I received a copy of Rebecca Skloot's new book The Immortal Life of Henrietta Lacks before Christmas. I read it while my family and I traveled to Phoenix and have thought about it almost every day since. It's gotten coverage around these parts, and yet I have struggled for the words to describe just how deeply her book affected me. So, before I share with you the things I experienced reading this book, I want to be sure to give you my review:
This is, without a doubt, the single best piece of non-fiction I have ever read. It is one of the most important stories of the last 100 years and should be required reading for every scientist and physician-in-training.
In short, I loved it and consider myself among Rebecca Skloot's biggest fans.
From an article in the Smithsonian Magazine:
Medical researchers use laboratory-grown human cells to learn the intricacies of how cells work and test theories about the causes and treatment of diseases. The cell lines they need are "immortal"--they can grow indefinitely, be frozen for decades, divided into different batches and shared among scientists. In 1951, a scientist at Johns Hopkins Hospital in Baltimore, Maryland, created the first immortal human cell line with a tissue sample taken from a young black woman with cervical cancer. Those cells, called HeLa cells, quickly became invaluable to medical research--though their donor remained a mystery for decades. In her new book, The Immortal Life of Henrietta Lacks, journalist Rebecca Skloot tracks down the story of the source of the amazing HeLa cells, Henrietta Lacks, and documents the cell line's impact on both modern medicine and the Lacks family.
I remember being both an undergraduate and graduate student and learning that HeLa cells were derived from the donated cervical cancer tissue of a woman named "Helen Lane." I have memories of seeing and touching HeLa cells, never thinking of their origins because they seemed so benign.
Figure 1: The most important woman in biomedical research with her husband David.The reality is that the cervical cancer tissue that later gave rise to the immortal HeLa cell line was taken from Henrietta Lacks, a poor black tobacco farmer, and used in research without her consent or the knowledge of her family. Pictures of her cancer and her medical records have been disclosed. Rebecca describes how Henrietta's family came to learn about the formation of HeLa cells in the Smithsonian interview. She says:
The aftermath of this event - the informing of Henrietta's family about the existence of HeLa cells - is a central theme of the book and one that resonated strongly with me. I had the good fortune of meeting Rebecca at ScienceOnline, where we had the opportunity to sit and chat over lunch. In speaking with her, it became incredibly clear how well she had come to know this family and what a strong bond she had formed with them, especially Henrietta's daughter Deborah. This is reflected in her writing and, indeed, I would not have had the response I had to the book were it not for Rebecca's description of her interactions with Henrietta's family. Although I hadn't met her until ScienceOnline, I developed a respect for Rebecca in seeing the dignity with which she treated Henrietta's family in her book - a family that had clearly been treated as subjects instead of people.
Reading about Deborah Lacks was painful for me. Like Deborah, I lost my mother when she was in her 30s. There is so much of my mother I don't remember. As an adult I have formed relationships with the adult members of my family (my father, aunts and uncles, grandparents) that are different and richer than the relationships we shared when I was a child. I have frequently mourned the loss of that relationship with my mother and wondered about what she was really like. When she died, one of her few possessions that I received was her hairbrush. I clung to that hairbrush, with the strands of her auburn hair tangled in the bristles, as the last tangible part of her, for years. Those strands were as real a part of her, tangled in the hairbrush, as they had been while among the other thousands on her head. Those little pieces of her. Insignificant to everyone but me. I understand how Deborah could see these cells as a real part of her mother.
I also remember the event of her dying. The flurry of last minute medications, the tubes, the fluids, the devices, all carefully documented by the medical establishment in a manila folder. And the last moment of holding her hand and saying goodbye, documented by no one but me. I can't imagine how I would react to find these records, stripped of her personhood, disseminated with out my knowledge and the pictures of her published to satisfy scientific curiosity.
When I began this post, I thought about writing about how I interpreted this book as a scientist performing human research and discussing the finer academic aspects of informed consent. We can discuss the conduct of science later because each time I think about Henrietta's family I come back to the incredible hurt this single event caused them and believe that warrants a discussion independent of the use of the HeLa cell. This book is a reminder of the responsibility we have to treat each other with dignity, and the importance of considering how our interactions affect those who may not share our cultural values. Rebecca's prose is artful, the details factually and scientifically accurate, and her ability to move me to tears took me by surprise. As someone who has held a piece of Henrietta Lacks in my hands, The Immortal Life of Henrietta Lacks made me want to reach out to Henrietta's family, tell them how very sorry I am, and how incredibly thankful I am for what their mother gave us.
You can purchase your copy through any of the major vendors. Rebecca has committed a portion of the proceeds from her book sales to the Henrietta Lacks Foundation - a scholarship fund designed to:
provide financial assistance in the form of scholarships to the descendants of Henrietta Lacks, giving those who have benefited from HeLa cells -- including scientists, universities, corporations, and the general public -- a way to show thanks to Henrietta and her family, while helping her descendants receive the education that generations before them weren't able to afford.
Given available funds, in addition to providing support for members of Henrietta Lacks's family, the foundation will seek to provide financial assistance to other African Americans in need who are pursuing education in science and medicine.
You can also donate directly by visiting Rebecca's website.
Medicine & Health
Life Science
Comments
Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.
Posted by: cheap r4ds | February 2, 2010 4:57 AM
This story has particular meaning for me because my Mother died of cervical cancer in 1985 after a fight that lasted over 25 years. (initial hysterectomy, 3 recurrences, the last of which killed her)
She was a light skinned African American, so much so that I am not sure people would have known if they had not read her record, so I don't know how much race played in her her treatment, but I do know that after the 2nd recurrence she became one of the longest surviving persons with this type of cancer on record, and we began to see people appear (doctors, clinicians, etc.) who were interested in why she and not others. Reading about this case makes me wonder if there is a line of her cells somewhere. I don't really know how I'd feel about that.
Posted by: alice berry | February 2, 2010 8:58 AM
While I did not have the same personal connection to Dr. Skloot's book as Dr. Isis, I found the the story moving and troubling (in a good way). It disturbs the foundation upon which we build assumptions of what constitutes ethical responsibility and "informed" consent, and reminds me that the educated and under-educated in this country often don't speak anything close to the same language, and the educated often don't feel motivated to "lower" themselves to communicate effectively with the media and with research subjects. It hearkens back to the summer '09 kerfuffle over Chris Mooney and Sheril Kershinbaum's book. The lack of awareness exhibited by the original researchers, and their scientific descendants, is sad and frustrating. No wonder Lacks' descendants and their neighbors remained suspicious and resentful of Johns Hopkins and the scientific community.
Speaking as a non-scientist, I found the book well-organized, thorough in its explanation of the ethical and scientific principles involved, but very easy to read. It transitions smoothly between the story of Henrietta's cells and Henrietta's family, which gives the text great forward momentum. The book is a fitting tribute to Henrietta Lacks and, most importantly, will make her children, grandchildren, and great-grandchildren proud.
Posted by: Mr. Isis | February 2, 2010 10:47 AM
My copy has downloaded (I got a Kindle for Christmas) and will probably be read in 1 sitting this evening.
I remember an article on the war on cancer in the mid-1970's (I believe it was in National Geographic). I was a biology-loving high school student who wanted to be a doctor, and I devoured this article. It included photos of cultured HeLa cells and one of Henrietta Lacks. I can't wait to read this book.
Posted by: Pascale | February 2, 2010 11:24 AM
Dr. Isis, this is a beautiful post. For me, one of the most wonderful things about becoming a mother has been the deepening of my relationship with my own mother. I am so sorry that you did not get that chance.
I look forward to reading this book someday soon. Maybe I can get my book club to read it- it seems I only have time to read book club books these days. My book club is mostly scientists, so it would probably lead to an interesting discussion.
Posted by: Cloud | February 2, 2010 12:32 PM
Great post Isis. We all know the basic origin of HeLa cells but this would be good to get an in-depth learning on the full background. I'm ordering the book as I post. Thanks.
Posted by: Genomic Repairman | February 2, 2010 2:20 PM
A very moving and sensitive post (as usual). I think, those of us who are educators, need to realise that the communication gap described here between the scientist and Henrietta's family is no different from the communication gap between ourselves and our students - particularly in the impersonal setting of a lecture or seminar.
It emphasises that we need to keep questioning our students about the mental images and pictures THEY have in their heads, because the words and phrases we sometimes use automatically, knowing their specific meaning, have a range of different meanings to the non-professional.
And of course, it is even more important to think of this when we are communicating with the general public.
Good point, Isis.
d.
Posted by: d. | February 2, 2010 4:31 PM
Let me first say, I've not read the book. I am not a scientist. I understand the ethical issues underlying the use of the woman's tissue, but I can't really see the great harm to Ms. Lack's family that is being portrayed here.
Was she denied treatment? Abused by the medical community in life? All I can see at this point is that some cancer cells were kept for research. Some more detail as to the harm would be helpful.
Posted by: Memlaw | February 2, 2010 10:05 PM
Lovely post.
I preordered a copy of the book weeks ago and just got word today that it's been shipped. Can't wait for it to arrive...
Posted by: Candid Engineer | February 2, 2010 10:14 PM
I actually didn't know the origin of HeLa cells, since I've only recently been introduced to them through other people's research talks. At first, your post made me happy, to hear that HeLa cells had a name, and an amazing place in history. Then, I read that no one told her, or her family. While I hope my research and contributions to my field will help move mountains, if I were to be used so heartlessly, I would feel used, hurt, and humiliated. While the wrongs done to the Lacks family are great, I just hope they understand how much their mom means to so many of us, even though it wasn't her choice.
Posted by: ktbug ladydid | February 2, 2010 11:01 PM
Can you spot where you've gone wrong here?
Posted by: 20 seconds | February 3, 2010 2:58 AM
Sorry, but what I've read in this blog indicates that the book is about abuse in general of minorities by the medical community. A very important and worthwhile topic indeed, but I see no indication of what any of that has to do with this woman and these cells. When my father was dying of cancer, he was asked by the doctors if they could do an autopsy for further research. He, of course, said yes.
It was nice of the doctors to ask, but really, what did it matter whether he gave his permission or not? I can see that an autopsy could be a big deal for some, but as far as taking simple tissue samples, what's the big deal? Further, and more specific to this book, why should or would a family be paid for such things?
Posted by: Memlaw | February 3, 2010 9:56 AM
Memlaw, you're absolutely right. For that matter, why should I ask permission when I put a heart catheter in someone's child or expose them to an investigational new drug? I mean, it's just a child. What's the big deal?
Posted by: Isis the Scientist | February 3, 2010 1:03 PM
Memlaw, I hear you. Once one is dead, it's just a carcase, essentially useless, while tissue samples (and/or even body parts) might be of an ongoing good use - in my view, the longer the better.
Posted by: olebabe | February 3, 2010 1:34 PM
memlaw, olebabe- I, personally, would have no problem with my cells living on in perpetuity after my death. But you don't get to make that decision for other people. Do you really think that you should? Where would you draw the line? Who gets to decide what is "good use"? Just think your argument through. We have informed consent rules for a very good reason.
Posted by: Cloud | February 3, 2010 4:18 PM
Cloud,
If it causes no harm to the patient, what's the difference?
Courts have already ruled that we don't own our surgically removed tissue, and that's as it should be. Of course we need informed consent to procedures that may cause varying outcomes, but informed consent (or payment even} for use of our biopsied tissue? Why?
Posted by: Memlaw | February 3, 2010 6:07 PM
Isis,
Surely you see the difference between needing consent for procedures that may have varying outcomes (such as those you cite), and consent to make use of tissue that is otherwise useless to anyone, including the patient.
Posted by: Memlaw | February 3, 2010 6:11 PM
I find your utilitarian argument ironically self-serving and unconvincing. If we are to assume that any tissue that "the patient doesn't need" belongs to society, then....what?
You need to reconsider what you think "harm to the patient" means. You seem, based on what you've written, to have a very narrow view of this concept, perhaps something to do with a procedure causing physical/mortal harm, as you might define it. Is it possible that other rational people define harm differently than you do?
Posted by: PalMD | February 3, 2010 8:03 PM
I call Memlaw's fingernails! S/he's totally not using them productively, and they can be removed painlessly under anesthesia, and I totally have a cool plan for them that I promise doesn't involve a board game.
Posted by: MonkeyPox | February 3, 2010 8:05 PM
Memlaw- who are you to decide what causes harm? I think in the HeLa case, harm was caused to the patient's family.
Again, I say: you can decide these things for yourself and possibly also members of your family. But you have absolutely no right to decide them for other people, whose belief system may be utterly different than yours.
Posted by: Cloud | February 3, 2010 11:33 PM
Isis, thank you for writing this. I lost my dad when I was 36 and know exactly what you mean about such small things as your mother's hair. My dad was a devoted fly fisherman and when I stopped tying flies for him, he decided to learn to tie his own. So he clipped off parts of his beard, tied it to a hook, and made dozens of "beard flies," and they actually caught trout. He did this mostly to offend his fishing buddies, who bought their flies for $5 apiece from high falutin' catalogs. But still today, in the bedroom, under the bed, is a plastic box full of "beard flies" my dad made before he died. He made most of these a year or two before he died and they are weird. It's a part of his body, but tied on a little fish hook, and it's still here. Very odd. It's like he's still laughing from the hereafter.
Posted by: Douglas Watts | February 4, 2010 12:13 AM
My dad's cancer visibly ate its way through the structures in his neck, choking and starving and drowning and muting him. It is irrational, but it pisses me off to think that the cells of that murderous fucking tumor sleep at -80 degrees in some Canadian tissue repository while he's as gone as can be. And I'm a real-live scientist who's done work with HeLa cells. I'd have been thrilled to donate his organs, but those mutinous renegade cancer cells can go straight to hell.
Paying Mrs. Lacks' family is the least we could do.
Posted by: ginger | February 4, 2010 1:43 AM
If it causes no harm to the patient, what's the difference?
You seem to have an ethical dysfunction, or you are a very sick troll.
Posted by: Douglas Watts | February 4, 2010 2:26 AM
For clarification, I was talking about tissue once it is removed from the body. Certainly one has a right to say whether tissue is to be removed from one's self in the first place but after removal, it's just tissue.
You have a right to say, "take out these cancer cells" or "don't take out these cancer cells", but once they are out, they belong to the scientific community without need for compensation.
I certainly may have this all wrong in the case of Ms. Lacks (not having read the book and seemingly no one willing to address the specific situation involved), but wasn't it in her best interest to have these cervical cancer cells removed? Didn''t she want them removed? Did She want the cancer to keep growing in her?
Posted by: Memlaw | February 4, 2010 10:46 AM
Douglas Watts,
I assure you I'm not a troll. I just can't get a straight answer as to what you, or the author, expects to be done with extracted tissue. Ginger claims to be "real live scientist", and yet somehow believes that medical research would be unimpeded by having to pay for every human cell used in the lab. Really? Do you think your family should be paid for those cancer cells "sleeping" in the tissue repository?
Posted by: Memlaw | February 4, 2010 11:05 AM
Cloud,
"I think in the HeLa case, harm was caused to the patient's family."
Can you tell me what that harm was? That's all I've been asking from the start, and no one has answered yet.
Posted by: Memlaw | February 4, 2010 11:11 AM
Memlaw, did you read the description of how the family learned about the cells?
Posted by: Isis the Scientist | February 4, 2010 11:14 AM
Isis,
Yes. The actual facts of the situation were very poorly communicated, obviously. The harm you reference was shocking a family with seemingly freighting information.
But what if the matter had been properly explained so that they understood that these cells were just cells, not actually their mother? What harm then? And what does any of this have to do with the ethics surrounding the actual use of the cells for the preceding 25 years?
Posted by: Memlaw | February 4, 2010 11:59 AM
Memlaw, I haven't had time to read the book yet, either, so I am just going off of Isis' description in the post, which I assume you also read. I gather from what Isis wrote that the existence of the cells caused additional grief to Mrs. Lack's family. As a mother, that is something I would want to avoid. I would want the chance to explain to my daughter myself what was being taken and why. So the harm done was the infliction of unnecessary grief on a family that had already lost its matriarch too early.
If I follow your argument of "no harm, no foul" to its logical conclusion, then we should all be required to donate our bodies to science after we die. We should probably all be required to be organ donors, too. Should we be required to be blood donors while we're alive? Afterall, that doesn't usually cause any harm.
Where do you draw the line? Who gets to decide where that line is drawn? I think it has to be the patient, or if that is not possible, the patient's family, who makes that call.
Posted by: Cloud | February 4, 2010 12:09 PM
Cloud,
From the blog post, the only harm I can see was inflicted by the folks who contacted the family and poorly explained what it was they were doing. If the family was never contacted (though it looks like they were contacted for their own good and that of researchers) there would have been no harm at all.
"Where do we draw the line", you ask? Obviously, any person has the right to withhold consent to any procedure on one's self. Once that permission is obtained, and tissues removed, end of story. It's not that hard a line to draw.
It doesn't appear from this blog that the family was outraged that cancer cells were removed from their mother, (who wouldn't want cancer cells removed)they were upset by the poor communication that led to their thinking that their mother was still somehow "alive" and being experimented upon.
Posted by: Memlaw | February 4, 2010 12:29 PM
Memlaw- the questions is, did Mrs. Lacks really know what she was consenting to? I can't imagine any way a researcher could show up at my door and tell me that the entire biomedical community had been using immortalized cells from my grandmother (I'm happy to say that my mother is still alive) that wouldn't at least be a bit shocking. And I am trained as a biochemist, so would understand exactly what it meant.
I think Mrs. Lacks should have had the opportunity to decide for herself if she approved of that use, and to explain her decision to her family.
And to quote from the post: "Pictures of her cancer and her medical records have been disclosed." I think that the last part would be a violation of HIPAA now, so perhaps the line is not as easy to draw as you think?
But I think I'll defer any further comment on this issue until I have a chance to read the book.
Posted by: Cloud | February 4, 2010 1:29 PM
Cloud,
"I can't imagine any way a researcher could show up at my door and tell me that the entire biomedical community had been using immortalized cells from my grandmother (I'm happy to say that my mother is still alive) that wouldn't at least be a bit shocking"
I imagine you would be, as would I, surprised, but mostly pleased and honored that you were connected in some small way to advancing medicine. The Lack family apparently doesn't feel that way (mostly, I suspect, because of how it was explained to them), but it's water way under the bridge as far as the use of HeLa cells.
I think the line I gave in my prior response is easy enough to draw, and in fact has already been drawn by practice and law. The fact that Ms. Lack's records have been disclosed in violation of "lines" already in place doesn't alter viability of them.
It's, of course, sad, wrong and regrettable that minorities were treated with such callous disregard by the medical community in the recent past. I don't doubt that this book sheds light once again on this sad history. None of that, however, brings disrepute upon the uses to which HeLa cells have been put over the subsequent decades.
You can't abuse cells, can you?
Posted by: Memlaw | February 4, 2010 3:30 PM
Oh, I can't help myself....
I might actually be pretty angry if I thought my grandmother hadn't been consulted. Her religious beliefs are quite different than mine, and I have no idea what she would have thought about having an immortalized cell line derived from her cells.
HIPAA wasn't even a twinkle in a legislator's eye when the original HeLa line was created. I cited that as an example of how the line you think is so obvious has in fact moved.
You can't abuse cells, but you can abuse a person if you don't treat her with respect in obtaining those cells. Since I haven't read the book, I can't say for certain if Mrs. Lacks was treated with respect.
I haven't heard anyone argue here that we should throw out the HeLa line. Just that we should learn from this example and try to do better in the future.
Posted by: Cloud | February 4, 2010 4:24 PM
In a weird coincidence, this just popped up on my screen:
http://www.cnn.com/2010/HEALTH/02/04/baby.dna.government/index.html?hpt=C1
So, memelaw- should these parents be upset?
Posted by: Cloud | February 4, 2010 5:59 PM
Interesting article and certainly a strong argument for universal health care.
Again, consent should be obtained before harvesting DNA, or anything else, from a person. It's an easy line, obviously not being universally observed.
"You can't abuse cells, but you can abuse a person if you don't treat her with respect in obtaining those cell". I completely agree. And that's all I've been saying in these comments.
Posted by: Memlaw | February 4, 2010 10:44 PM
@ 16
Widespread public revulsion and distrust of medical research?
http://en.wikipedia.org/wiki/Alder_Hey_organs_scandal
http://news.bbc.co.uk/1/hi/england/merseyside/8486721.stm
But agreed, this is not a logical rebuttal of utilitarianism.
Posted by: Neil | February 5, 2010 8:39 AM
Cloud @ 29:
While I agree wholly that Mrs. Lacks may or may not have been treated ethically (as I wasn't there and those that were are either dead (in the case of her physicians), unable to understand at the time (in the case of her children), or were very poorly communicated with (in the case of her husband, which is an ethical question in and of itself). Anyway, your attempt at a "requirement" reductio-ad-absurdbum only makes Memlaw's point. You are arguing from an opt-in perspective (as the law is in the US) in that you think you have to give permission explicitly. Many other countries, Sweden in particular, have what are referred to as opt-out policies. In other words unless you explicitly *refuse* to be an organ or tissue donor you're fair game. Ethically, this is supported by most theologians not only because Sweden's transplant rate shot through the roof and scores more people made it off transplant lists instead of dead but because it still adheres to personal autonomy. You're not arguing ethics, just simple legalities.
Furthermore, (I know this wasn't you, Cloud) the idea that her family should be compensated is even MORE ethically dubious. What should they get? What should I get for a kidney? Can I get my med school bills paid for the left lobe of my liver? Come on. That way leads madness and even more impetuous for exploitation of the poor.
And to compare Ms. Lacks' treatment to Tuskegee is hyperbolic at best. I understand Tuskegee gives context and I'm willing to admit that Dr. Isis brought it up for that reason alone. But Tuskegee was the willful withholding of KNOWN treatment to see what happened to a person, not to cells, not controlled conditions - just go out live your life and we'll see how long it takes before you die of an aortic dissection. Mrs. Lacks on the other hand, was a whole bunch of physicians and researchers not knowing what the hell they were doing (as evidenced by the purity of HeLa cells sold now) - bad, sure, but what was better at the time? As someone who regularly consents patients for tissue procurement for xenografts and cell line transformation, what happened to Mrs. Lacks' family was regrettable and her story fascinating, but it is not the ethical horror made out here in these comments.
Posted by: Dr.FabulousShoes | February 5, 2010 3:36 PM
Dr. Fabulous Shoes- I'm actually OK with an Opt Out system. I'm all for it, in fact. It doesn't seem that Mrs. Lacks had that option, either. It seems to me (and again, I haven't had a chance to read the book, so I can't really believe I am continuing to argue) that she wasn't asked about having her cells used for research at all. She wasn't asked to opt in, and she wasn't given the opportunity to opt out.
I read Memlaw's argument to be that once your cells are out of your body, the researcher can do what he/she wants, even if you only thought you were consenting to have a tumor removed, not to being a research donor. That strikes me as ethically dubious, regardless of whether our courts have said it is legal.
It is easy for those of us whose belief system doesn't see a problem with having our cells live on in perpetuity to shrug and say "no harm, no foul", but there are other belief systems. Some people believe so strongly in maintaining the integrity of the body that they refuse autopsies, right?
I don't see any fair way to handle this other than to ask people for their consent for what you want to do.
Posted by: Cloud | February 5, 2010 5:33 PM
"I don't see any fair way to handle this other than to ask people for their consent for what you want to do."
So once you obtain consent to the removal of tissue for say "x" purpose, you will have to go back to the person if a better purpose "y" arises in the course of research. What if the person dies in the mean time. Toss out the material?
At some point we have to get past this sentimental (and illogical} attachment to our disembodied cells. As shown by the Swiss example regarding organ transplants, we are potentially missing out of a lot of good.
Posted by: memlaw | February 5, 2010 6:04 PM
No, memlaw. This is how people get around this now: they ask for consent to use biopsied cells for future research. They don't list specific experiments, they just ask for blanket permission, and give examples of what might be done. And I suspect most people say "sure! fine!"
In fact, I see no problem with having a little section on the consent form that says "check this box if you DON'T want your cells used for research". That is an opt out system.
Something like this is in fact what they do in my state with the genetic testing of babies. You're informed, given the option to opt out of having the sample used for research, and everything is fine.
The problem in the HeLa case, if I understand what happened from Dr. Isis' writeup, was that Mrs. Lacks wasn't asked about research use AT ALL. She wasn't asked to opt in. She asked if she wanted to opt out. That is what I think is wrong. I should be allowed to go in for cancer surgery and just have the cancer removed. I shouldn't have to know that I need to tell the doctor, "oh, by the way, I want you to destroy my cancer cells when you're done."
The attachment to disembodied cells is sentimental and illogical in YOUR belief system. Frankly, it is in my belief system, too. But I know that some people believe that a person's soul can never rest if their body is not intact or some such thing. I that that is utter bunk, but I also think it is not my place to tell people that they aren't allowed to try to live their life (and die) in accordance to their belief system. I also can put myself in the shoes of someone who believes that, and think of how distressed I'd be to hear that a little piece of my mother was going to be kept alive FOREVER if I believed that this meant that her soul would never get to rest.
There is a BIG difference between an opt out system and a "don't ask, just do what you want" system. The first is ethically defensible, and probably ethically superior to an opt in system in some cases. The second is paternalistic at best.
Posted by: Cloud | February 5, 2010 6:36 PM
Sorry, that should be "... she WASN'T asked if she wanted to opt out".
Posted by: Cloud | February 5, 2010 6:41 PM
Memlaw, those cells go for $264 for a 1mL pop from ATCC. So lots of people get paid for HeLa cells. Just not the Lacks family. I don't necessarily think they should be paid - but she (or her next-of-kin) should have had a choice about whether her tissue was cultured.
For that matter, I espouse the radical idea that they're your body parts even after you have them removed. Why do we treat placentas differently from arms and appendices?
Posted by: ginger | February 6, 2010 6:30 AM
Cloud:
You're missing the point of an opt-out system. The physician doesn't ASK ANYONE ANYTHING in an opt out system. You're assumed to give permission unless YOU as the patient (or patient's family) bring it up. It is the patient's responsibility initiate the conversation. That's why more people are organ donors in such a system. Obviously there are extensive public education policies on this, but that is not the individual physician's or researcher's responsibility.
Now, I'll agree Mrs. Lacks was not in either an opt-out or opt-in system at the time (since this was a totally new idea), but the ethical quandary here is the treatment of her family - not her cells. And if you think that she had her cells harvested because she was a poor black woman is ridiculous. Her cells origins may have been changed because of that (which is a tragedy) but everybody's tissue was being used for God's knows what at that time. Again, it's the treatment of the PEOPLE afterward that is unfortunate, not the treatment of her cells.
Maybe I'm skewed because my parents, soon-to-be-husband and myself already have advanced directives that I set up to have all tissues donated (he & I are full organ donors, my parents want to be anatomical cadavers) but I think it's kind of tragic to turn to dust when so much good could be done.
Posted by: Dr.FabulousShoes | February 6, 2010 11:40 AM
Cloud,
As it turns out, we are in complete agreement. We got sideways over Ms. Lack only because I view the current use of HeLa cells as now irrelevant to the obvious lack of original consent. You are still pained by the lack of consent, but also don't see any reason to stop using, or to pay for, these cells.
I suspect that informed consent regarding the use of tissue originally removed in the course of a patient is a fairly recent concern, owing mainly to concerns over genetic discrimination. Informed consent was originally developed with regard to procedures to be performed on an individual, not with a view to what may or may not be done with material removed in the procedure consented to. Am I wrong?
Posted by: memlaw | February 6, 2010 11:57 AM
Ginger,
"Why do we treat placentas differently from arms and appendices?"
Yes, why do we?
Posted by: memlaw | February 6, 2010 12:02 PM
Dr. FabulousShoes- respectfully, no I am not missing the point of an opt out system. An opt out system can only work if people are aware of the possibility that they need to opt out of something. The Swedish organ donation system works because the possibility of organ donation is a well known fact in popular culture. I submit that the possibility that your cervical cells might be cultured and used for research is not- something it seems you agree with in your second paragraph, when you say that you agree Mrs. Lacks was not operating in an opt out system.
I don't know enough of the facts of this case to have an opinion about whether Mrs. Lacks' treatment was exacerbated by racism or classism. I'd like to read the book and find out. In the meantime, if some people want to donate money to a scholarship fund for Mrs. Lacks' descendants, why not? It is an opt in system, so why should you care? In fact, since you are so in favor of opt out systems, maybe it should be set up as system in which a portion of every purchase of HeLa cells is donated to this fund unless you specify otherwise.
Posted by: Cloud | February 6, 2010 2:12 PM
Comment 44 paragraph 2 first sentence should have read "...in the course of a patient's treatment is a fairly recent..."
Posted by: memlaw | February 6, 2010 3:03 PM
I came across this book by accident. I didn't even know it was a true story. But I must admit the book took me over. I felt for that family.I do think that they should given permisson or at least be told. Today you give permission
for everything. This is only my opion.
Posted by: windy | February 25, 2010 6:59 PM
Here we go. If it is a decendant from slaves from plantations in america, then it is ok to do, us, discard, make money from just so long as they or their families do not prosper from this finding, enterprise etc.
What the heck,massa still speaking with fork tongue and stealing, thereby once again, becoming Wealthy, Wealthy an more Wealthier. May god bless all those involved int the Mrs. Lacks situation. HER FAMILY IS OWED, SO LET GO ON AND PAY THEN,TAKE CARE OF THAT LADY'S FAMILY, IT IS ONLY HUMAN KINDESS. REMEMBER WELATHY PEOPLE, "YOU REAP WHAT YOU SOW"! ! !
Posted by: sissmae newark | March 14, 2010 11:50 AM
Nothing has changed at Johns Hopkins: http://adventuresincardiology.com/
Posted by: Dan Walter | March 21, 2010 9:27 AM
I have not finished the book.....cells were removed from Hennie's cervix months prior to her death. Tumor cells AND healthy cells. This was done as part of an experiment that was ongoing by George Gey. The patient was not asked at that point. Therefore, being a guinea pig is ethically wrong. Using a patients healthy and tumorous cells for your gain while they are alive is wrong, let alone that the cells were sold to other labs and the family had no idea......Hennie hadn't even passed at that point. Thank you for the He La, sorry for the indignity to Mrs. Lacks while she was alive, and I hope her family now can afford medical insurance.
Posted by: Lacks fan | April 9, 2010 7:33 PM
For a more recent debate (1980s and 1990s) on tissue samples being retained by hospitals and the impact on families see the Alder Hey case in England. The hospital had removed organs from dead babies during post mortem without permission. Body parts, some of which were also obtained by other hospitals, were then held for medical research. Parents did not realise in signing forms of consent to the post mortems that they were also giving permission for pathologists to remove and keep the children's organs.
http://news.bbc.co.uk/1/hi/england/merseyside/8464987.stm
Posted by: British Skloot Fan | June 18, 2010 10:57 AM