAs a work of creative non-fiction I thought this was terrific. I can’t claim to have understood all Ms. Skloot had to tell me about cells and their uses, but I certainly got the point of the main argument over an individual’s ownership of their tissues/cells and the complexities that causes researchers.
I perhaps ought to say that I carry an organ donor card so if medical science wants any of me when I’m gone, it’s legally welcome to take it for free. There again, I don’t need the money that selling a kidney, being a surrogate mother, etc. brings to the world’s poor. Turning cells into a commodity is simply another aspect of the increasing commercialisation of medicine. (Anyone seen/read “The Constant Gardener” about drug companies and their behaviour in Africa?) So, I’m appalled that there’s such poverty in the world that everything has a price, even/especially a body part.
We might want to read “Never Let Me Go” by Kazio Ishigura. It’s set in a future in which ways have been found to ensure a supply of body parts.
So, what am I trying to say? That I am seriously disturbed by anyone trying to make money out of other people’s ill health, be it private individuals or commercial organisations. In an ideal world, medical services would be free and available to everyone. It doesn’t happen (though it did in the U.K. when I was growing up) and this book shows what can happen, on a small scale, when medicine becomes business. We need a differently structured world community. (And I do recognise the idealism and naivety behind that statement.)
Given the racial tensions in America at the time Henrietta’s cells were taken, I was surprised that more wasn’t made of the cells’ racial origins. And how the world has changed in terms of the safe storage of medical resources. The picture painted of research labs in the 1960s was frightening. I suppose fifty years from now our current methods will seem insanitary and haphazard, too.
Of course, what was really distressing and made gripping reading was the stuff on Henrietta’s family. The contrast between the emotional impact of these chapters and the controlled distillation of knowledge in other chapters was stark. And the portrayal of the family was hugely distressing. The slave origins, the cruelty of poverty, its ignorance and brutality, the dreadful findings at Crownsville . . . and Deborah: I couldn’t have coped with Deborah. Yet she was only the product of her background. I have to say that I was rather confused by all the personalities in the family, though that’s not Ms. Skloot’s fault. I should have made greater use of the excellent index.
I could go on and on here, but I think I’ve said what I learned and what surprised and disturbed me. So perhaps I should hold my peace. I’ll be very interested to hear what you have to say, ladies, because our views are bound to be shaped by our own medical experiences.
I'll be travelling soon, so it might be a while before I post again.
Love to you both
Sue
Hello Ladies! Hope you are both doing well. Sue have fun on your travels! Nancy, is summer on its way? It's getting cold here. We've had to buy more warm outfits for Benjamin since he has almost grown out of his three month clothes! I agree with Sue, thank you Nancy for speaking with that novelist!
ReplyDeleteI found this book incredibly interesting. It was like a refresher of my Radiation Biology class. The extend of the scientific benefits from Henrietta's cells is mind blowing; So many incredible discoveries from those little cells that went haywire! Just think! If Henrietta had never gotten cancer, we wouldn't have a prevention for polio or know so much about human cells and DNA. Despite all the benefits, I do agree that the researcher staff were wrong in their method of collecting Henrietta's cells. In an age when "doctor knew best", the staff could have easily acquired Henrietta's cells while still keeping her and her family informed. They could have told Henrietta that they were taking her cells and she probably would have said "ok", since this is what patients in the 50s typically did. This may sound like I'm saying it would be ethically correct for the researchers to bully an under-educated impoverished individual but I don't mean it that way. It just would have been a possible situation based upon the mentality of patients in that time. Now patients are much more involved with their care. Informed consent is crucial to my every day. I cannot and will not touch a patient until that document is signed. This is as much to protect the patient as it is to protect me! In your respective countries in the 40's-60's, did the "doctor knows best" mentality rule the medical field? Are informed consent and HIPPA (or some equivalent) a big deal in England and Australia?
Sue, you mention your surprise that a bigger deal wasn't made about Henrietta's race in regard to its use in research. I didn't even think of that but you are absolutely right. During a time, when "colored blood" was separated from "white blood", you would think that they would not want "colored cells" to be used for whites under the same mindset. That is a very interesting point.
The thing I found most surprising and a bit disturbing was actually in the afterword of the book. Skloot says that researchers today take any discarded tissues such as infants' foreskins and removed organs. This is done without the patient's knowledge. That is kind of terrifying. How many of my cells are being experimented on right now? I had my tonsils removed several years ago. Are those cells still alive and growing in a petri dish somewhere? I find that thought to be both fascinating and creepy. I had no idea that they did anything other than destroy these tissues. So the question becomes: Is this a good thing or bad thing? Should patients be informed of this? I suppose I don't mind the idea of them using my tissues for research. I don't think I need to be informed but it would be interesting to know. Am I a "KaCh"? (haha) How do you ladies feel about that? In this book, Skloot is only talking about the American medical/research field. Should we assume that these are the same practices in England and Australia?
Nancy, this was an incredible pick. I saw this book on a list of books that "women should read". Why the list's author felt this book should be read by women in general is beyond me. I would think that men could read it and appreciate it just as thoroughly as women. But regardless, the subject matter interested me so much I was going to read it anyway. Lucky for me I get to discuss it with you both!
Hello Ladies
ReplyDeleteA very quick note - we leave this morning and suitcases still not packed.
Very slack about discarded tissues here, too. In fact discarded and apparently forgotten bits have been found in hospital basements - tragically, bits which should have been buried with young children. I lost tonsils and adenoids in the early fifties. One does indeed wonder where they are now.
It was "doctor knows best" until relatively recently. My Mum was a nurse and still she says we shouldn't bother the doctor with what she considers to be minor ailments. Seems nurses felt doctors were too important to bother about run-of-the-mill illness.
Given your scientific and medical background, Katie, this must have been so much more meaningful to you - really good to read your comments.
From a rather fraught
Sue
Hello Ladies,
ReplyDeleteSorry for again dragging the chain in my comments on what I found to be a very interesting book.
I have been kept busy the last couple of weeks with mum and dad's various ailments. Dad's ticker goes on the blink every so often, and poor Mum who is always a little anxious gets a little out of control sometimes !! At present though, all is calm and I have found time to finally make comment.
As usual you both raise some really interesting points, and I was also surprised by the use by research companies of our discarded tissues. I thought about this and I actually don't mind what they do with my excess bits [I am an avid recycler], although I do find it disturbing to wonder what kinds of research this may be. Considering the uncontrolled way Dr Gey sold off Henrietta's cells to anyone wanting to do research I would assume there is a black market in cell research for all sorts of sinister things, just as there is a black market for body parts. I think I've just scared myself !!
The story of Henrietta and her family is depressing but sadly not an unusual one in the context of the times. I wonder if things would really have been any different for them if they had given formal consent or if in fact they never knew that that their mother's cells had been taken [just as we didn't realise our tissues were being used before we read this book].?
Katie you asked about the" Dr knows best "mentality in Australia now and in the past. I know from experience with my own parents they would never have questioned a Doctor's decision and often took medications without really being sure what they were for or the side effects involved, now I find it amusing, they still will not question a Doctor but have no problem telling me to do it. So little by little maybe we all can become responsible for our own health. A quick addendum to this is Dr's rarely make it easy to question their decisions either.
Sue, I haven't had a chance to watch "The Constant Gardener" , I did read the reviews and checked out the trailer, I thought it looked interesting and it is on my movies to see list. I read Ann Patchett's State of Wonder last month and this was also about research companies and putting profits before people ethos, it was an interesting read.
Will I put Kazio Ishigura's book on our list ?
I have another sneaky suggestion[nothing to do with this topic] Jasper Jones by Craig Silvey.
Katie, anything you would like to add to our list?
Sue, I am very envious of you and your travels and really hope you and Jay are having a ball.
Katie, enjoy the first of many Christmases as a parent, it is so wonderful.
Merry Christmas to all and Happy Holidays
love Nancy
I keep forgetting to suggest books! So I will do this quickly before work
Deletewild- cheryl strayed
atonement- ian mcewan