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?