On Friday, I wrote a post about the 20th anniversary of my PhD dissertation defense and my reverence for Henrietta Lacks, the woman whose cervical cancer gave rise to the first immortalized human cell line and the primary system for my work. I also alluded to The Immortal Life of Henrietta Lacks, the upcoming book by Rebecca Skloot that is already garnering extensive pre-release praise.
I was, as readers have come to expect, quite a bit sentimental and reflective, with a call that we all do our part to somehow acknowledge those patients whose tissues make it possible for us scientists to do our work.
If I anticipated any response, it was perhaps a few congratulations on the anniversary. However, I didn't expect my singling out of HeLa cells to draw any contention. Regular reader and colleague, Jonathan wrote:
Really? Seems a bit extreme to me. Even if IRBs allowed for naming of donors, it would have been completely infeasible to describe each of the CABG patients whose leftover saphenous vein, IMA and radial arteries were used for my primary cell cultures.
HeLa cells have an interesting story, but what about all the other immortalized cell lines that we use in the lab? How about all those primary cell cultures? It seems odd selecting one person to put on a pedestal.
Widely-engaged commenter becca noted that this wasn't just an interesting story, but rather a fable with a moral. Another commenter got a bit passive-aggressive challenging Jonathan on whether my suggestion was "extreme" or just that he couldn't be bothered with acknowledging those who made his work possible.
Jonathan then responded:
Over the course of three years, I think I used between 40 and 50 different primary cultures. Ignoring for a second the *enormous* ethical issue with naming the anonymized patients who donated these bits of tissue (the sort of thing an IRB would shut down a lab for in the UK) it would have doubled the size of my thesis. All sentimentality aside, I was doing pharmacology, not social science.
I also find it a double standard. Why should HeLa cells receive this distinction but not whoever was behind the A549 cell line? Or the BEAS-2B? Or any of the hESCs? You try doing the same with one of the hESC donors and see where that gets you? Given the way the NIH ethics rules have been written, you'd probably be blacklisted from receiving grant funding in the future.
Who were those rules (and the other IRB rules anonymizing patients) written by? Heartless men in white coats or the bioethics community? Have you ever met people who work in bioethics/ELSI? I have, they're not the heartless white coat types.
I've had the pleasure of meeting Jonathan so I feel that perhaps he misunderstood my point and was getting a bit defensive at the commenters. So, here was my response which, as often happens, is long enough to be its own blog post:
Hi, Jonathan - my call for acknowledgment of cell donors was primarily intended for tumor lines but you raise a good point about the far more common, and numerous, donations of normal tissue from people who don't die. I would never, never, ever suggest that we violate ethics regarding the identity of tissue donors and I'm sorry if my writing was unclear in that regard.Perhaps what I'm proposing is not clear: I'm not asking that an author devote 10 years of her life to expertly crafting a 300+ page book on each and every person whose cancer cells gave rise to an immortalized cell line. I'm just asking, as I do of my students, that one take a moment to acknowledge in dissertations and papers, the original source of the cells. My larger call, for some sort of memorial service as is done for cadavers, might be considered maudlin by some, but I think is very important for basic scientists to understand that much human suffering was associated with the tools they now use. Places like M.D. Anderson and the NCI are, for example, places where dozens if not more human cell lines were established. Would it kill anyone there to have an annual, 30-60 min memorial service to honor donors of biological tissues, many of whom are no longer with us?
I have to disagree strongly with Jonathan that a double standard exists for HeLa cells vs A549s. I thought I knew the HeLa story too but realized, upon serving as a scientific reviewer for Rebecca's manuscript (The Immortal Life of Henrietta Lacks - release date February 2, 2010), that my knowledge barely scratched the surface of just how special these cells and this story were. It was the first immortalized human cell line and led to an amazing series of studies that fueled two Nobel Prizes, contributed to the development of the polio vaccine, and illustrates the chasm in racial attitudes in medicine that continues today. The cells are a connection to an embarrassing time in our history when tissues were taken from disadvantaged groups without consent, when blacks could not get care in white hospitals and, even at Hopkins, there were separate clinics, bathrooms, and water fountains for the "colored." This was not the 1890s but rather the 1950s, when my Mom and Dad were in high school.
Moreover, the cells have been used in about 60,000 publications and have taught us innumerable lessons about the need for cell culture hygiene due to their ability to contaminate other cultures and completely outgrow original lines. I could go on but when the book becomes available in February, I'd like to buy a copy for Jonathan so that we may continue this discussion.
(btw, A549s have been pretty important, too, especially in the field of epidermal growth factor biology - they were isolated at NCI in 1971 from a 58-year-old white man with adenocarcinoma of the lung - one member of the team was the internationally-recognized cancer biologist and current head of oncological sciences at Mt. Sinai, Stuart Aaronson.)
Medical sociologists are now pointing out that our past cavalier (and unethical) attitude toward clinical trials subjects continues to impact a great deal on recruitment strategies, particularly among African Americans. There remains a tremendous degree of misunderstanding and mistrust of the establishment that makes it challenging for the study of health disparities. The CISCRP Everyday Medical Heroes program is just one public awareness campaign ongoing to recognize the importance of clinical trials participants (which include the donors of primary tissue for your work).
Indeed, Jonathan did note that I was being sentimental but submitted that in his thesis, he was "doing pharmacology, not social science."
I contend that even though I am also a pharmacologist, I find it important to acknowledge the hard work that went into all of my reagents, especially those where people literally gave of themselves for my work. It's for that very reason that I categorized this post in the "Medicine & Health" ScienceBlogs channel, not "Humanities & Social Science."
So, while I'm not asking that everyone agree with me, am I being "extreme" in asking that:
- we all include in our papers a reference to the original paper on isolation of the cells we use or some other acknowledgment of the good people whose tissues benefit our work?;
- that we consider an annual ceremony to honor those, living and dead, whose anatomical gifts of even cells make our work possible?
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I love the CISCRP campaign; something like this is a great way to acknowledge the importance of participating in research. I'm not big on ceremonies- I find the cadaver memorials creepy- but we do need some way to say thanks.
1. we all include in our papers a reference to the original paper on isolation of the cells we use or some other acknowledgment of the good people whose tissues benefit our work?;
I can't understand why publications don't require this. It is not just an issue of giving credit where it is due but also help keep the literature more accessible to non-specialists and those who are just starting out. And also should not papers describe their materials and methods. Obviously it would be silly for each paper to describe what a HeLa cell is therefore a reference. Of one could also not only cite the original paper but also a good reasonably modern review paper on the subject.
I, for one, never had any idea where my HeLa cells came from because it isn't ever cited. I was touched by your previous post, given how much I have learned through the use of these cells. I forwarded on the book info to others in my life who use HeLas.
When I first read the headline, "A black woman, a white boy, and a PhD," I thought you were setting us up for a joke; you know, "A black woman, a white boy, and a PhD walk into a bar...".
Instead, there's this deep and, if I may say so, moving meditation on what it means to be human, and what it means to do science.
Well done.
"1. we all include in our papers a reference to the original paper on isolation of the cells we use or some other acknowledgment of the good people whose tissues benefit our work?"
Jonathan is right, though - most donors (or their surviving kin) are promised anonymity as part of the deal. Not being named is seen as a crucial benefit, not a drawback. So at the very least you could only ethically name those donors that explicitly gave their consent to be identified.
And arguably, the family should perhaps have a say in this too. Let's take the contrived but possible example of googling the name of your late father, struck down by cancer, and finding a paper that found the gene for Huntington's disease in his cell line.
Honoring these people in "bulk" is a good thing, I think. But identifying individuals like this really brings little good and a lot of potential harm.
it depends so much on the individual donor, too. i could see my way clear to donating my carcass to science (although hopefully i have another four decades or so left in it), but i'm just vain enough that i'd want credit for it. even posthumously.
I think there can be no disagreement that the original sources of the cell lines should get cited.
I also to disagree with Jonathan that a double standard exists for HeLa cells vs A549s.However it is routine matter in scientific world to agree and disagree because things are improved by this way
Hela cells were definitely amazing. From the naming of those cells to its very use in research.
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