Yes, that seems 100% correct but I'd go further and suggest that it's fucked up and kinda selfish to suggest people should have a property interest in the cells their body produces. I'm in favor of changing the default on organ donation to yes and I don't see any reason the same considerations don't apply more strongly to cell lines. The only reasonable claim of harm one could make about this would be the identification of the cells as belonging to this specific individual -- which in this case seems to be the opposite of what people are concerned about.
Wait, if you don't own your own cells, is it just a free-for-all on your organs every time you wind up in the hospital? Anybody who can hold you down long enough can swab your cheek for a DNA test? Not sure I like the implications of that line of thinking.
What implications are those (assuming the holding you down thing was hyperbole, if your alive you still need to give consent to take the sample just don't own it afterwards)? It's generally a free for all on your image in the us for anyone with a camera (there are some rights of publicity).
I think what you describe are how things worked during Lacks' era. I think now the rule is that you have to sign a consent form for a doctor to take a sample of your cells, and depending on what studies are going on in the hospital, the form will say either "this is being done for your medical treatment only" or "this is being done for medical treatment, but might also be used in a study of such-and-such, and might also be more generically added to future studies under XYZ circumstances".
That begs the question of in what sense did Lacks experience more harm than anyone else whose cells were taken, and maybe looked at, but nothing was done with them. Why would Lacks deserve more recognition than them?
And I think this is a damning indictment of the field of bioethics. Regardless of what view you take about the ethics of harvesting the cells there are a bunch of holes in the theory about the need to deify her and they aren't saying anything about it.
I've more than once /begged/ a surgeon to take a sample of my cartilage during surgery, to test it for Borrelia, which can live inside cells in cartilage, heart, and brain, and thus be undetectable without a cell sample. They always refused, claiming that "rules" forbade them from releasing any human cells which hadn't first been thoroughly killed by something like formaldehyde. Nor would they give cell samples to a lab on another doctor's orders.
My most-charitable theory is that the regulations are so complex that no one dares to do anything unusual. My next most-charitable guess is that they're afraid they won't get paid because they don't know how to coordinate with another doctor working on another medical issue in a way that the insurance will allow. I don't know how medical research can be done under these circumstances, unless medical research is kept strictly segregated from medical care.
I'm not sure about the organ donation issue, but I'd agree that to a first approximation medical waste should be usable for science without many limits, and that the person they come from shouldn't have any special rights in them.
I'm sure there's a parade of horribles that could come out of that (e.g., producing offspring or full clones), which is why I wrote "many" and not "any". But I'm not sure that can't be handled at a different level and case by case, (e.g., no one can make a clone of you without your consent, whatever the source of the DNA) rather than specifically limiting the use of the material generally.
I think the Google Trends comparison is a bit silly. I learned about Jonas Salk from my high-school history textbook; I don't need to look up who he is, and I'm sure many others are in the same position. And he became incredibly famous and was awarded the Congressional Gold Medal and the Presidential Medal of Freedom, so it's not like he's somehow underappreciated in comparison to Lacks.
This would seem to imply that people commonly featured in high school textbooks and who everyone should know about, would have low Google Trends volume This isn't true. For example, George Washington gets about 15x higher search volume than Lacks and 60x higher than Salk. If you try other pairs of people, you'll find that the more famous one almost always has higher search volume, in proportion to their fame.
I definitely don't think people commonly featured in history textbooks will always have low Google Trends volume. I do think that Google Trends results are some linear combination of overall fame and "people hearing about the thing for the first time and needing to Google it", and that there are better ways of comparing whether two people are seen as heroes. To use your example, George Washington gets higher search volume than Lacks, but lower search volume than Kim Kardashian and TikTok, and he's spent the last couple of months getting solidly beat out by searches for George Santos.
So yes, Henrietta Lacks has been 'trendy' for the last decade or so, but I wouldn't take her Google Trends results to necessarily mean she's being elevated above Salk (who was a huge celebrity in his own time) in the long-term pantheon of scientific heroes, if that makes sense.
I agree there is some useful distinction between fame and some sort of historical dignity. Kim Kardashian is more famous than George Washington but has less historical dignity. Lacks is more famous than Salk and I'm not sure about historical dignity, probably lower but catching up.
Until this post was unlocked, I had never heard of Lacks. I think Katie M is correct that Google trends is showing that Lacks is Trendy but not commonly known.
Also search volume could be partly driven by people doing school projects on someone: they've heard of the person, but they need to research more details.
Huh! I would have guessed definitely not on Johnson (I didn't exactly know who she was, although I remember reading an article about something something women in NASA and assumed she was that). But Google Trends agrees. I wonder if there are other Katherine Johnsons who it's incorrectly picking up (I used its suggested "Katherine Johnson, American mathematician", but maybe it's not good at separating these things out)
I can't quite tell if you figured it out after Googling, but Katherine Johnson was one of the people depicted in the popular movie Hidden Figures. And Google is definitely not picking up other Katherine Johnson's -- the historical trend spikes suddenly right when the movie is released.
The irony of all this is that Salk was viewed by other scientists as something of a showboater and many felt that more credit for the vaccine should have gone to John Franklin Enders, the first to culture polio in vitro.
I remember we learned about Lacks in school, and I was always very confused about why the teacher and the book we used seemed to care so much. To me, in retrospect, there would have been a significant probability that if Salk had asked Lacks first for her cell-line, she would have refused out of distrust of the medical establishment, and the polio vaccine would never have been produced. People should be allowed to refuse the use of their property to others, but if you think that stealing bread when hungry is acceptable, then stealing Lacks’s cells anyway seems commendable.
This argument may not go through for a variety of reasons (like maybe some logical decision theory stuff, though I’m uncertain what the conclusion of that reasoning would lead to), but it just always annoyed me that nobody but me ever seemed to think of it, even those who I knew would find the argument convincing in other contexts or if it came from their own mind.
I think the issue with the stealing bread analogy is that Lacks' descendants want cash, more than what they've already gotten. And the cell line is in widespread use.
Lacks must have given consent for the sample to be taken. Was it still her property at that point? Is there any reason to believe that a person who donates blood to a lab retains control over it? Items in the garbage are generally ruled to be public property, and her tissue could easily have been put in the garbage after it was tested.
In a very cynical sense I think it would have behooved the various researchers to 'protect Lacks's anonymity" which is a very common medical standard.
Of course, I'm getting a bit afield from whether or not Lacks should be revered as a human being. In that sense, she seems very much like a bystander rather than someone whose behavior is worthy of emulation, as Scott discussed.
Eh, you’re right that Lacks is not really a hero, and the ask for $250 billion is quite ridiculous.
But I don’t think it’s weird to suggest that people should ideally have a property right in their own bodily material and some compensation was probably due her. I can’t see any special reason to deny that.
That argument that it’s pure chance she had those cells doesn’t hold water with me. So what? It’s pure chance that many people are smarter than you—does that mean they don’t deserve to accrue special benefit from the merits of their genetic gifts?
"many people have fewer legs than me" does not mean "they should be poorer" thus some kind of aid should be given to them, ideally from the people with the optimal leg number. "Some people have stronger legs that allow them to do fantastic feats and earn money" is also true, and I think that their benefits should (in part) be distributed. Likewise with intelligence, sure those people can keep the merits of their genetic gifts - in part - while another part should go to those who got bad luck of the genetic/any other draw and are thus unfortunate.
I think this Marxian argument may go too far in that it infers that I, who need a liver and/or kidney donation, should have the right to take a chunk of your liver and your spare kidney whether you consent or not, and whether your quality of life suffers or not, so long as it doesn’t make you worse off than I will be after the donation.
"Distribute the benefits of having strong legs" is different from "give a part of the leg". While I do consent to moderate socialistic redistribution of wealth, ideally through land taxes (what bigger advantage than being born a rich landowner? :D ) I do not think that people's bodily autonomy is exactly the same thing as their possessions. I am above-average in money-earning traits, and thus can earn more, and part of that earning is distributed to the less fortunate - something I would probably prefer had roles be reversed. I am above-average in number of kidneys, statistically speaking, but procedure of removing a kidney, life without a kidney and such are all significant harms to a life, in a way that a 10% tax on the wealthy is not. I hope I make the distinction in my thoughts clearer.
I mean I think a society like that might be considerably better for large numbers of individuals -- at least if the burden of having the organs taken is distributed in a way that feels fair and reasonable within the society (rather than an additional terrifying medical risk to add to how everyone already might get cancer).
I wonder if the objectionableness is the fear of being subjected to a major surgery of that sort, and thus imagining a society where everyone is subject to that fear being bad?
I mean, no, because I have no actual fear of it—it's a ridiculous notion.
No, it's morally objectionable because it violates sovereignty of the person. I should think that part of the argument is fairly clear from my emphasis on consent.
I think it would be considerably worse for most people and I don't think you can confiscate organs in any way that an ethically sound person would consider 'fair and reasonable.'
And personally, if I needed a stolen organ in order to live, I'd rather die, even if that organ would be stolen anyway and given to somebody else. The system itself would be wrong and my participation would condemn me.
I'm torn on this. Right now we ban people from selling their blood or organs (even though you're allowed to give them away for free). I think we should probably legalize selling organ donations. I'm less sure about legalizing selling specimens, because there's no incentive for people to not let scientists use specimens (they've already been taken) and this just seems like rent-seeking against scientists.
I would examine it from a rights-first direction. In order to access a site I inevitably provide it some of my personal identity data. Is it right that the company can turn around and profit off of that data and sell it or transfer it to third parties without my consent? Is it rent-seeking if I say no? I think the analogy with bodily material is fairly plain.
Now, it’s quite true that under our current regime, in most places, that it’s legally defensible to make it a condition of use of a particular site that the site can acquire, use, and profit off of your data. But there’s been a significant resistance to this and many have decided it’s quite unethical to condition services on breach of privacy.
As meritorious or altruistic as some uses of bodily material might be, I don’t think that can or should abridge the self-evident right to have some say in what is done. I am mixed in my feelings on this—I think it’s probably indefensible to profit or use it without consent beforehand, but there may be some defense in saying that they condition your getting tests on your giving up rights and ownership to the bodily material.
That does sound a shade ugly, though: “unless you give up your rights to your bodily material, we won’t test (and therefore cannot treat your cancer). Your cells or your life!”
I think this probably bears a lot of careful thought.
I agree that everyone should be able to give or refuse consent. I think the remaining question is whether this should work like organ donation (where you can either do it for free, or not do it) or like selling lemonade (where you can do it for free, do it for money, or not do it). I don't see big advantages for allowing payment, although I can see an argument either way.
I think this is actually a problem with a really simple solution, and also a really simple explanation why we don't follow that solution.
The simple solution is the amortize the value of "samples" across all samples given to eliminate the luck element. So no Lacks isn't owed $250 billion, but people receiving medical treatment collectively are owed some hundreds of billions for their samples. Except it is billions of of people giving trillions of samples.
So rather than give everyone a $0.25 rebate on their medical sample, we just round off that value and live with the $0.25 taking that happens when you give a sample.
It is not a big deal in the vast majority of contexts.
What we’re asking for in cell compensation is a lottery ticket. But the problem with lotteries is that one person wins big solely because other people lose a little.
Well, the question doesn’t seem to be “should there be profit.” Most people would not be using this bodily material if there was no way to profit from it and if you extended this prohibition to everyone involved in the use of these cells, you’d nuke medical R&D (“Yes, Pfizer, you can use HeLa, but you have to give away any products made using HeLa”?).
The question is does the person who gave the cells be able to get some, or does the scientist and his employer and the pharmaceutical industry etc. all get to bathe in a pool of gold coins and shut the donor out without so much as a thank you card.
And I’m not too clear on this, but it looks like the issue of whether medical treatment can be conditioned on ‘donating’ your bodily material is not settled. Do you not see some reason for concern there or am I misunderstanding your comment about consent as to agree that if payment is not agreed then specimens should be destroyed without testing?
Sure people get paid for selling their blood -- in gift cards, or Red Cross branded shirts (mostly long-sleeve, you know, the kinds you can't donate blood in because the sleeves are too tight), or blankets or bags. "Pay" doesn't have to be in cash.
I just go there for the cookies which my T2D doesn't ordinarily let me eat.
I haven't looked closely at the issue, but would generally prefer a regime where people had a property right in their own bodies and could sell kidneys, posthumous organ donations, etc. (I'm not *sure* I'm right because I am no expert, Chesterton's gate, etc.)
That said, I don't see any basis for a special rule that grants this one person special property rights.
>She just, through no effort of her own, happened to get a weird cancer.
Well, she did have sex. Which gave her HPV, which gave her cervical cancer.
And HeLa cells are a bad model for studying anything except cervical cancer, because they're full of HPV DNA and have lots of other abnormalities. Yes, they're easy to grow, but that's basically their only advantage. I think modern biological research would be better off not using HeLa cells at all.
This is a surprising take to me. I thought they were super valuable, Jonas Salk polio vaccine etc. Can you explain in more detail. Like, what cells would be better to use?
They are extremely hardy and don't really need special growth factors to survive, so for a long time they and a few similarly messed up cells were the only things people could grow. But now we've gotten much better at growing specialized cells types. For example, if you want to study a gene involved in neural development, you would grow and differentiate neural stem cells rather than try to study that gene in HeLas.
I feel like Metacelsus is being a little harsh though. Some biological processes work virtually the same in all cell types, and if you're studying those then HeLas are nice because you can grown huge amounts of them cheaply. I once grew 10 litres of HeLa-suspension cells in my Ph.D. to identify proteins that interact with another protein.
In other words, more mutated/messed up cells are easier to grow, usually that's not worth it but sometimes it still is. Maybe Metacelsus is right that there is some alternative I should have used that didn't have HPV DNA, which is an interesting point.
You can do STR testing on any cell line you work with for like $25 and have it compared to the ATCC reference. Same technique they use to identify criminals. When we get a vial of Whatever-cells from some guy's freezer, we make sure to do this.
Kids, do this, and also test for mycoplasma.
The problem of HeLas taking over other cultures has become less dramatic. Modern tissue culture hoods are better at preventing cross-contamination. Also people use to be much worse at culturing non-messed-up cells, so a disproportionate share of new derivations were actually HeLas.
Ha! I never heard of this one. Some people wear long sleeve lab coats, but even the guys who don't seem not to have this problem. I suspect the guys in her lab just had sloppy technique.
Still common practice in labs I've worked in to recommend that anyone who needs to use a biosafety hood to begin regularly moisturising their forearms to prevent skin flakes dropping into your work and causing issue. Regardless, once you grok asceptic technique and provided you're using a modern biosafety cabinet, you've got to really screw up to get contaminations.
This reminds me of a story my mother tells about touring the Tillamook cheese factory in Oregon back in the 40's. There were these huge vats of cheese and all these burly hairy men up to their elbows stirring it.
Later on in the 2000's, they ran a series of billboards saying, "Tillamook, we make cheese the way we always have except now we wear gloves."
So, I’m of two minds about this. As an individual human looking at one other individual human, yeah she didn’t do anything on purpose. Usually you have to do stuff on purpose to be a hero. I know there’s probably some stuff here about Free Will but I believe in compatibilism so I’m going to just step around it.
As a member of a society where I understand that ideas and principles degrade the further they go out on the social graph from people who are thinking about them all the time, or even instantiated them, I really want to reinforce the idea that humanity is sacred and make sure that it is imbedded in the social sphere as really super important. So important that even if someone just takes your cells and then there’s a big cellular mass out there that’s a thousand times bigger than the now dead person that it is a BIG deal and we should all think about it a lot. Just to continually wear the groove into our collective mind that tampering with humanity is a BIG deal.
That said, I do hate when people don’t hear about other more deliberately heroic people. Almost no one has ever heard of Seretse Khama, for instance.
EDIT: The $250 billion is kinda dumb but the family should get something from whoever is making money selling these cells or moving them around or whatever. Plus maybe damages from whatever the institution is that took the original sample without request. I don’t think they’re totally free, right? I would definitely feel weird if there were bits of my mother in Petri dishes all over the world.
The guy who derived them got no profit and a non-profit called the ATCC distributes them to scientists. People have gotten rich doing experiments that used HeLas to study stuff, but that's a tenuous connection to the original extraction of cells.
Yeah, if there’s a non-profit maybe some marginal flow of money. Enough to just say the contribution is recognized. The end consumers to my mind would not bear any financial responsibility.
> That said, I do hate when people don’t hear about other more deliberately heroic people. Almost no one has ever heard of Seretse Khama, for instance.
When Genghis Khan conquered China his plan for it was to exterminate the Chinese, get rid of the rice farms, and set up nice grassy pastures where Mongols could prosper while practicing the traditional lifestyle of raising sheep and horses.
He was persuaded not to do this by Yelü Chucai, who made the argument that taxing the Chinese instead of wiping them out would be good for Genghis Khan's personal lifestyle.
Thanks for that insight. It certainly takes guts to publish such a post which goes against widespread sentiment. Your reasoning is very solid and I fully agree that we should (teach kids to) honor heroes who made active, hard-earned and creative contributions to science and other fields.
If have often thought while reading your posts that it takes courage to just plainly state rational thought, not all of which is considered a popular opinion, knowing some parts will be quoted out of context.
Given the likely growth of genetic engineering and bioengineering in the next few years, establishing property norms around individual cells and genetics seems like an obviously good idea. Not that I think we'll land on an optimal system, but *a* system is likely better than none.
It is odd that Lacks is made out to be some kind of hero. (And who is the person who discovered that her cells might have some important use? Do we even know their name?)
More cynically, I think that this is one more good reason why it's important for tissue samples to remain anonymous.
The cultural lionization you're describing strikes me (white male, which obviously impacts my perspective here) as wanting to focus on the least-uncomfortable case of a terrible history. There's a fairly deep well of (well deserved) guilt around medical abuse of minorities (e.g. Tuskegee) for research purposes. Lacks' is a case where A) the unethical behavior was minor relative to other historical cases and B) the positive benefits of the research are broad and easy to point to. So by focusing culturally on this episode, it's easy to communicate "we were bad but we've gotten so much better and anyway look at how much good came of this modest bad choice" instead of focusing on "we were appallingly, inconceivably inhumane". It's trying to look serious about historical injustice while also looking good.
That said, I have no idea how Lacks is viewed by the Black community; I could be entirely off-base.
Edited: first draft made it sound like I was describing this post, rather than the phenomenon the post was about.
Given that many people are hero-izing Lacks, and in this post I am arguing that hero-izing Lacks is inappropriate, I'm not sure how it's relevant that Tuskegee was very bad.
If I were writing a completely different post saying that consent doesn't matter in scientific experiments, which I'm not because I don't believe that, then Tuskegee would be relevant.
Ah! Sorry, poor communication on my part. I was not trying to say *what you wrote* was this, I was saying the phenomenon you were writing *about* was this. Will edit.
That is: I was offering an explanation for why there is so much cultural focus on Lacks, relative to what she herself actually did, not criticizing your post questioning the merit of that focus.
Sorry then, misunderstood. I'm still not sure what I'm misunderstanding though. If Lacks was a minor issue and Tuskegee was a major issue, shouldn't people be talking about Tuskegee more and Lacks less?
Yes, I read that as Joel's point, and also that the cultural focus and performance drama around a less uncomfortable case maybe gets used to publicly expiate sins in the whole domain where much worse things were done.
Can you clarify? Is it that at the time the sample was taken without her consent that everyone else's samples were also taken without their consent, so nothing unusual happened here?
You said no unethical behavior occurred. I asked you to clarify why that was.
I don't know what the ethical standard was at the time of her biopsy with respect to use of medical waste/samples, so my intention was to ask if your reasoning was because you knew that the use of her sample without her consent was standard of care at that time. I myself don't know.
> You said no unethical behavior occurred. I asked you to clarify why that was.
This is not a question that makes sense. No unethical behavior occurred. No unethical behavior occurred because, out of all the things that did occur, none of them were unethical.
What more could there possibly be to say?
Suppose I tell you that, when I prepared my dinner last Sunday, no unethical behavior occurred. You come back with "I can't believe that unless you specify why it is that no unethical behavior occurred". What sort of reaction would you expect? That's just nonsense. If you have a theory of unethical behavior occurring, you need to make some sort of case for it.
(a) Was it generally accepted in the 1950s that if a patient had a biopsy taken for purposes of medical treatment, that tissue could be used for unrelated scientific research without the patient's consent?
(b) Is that generally accepted today?
(c) Should it be generally accepted today?
I am not familiar with the field, so I have no idea on any of the three questions, but that's how I interpret the debate.
Oh are you saying that the standard at the time made it so that it would have been extremely unusual for her tissue sample to not have been used? I don't know what "it" refers to in "if it hadn't happened."
1) HeLa is an invasive *beast* of a cell line and metastases in everything. It ruined multiple other potential cell lines that were cross contaminated in labs that used HeLa around other lines. HeLa is v cool, but not without downsides.
2) No one would care about Ms Lacks if she wasn't Black, and her relatives- who apparently honestly thought that the labs had actual pieces of body like an arm or a leg floating in a jar - would have their fairly ridiculous danegeld demand rejected out of hand if they weren't Black.
It's a shame that this mom and wife died so young, it's great that we got some medical use from the std that killed her, but the part that made the std into something useful was done by a whole bunch of lab workers whose names are entirely forgotten, and not by Ms Lacks.
Put up another dozen monuments to George Washington Carver, and it won't even come close to matching the honor due that scientist.
As I recall, the book that started it all, The Immortal Life of Henrietta Lacks, would have been in line with everything that Scott says here. It's been awhile (I used this book in a research writing course when it came out in 2010 or maybe 2011), but I recall Rebecca Skloot examining whether the family should be entitled to any money and concluding, "well, no. Not in the real world, maybe in some fantasy land where medicine and research are practiced completely differently."
The emphasis on that book is that her poor black family had no notion that her cells had been harvested at all, let alone that they'd become so important, and that that was kind of sad, especially as her own family was unable to get decent healthcare. It examined the systematic racism in the medical system that has made many Black people fearful of even seeking medical help let alone participating in studies that might, at least in theory, lead to improved healthcare for other Black people.
In other words, the discussion started in a reasonable place, with a well-researched book by someone who was careful not to get overwrought about the implications, but now I see that Oprah's company partnered with HBO to make a movie based on the book and starring Oprah, so rational thinking out the window. I think I see why we have statutes now.
I listened to this book a couple of years ago. I was very impressed. The book has a moving portrayal of Henrietta. It does a good job of conveying the human elements of the story, the science, the ethical and legal questions.
Agree with almost everything you said: I don't remember if she definitively concluded "no" to the money. I think she says "can't" due to all the questions it raises and precedents it sets, but also that the Lacks family deserves more support. She founded the Henrietta Lacks Foundation for that reason.
For anyone looking for ideas, I think it would make for an interesting book review.
ELIA5: there's a 250B$ claim for a biopsy that did not prearrange the legal paperwork, in a period when legal paperwork related to biopsy procedures had been virtually inexistent?
J.K. Rowling is a billionaire because and only because she was able to secure and enforce the IP rights on Potter. That is fine; Rowling authored that thing. Regardless of how much of it may have been a hodge-podge of previous existing works, the alterations were Rowling's, and these alterations were key to the viral success of the thing.
So Rowling enforcing the IP rights is fine.
HeLa cells are likewise based on the hodge-podge of previous existing works known as the human genome. The alterations which have made HeLa cells such a viral success, were however NOT authored by Ms. Lacks. They were authored by the human papilloma virus. Her healthy original cells are otherwise not of any more interest to science, I believe, than the cells of billions of other people.
There are no conceivable grounds on which IP rights to HeLa cells could be ascribed to Ms. Lacks or her inheritors. Those IP rights could at best be ascribed to HPV, and we might even build a statue to HPV in US and another in the UK, but there's no bank account to which to make transfers to otherwise.
Completely agree, I've felt the same way ever since the hype around the release of The Immortal Life of Henrietta Lacks, when I was in high school. It is really sad and upsetting that her descendants have struggled a lot! But how is it not equally sad and upsetting that other disadvantaged people, who don't happen to have an ancestor whose cultivated cells had some useful property, have struggled a lot too? The view that she and her family were wronged makes no intuitive sense to me. As you say, there may be some argument from consistency or rule of law for compensating them, but it's not at all a central example of "justice"
There's a book about this kind of issue by James Boyle called *Shamans, Software, and Spleens* from back in 1997. In the book, Boyle talks about whether or not one can identify a "heroic" or "romantic" figure in different scenarios who is then thought to deserve a reward for creativity.
Since it's 1997, there's much less in the way of racial politics there, but still an interesting lens for looking at theories of desert. I think Boyle then goes on to say that different people will be incentivized to try to make their creative and intellectual labors slot into the heroic mold somehow in the hope that they will be awarded IP rights.
"Anybody who agrees to let a third-year medical student practice digital rectal examination on them has suffered more for science than she did."
I was sledding down a hill on one of those "flying saucer" sleds (no padding whatsoever), went over a bump, and got a serious pain in the ass. Had trouble sitting, so I went to the doctor. He did a digital rectal examination and told me that I had broken my tailbone and could he bring his intern in to see what a broken tailbone feels like? Sigh. I guess I suffered twice more for science than HeLa did.
"Henrietta Lacks - who was not, technically, in medicine."
In fact, medicine was in her.
By the way, how special was her cancer, really? I get the sense that this is exaggerated to aid the narrative, and that it was more a matter of technology maturing than of her being the Chosen One.
That is, what percentage of cancers have the properties that made hers useful for research? 70%? 10%? 1%? Less?
We proclaim people "heroes", and shower them with windfalls monetary and otherwise, because we want other people to emulate their behavior. So, apparently, some of us want lots of people to go out and get cancer, For Science!?
I am actually staggered that there is a statue to H.L. To be honest, it reminds me of that statue the Soviets put up to all the lab mice who died "in service to science". Same kind of contribution.
As an aside, I think the mouse monument is very cute, although I'm a bit dubious about "knitting" DNA. Alas, I grew up in Leningrad / St. Petersburg, where the best we had (as far as I know) was https://en.wikipedia.org/wiki/Chizhik-Pyzhik.
> This is also how I feel about that one woman who donated her hair and it got used to make World War II instruments. It’s a cute story, but before you talk about how underrecognized and underappreciated she is and how this is an affront to all women everywhere, do remember that World War II was also the time where millions of people volunteered to go to horrible foreign countries where they would probably get killed. I think medicine is like this too.
This reminds me of Hillary Clinton's semi-infamous remark that war hits women harder than men because they lose their fathers, husbands, and brothers.
This is the sort of thing I would expect to happen because of a particularly diligent and PR savvy advocate. I tried to look it up and it seems like it might have to do with a doctor, Roland Patillo, that worked on Lacks as a student and in the 90s, started putting on conferences for Lacks and lobbying the Atlanta government for recognition. It seems Lacks' biography describes him as the only African American student but the guy looks very white and there's nothing about having African American heritage on his Wikipedia page. I don't know what it is but something weird is going on here.
When I search on a longer time frame, (google trends) Henrietta Lacks looks to turn on in ~2009, Jonas Salk looks fairly constant over that time frame. (furthest back I could go was 2005, 2004.)
I think a good contrasting point for Lacks is James Harrison ( https://en.wikipedia.org/wiki/James_Harrison_(blood_donor) ). Like Lacks, he has a mutation that makes his organic specimens beneficial for medicine. Unlike Lacks, we has gone through substantial effort in sacrifice to make it so, completing over 1000 blood donations. From Wikipedia: "His donations were estimated to have helped save over 2.4 million babies, with pregnant women, including his own daughter Tracey, being treated with his antibodies." He is fully deserving of any praise we can heap on him.
I had no idea this person ever existed until last year. I was looped in as a big data consultant producing some kind of drug effectiveness report for a biotech client and my partner, who works in medicine, saw a column on my screen that said HeLa and she asked me if I knew what that was. I didn't, and she explained, and I looked it up a bit.
I was left with the sense that some kind of sacrilege had happened because I had been handling *this person's data* the entire time without the proper reverence.
>"Giving her a Congressional Gold Medal for services to science would be like giving a lottery winner a Congressional Gold Medal for services to the economy."
Tbf Alexander Fleming got a Nobel for letting his Petri dishes get moldy
Lots of people had noticed before that mold on petri dishes would kill bacteria. Fleming was the first to realise that this was actually interesting and not just inconvenient.
Late to the party, but it's worth noting here that Henrietta Lacks was, in a way, paid quite well for the use of her medical waste: She got the cancer treatment for free because she was treated on a charity basis. I don't think it's plausible to say that if this trade of a bit of her medical waste for free cancer treatment had been made explicit she would have rejected it.
Yes, a posteriori her medical waste (combined with a tremendous investment of labor and capital from others) turned out to be pretty useful, but a priori this was a really good deal for her.
Now that this post is unlocked, it reminds me of how the recent film "Joy" sets out to correct the record (which had actually been corrected a little before the film was written) about Jean Purdy's contributions to IVF. Only the screenwriters never bothered to contact the last surviving member of that team and fictionalized Purdy in ways the real woman presumably wouldn't appreciate. https://slate.com/culture/2024/11/joy-birth-of-ivf-jean-purdy-movie-netflix.html
I think there's a plausible case that people don't have a property interest in their cells, but consent should be required for cells to be given over and if consent is not obtained, monetary compensation is required.
Some people who oppose sex work feel this way about sex for example. They feel:
1. Sex shouldn't be sold
2. Sex requires consent (obviously) and where consent is given, no monetary compensation is appropriate.
3. If sex is taken without consent, the victim is entitled to monetary compensation.
Nor would it be good practice the withhold compensation just because the victim is dead- that creates all sorts of perverse incentives. Thus compensation seems at least somewhat reasonable, although the principles on which the level of that compensation should be set are opaque to me. Possible considerations:
1. The amount necessary to deter similar behavior. (But the harvesting of the cells happened in a very different environment - treating it as if it had just happened and setting the amount accordingly to deter similar behavior in the future make little conceptual sense.)
2. An amount proportional to harms. (But how to measure such a thing)
Yes, that seems 100% correct but I'd go further and suggest that it's fucked up and kinda selfish to suggest people should have a property interest in the cells their body produces. I'm in favor of changing the default on organ donation to yes and I don't see any reason the same considerations don't apply more strongly to cell lines. The only reasonable claim of harm one could make about this would be the identification of the cells as belonging to this specific individual -- which in this case seems to be the opposite of what people are concerned about.
Wait, if you don't own your own cells, is it just a free-for-all on your organs every time you wind up in the hospital? Anybody who can hold you down long enough can swab your cheek for a DNA test? Not sure I like the implications of that line of thinking.
What implications are those (assuming the holding you down thing was hyperbole, if your alive you still need to give consent to take the sample just don't own it afterwards)? It's generally a free for all on your image in the us for anyone with a camera (there are some rights of publicity).
I think what you describe are how things worked during Lacks' era. I think now the rule is that you have to sign a consent form for a doctor to take a sample of your cells, and depending on what studies are going on in the hospital, the form will say either "this is being done for your medical treatment only" or "this is being done for medical treatment, but might also be used in a study of such-and-such, and might also be more generically added to future studies under XYZ circumstances".
That begs the question of in what sense did Lacks experience more harm than anyone else whose cells were taken, and maybe looked at, but nothing was done with them. Why would Lacks deserve more recognition than them?
And I think this is a damning indictment of the field of bioethics. Regardless of what view you take about the ethics of harvesting the cells there are a bunch of holes in the theory about the need to deify her and they aren't saying anything about it.
I've more than once /begged/ a surgeon to take a sample of my cartilage during surgery, to test it for Borrelia, which can live inside cells in cartilage, heart, and brain, and thus be undetectable without a cell sample. They always refused, claiming that "rules" forbade them from releasing any human cells which hadn't first been thoroughly killed by something like formaldehyde. Nor would they give cell samples to a lab on another doctor's orders.
My most-charitable theory is that the regulations are so complex that no one dares to do anything unusual. My next most-charitable guess is that they're afraid they won't get paid because they don't know how to coordinate with another doctor working on another medical issue in a way that the insurance will allow. I don't know how medical research can be done under these circumstances, unless medical research is kept strictly segregated from medical care.
I'm not sure about the organ donation issue, but I'd agree that to a first approximation medical waste should be usable for science without many limits, and that the person they come from shouldn't have any special rights in them.
I'm sure there's a parade of horribles that could come out of that (e.g., producing offspring or full clones), which is why I wrote "many" and not "any". But I'm not sure that can't be handled at a different level and case by case, (e.g., no one can make a clone of you without your consent, whatever the source of the DNA) rather than specifically limiting the use of the material generally.
Typos:
"(potential counterargument" => "(Potential counterargument"
"nobody think people" => "nobody thinks people"
I think the Google Trends comparison is a bit silly. I learned about Jonas Salk from my high-school history textbook; I don't need to look up who he is, and I'm sure many others are in the same position. And he became incredibly famous and was awarded the Congressional Gold Medal and the Presidential Medal of Freedom, so it's not like he's somehow underappreciated in comparison to Lacks.
When did you go to high-school?
About ten years ago.
Now we just need a database of textbooks mentions by year....
Still, that's recent enough that I would have expected Lacks to have gotten a mention instead of Salk.
Anyone have a sample within the last 5 years? Or with access to a current highschooler?
Oh, sure, here you are: https://books.google.com/ngrams/graph?content=Jonas+Salk%2CHenrietta+Lacks&year_start=1920&year_end=2019&corpus=en-2019&smoothing=3
This would seem to imply that people commonly featured in high school textbooks and who everyone should know about, would have low Google Trends volume This isn't true. For example, George Washington gets about 15x higher search volume than Lacks and 60x higher than Salk. If you try other pairs of people, you'll find that the more famous one almost always has higher search volume, in proportion to their fame.
I definitely don't think people commonly featured in history textbooks will always have low Google Trends volume. I do think that Google Trends results are some linear combination of overall fame and "people hearing about the thing for the first time and needing to Google it", and that there are better ways of comparing whether two people are seen as heroes. To use your example, George Washington gets higher search volume than Lacks, but lower search volume than Kim Kardashian and TikTok, and he's spent the last couple of months getting solidly beat out by searches for George Santos.
So yes, Henrietta Lacks has been 'trendy' for the last decade or so, but I wouldn't take her Google Trends results to necessarily mean she's being elevated above Salk (who was a huge celebrity in his own time) in the long-term pantheon of scientific heroes, if that makes sense.
I agree there is some useful distinction between fame and some sort of historical dignity. Kim Kardashian is more famous than George Washington but has less historical dignity. Lacks is more famous than Salk and I'm not sure about historical dignity, probably lower but catching up.
Until this post was unlocked, I had never heard of Lacks. I think Katie M is correct that Google trends is showing that Lacks is Trendy but not commonly known.
Also search volume could be partly driven by people doing school projects on someone: they've heard of the person, but they need to research more details.
I'd actually bet more Americans know Henrietta Lacks than Jonas Salk (and more Americans know Katherine Johnson than Wernher von Braun)
Huh! I would have guessed definitely not on Johnson (I didn't exactly know who she was, although I remember reading an article about something something women in NASA and assumed she was that). But Google Trends agrees. I wonder if there are other Katherine Johnsons who it's incorrectly picking up (I used its suggested "Katherine Johnson, American mathematician", but maybe it's not good at separating these things out)
I can't quite tell if you figured it out after Googling, but Katherine Johnson was one of the people depicted in the popular movie Hidden Figures. And Google is definitely not picking up other Katherine Johnson's -- the historical trend spikes suddenly right when the movie is released.
The irony of all this is that Salk was viewed by other scientists as something of a showboater and many felt that more credit for the vaccine should have gone to John Franklin Enders, the first to culture polio in vitro.
I remember we learned about Lacks in school, and I was always very confused about why the teacher and the book we used seemed to care so much. To me, in retrospect, there would have been a significant probability that if Salk had asked Lacks first for her cell-line, she would have refused out of distrust of the medical establishment, and the polio vaccine would never have been produced. People should be allowed to refuse the use of their property to others, but if you think that stealing bread when hungry is acceptable, then stealing Lacks’s cells anyway seems commendable.
This argument may not go through for a variety of reasons (like maybe some logical decision theory stuff, though I’m uncertain what the conclusion of that reasoning would lead to), but it just always annoyed me that nobody but me ever seemed to think of it, even those who I knew would find the argument convincing in other contexts or if it came from their own mind.
I think the issue with the stealing bread analogy is that Lacks' descendants want cash, more than what they've already gotten. And the cell line is in widespread use.
Lacks must have given consent for the sample to be taken. Was it still her property at that point? Is there any reason to believe that a person who donates blood to a lab retains control over it? Items in the garbage are generally ruled to be public property, and her tissue could easily have been put in the garbage after it was tested.
In a very cynical sense I think it would have behooved the various researchers to 'protect Lacks's anonymity" which is a very common medical standard.
Of course, I'm getting a bit afield from whether or not Lacks should be revered as a human being. In that sense, she seems very much like a bystander rather than someone whose behavior is worthy of emulation, as Scott discussed.
Eh, you’re right that Lacks is not really a hero, and the ask for $250 billion is quite ridiculous.
But I don’t think it’s weird to suggest that people should ideally have a property right in their own bodily material and some compensation was probably due her. I can’t see any special reason to deny that.
That argument that it’s pure chance she had those cells doesn’t hold water with me. So what? It’s pure chance that many people are smarter than you—does that mean they don’t deserve to accrue special benefit from the merits of their genetic gifts?
I suppose the following:
"many people have fewer legs than me" does not mean "they should be poorer" thus some kind of aid should be given to them, ideally from the people with the optimal leg number. "Some people have stronger legs that allow them to do fantastic feats and earn money" is also true, and I think that their benefits should (in part) be distributed. Likewise with intelligence, sure those people can keep the merits of their genetic gifts - in part - while another part should go to those who got bad luck of the genetic/any other draw and are thus unfortunate.
I think this Marxian argument may go too far in that it infers that I, who need a liver and/or kidney donation, should have the right to take a chunk of your liver and your spare kidney whether you consent or not, and whether your quality of life suffers or not, so long as it doesn’t make you worse off than I will be after the donation.
I find it pretty objectionable.
"Distribute the benefits of having strong legs" is different from "give a part of the leg". While I do consent to moderate socialistic redistribution of wealth, ideally through land taxes (what bigger advantage than being born a rich landowner? :D ) I do not think that people's bodily autonomy is exactly the same thing as their possessions. I am above-average in money-earning traits, and thus can earn more, and part of that earning is distributed to the less fortunate - something I would probably prefer had roles be reversed. I am above-average in number of kidneys, statistically speaking, but procedure of removing a kidney, life without a kidney and such are all significant harms to a life, in a way that a 10% tax on the wealthy is not. I hope I make the distinction in my thoughts clearer.
Sure, but if that’s the case, then it suggests that Lacks-like people should be retaining 90% of the benefit of their luck.
I mean I think a society like that might be considerably better for large numbers of individuals -- at least if the burden of having the organs taken is distributed in a way that feels fair and reasonable within the society (rather than an additional terrifying medical risk to add to how everyone already might get cancer).
I wonder if the objectionableness is the fear of being subjected to a major surgery of that sort, and thus imagining a society where everyone is subject to that fear being bad?
I mean, no, because I have no actual fear of it—it's a ridiculous notion.
No, it's morally objectionable because it violates sovereignty of the person. I should think that part of the argument is fairly clear from my emphasis on consent.
I think it would be considerably worse for most people and I don't think you can confiscate organs in any way that an ethically sound person would consider 'fair and reasonable.'
And personally, if I needed a stolen organ in order to live, I'd rather die, even if that organ would be stolen anyway and given to somebody else. The system itself would be wrong and my participation would condemn me.
I'm torn on this. Right now we ban people from selling their blood or organs (even though you're allowed to give them away for free). I think we should probably legalize selling organ donations. I'm less sure about legalizing selling specimens, because there's no incentive for people to not let scientists use specimens (they've already been taken) and this just seems like rent-seeking against scientists.
I would examine it from a rights-first direction. In order to access a site I inevitably provide it some of my personal identity data. Is it right that the company can turn around and profit off of that data and sell it or transfer it to third parties without my consent? Is it rent-seeking if I say no? I think the analogy with bodily material is fairly plain.
Now, it’s quite true that under our current regime, in most places, that it’s legally defensible to make it a condition of use of a particular site that the site can acquire, use, and profit off of your data. But there’s been a significant resistance to this and many have decided it’s quite unethical to condition services on breach of privacy.
As meritorious or altruistic as some uses of bodily material might be, I don’t think that can or should abridge the self-evident right to have some say in what is done. I am mixed in my feelings on this—I think it’s probably indefensible to profit or use it without consent beforehand, but there may be some defense in saying that they condition your getting tests on your giving up rights and ownership to the bodily material.
That does sound a shade ugly, though: “unless you give up your rights to your bodily material, we won’t test (and therefore cannot treat your cancer). Your cells or your life!”
I think this probably bears a lot of careful thought.
I agree that everyone should be able to give or refuse consent. I think the remaining question is whether this should work like organ donation (where you can either do it for free, or not do it) or like selling lemonade (where you can do it for free, do it for money, or not do it). I don't see big advantages for allowing payment, although I can see an argument either way.
To be clear, plasma sales are still legal in the USA.
I think this is actually a problem with a really simple solution, and also a really simple explanation why we don't follow that solution.
The simple solution is the amortize the value of "samples" across all samples given to eliminate the luck element. So no Lacks isn't owed $250 billion, but people receiving medical treatment collectively are owed some hundreds of billions for their samples. Except it is billions of of people giving trillions of samples.
So rather than give everyone a $0.25 rebate on their medical sample, we just round off that value and live with the $0.25 taking that happens when you give a sample.
It is not a big deal in the vast majority of contexts.
I think this is right.
What we’re asking for in cell compensation is a lottery ticket. But the problem with lotteries is that one person wins big solely because other people lose a little.
Except in this case we are distributing the winnings from a positive sum game, not redistributing within a negative sum game.
Well, the question doesn’t seem to be “should there be profit.” Most people would not be using this bodily material if there was no way to profit from it and if you extended this prohibition to everyone involved in the use of these cells, you’d nuke medical R&D (“Yes, Pfizer, you can use HeLa, but you have to give away any products made using HeLa”?).
The question is does the person who gave the cells be able to get some, or does the scientist and his employer and the pharmaceutical industry etc. all get to bathe in a pool of gold coins and shut the donor out without so much as a thank you card.
And I’m not too clear on this, but it looks like the issue of whether medical treatment can be conditioned on ‘donating’ your bodily material is not settled. Do you not see some reason for concern there or am I misunderstanding your comment about consent as to agree that if payment is not agreed then specimens should be destroyed without testing?
Sure people get paid for selling their blood -- in gift cards, or Red Cross branded shirts (mostly long-sleeve, you know, the kinds you can't donate blood in because the sleeves are too tight), or blankets or bags. "Pay" doesn't have to be in cash.
I just go there for the cookies which my T2D doesn't ordinarily let me eat.
I haven't looked closely at the issue, but would generally prefer a regime where people had a property right in their own bodies and could sell kidneys, posthumous organ donations, etc. (I'm not *sure* I'm right because I am no expert, Chesterton's gate, etc.)
That said, I don't see any basis for a special rule that grants this one person special property rights.
>She just, through no effort of her own, happened to get a weird cancer.
Well, she did have sex. Which gave her HPV, which gave her cervical cancer.
And HeLa cells are a bad model for studying anything except cervical cancer, because they're full of HPV DNA and have lots of other abnormalities. Yes, they're easy to grow, but that's basically their only advantage. I think modern biological research would be better off not using HeLa cells at all.
This is a surprising take to me. I thought they were super valuable, Jonas Salk polio vaccine etc. Can you explain in more detail. Like, what cells would be better to use?
They are extremely hardy and don't really need special growth factors to survive, so for a long time they and a few similarly messed up cells were the only things people could grow. But now we've gotten much better at growing specialized cells types. For example, if you want to study a gene involved in neural development, you would grow and differentiate neural stem cells rather than try to study that gene in HeLas.
I feel like Metacelsus is being a little harsh though. Some biological processes work virtually the same in all cell types, and if you're studying those then HeLas are nice because you can grown huge amounts of them cheaply. I once grew 10 litres of HeLa-suspension cells in my Ph.D. to identify proteins that interact with another protein.
In other words, more mutated/messed up cells are easier to grow, usually that's not worth it but sometimes it still is. Maybe Metacelsus is right that there is some alternative I should have used that didn't have HPV DNA, which is an interesting point.
Have they solved the contamination problem? The last I heard, there were a *lot* of cell lines that were actually HeLa.
That was some years ago, and one would have hoped that this was no longer a problem, but, well, the replication crisis is still a thing....
You can do STR testing on any cell line you work with for like $25 and have it compared to the ATCC reference. Same technique they use to identify criminals. When we get a vial of Whatever-cells from some guy's freezer, we make sure to do this.
Kids, do this, and also test for mycoplasma.
The problem of HeLas taking over other cultures has become less dramatic. Modern tissue culture hoods are better at preventing cross-contamination. Also people use to be much worse at culturing non-messed-up cells, so a disproportionate share of new derivations were actually HeLas.
Have they also solved the problem of men not being able to effectively culture cells?
My wife tells the story that the men in her lab could never get a proper cell culture done because their hairy arms would contaminate the culture.
Again, quite long ago, and one would hope for progress....
Ha! I never heard of this one. Some people wear long sleeve lab coats, but even the guys who don't seem not to have this problem. I suspect the guys in her lab just had sloppy technique.
Still common practice in labs I've worked in to recommend that anyone who needs to use a biosafety hood to begin regularly moisturising their forearms to prevent skin flakes dropping into your work and causing issue. Regardless, once you grok asceptic technique and provided you're using a modern biosafety cabinet, you've got to really screw up to get contaminations.
I'm a man and do tons of cell culture. But everyone in our lab (men and women) wears a lab coat.
This reminds me of a story my mother tells about touring the Tillamook cheese factory in Oregon back in the 40's. There were these huge vats of cheese and all these burly hairy men up to their elbows stirring it.
Later on in the 2000's, they ran a series of billboards saying, "Tillamook, we make cheese the way we always have except now we wear gloves."
So, I’m of two minds about this. As an individual human looking at one other individual human, yeah she didn’t do anything on purpose. Usually you have to do stuff on purpose to be a hero. I know there’s probably some stuff here about Free Will but I believe in compatibilism so I’m going to just step around it.
As a member of a society where I understand that ideas and principles degrade the further they go out on the social graph from people who are thinking about them all the time, or even instantiated them, I really want to reinforce the idea that humanity is sacred and make sure that it is imbedded in the social sphere as really super important. So important that even if someone just takes your cells and then there’s a big cellular mass out there that’s a thousand times bigger than the now dead person that it is a BIG deal and we should all think about it a lot. Just to continually wear the groove into our collective mind that tampering with humanity is a BIG deal.
That said, I do hate when people don’t hear about other more deliberately heroic people. Almost no one has ever heard of Seretse Khama, for instance.
EDIT: The $250 billion is kinda dumb but the family should get something from whoever is making money selling these cells or moving them around or whatever. Plus maybe damages from whatever the institution is that took the original sample without request. I don’t think they’re totally free, right? I would definitely feel weird if there were bits of my mother in Petri dishes all over the world.
The guy who derived them got no profit and a non-profit called the ATCC distributes them to scientists. People have gotten rich doing experiments that used HeLas to study stuff, but that's a tenuous connection to the original extraction of cells.
Yeah, if there’s a non-profit maybe some marginal flow of money. Enough to just say the contribution is recognized. The end consumers to my mind would not bear any financial responsibility.
> That said, I do hate when people don’t hear about other more deliberately heroic people. Almost no one has ever heard of Seretse Khama, for instance.
When Genghis Khan conquered China his plan for it was to exterminate the Chinese, get rid of the rice farms, and set up nice grassy pastures where Mongols could prosper while practicing the traditional lifestyle of raising sheep and horses.
He was persuaded not to do this by Yelü Chucai, who made the argument that taxing the Chinese instead of wiping them out would be good for Genghis Khan's personal lifestyle.
https://en.wikipedia.org/wiki/Yel%C3%BC_Chucai
There are a handful of statues to him around China, but clearly nothing like what he deserves. Not much name recognition.
Damn, I think I need to make a list of these guys/gals.
It’s a much more heroic world than we think it is.
Thanks for that insight. It certainly takes guts to publish such a post which goes against widespread sentiment. Your reasoning is very solid and I fully agree that we should (teach kids to) honor heroes who made active, hard-earned and creative contributions to science and other fields.
Not that much guts - I kept it subscriber only!
😅 Ok, but still…
If have often thought while reading your posts that it takes courage to just plainly state rational thought, not all of which is considered a popular opinion, knowing some parts will be quoted out of context.
You fool! You've unlocked the post! Now everyone will be able to see your solid reasoning!
Given the likely growth of genetic engineering and bioengineering in the next few years, establishing property norms around individual cells and genetics seems like an obviously good idea. Not that I think we'll land on an optimal system, but *a* system is likely better than none.
Lacks's family has now been financially compensated.
https://www.nature.com/articles/d41586-020-03042-5
It is odd that Lacks is made out to be some kind of hero. (And who is the person who discovered that her cells might have some important use? Do we even know their name?)
More cynically, I think that this is one more good reason why it's important for tissue samples to remain anonymous.
The cultural lionization you're describing strikes me (white male, which obviously impacts my perspective here) as wanting to focus on the least-uncomfortable case of a terrible history. There's a fairly deep well of (well deserved) guilt around medical abuse of minorities (e.g. Tuskegee) for research purposes. Lacks' is a case where A) the unethical behavior was minor relative to other historical cases and B) the positive benefits of the research are broad and easy to point to. So by focusing culturally on this episode, it's easy to communicate "we were bad but we've gotten so much better and anyway look at how much good came of this modest bad choice" instead of focusing on "we were appallingly, inconceivably inhumane". It's trying to look serious about historical injustice while also looking good.
That said, I have no idea how Lacks is viewed by the Black community; I could be entirely off-base.
Edited: first draft made it sound like I was describing this post, rather than the phenomenon the post was about.
Given that many people are hero-izing Lacks, and in this post I am arguing that hero-izing Lacks is inappropriate, I'm not sure how it's relevant that Tuskegee was very bad.
If I were writing a completely different post saying that consent doesn't matter in scientific experiments, which I'm not because I don't believe that, then Tuskegee would be relevant.
Ah! Sorry, poor communication on my part. I was not trying to say *what you wrote* was this, I was saying the phenomenon you were writing *about* was this. Will edit.
That is: I was offering an explanation for why there is so much cultural focus on Lacks, relative to what she herself actually did, not criticizing your post questioning the merit of that focus.
Sorry then, misunderstood. I'm still not sure what I'm misunderstanding though. If Lacks was a minor issue and Tuskegee was a major issue, shouldn't people be talking about Tuskegee more and Lacks less?
I think that is his point, people are focusing not on the worst injustices, they are focusing on the least bad ones.
Yes, I read that as Joel's point, and also that the cultural focus and performance drama around a less uncomfortable case maybe gets used to publicly expiate sins in the whole domain where much worse things were done.
> Lacks' is a case where A) the unethical behavior was minor relative to other historical cases
No, Lacks' is a case where no unethical behavior occurred.
Can you clarify? Is it that at the time the sample was taken without her consent that everyone else's samples were also taken without their consent, so nothing unusual happened here?
She had a biopsy. That's not just "nothing unusual"; it would be extremely unusual if it hadn't happened.
I don't understand your reply?
You said no unethical behavior occurred. I asked you to clarify why that was.
I don't know what the ethical standard was at the time of her biopsy with respect to use of medical waste/samples, so my intention was to ask if your reasoning was because you knew that the use of her sample without her consent was standard of care at that time. I myself don't know.
> You said no unethical behavior occurred. I asked you to clarify why that was.
This is not a question that makes sense. No unethical behavior occurred. No unethical behavior occurred because, out of all the things that did occur, none of them were unethical.
What more could there possibly be to say?
Suppose I tell you that, when I prepared my dinner last Sunday, no unethical behavior occurred. You come back with "I can't believe that unless you specify why it is that no unethical behavior occurred". What sort of reaction would you expect? That's just nonsense. If you have a theory of unethical behavior occurring, you need to make some sort of case for it.
I guess the relevant ethical questions are:
(a) Was it generally accepted in the 1950s that if a patient had a biopsy taken for purposes of medical treatment, that tissue could be used for unrelated scientific research without the patient's consent?
(b) Is that generally accepted today?
(c) Should it be generally accepted today?
I am not familiar with the field, so I have no idea on any of the three questions, but that's how I interpret the debate.
Oh are you saying that the standard at the time made it so that it would have been extremely unusual for her tissue sample to not have been used? I don't know what "it" refers to in "if it hadn't happened."
1) HeLa is an invasive *beast* of a cell line and metastases in everything. It ruined multiple other potential cell lines that were cross contaminated in labs that used HeLa around other lines. HeLa is v cool, but not without downsides.
2) No one would care about Ms Lacks if she wasn't Black, and her relatives- who apparently honestly thought that the labs had actual pieces of body like an arm or a leg floating in a jar - would have their fairly ridiculous danegeld demand rejected out of hand if they weren't Black.
It's a shame that this mom and wife died so young, it's great that we got some medical use from the std that killed her, but the part that made the std into something useful was done by a whole bunch of lab workers whose names are entirely forgotten, and not by Ms Lacks.
Put up another dozen monuments to George Washington Carver, and it won't even come close to matching the honor due that scientist.
As I recall, the book that started it all, The Immortal Life of Henrietta Lacks, would have been in line with everything that Scott says here. It's been awhile (I used this book in a research writing course when it came out in 2010 or maybe 2011), but I recall Rebecca Skloot examining whether the family should be entitled to any money and concluding, "well, no. Not in the real world, maybe in some fantasy land where medicine and research are practiced completely differently."
The emphasis on that book is that her poor black family had no notion that her cells had been harvested at all, let alone that they'd become so important, and that that was kind of sad, especially as her own family was unable to get decent healthcare. It examined the systematic racism in the medical system that has made many Black people fearful of even seeking medical help let alone participating in studies that might, at least in theory, lead to improved healthcare for other Black people.
In other words, the discussion started in a reasonable place, with a well-researched book by someone who was careful not to get overwrought about the implications, but now I see that Oprah's company partnered with HBO to make a movie based on the book and starring Oprah, so rational thinking out the window. I think I see why we have statutes now.
I listened to this book a couple of years ago. I was very impressed. The book has a moving portrayal of Henrietta. It does a good job of conveying the human elements of the story, the science, the ethical and legal questions.
Agree with almost everything you said: I don't remember if she definitively concluded "no" to the money. I think she says "can't" due to all the questions it raises and precedents it sets, but also that the Lacks family deserves more support. She founded the Henrietta Lacks Foundation for that reason.
For anyone looking for ideas, I think it would make for an interesting book review.
ELIA5: there's a 250B$ claim for a biopsy that did not prearrange the legal paperwork, in a period when legal paperwork related to biopsy procedures had been virtually inexistent?
J.K. Rowling is a billionaire because and only because she was able to secure and enforce the IP rights on Potter. That is fine; Rowling authored that thing. Regardless of how much of it may have been a hodge-podge of previous existing works, the alterations were Rowling's, and these alterations were key to the viral success of the thing.
So Rowling enforcing the IP rights is fine.
HeLa cells are likewise based on the hodge-podge of previous existing works known as the human genome. The alterations which have made HeLa cells such a viral success, were however NOT authored by Ms. Lacks. They were authored by the human papilloma virus. Her healthy original cells are otherwise not of any more interest to science, I believe, than the cells of billions of other people.
There are no conceivable grounds on which IP rights to HeLa cells could be ascribed to Ms. Lacks or her inheritors. Those IP rights could at best be ascribed to HPV, and we might even build a statue to HPV in US and another in the UK, but there's no bank account to which to make transfers to otherwise.
Completely agree, I've felt the same way ever since the hype around the release of The Immortal Life of Henrietta Lacks, when I was in high school. It is really sad and upsetting that her descendants have struggled a lot! But how is it not equally sad and upsetting that other disadvantaged people, who don't happen to have an ancestor whose cultivated cells had some useful property, have struggled a lot too? The view that she and her family were wronged makes no intuitive sense to me. As you say, there may be some argument from consistency or rule of law for compensating them, but it's not at all a central example of "justice"
Oh hey, it's a 2014-style SSC post. :o
There's a book about this kind of issue by James Boyle called *Shamans, Software, and Spleens* from back in 1997. In the book, Boyle talks about whether or not one can identify a "heroic" or "romantic" figure in different scenarios who is then thought to deserve a reward for creativity.
Since it's 1997, there's much less in the way of racial politics there, but still an interesting lens for looking at theories of desert. I think Boyle then goes on to say that different people will be incentivized to try to make their creative and intellectual labors slot into the heroic mold somehow in the hope that they will be awarded IP rights.
Perhaps "saint" rather than "hero"?
"Anybody who agrees to let a third-year medical student practice digital rectal examination on them has suffered more for science than she did."
I was sledding down a hill on one of those "flying saucer" sleds (no padding whatsoever), went over a bump, and got a serious pain in the ass. Had trouble sitting, so I went to the doctor. He did a digital rectal examination and told me that I had broken my tailbone and could he bring his intern in to see what a broken tailbone feels like? Sigh. I guess I suffered twice more for science than HeLa did.
I'll get started on the statue. Perhaps the fifth most populous city in Montana will be amenable to situating it there.
Is that a Butte joke?
:)
"Henrietta Lacks - who was not, technically, in medicine."
In fact, medicine was in her.
By the way, how special was her cancer, really? I get the sense that this is exaggerated to aid the narrative, and that it was more a matter of technology maturing than of her being the Chosen One.
That is, what percentage of cancers have the properties that made hers useful for research? 70%? 10%? 1%? Less?
We proclaim people "heroes", and shower them with windfalls monetary and otherwise, because we want other people to emulate their behavior. So, apparently, some of us want lots of people to go out and get cancer, For Science!?
I'll find my heroes elsewhere, thanks.
I am actually staggered that there is a statue to H.L. To be honest, it reminds me of that statue the Soviets put up to all the lab mice who died "in service to science". Same kind of contribution.
Confused: Wikipedia says the Monument to the laboratory mouse went up in 2013, was there another earlier one? https://en.wikipedia.org/wiki/Monument_to_the_laboratory_mouse
As an aside, I think the mouse monument is very cute, although I'm a bit dubious about "knitting" DNA. Alas, I grew up in Leningrad / St. Petersburg, where the best we had (as far as I know) was https://en.wikipedia.org/wiki/Chizhik-Pyzhik.
Thanks for the correction! A valuable demonstration of how tricky memory can be :)
> This is also how I feel about that one woman who donated her hair and it got used to make World War II instruments. It’s a cute story, but before you talk about how underrecognized and underappreciated she is and how this is an affront to all women everywhere, do remember that World War II was also the time where millions of people volunteered to go to horrible foreign countries where they would probably get killed. I think medicine is like this too.
This reminds me of Hillary Clinton's semi-infamous remark that war hits women harder than men because they lose their fathers, husbands, and brothers.
This is the sort of thing I would expect to happen because of a particularly diligent and PR savvy advocate. I tried to look it up and it seems like it might have to do with a doctor, Roland Patillo, that worked on Lacks as a student and in the 90s, started putting on conferences for Lacks and lobbying the Atlanta government for recognition. It seems Lacks' biography describes him as the only African American student but the guy looks very white and there's nothing about having African American heritage on his Wikipedia page. I don't know what it is but something weird is going on here.
Maybe the guy has north or south african ancestry (wikipedia says he grew up in Louisiana, so not directly from Africa himself).
When I search on a longer time frame, (google trends) Henrietta Lacks looks to turn on in ~2009, Jonas Salk looks fairly constant over that time frame. (furthest back I could go was 2005, 2004.)
Makes sense. "The Immortal Life of Henrietta Lacks" was published in February 2010.
I think a good contrasting point for Lacks is James Harrison ( https://en.wikipedia.org/wiki/James_Harrison_(blood_donor) ). Like Lacks, he has a mutation that makes his organic specimens beneficial for medicine. Unlike Lacks, we has gone through substantial effort in sacrifice to make it so, completing over 1000 blood donations. From Wikipedia: "His donations were estimated to have helped save over 2.4 million babies, with pregnant women, including his own daughter Tracey, being treated with his antibodies." He is fully deserving of any praise we can heap on him.
I had no idea this person ever existed until last year. I was looped in as a big data consultant producing some kind of drug effectiveness report for a biotech client and my partner, who works in medicine, saw a column on my screen that said HeLa and she asked me if I knew what that was. I didn't, and she explained, and I looked it up a bit.
I was left with the sense that some kind of sacrilege had happened because I had been handling *this person's data* the entire time without the proper reverence.
If you would like to see some more ranting about low expectations for black people, see Loury, McWhorter, and Hughes. (Black academics.)
>"Giving her a Congressional Gold Medal for services to science would be like giving a lottery winner a Congressional Gold Medal for services to the economy."
Tbf Alexander Fleming got a Nobel for letting his Petri dishes get moldy
Lots of people had noticed before that mold on petri dishes would kill bacteria. Fleming was the first to realise that this was actually interesting and not just inconvenient.
Jane Wright would be good to signal boost:
https://en.wikipedia.org/wiki/Jane_C._Wright
Late to the party, but it's worth noting here that Henrietta Lacks was, in a way, paid quite well for the use of her medical waste: She got the cancer treatment for free because she was treated on a charity basis. I don't think it's plausible to say that if this trade of a bit of her medical waste for free cancer treatment had been made explicit she would have rejected it.
Yes, a posteriori her medical waste (combined with a tremendous investment of labor and capital from others) turned out to be pretty useful, but a priori this was a really good deal for her.
Now that this post is unlocked, it reminds me of how the recent film "Joy" sets out to correct the record (which had actually been corrected a little before the film was written) about Jean Purdy's contributions to IVF. Only the screenwriters never bothered to contact the last surviving member of that team and fictionalized Purdy in ways the real woman presumably wouldn't appreciate. https://slate.com/culture/2024/11/joy-birth-of-ivf-jean-purdy-movie-netflix.html
I think there's a plausible case that people don't have a property interest in their cells, but consent should be required for cells to be given over and if consent is not obtained, monetary compensation is required.
Some people who oppose sex work feel this way about sex for example. They feel:
1. Sex shouldn't be sold
2. Sex requires consent (obviously) and where consent is given, no monetary compensation is appropriate.
3. If sex is taken without consent, the victim is entitled to monetary compensation.
Nor would it be good practice the withhold compensation just because the victim is dead- that creates all sorts of perverse incentives. Thus compensation seems at least somewhat reasonable, although the principles on which the level of that compensation should be set are opaque to me. Possible considerations:
1. The amount necessary to deter similar behavior. (But the harvesting of the cells happened in a very different environment - treating it as if it had just happened and setting the amount accordingly to deter similar behavior in the future make little conceptual sense.)
2. An amount proportional to harms. (But how to measure such a thing)
> [Salk] refused to patent it (despite potential value of $7 billion)
According to this LA Times article, it's been documented that the University of Pittsburgh looked into patenting the vaccine and that they told Salk the vaccine was likely unpatentable. Still, he's not known to have *tried* to patent it, to his credit. https://web.archive.org/web/20141028182230/http://www.latimes.com/business/hiltzik/la-fi-mh-polio-vaccine-20141028-column.html