I’d love to know if other women have considered this and have better info on the risk of being one kidney’d for future pregnancies. I know pregnancy taxes your kidneys more than ordinary life, and since I have a history of miscarriage I’ve been reluctant to add any new risks.
(I’m also curious if having one kidney means being risked out by eg a birthing center or a midwifery practice).
I believe that bodily integrity has a value in and of itself, independent of any utilitarian calculation around whether you will need a particular organ. (I don't mean "integrity" in some metaphorical sense. I mean it in the literal sense of keeping the physical phenotype in accord with its basic genotypic design.) Obviously, there will be a thousand and one exceptions in practice. (Fair warning: if you respond by giving me examples of such exceptions, I will be extremely unimpressed.) Every time one gives oneself a paper cut, one is violating bodily integrity in some small way. Of course. But I try not to do that on purpose, except perhaps to treat some greater medical ailment.
If you insist on utilitarianism, I suppose you could justify my position with some kind of rule-utilitarianism as opposed to act-utilitarianism. But I'm not a utilitarian at all.
I'm kinda surprised they prescribed Tylenol instead of Ibuprofen honestly. Anybody know why they did? I had anaesthesia for a cortisone shot to help with postpartum osteitis pubis, so no painkillers really needed, but I can't remember the last time a doctor prescribed me Tylenol when I wasn't pregnant.
Reading about all these studies reminds me of this classic SSC post https://slatestarcodex.com/2017/08/29/my-irb-nightmare/ and the thought I had while reading it - why aren't there places that make medical research more frictionless in order to benefit (somehow) from everyone being incentivized to do their research there? You know, like the Delaware or Switzerland of medical research? Could some similar kind of clustering benefit organ donation as well as the attendant research? I'm sure there's a reason why this doesn't happen, but what is it?
Even if one thought UCSF's screening criteria were reasonable, they sound badly out of order. If a history of childhood mental illness is potentially disqualifying in their eyes, they need to ask about that history very early in the process and not proceed with CT scans (for most), nuclear kidney scans, or even time-consuming and expensive investigations until they decide if that history is a dealbreaker for them. Asking a candidate donor to incur risk, meaningful expense, and/or serious inconvenience before addressing disqualifiers like this just isn't respectful.
I'm very happy for you, and completely unable to evaluate this rationally because a friend of mine died donating her kidney to her dying husband.
If you asked her in the afterlife, she'd probably be OK with the choice, but the incredible guilt that her husband felt afterwards is almost unimaginable.
Once again, I am being irrational and this should not dissuade anyone else; I merely was triggered to share my story.
Congratulations Scott! I became a non-directed donor 14 years ago. I was inspired by a New Yorker article by Larissa MacFarquhar, you may decide whether that's better or worse than Vox.
In addition to the very obvious benefits to the recipient, who is still doing well, I think donating helped me solidify my adult identity. Not in any public way, no one in my current city of residence even knows except my wife and whoever has read my medical file. My experience is that much as the rite of circumcision is meant to bind us Talmud-readers to God, kidney donation binds one to principles of altruism in a way no amount of donated money ever will. Even as I've gotten older and less idealistic, I remind myself that I am a man who once donated a kidney, that I should never let my character stray too far from that of the younger man who was capable of such things. No regrets.
>a ritual called “therapy” could absolve one of this impurity
When I read this section, I had the following thoughts in rapid succession:
- As a psychiatrist yourself, you are qualified to perform therapy. And you do mention that OCD is one of the conditions you treat in your patients.
- So could you do therapy on yourself? It would certainly be simpler and more convenient than going to a non-self therapist. Probably not as effective if you actually had an active problem you needed help with, but it seems more than adequate for an exercise in warding off evil spirits.
- Autotherapy could defensibly be described as "talking to yourself", which put that way is usually considered a sign of not being sane.
- So for mental health professionals who are qualified to perform therapy, does talking to yourself make you more sane, less sane, or have no net effect?
The radiation cancer risk argument is just wrong. This is from modelling studies not from prospective or retrospective studies. After 127 years of X-ray use there is not one study in adults that has shown increased risk. The low no-threshold LNT theory makes no sense and even if it were true it should be proven in a longitudinal studies.
Radiologists and others who work with radiation despite protection would have increased risk of cancer because there is always some radiation absorbed. There has been no extra risk reported except in the early days when they did not understand risk of high doses.
I've wished I could do this for years, but thanks to a life-saving, kidney-wrecking medication I'll be on in perpetuity both of my kidneys will be needed by me. I saw the headline "my left kidney," correctly guessed the topic, and immediately started sputtering about my own bad luck. Congratulations Scott, I am happy for you, your donor, and to see this issue publicized in a forum where I'm sure it'll get traction. Happy, and a little jealous.
Of course now I'm sitting here stewing on whether I'm a really a 200-in-a-few-hundred-millioner who would really go through with it or just a 25%-er with a fond intent and a pat excuse. It does feel like the easy, obviously correct choice--a life you can save that will be practically right in front of you--but now I'm very suspicious of this little fantasy and the role it plays in my psyche, with no skin (er, organ) in the game...
(If anyone else is worried they just have a hero complex and their heart isn't entirely in the right place, don't let that deter you from putting your kidney in another one. We all appraise ourselves in creative ways.)
My immediate reaction to the apparent mystery of : "25-50% of Americans say they *would* donate a kidney to somebody in need..."
I think those 25-50% are thinking of a scenario somewhere in between
-rushing to pull people out of a sudden immediate fiery car crash right in front of them
- donating or volunteering in a natural disaster
- John Cleese showing up at their door asking, "Could we have your kidney, then? Won't be much trouble for you."
When the choice or opportunity is suddenly presented, and following through is relatively simple, logistically, people and Americans in particular have almost no limits or thought of risk/cost. In the scenario of a crash/wreck I am sure 95% of people would risk their life for a total stranger without a moment's thought.
The barrier to high leverage humanitarian intervention is not courage or selfishness but attention span. Even you, a person who thinks and cares about doing good, who inspires others to likewise try to improve the world, and an MD with major cheat codes for Health Care and Medical melee combat, you were discouraged and almost gave up. Until a Mysterious Mentor suggested a Surprise Approach, One Weird Trick of trying another donation pathway, tvtropes etc.
Leaders can be described as getting people to do good stuff they should do anyway. Personally, I always tell people that when thry ask somebody for a favor, make it *AS EASY AS POSSIBLE* for that person to help you. The path to better more effective Altruism, and government as well, should keep those things in mind.
And sadists! Suffering is a sign of virtue, so therefore by making people suffer one can increase the amount of virtue in the world. Just look at all those stories of people who went through adversity and came out better. Who wouldn't want to have moral justification? Any reluctance on their part is simply akrasia. (Or at least, that's what my PTSD says.)
> Would, if what?
Quite possibly, if my life were more together. But thanks for writing all this.
I've been torn about the prospect of donating a kidney for over fifteen years. On the one hand, I see it as a really worthy form of altruism, and I recognize that in absolute terms the risks are quite small. On the other hand, I'm quite vulnerable to anxious intrusive thoughts, and the anxiety of having only one kidney, when evolution saw fit to equip me with a spare, feels like the sort of thing which would genuinely weigh on my sense of well-being for the rest of my life.
Do you think you might be open to a literature dive on the pros and cons of donating regenerable organs and tissues, like liver or bone marrow?
I did some sort of thing where I gave my dna via cotton swab to some charity and said email or call me if anyone needs something I’ve got. It seemed legit, but no one has ever contacted me. And I assume my superior Slavic-Irish-Norwegian ancestry would greatly enhance a normal mortal life.
Asking because I suppose this group would know: Is that in fact a real thing? Or did I give my DNA to skynet? I swear I got it from a flier at a hospital.
Scott, have you thought about meeting the person who got your kidney? Of course it might be awkward, meeting a stranger whose life you saved, and you two may be so different that you're each incapable of comprehending the other's take on life. And yet you had a meeting of the minds and kidneys when it comes to saving the person's life. I'd want to shake their hand or hug them and say, "I hope that kidney makes possible all kinds of wonderful things in your life" -- or something like that. Maybe just "enjoy the hell out of that kidney."
There's something about direct giving to strangers that feels utterly different from EA. It's profoundly satisfying, and makes you want to give *more.*. Maybe the way to think of it is as a spiritual practice, one that people practicing EA need to do to stay in touch with the point of helping others?
Anyhow, bless you, Scott. And if it would make you feel any better about the Uber incident, I'd be willing to piss myself in an Uber for you.
So there's a 1 in 10,000 chance of dying during the actual surgery, but there's a 1-2% chance that you'll develop kidney disease later on in your remaining kidney and think "boy, I sure wish I still had that extra kidney right now". BUT, you'll be put at the top of the list for the next kidney. BUT, kidney recipients typically only live an extra 5-7 years anyway. BUT, under these kidney disease circumstances you might not have been okay with a second kidney anyway. Nonetheless, your chances of dying due to kidney donation seem to be higher than 1/10,000 due to the whole lack of redundancy thing, probably very much greater than the 1/660 risk you were concerned about.
The bit about how you can get five other people get bumped to the top of the list if they ever need it is a REALLY convincing point. I didn't know that: I heard about how you personally get bumped up the list, but that's the bare minimum, not a good deal.
Re the people who say they would donate a kidney to help a stranger:
I think most people answering the survey question are imagining a case where they're uniquely morally responsible for it in some way, in which case they'd do it.
Going by your numbers, the actual number of undirected kidney donations required to plug the gap is about 0.01% of people per year. So IRL people are probably morally responsible for about 0.01% of a kidney donation per year (probably more in practice because some people can't or wouldn't donate, let's say 0.04% for safety), and going beyond that is superegatory.
I'm on the list of people who'd answer "no" on the kidney donation question (I do feel bad about it). But I would sign up for the service that picks 0.04% of people who sign up at random each year to donate, if it solved the kidney shortage. I wonder how universal this is.
(This does raise the question of why I don't just make my own service by throwing a random number generator from 1 to 10,000 and donating if I get under 4. I did do this before posting and got 5,143, so that's my new excuse for not donating. But I don't know if j would have gone through with it if I actually had gotten a number under 4, so I don't feel great about it).
Was there really a need to tell the whole world about the good deed you have done? Performing good deeds for social affirmation is generally considered to detract from the goodness of the deeds. Yes, I do understand that your intent is to encourage more performance of such deeds. But conventionally, performing good deeds for external rewards like social approval or money is considered suspicious, for some poor reasons (like the masochism you mention) but also the tendency toward self-deception and institutional corruption by those rewards.
This directly ties into the castle thing. Perhaps it's true that the castle actually would encourage more good deeds be done. However, it's also true that if you start talking yourself into buying comfy castles that actually do good, it becomes easier to talk or trick yourself into comfy things that don't do good, and you start to attract people into your organisation who will talk you into buying comfy things because they are solely into comfy and not good deeds at all. We can try to be less wrong here, but can we be sufficiently less wrong that this risk is worth running?
My wife is in kidney failure and is on dialysis. We have the same blood type, and when she becomes eligible for a transplant (she currently has other conditions that make her ineligible in the United States), I intend to offer one of mine, assuming I'm qualified to donate.
I'm happy for you! My apologies for complaining about the lack of posts just yesterday.
As a PhD student, I used to grow kidney organoids - small clumps of kidney tissue derived from embryonic kidney progenitor cells (or Yamanaka-factors induced stem cells). They were amorphous in shape and couldn't grow past a very small size limit: there were no blood vessels inside, and the center of the organoid would begin to necrotize from lack of oxygen. Growing a full-sized kidney in a lab would require a much better understanding of vascularization during embryogenesis.
A cool workaround I once saw in a Finnish lab was to literally 3D-print a microchannel tree, and populate it with thousands of mini-organoids. I haven't been following the field since, so if anyone is aware how close we are to a 3D-printed kidney, let me know.
Also, whenever I told my casual dates what I'm working on, they used to ask "Are you going to steal my kidney?". I would have to explain that I'm literally the least likely person to steal kidneys, since I can just grow them in the lab.
My only connection to this issue is that I have a friend who attempted to donate a kidney to a stranger through UCSF, and I think ultimately also got rejected or else long-term deferred, for a reason that seemed to also be like "we reject everyone who has an issue that falls into this bucket" rather than "it's plausible that you would actually be endangered if you donated your kidney".
This makes me wonder if UCSF is like super-paranoid about approving kidney donors.
Another thing that could fall under point #7: I think the kidney donation charities or maybe insurance companies are also willing to pay some expenses of a friend or family member to support you in connection with the kidney donation. So you might be able to, for example, take a significant other with you at no charge to you, even if you had to travel for the surgery.
Ah, I see, this is a "trick desperate or low-intelligence people into serving the greater good" sort of deal. That's the only way to describe someone who would actually act upon a promise by the government not to screw them over using the tax code for the next 11 years.
We find it acceptable to financially compensate women for egg donation. Not sure why tax credits for kidney donation should be controversial. I believe Iran offers direct payments for kidney donation which carries a higher risk of undue inducement.
Have you found scientific studies which show that the phenomenon of being reduced to only one kidney continues 30+ years after donation?
FWIW the linear no-threshold model of cancer risk from radiation is strongly countered by parts of the world which have much higher background radiation, on the order of the 30 millisieverts you avoided but every single year, and they don't appear to have elevated cancer risk. Similar with airline pilots.
> In polls, 25 - 50% of Americans say they would donate a kidney to a stranger in need.
> This sentence fascinates me because of the hanging “would”. Would, if what?
The answer is a mix of "if they were introduced, perhaps in a superficial 21-minutes-plus-commercial-breaks documentary fashion, to a particular stranger, who was sympathetic and in need of a kidney" and "if it was 'call 1-800-KIDNEYS and book an appointment sometime in the next month, have the surgery and spend a day or two in the hospital recovering' instead of... well, the entire ordeal you describe, minus UCSF's psychiatric proclivities.
It's also a pretty upper-middle-class sort of thing to do, and I think a fair amount of the people answering "yeah, I'd donate a kidney" never have to really seriously consider the question, because if you're not in a position to take a bunch of time off work and life to go fuck around with hospitals and Zoom conferences and piss jugs and then, on top of all that time, take a solid uninterrupted block of time off work and life to go have the thing yanked out and recover then it's really not something you can ever seriously really consider. Not at all trying to sound "check ur privilege, white kidney-donating male" or scoldy. I just mean it in the sense that it's similarly easy for the fox to say he'd easily resist the temptation of the grapes even if they weren't hanging ten feet overhead.
I worry that the Coalition To Modify NOTA is composed to people who are too nice to think of this, so this suggestion might do good: include a provision that the tax credit will not be INCREASED for, say, twenty years. (I don't know if the government is capable of making such long-term commitments though.)
I was wondering if you've considered getting on the bone marrow donor registry, and if you could write about that at some point in the future? Two years ago at the age of 26 I was diagnosed with acute lymphoblastic leukemia. It's the most common childhood cancer, and one that is highly curable in children, but has a mortality rate that increases sharply with age - my prognosis at the outset was about a 60% chance of surviving five years.
For me, and people like me, our best chances at a cure depends on a bone marrow transplant. Leukemia is a cancer of the bone marrow, so the surest thing to do is use chemo and radiation to obliterate all of your bone marrow, and then replace it with a stranger's who doesn't have cancer. But since your bone marrow makes all of your blood, including your immune cells, putting any average Joe's marrow in there would just cause your new blood to viciously reject your entire body, basically. So a recipient and a donor have to be closely matched on a variety of different factors to reduce the chances of this happening. This makes getting as many people on the registry as possible extremely important, and this also means that when someone is contacted about being a donor, you are often the only donor available for the recipient.
Unfortunately, I did not have a match on the registry, so my treatment consisted of chemo only, without transplant. I am in remission but my chances of relapse are a coin toss. Relapsed leukemia is harder to treat, and it would increase my odds for survival if I had an eligible donor were I to have to return to treatment. It would mean a lot to me if you would consider signing up for the registry (it's pretty easy) and writing about the experience. Thank you!
Edit to add a couple of things after the fact: I'd also like to say that unlike many with organ transplants, bone marrow transplant recipients don't have an expected expiration date following transplant. As long as the transplant is successful, and the cancer doesn't come back despite it, a BMT recipient can expect to live for most of their natural lifespan they would have experienced if they hadn't developed cancer, minus the added risk of future cancers that come with the chemo and radiation necessary to prepare you for it.
And, lastly, most people on the registry won't ever be asked to be a donor, but if you are, being a donor doesn't come at much cost or risk: there are lots of screening tests to ensure compatibility (no CTs I think), but it's not as intensive as what you went through for kidney donation. The actual donation process beyond screening consists of the hospital just giving you some drugs that stimulate your body to make extra stem cells, which can make you feel gross for a few days, and then using a machine to run your blood through a filter that collects those stem cells before placing the rest of your blood back in your body. It takes a couple of hours and I've heard it's a pretty cool experience! Plus, if you and your recipient both consent, the registry will connect both of you two years on so that you can meet each other.
> It starts with wanting, just once, do a good thing that will make people like you more instead of less.
Then consider this my contribution to the world: I think this behavior is about as admirable as men castrating themselves for religious reasons, or Xhosa killing their cattle for religious reasons.
A cult that talks you into handing over your money is vilified; why is a cult that talks you into handing over irreplaceable pieces of yourself 𝘣𝘦𝘵𝘵𝘦𝘳 than that?
> I asked them if there was anything I could do. They said maybe I could go to therapy for six months, then apply again.
On the other hand, I find this to be even weirder than the post presents it as being. This remediation makes sense if the concern is that your OCD of 20 years ago might be prompting you to make an unsound decision to donate a kidney today. If the concern is that there's something wrong with your kidney, therapy is pretty well guaranteed not to address that.
1. How do you know it was zoom doing it? Maybe they were spontaneously donating body parts and replacing them with UCSF insignia.
2. The Pros and Cons chart is flawed. It weights each factor equally. I, for one, definitely value some more than others. Cornell may not be on top after all.
3. "previous living kidney donors" sounds more Halloweeny than was probably intended.
"I make fun of Vox journalists a lot, but I want to give them credit where credit is due: they contain valuable organs, which can be harvested and given to others."
"I practiced rehearsing the words “I have never donated to charity, and if I did, I certainly wouldn’t care whether it was effective or not”."
"When I woke up in the recovery room after surgery, I felt great. Amazing. Content, peaceful, proud of myself. Mostly this was because I was on enough opioids to supply a San Francisco homeless encampment for a month."
"I had an unusually hard time with the catheter - the nurse taking it out frowned and said the team that put it in had “gone too deep”, as if my urinary tract was the f@#king Mines of Moria"
I started typing a comment but I realized it would be so long I might as well work on a "Contra" style article for "Why you should not donate a kidney".
If you are a person that's seriously considering donating a kidney please consider contacting me at george @ cerebralab . com -- so that I may try to dissuade you.
I think this would help me write a better article by having a motivated adversary with skin in the game.
P.S. In case Scott is reading this I'm obviously *not* claiming that donating a kidney isn't an altruistic act. I think that you are a fantastic person as always for doing this, I am just against encouraging people to do it because the uncertainty around outcomes seems immense and potentially bleak. Which still means that on-average you saved QALYs and contributed to social cohesion making you an all-around good person for doing this.
P.P.S Hopefully no new rules around posting emails in comments, if one exists and I'm breaking it, I'm sorry
How transferable is the 'kidney credit'? My wife is at elevated risk of someday needing a kidney, so I always figured I should keep my spare in case she needs it. I would be very upset if I gave it to somebody else now, and then 20 years later found myself unable to leverage my past donation to bump her to the top of the current recipient list.
The only thing that bothers me about this is the opioids bit. When my father had issues with a kidney stone, they gave him morphine, and he was in utter amazement of how effective they were, and came out of the experience saying "I can understand how people get addicted to this stuff." I've heard about how people getting their start on opioids because they're prescribed them following surgery.
When I had a tooth extracted(which incidentally also included that kind of lying-in-chair->timeskip->staggering down sidewalk anesthesia experience), I specifically avoided taking the heavy duty pain killers they prescribed me because I didn't want to roll the dice on going down the path of drug dependency.
It's all well and good that it's a relatively safe surgery, but I'm wary of any unnecessary exposure to opioids and would need to know the risks there.
I don't think I would donate my own kidney, due to various emotional reasons none of which are all that thoroughly-considered... but I would gladly vote in favor of the tax credit. That seems like a rare free lunch in national economics. I hope it gets traction.
Speaking of traction, glad to hear you're on the mend, and great write-up.
Soo, do journalists finally get to claim that AE is a cult that steals people's organs?
ALT
Simpsons did it first (S10E8).
On a less facetious note, I find the data on the safety of kidney donation incredibly unconvincing. Vast majority of donors are elderly and have shared the lifestyle of the recipient for decades (stereotypical old couple situation), so tons of confounders and no good data for young people donating. To handwave a safety signal as genetic confounding is incredibly disingenuous when you have no good data to suggest this link, i.e. can't pinpoint the gene responsible.
In general, I find myself wishing sometimes transplant medicine would just, dunno, go away. The results I see in my daily practice are always crap (I am the person who gets to stare at the nice little pictures you had taken all day long). It's far from the miracle everybody thinks it to be, and certain subpopulations might actually be worse of getting an organ than without it. There are practically no randomised trials on transplantation, and the devil kidney in me tells me it's because transplant docs know well enough that it would fail when actually trialled in today's population.
The ethics is fraught with foregone conclusions and false causality (people don't die from a lack of donor organs - they die from their illnesses - yet this language is routinely used by patients and their families: I was recently told by an acquaintance her grandfather had "died because no organ was available" - no seriously eff this gramps died of his alcoholism and two packs a day you delusional excuse for a granddaughter - he was my neighbour). If we are to believe all democracy becomes gerontocracy in the end, I get the heebie-jeebies when thinking about what a government seriously committed to placating the elderly would mandate in that respect.
I hope for your sake this turns out fine, lotsa people with only a single kidney end up as old geezers, but I can't help to think the "advertise kidney donation like blood donation to everyone" moment is a greivous error in the long run and this will fall medicine on its feet colossaly in the years to come. In the short term, this article has demonstrated to me that this blog now espouses values so far from me and mine own that it's probably time to stop reading it.
I just wish to say that I am unironically very inspired by "Everything else I try to do, there’s a little voice inside of me which says “Maybe the haters are right, maybe you’re stupid, maybe you’re just doing the easy things. Maybe you’re no good after all, maybe you’ll never be able to figure any of this out. Maybe you should just give up.”"
If fucking *Scott Alexander*, possibly the smartest guy I know of, who is constantly genuinely trying to get to the truth and do the right thing, feels that way, well, fuck it. This is just dumb. I thought maybe I felt that way because…well, because they were right. But there's *no way* that *you* should feel that way all the time, so why should I? Fuck that.
Thank you, genuinely, for being you and allowing us to see who you are.
> This request didn’t get communicated to the surgeon and he told me anyway - but luckily everything did go well.
Perhaps the surgeon actually did receive the request, and violated it only because the recipient lived.
***
In countries where it is harder to sue hospitals than it is in the US, are decisions like UCSF's re: OCD less common?
***
Do any kidney-transplanting hospitals publish their full list of medical conditions which rule out a potential donor, either due to risk to the donor from the surgery, or risk to the recipient from a potentially subpar kidney? I would appreciate seeing one.
The Linear No-Threshold Hypothesis of radiation says that every milliSievert increases your cancer risk. It does not. Humans cope and even seem to thrive with a background level of radiation. Prof Richard A. Muller (the Physics for Future Presidents guy) has thoroughly debunked LNT. That the NIH supports it is further evidence that it is nonsense.
The probability calculation of 1/660 doesn't seem at all correct to me. Every Sievert, you say, raises your risk of dying of cancer by 5%. But that's raising it from *whatever the current rate is*, which is... okay, a quick google says that cancer mortality in men is something like 200/100,000. So 30 milliSieverts would raise your risk by a total of 200/100,000 * 1/660, which is more like 1/330,000. (Or, I guess, raises your cancer risk by 1/110,000).
> You don’t need to worry about not having a kidney when a friend or family member needs one. When you donate, you can give the organ bank the names of up to five friends or family members who you’re worried might end up in this situation. In exchange for your donation, they will make sure those people get to the top of the list if they ever need a transplant themselves.
This was certainly news to me, and makes me feel better about the whole thing, but doesn't the fact remain that your own kidney is much likelier to be a better match for a family member than some other kidney off the list?
I found this post somewhere in my newsletter, and i was surprised that anyone would give precious part of the body to a stranger.
I have kidney disease (they dont work anymore to be honest), located in Europe - and here i never heard about 'random' donors.
Moreover, i personally never asked (and probably will not ask in the future) my friends or family for organ donor. Im overwhelmed about idea asking anyone for something that big and important.
Congrats, you make 30+yrs old man to cry like a baby :)
I really wish you everything best and i admire what you did.
If this estimate of increased risk assumes the linear no-threshold theory (LNT) -- and a quick look at the cited paper suggests it does -- it's nonsense. Read Jack Devanney's substack on nuclear power, where you will find demolitions of the LNT theory.
My usual admiration for Scott. Even higher than usual if possible. Glad he is alive, was considering open a manifold market: Is Scott in hospital? - Had hoped for an even better reason to be there. And feared for worse - The beginning freaked me out: "As I left the Uber, I saw with horror ..." One of my few wishes left is: May I die before Scott does.
Cheers for NOTA! To keep up the pressure, I shall keep my organs for now. (From an MRI I assume the one kidney is not fine enough to donate, and the fine one I intend to keep.)
I wonder whether a policy to give a tax deduction rather than tax credits for kidney donation could receive less political opposition. Because it seems the main concern opponents of compensation for kidney donation have is that poor people will donate kidneys for financial reasons in a way that seems morally icky. Whereas with a deduction, due to the existence of the standard deduction, the financial incentives would become active at some level of income while not influencing the behavior of people poorer than that, right? Does anybody more familiar with US taxation and organ donation policy know if there's some number at which such a deduction could be set to alleviate the US kidney shortage while not influencing the behavior of the poorest, say, 1/3 of Americans toward kidney donation?
I happen to live very near the "castle" and aside from a one week event for college students when they first bought it, it seems like they haven't actually run any conferences there yet over the last two years, but have continued to rent other venues for retreats and so forth since.
Old buildings can be money holes. I suspect, though don't know, that there are either transportation issues (there's a year+ long road closure on one of the main routes there) or maintenance issues that have prevented it from being used for any conferences as of yet. It's kind of a red flag to me that Oxford University owned it but then sold it as they didn't think it was financially feasible to hold on to. Though to be honest I'm glad it's back in university-associated hands rather than as a private building, as the university owns the rest of the adjacent land. It's a lovely area.
Kudos to you. Though I am suspicious your evil voice will learn to adapt to the new circumstances, perhaps encroaching on your good voice's turf in the right kidney, or, if the "left" part is important, perhaps claim your left lung?
I looked pretty throughly into kidney donation and even signed up for the first level screening but I ended up chickening out. However, I heard at one point that a screening question that’s commonly asked during the kidney donation process is “do you donate blood?” and I realized it was silly that don’t, given that I was likely eligible and that it’s a much lower risk but also life saving intervention. So I started donating blood and I encourage anyone who’s not quite comfortable with donating a kidney to try donating blood or platelets! The FDA has recently changed screening guidelines so that some previously deferred groups in the US (including gay men who haven’t had a new partner recently and people who have lived in the UK) are now eligible to donate.
Small note: the article you cite from Tom Ash was actually written by Josh Morrison and Thomas Kelly, according to the preface of the post.
Thanks for writing this. I donated as well, and found the experience to be a weirdly effective self-signal. I try to do various altruistic things, from donating money to choosing high-impact jobs, but good signals are costly, and these just aren’t all that costly for me.
That’s probably a bit counter intuitive - what could be most costly than my literal time and resources? That’s all I have! Here’s my thinking: after donations, I still live a life of extreme wealth and comfort compared to the average human, so the opportunity costs of donation are kinda trivial (like, maybe if I didn’t donate, I would buy the new VR headset that just came out, but I don’t suffer greatly because I haven’t done so). As for my job choices, these have coincidentally (suspiciously I might add, in my moments of doubt) been things I find challenging and interesting and rewarding in and of themselves. On top of that, there’s the point you mention that lots of my preferred ways to do good aren’t actually seen as good at all by plenty of critics (and, like, many everyday people too). I’m somewhat prone to imposter syndrome, and it’s easy for me to doubt my own motivations and impact on the world.
Donating a kidney was not only a costly signal of my values (the right balance of costly - annoying but still worth doing), but it also carried a lot of metaphorical resonance for me, since I have a typical secular worldview in which I am nothing over and above my body. Now, when I look at my body in the mirror, I’ll always notice and be reminded that it has a couple faint scars from the time I literally changed it - changed myself - to try to help someone else in a small way. It serves as a reminder that I can do annoying things because I value them, and I can literally change who I am in the process.
This reinforces my identity as someone who wants to do good things for the world, and serves as a healthy reassurance when self-doubt creeps in. So, for strictly non-altruistic reasons related to my general self-image and the narratives I want to tell about my life, I rate kidney donation pretty highly. All the altruism stuff is a great bonus on top of that 😉
"Also from my spicy [version of the "Effective Altruism As A Tower Of Assumptions"] essay:
Q: All possible forms of assistance, financial and otherwise, just make recipients worse off, for extremely complicated reasons. There are literally no exceptions to this. I promise I’m not just looking for an excuse not to do charity, I would love to do charity, it’s just that literally every form of charity is counterproductive. Weird, isn’t it?
A: Even kidney donation?"
Now that's what I call putting your kidney where your mouth is! (don't eat your kidney)
Castles need TLC as well, such as repointing stonework as needed, and weeding small trees and other foliage growing near or on walls, or even retiling roofs assuming the place isn't a complete roofless wreck. So the group who bought the castle also deserve some credit for maintaining it, assuming they do so adequately, for the benefit of future generations.
> Self-modifying into a person who can act boldly without social permission is a more general solution and has many other advantages. But the long version involves living a full life of accumulating moral wisdom, and the short version starts with removing guardrails that are there for good reasons.
I was vaguely uncomfortable reading part IV - the one about the castles and the fuzzies and the utilons - and I guess this footnote made it clearer why.
Ten years ago, you wrote that "in all situations, the government of Raikoth will take the normatively correct action." In those ten years of life, having accumulated the moral wisdom that you did, would you say you've gotten closer to embodying these words - not in the sense of *knowing* the correct action, not even in the sense of *actually doing* it, but in the *knowing that you know* sense?
My impression is that 2023!Scott is, if anything, more reticent about this stuff than ever. This is a problem when Guardian opinion columnists are constantly whispering dread outside-view incantations in his ear, demanding that he give up his left kidney, and generally holding his sense of satisfaction hostage. That seems even worse than the state of nature, which is getting fuzzies from Meaningful Human Connections™. Those, at least, are fake in an obvious way.
(not that I'm saying it was wrong to donate the kidney; just that this post is pretty depressing, like watching someone fill out taxes, except it's not even a morality tax like the GWWC pledge, it's a tax on *having a morality*.)
Hi. CT scans have been around now since the 80s as well.
The whole brouhaha started with Brenner's paper in the AJR in 2001, which was modeled on radiation from Hiroshima and Nagasaki, which itself is not a fair modeling example, because the radiation profile is different and you can't just extapolate the risk from 1000mSv to 1 mSv (CT scan would be between 1-10 mSv). Until then, no one talked about diagnostic imaging and radiation risk.
So the burden of proof lies on those who say that radiation from diagnostic imaging (< 50mSv one time dose) increases risk of cancer, not the other way around. There is no data showing this in adults. Those who believe in the hypothesis have moved to children, where if at all (and no one has accounted for reverse causation), for every 10,000 CT scans of the brain, there is one increased brain cancer risk, that's it.
Modeling is just that, modeling. All of the references below say "There is no evidence that low-level radiation from medical imaging causes harm and below 50-100 mSv of exposure, the risks are too small to be observed or non-existent".
1. Amis Stephen. Radiology 2011: 261: 5
2. Position Statement of the Health Physics Society, Jan 2020
Unlike with so many other medical interventions, where our follow-up data is in the range of a few years (statins is now 35 years), with X-rays we have good solid long term data. Remember that from the 20s till almost the 90s, patients were also exposed to barium studies, IVU studies, where the radiation was in the same range sometimes as CT scans. Some observational study from the NHS or from the Scandinavian countries that track all their patients would have shown some causation. But there is nothing.
Casually bringing up your disdain for journalists in the absence of an occasion to criticize them creates more heat than light and annoys my NYT-reading fiancée
This still gets my hackles up. Let me fumblingly try to articulate and explore why I feel this way, in a way that hopefully sounds valid.
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Let's imagine for a second that this was written by someone other than Scott, someone who I haven't spent years reading, and whose thoughts I don't understand as well.
The text of this article is "I donated my kidney". The message, partly stated but mostly implied, is "You should do so too." (With caveats of "I'm not telling you to do this, just giving you social permission to do it if you were already inclined.")
Most people trying to get you to do something this drastic and unusual don't have your best interests at heart. They stand to benefit in some way or another. That in and of itself is a pretty big barrier to convincing people.
How can someone benefit from kidney donation to a random stranger? They don't have to benefit directly. If they have a value system that thinks your actions improve (their conception of) the world, they'll usually try to argue you into it anyway.
Does this actually improve the world? Probably, at least to some extent. Does that extent justify the health risks?
Scott's a doctor, I'm not. With my limited knowledge, my heuristics are, generally speaking, "Keep things related to body, health, and diet as close to natural as possible, doing medical interventions only when necessary, or where the problems are accumulating enough to justify it." I assume that the redundancy in my kidneys is there for a good reason and am inclined to keep it.
This has had some benefits to me: I have a friend who, during a rough time of his life, went deep down a psychiatry rabbit hole, culminating in a breakdown that left him dependent on benzos and unable to work. While we were talking about his issues, I told him my heuristic, and he admitted that it was probably a good one. That's not a knock on the people that need medications—some people really do need it—but the point is even for something like medication, I usually have to convince myself to use it, and err on the side of avoiding it.
So you say the risks are small. Given that I'm this risk-averse, is your definition of "small" the same as mine? Probably not. The weird testicle thing alone would probably be enough to put me off. I have no idea what could cause that, how hard it is to treat, or what kind of long-term damage it could do.
And that's even assuming you're telling the truth. Since you already have a motivation to argue the side that convinces me to do this—look how many QALYs you can bring to the world by convincing me!—you might have a motivation to lie. Or if not lie, then at least do the subtle not-lies that might convince me anyway, like tell a one-sided story; cherry-pick bad evidence; or ignore, neglect to mention, or handwave away some of the risks.
Then I start wondering: hang on, how far will this guy take this?
"You should do this" seems to imply a moral norm: you're a good person if you do this, you're a bad person if you're not. Is he on the onramp to a moral crusade? We've seen a lot of those in politics lately. He's got all those caveats to his message, but does he mean them? If he does mean them, then for how long? Will he still be as forgiving when kidney donation is commonplace or even expected among his friends or ingroup?
Is he trying to make him and his friends look good, to have him and his friends accepted as the morally virtuous subculture, at my expense?
With that gut reaction firmly in place, I start probing my moral philosophies, against both the weaker explicit message and the stronger potential one. I start thinking of bodily autonomy, and abortion: does this line of thinking imply that it's morally correct for women to bring their babies to term at the expense of their own (similarly likely minor-to-moderate) health risks? If good people are morally obligated to give their own kidney, how much else of their life and literal bodies are they morally obligated to give as well? How much marginal risk or pain is one person supposed to take for a marginal improvement of someone else's life?
And then I come into the comments and argue.
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Okay, taking a step back: this isn't quite how I reacted to this article.
The big reason for that is because, like I said in the beginning, I've been reading Scott for years. I know, to some degree, how he thinks about medicine. I've read some of his writing on moral obligations, which makes me think he's being honest about mostly just sharing his story and giving people who were already on the fence social permission to go ahead and do it.
Because of that, my actual reaction to this article is that it shifted my opinion very slightly, enough to maybe freak out a bit less in the unlikely case that a friend of mine decides to randomly donate a kidney.
I would probably still freak out a little bit, and this article is very far from enough to convince me to do it myself. My heuristics are too strong, and my self-awareness in my lack of knowledge too great. Figuring out whether I even want to do this is not a way I want to spend my time, energy, or health, so I default to "no".
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So why am I rambling about this here? Because I expect that this kind of thought process happens in a lot of people that have a negative gut reaction to EA. I expect it happens almost instantly, and likely subconsciously.
A lot of EA writing is a Rorschach Test.
The gut reaction you have to something like this depends a lot on your past experiences, how much you trust the author, your exposure to Effective Altruism, and how often you've had people try to pull one over on you at your expense. These all feed into your personality, heuristics, and priors. That's why you get reactions ranging from "Nope, you're a crazy liar" to "Interesting, tell me more".
IMO, the only way to reach the defensive ones is to advocate for more common-sense, lower-risk actions whose benefits are more easily explained and apply across different moral systems. I've written about this here:
Though I understand that's probably not who you wrote this article for.
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Anyway I'm glad it went well for you and I'm sure whoever got it from you was immensely grateful.
(And sorry for taking a soapbox to this personal story. It just got the gears turning.)
Despite my ramble above, I can't help but think of another blogger I loved to read, Shamus Young, who was diagnosed with end stage kidney failure in 2022 and died three months later. Actions like yours could have made a difference in his case.
Not sure which way the utilitarian calculation goes. The additional ACX time, either now or 25 hence, is probably still fairly valuable, e.g., David Friedman is still cranking out interesting stuff while old. But not sure how to quickly compare intellectual output to additional QALYs now.
Huh, and here I wasn't sure if I was just imagining "haven't seemed to get many SSC emails lately, what's up with that?" Worth the wait - always really enjoy posts about your own life. Skin in the game and all that, now you've Got The Receipts in a very concrete way. Someday if we get excellent generative AI for shows, it'd be cool to dramatize this essay as The Alexander Kidney. Or I'll try to recast you as the hero in Angel Beats!
...which segues into, I can't really imagine spontaneously donating a kidney to a __complete__ stranger? Maybe a family member, probably a friend, definitely a SO, some sort of handwavey Inner Ring calculus involved. Bad experiences with involuntary donations make me react really poorly to bodily-autonomy-integrity violations, no matter the utils involved. (And that was just for hair!) OTOH, being on the standard organ-donor registry that everyone signs up for with their driver's license - yes, of course, it's not like I'll be around to miss them at that point. I think I read somewhere on your old blog that such organ donations went down as cars got safer, actually, and It's A Problem...?
Description of the actual process and surgery...retroactively reassures me I made a correct decision to cancel [other elective surgery], even if in theory there's financial reimbursement available. I do think there's definitely some above-replacement Happy Price which would change my mind - $100k is several years of wages for me, that's Not Nothing, money is fungible - but other illegible costs like time and logistical hassle can't be "repaid". Wonder if there's any potential in streamlining the approval process - does it actually need to be several months? (I also don't understand why homeopathic levels of mental illness would be disqualifying, unless it was of a variety particularly prone to driving rash decisions?)
B: Thank you so much for writing this. This piece is going to reach a ton of people, make waves, cause a bunch of new donations, and probably save far more people's lives than your actual donation did.
I've chatted with Dylan Matthews about this, but there's an *extra* massive reason for public influencers to donate their kidneys. Dylan has probably, no joke, caused hundreds or thousands of extra donations via his articles and advocacy. The actual impact of his specific kidney is a rounding error to the attention he's drawn. I suspect that with your platform, the impact your donation will make is at least 100x the typical donation.
So thank you for donating, and thanks for being vocal about it. And thanks for supporting the Modify NOTA campaign!
First off: congratulations Scott! A tremendous thing to do, and I admire your speaking openly about it and encouraging others to do the same.
The CT scan/risk of cancer struck me as unbelievable! I do try to avoid CT scans on patients younger than 40, but I always put the risk as closer to 0.05% - 0.1% per scan rather than nearly 0.5% as your girlfriend calculated. I did a deep dive into this once for pregnant women and I remember the 5% per Sievert thing coming up there (risk to the fetus of childhood cancers, if Mum gets a CT.) Are we definitely sure this is for adults? I did a quick Google just now and clicked on the usual suspects - Scientific American says "a single CT scan increases the average patient's risk of developing a fatal tumor from 20 to 20.05 percent." WebMD: "the chance of getting a fatal cancer from any one CT scan is about 1 in 2,000." Memorial Sloan Kettering: "0.05 percent, or less than one in 2,000 — of possibly developing a future cancer."
Obviously I would love to see a deep dive into this topic!
1. Kudos on the Vox journalist line, made me genuinely giggle uncontrollably at work.
2. Kind of strange, I've been involved with EA for awhile, donated a lot of my (meager) income to charity, and, given the opportunity, would happily take some risks for altruistic purposes. But I still haven't got past kidney donation to a stranger sounding absolutely ridiculous. You can do something just bloody horrible, slightly dangerous (possibly including a bunch of risks you're not taking into account), not at all fun/ exciting, with lower altruistic cost-effectiveness than working and donating to an effective charity... If the effectiveness calculations looked incredible, I would be at least persuaded that it's a morally good idea, but as it is, it feels more like the kind of socially contagious masochism that EA should be trying to avoid.
3. When I was travelling in Northeast China near the Korea border, I spoke to a cleaner in a cheap hotel. He asked me: "Where are you from?" "The UK", "Ah, can you sell kidneys in the UK?", "No, there might be a black market, but it's illegal", "Ah". Then the conversation ended.
Well, first of all, congratulations! There's kidney disease in my family, and yes my cousin died several years down the line after a transplant, so it doesn't mean you can live your normal lifespan. But without it you'd probably be dead, so better a few more years of life than nothing, right?
"They found 34 extra cases of ESRD (end-stage renal disease, the most severe form of kidney disease) per 10,000 donors who were related to their recipients, compared to 15 cases per 10,000 for donors who weren’t (the difference wasn’t statistically significant, but I think it’s still correct for unrelated donors to use the unrelated donor number)."
I imagine if you're donating to a relative, that means there's already a higher risk of kidney disease in the family, so the risk would be increased. As for the risk for donors overall, that may well be because if you have two working kidneys, and then down the line one of them conks out, the other can pick up the slack. But if you only have one working kidney and it starts to fail, then you develop the problems faster and worse.
But it truly was a charitable deed so well done!
I'll only take this one little pop at the Brits, so the castle was the cheapest option? Perhaps, but did they factor in (1) the bad visuals this would produce, so hampering their efficacy because this will turn off the public from donating to them and (2) how do other organisations manage? Are they all out there renting/buying castles, or do they somehow manage to find some kind of conference centre that won't rip them off? I have a feeling that the British EAs had too high an expectation for what they would find acceptable in a conference centre, and coming across a castle they may have found ways to justify "wouldn't it be really cool if we had our own castle?" Boring, bland, beige big room in a hotel may not be anywhere near as glamorous, but I find it difficult to believe it would be that hugely more expensive. I do feel there has been some creative accounting of the "sure, it *seems* like a huge expenditure, but if you take it that over the next twenty years we'll be hiring conference centres at a cost of £X,000 each time, and you multiply £X,000 times Y conferences to get a total cost of £Z00,000 then by comparison, a one-time purchase comes off cheaper".
Yes, you're not paying £X,000 a go for each conference, but now you have a castle to maintain and upkeep, and that's gonna cost.
"I thought I was going to be able to do a good deed that I’d been fantasizing about for years, and some jerk administrator torpedoed my dreams because I had once, long ago, had mild mental health issues."
That's hard. But on the other hand, you live in America. The most litigious nation in the world. Where cities sue car manufacturers because their cars are too easy to steal (Chicago, Baltimore and New York bringing lawsuits against Kia and Hyundai). I'm tempted to say "well in a sane country, you'd blame the criminals for stealing, instead of blaming people for not making their products too difficult to steal" but that would be unkind?
You could swear up, down and sideways that you really want to do this and you're a grown and sane adult and you are doing this of your own free will, but they have no guarantee that five weeks after the operation they won't get a solicitor's letter looking for zillions in damages because they took advantage of a mentally vulnerable individual. Hence, the magic therapy requirement: it's covering their backsides in case of legal action so they can point to "we required him to go to therapy to make sure he wasn't crazy", not for your or any other potential donors' welfare.
it was interesting to read about the low risks of kidney donation as well as the thought process you went through. What I am sceptical about is wether paying people for kidney donations would actually be the best systemic solution for dealing with kidney failure. I don’t have numbers on the following and you are probably much better at doing the research on that, but as far as I know most kidney failure is related to other diseases (like diabetes II or hypertension) the genesis if which is closely related to lifestyle/ living conditions and can well be prevented. Do wouldn’t the best systemic intervention be to create living conditions that allow people of all classes to make healthy choices without additional expenses? (like modifying taxes on certain foods or forbidding them once they have been proven to be harmful - like high fructose corn syrup - or reorganising supermarkets and advertisement in a way that doesn’t ruin lives for the profit of certain industries…) Or even investing more money on alternative treatments for infectious diseases that would allow to use nephrotoxic antibiotics less often?
Those are just some naïve thoughts of a European, but I would be curious your prognosis on those interventions vs. paid kidney donations.
As someone who started looking into thuisbankier reading Mathews’ article and was then beset by akrasia, I want to give this another go. Does Waitlist Zero have counterparts in Europe (specifically the Netherlands)? Their contact form asks for a US address.
Wow, amazed at the quality of writing here. that one blew me away. i had no idea, but have known many in my life who both donated and received kidneys... and i think i knew one whose left one was stolen. But as a non-Dr, and with a RN Nurse sister, I can say this for others, "We don't trust u." Flat out. No trust. Nada. Not for giving blood anymore and not for anything while alive. Sure, harvest everything you can once I am brain-dead, but stay the F away from me until then. Yes, it's that bad. I've been here almost 70 years, and seen shit I still can't believe happen in field hospitals to the best America the world can offer. And now ya got your AI to cut with, so I'm out just from that point alone. You should be really aware about what goes on in the medical-device industrial-complex before you let one of those things tear into ya. FDA? ha. They have better inspections here in Nepal, even with our ragtag group of clipboards and ink stamps. Hate to break ur bubble, but great writing, nonetheless!
> No matter how contrarian you pretend to be, deep down it’s hard to make your emotions track what you know is right and not what the rest of the world is telling you.
This sounds to me like it was written by someone with an very different internal experience than me.
Do you actually feel like you “know what’s right”?
My experience is I often have conflicting notions of what is or isn’t right, and “the rest of the world” isn’t telling me one thing or another - it’s a confusing mass of shouting from different groups of loud, confident, intelligent sounding people all explaining why the other groups are stupid and evil.
Sometimes, I’ll see someone do a thing, or be a certain way, and think, wow, that seems right and good and noble, and I want to imitate that way of being. But to me this is like a non deterministic Turing machine that cannot find the truth (it takes too long!) but is sometimes capaable of recognizing specific instances of it.
If you want to save multiple lives and not discover that falling GFR in older age is twice as bad with one kidney (it is, obviously!), donate blood and get on the bone marrow database. You really can make a huge difference. I'm alive today because a delightful young man in Germany gave me some bone marrow stem cells. Yes, that makes me biased, but it's a no-brainer! I used to be a blood donor back in the UK, but here in Canada they didn't want my blood as I'd lived in the UK in the early 1980s - risk of mad cow disease. Moo! They wouldn't take it anyway, now, having leukemia.
> (obviously saints can do good things without needing psychological permission first, but not everyone has to be in that category, and I found it easier to get the psychological permission than to self-modify into a saint.)
“Assume a virtue, if you have it not.
That monster, custom, who all sense doth eat,
Of habits devil, is angel yet in this,
That to the use of actions fair and good
He likewise gives a frock or livery
That aptly is put on. Refrain tonight,
And that shall lend a kind of easiness
To the next abstinence; the next more easy;
For use almost can change the stamp of nature.”
― Hamlet, William Shakespeare
Having said that, there's one thing that the article never went into that you'd kind of think would be front and center in any talk about transplants: rejection and management thereof. If you give someone a new kidney but at the same time condemn them to a lifetime of immunocompromise, how much have you really improved their quality of life? The more you look at transplants, the more they look like a really terrible thing that we only do because it's the least-bad option available at the moment, the kind of thing that Dr. McCoy would scoff at and accuse us of being barbarians living in the Dark Ages for practicing.
Out of curiosity, (I genuinely don't know and would be interested in finding out if anyone's looked at this,) has there been any research done on questions along the lines of "would it be more effective to donate a kidney and help one recipient, but we know it works, or to fund stem cell research into own-organ cloning which could end up solving the problem for everyone but is currently hypothetical?"
1. Everyone knows we need a systemic solution, and everyone knows what that solution will eventually have to be: financial compensation for kidney donors.
Over the longer term, I'm highly optimistic about bioengineered human-compatible kidneys grown in pigs.
2. I was getting worried when Scott didn't post much over the last few weeks. Now I know why! And it's a very commendable reason. Thank you Scott for donating!
Personally, I've donated blood and sperm (and I'm due for another blood donation next week). I thought about kidney donation but decided it would take too much time away from my research, and I'm worried about its negative effects on me.
For what it's worth, I know two people who have recently gone through the process. One dropped out late in the process, and the other successfully donated their kidney. This is in the last ~6 months.
The one that dropped out felt very pressured by friends and family, and realized they were not in a good life place to take the time off of work. I think they were scared as well.
The one who donated seemed to have a fine time and was back at work well before expected.
Both reported that a charity was going to pay their expenses, including lost wages. For the one that went through with it, that seems to have worked exactly as advertised.
Kind of related. I’ve always thought that “opt-out” (instead of opt-in) organ donation on driver’s licenses for example, would help increase the supply of organs including kidneys. But when I’ve talked to healthcare economists about it, they say it’s a bad idea because it would bankrupt the health care system given the high cost of these surgeries and the aftercare. Thoughts?
Obviously the castle people could have found cheaper, drabber options, and guests would've been fine with it. I doubt there's a warehouse shortage. It seems EA folks haven't learned much from FTX.
There's an implicit Peter Singer argument in here somewhere. I only have one kidney to give, so by giving it to a stranger, I can no longer give it to a family member.
Can you try getting the statistics for Israel to get a better idea of the risks? My understanding is that in Israel the situation is reversed, with ~90% of kidney donations being altruistic (unrelated to the patient) so the statistics will be a lot less messy.
In Germany it is actually illegal to donate a kidney to a stranger while you're alive. (You can do it when you're dead, but obviously then your kidney won't be as good.) While you're alive, unless the recipient is a relative or at least something like your fiancee, apparently the law considers the dastardly danger of the ever-menacing terrible organ trade mafia too great to allow you to save the DALYs of a fellow human.
Eff tax breaks, why not help the people that need it more? Organ donation for get out of jail cards. Not for murder and rape. But surely we can find it out heart to forgive those people who downloaded a bunch of songs on Napster or something. Next time someone wants to make an argument about how they made a terrible error in judgement and learned from it, there is a way to directly demonstrate that. Hell, kidneys for green cards might just be the kind of proposal both sides might just accept.
I'll grant that 30mS increases risk by 1/660, but that's not the same thing as a 1/660 risk of dying. If your risk of dying of cancer is, say 1% baseline, increasing that by 1/660 is like an extra 1/66000 chance of dying (ballparking here). Am I missing something here?
Wouldn't it make sense for total organ donation to be the default execution method? Lesser criminals could donate a kidney in exchange for reduced sentence.
I know this is beside the point of the article, but since you're an MD in the field I was curious about your use of the word "schizophrenic" in this article. It seemed like you were using it to refer to multiple personality disorder, which I thought was distinct. I've been pedantically, obnoxiously, correcting this in other writing and ask not questioning if I've been wrong all this time!
"Obviously this kind of thing is why everyone hates effective altruists. People got so mad at some British EAs who used donor money to “buy a castle”. I read the Brits’ arguments: they’d been running lots of conferences with policy-makers, researchers, etc; those conferences have gone really well and produced some of the systemic change everyone keeps wanting. But conference venues kept ripping them off, having a nice venue of their own would be cheaper in the long run, and after looking at many options, the “castle” was the cheapest. Their math checked out, and I believe them when they say this was the most effective use for that money. "
I'm curious to see the math for Wytham Abbey. All I ever saw was Owen Cotton Barrett's response when this was brought up over on the forum. The actual cost benefit analysis for paying £15 million wasn't made clear. As one comment pointed out, the reasoning given for purchasing the castle "could have been made virtually verbatim had the cost been £1.5m or £150m."
You might have seen more information than me though.
The blood donation centers assert that donating a pint of blood saves three lives; this seems... overstated... though as brazen propaganda it certainly worked on me. Do you have a more plausible estimate?
"I asked if they could do the kidney scan with an MRI (non-radioactive) instead of a CT."
Radioactivity and ionizing radiation are related but not identical concepts. Radioactivity is a type of ionizing radiation, but ionizing radiation can be generated in other ways besides radioactivity.
CT scans don't use radioactivity but do use ionizing radiation. Nuclear medicine tests use radioactivity. MRI uses neither.
Hey Scott, have you looked at New Zealand's reform?
NZ Initiative, a sort of free market-y think tank advocated for a model where donors are compensated for lost wages (previously donors were only compensated for a small fraction of their prior earnings).
It inspired the Compensation for Live Organ Donors Act, which states "live organ donors who are eligible will be paid regular weekly earnings from the day of their surgery and for up to 12 weeks while they are recovering."
Coincidentally enough, in today's NYT crossword puzzle, the clue for 10 Down was "Givers of priceless gifts", and the answer was "ORGANDONORS". Well done, Scott!
Beautiful entry Scott. I donated for a selfish reason (to a family member, my dad) but still share most of the sentiment (and post-op hiccups!). It really resonated in me. Congratulations and my best and sincere wishes to you.
Does anyone know if there is an equivalent to the thing about giving 5 family members names for priority kidney donations when you live in the UK? I may have missed it somewhere but I can't seem to see it on the information online, and you'd think it would be something they'd make very visible if it was an option.
My kidney mentor was very helpful because she told me to set up my voicemail. I think I would have disappeared into the kidney abyss if I hadn't done that.
Because I also didn't believe it, I looked into it. The 1/660 number seems OOM correct.
From Radiation Dose Associated With Common Computed Tomography Examinations and the Associated Lifetime Attributable Risk of Cancer by Rebecca Smith-Bindman, et al, they estimate you would require 498 40yo male patients receiving a multiphase abdomen-pelvis CT to give one of them radiation-induced cancer. While this radiation-induced cancer is not necessarily mortal, it is probably >10% lethal (some of the other looking into it I did suggests ~50%), so that number sounds right-ish.
you really are a saint! (I lost my paternal grandfather early to kidney failure, my father is on dialysis and my uncle was too for years until his wife donated him her kidney. both me and my sister also have slowly failing kidneys so I know how valuable a functional kidney is) I hope if there is an afterlife you go to the best section of it.
by the way here in the netherlands what worked great was to make being an organ donor the default option rather than not being an organ donor. turns out the vast majority is just too lazy to change the status.
As a male your lifetime risk of developing cancer is around one in two. A 1/220 additional risk modifies this to become 0.5045. So the difference is fairly miniscule. The 1/10,000 risk of death from the operation is a probability and so is not comparable to the excess risk value.
Your methodology for calculating the risk from the radiation dose received in the screening exam is flawed. The thumbrule you quote is correct, but the risk from radiation exposure is not linear. Low doses are much less problematic than large ones, as the body has the ability to repair radiation damage up to a certain threshold.
Good for you for saving a life! According to the Talmud, you’ve saved an entire world! Why didn’t you meet with the kidney recipient though?
Modifying NOTA is brilliant and necessary. Reducing taxes for ten years seems like it only would incentivize middle class and rich people who pay taxes. This would cut out 50% of the potential donor pool. Why not just let Medicare pay donors; they’d still be saving money by not having to pay for dialysis treatment. I wrote about this years ago.
Wow, Scott! That's a wonderful thing you just did. It shall be accounted to you as righteousness!
Like many other commenters, I was speculating that maybe your wife just had a baby and that you were going to pop back in here with a "Hi everyone, meet Earendil Metatron Alexander!" I did not see a kidney donation coming.
Excellent, excellent, excellent. As an applied use of mild recurrent OCD and a comprehensive examination of voluntary kidney donation. Thanks for both.
Congrats on donating! I've bought specially branded t-shirts that say "I donated a kidney to a stranger and all I got was a stupid t-shirt" for people who have done that. I don't know if you're going to read comment #310, but let me know if you want one. From the people who have one, it's apparently a cross between funny and helpful to start conversations
The amount of bureaucratic friction placed between potential donor and donation sounds wildly disproportionate relative to risk, need, and reward. Sorry you had to go through that. Maybe just reforming the bureaucracy, with good rather than bad bioethics norms, will go along way toward pulling that % of donors up to 1-3%.
I think because it's adjacent to a lot of bad ideas and sets off people's "bad idea detector" in a way that doesn't turn out to be valid once you think it through.
Like if risky performance-enhancing drugs are legalized, then in competitive fields, taking on the risks of the drugs will be table stakes. Or, "if lots of people have an extra $10k a year in income, won't that just raise rents by $833 a month, to the point that people can only afford to live in San Francisco if they donate a kidney?". Or, "Won't this only appeal to desperately poor people, so we're using the poor as organ farmers?". They basically all boil down to "you don't want the compensation for donating an organ to become something that people depend on".
But there just aren't *that* many people on the waiting list in the grand scheme of things, so there'll likely never be enough kidney donor slots for it to become the sort of thing people do to just get by.
You'd almost want to scale the incentive based on number of willing donors versus remaining demand, which makes me realize I'm talking myself into a market for donated organs.
I wonder if part of the unpopularity is that 'stranger donors' tend to be weird (see below, and WEIRD, see Joseph Heinrich), and that most people, if they have any exposure to the concept, is from the emotional torture porn/Will Smith vehicle Seven Pounds. Which isn't altruistic donation (he's doing it for redemption, to balance the scales), but is possibly the closest thing in mass media.
>Your brain uses the same emotional heuristics as everyone else’s.
No, I suspect that's not entirely true, or EA either would not exist or be wildly more popular. See below-
> I asked them what kind of therapy was indicated for mild OCD that’s been in remission for twenty years.
While I want to assume the professional psychiatrist knows more about OCD than I do, I'm... *unconvinced* that some noticeable degree of EA intuition isn't a variety of scrupulous OCD.
That isn't to say it's not real, or that they're not doing good, or there's not similar parallels in many ways, or that "wanting to do good" is a problem, etc etc. Try not to be unnecessarily uncharitable in reading me, okay? But the commonality of the intense empathy, intense desire to do good, generally-somewhat-and-sometimes-*really* radical unselfishness strikes me that indeed *no*, your emotional heuristics are clearly not the same. In some cases you go to lengths to, as you say, [remove those guardrails](https://www.astralcodexten.com/p/book-review-what-we-owe-the-future), but at least to some degree it seems innate.
Edit: My own (pointless, sidelines) take on the Castle Scenario is that buying a venue is not, in theory, a bad idea. That venue in particular clashes with the general "aesthetics-deficient" perception of EA, but more importantly for why it caused such a big stink, communication about it was awful and in the end they just wound up downgrading the EA Forum community section to get over it, which is not a great solution. Sort of a... "trust your betters" and "shut up, peons" vibe; a lot of unforced errors involving the communication and not just the actual purchase.
My colleague Luke Semrau has written several articles arguing that there should be a kidney market. https://philpeople.org/profiles/luke-semrau. I think his work is good, despite the fact that utilitarianism is a false theory of morality (my main objection to EA enthusiasm).
I wonder what the breakdown of the 100K on the kidney list is between people who had kidney failure through no fault of their own (non-fun sports/stupidity accident, genetic disease, autoimmune) vs. lifestyle choices like diabetes due to eating too many fudge rounds.
Does this factor into the altruism view - of potentially rewarding someone for bad decisions?
Good job Scott! I ran into logistical issues last time I started this process, but I now feel inspired to give it another go.
On the topic of the “castle” scandal. It’s important to know that there actually were two “castle” scandals, the second one being the ESPR chateau purchase which I made an EA-Forum post about:
This post got a comment from a high-profile EA who was more involved in the project accusing me of spreading falsehoods which he promised he would write out later.
Naturally, since he was a high-profile EA much closer to this purchase and I’m just a random schmuck, a bunch of people heavily down-voted it, I lost karma/voting-power and the issue itself lost visibility and is now largely forgotten.
However, when the person later gave the promised list of falsehoods he put it in a swamped comment section without a link or mention of the original post which would’ve allowed people to compare. If they could’ve done so they would’ve seen that his comment didn’t point out any falsehoods at all and in fact spread a bunch of falsehoods about my post, the most egregious one I consider him vaguely implying I doxxed a bunch of people. (to this day I have trouble getting EA’s to reply to emails or accept my applications, and I have to wonder whether that’s because they think I’m a liar and a doxxer)
Can you elaborate more on the exact criteria for psychological conditions precluding you from donating your kidney? Clearly it's variable across institutions. Will having a mild mood disorder (which honestly doesn't affect my decision-making at all) on my record be a problem?
I am incredibly proud of you Scott, incredibly proud. I have been reading your blog ever since I was about 16, pretty much grew up on them and I am also a transplant recipient. I have to say, there has never been such a step change in my state of existence. Going in to the operating room I felt terrible, I then went under sweet anesthesia. When I woke up, I felt better, much better! I had just undergone a serious surgery and I was feeling better! The nurses wheeled me in to my mothers room. My mother, the visage of the Madonna was laying in her bed, having given birth to me a 2nd time. They held up the bag of golden urine, the water and waste trapped within me was gushing out. What happened in that operating room felt like a magical ritual. I am incredibly grateful for you that you helped someone experience what I experienced.
As for my story, I had kidney failure 1 year ago. I was on peritoneal dialysis (not hemo, where blood is taken out of the body, this is the usual one in the hospitals). To illustrate what this is like. There is a catheter attached to your abdomen. This catheter goes in through your abdominal wall, creating an open, oozing wound. I had huge psychological troubles with the catheter. It essentially made me feel disgusted with myself. I would carry it around attached to an elastic belt. Every breath I would take would lead to me noticing the catheter, noticing my disease. Noticing that I was a failed organism that had lost its ability to get rid of its waste.
The other end was connected to the dialysis machine, essentially a big pump. Every night you set up the machine at home. This involves connected about 10l of dialysis solution to the pump. During the night it pumps about 2l in to your abdomen every 1.5 hours or so and pumps it out. The waste in your blood diffuses in to the dialysate contained within your peritoneal cavity. This is then pumped out by the machine.
Sometimes, I would wake up with about 3-4l in my abdomen, belly bulging, the skin taut like a drum. The machine constantly kept me awake so there wasn't too much sleep anyway. It honestly was a limbo like experience waiting for my transplant. And despite all of this the dialysis only gets you about 5% of kidney filtration. That is it. You still suffer daily from nausea and fatigue. Not to mention the fluid restrictions, these were the worst.
Have you ever went 2 days without drinking any fluid? No water, no tea, no coke, nothing. Absolutely nothing. That was my existence. I had to double think about whether to eat a certain food if it had too much water. When you can't urinate, there is no where for the water to go. I also noticed how much of our social life revolved around drinking things.
So I tried to take power in some shape or form in to my own hands. Even after a transplant the future of the transplanted kidney is not certain. The prospect of returning back to dialysis haunts me, like the Sword of Damocles it hangs above, ever present. I want to vanquish this specter, I felt like I was robbed of a normal life by disease, so it was time to fight back. I have a mechanical engineering PhD, I was in automotive. I applied to all the Nephrology groups I could think of, for anything. I wanted to learn, I would do any technical thing for them in return for knowledge and experience in the field only. I did not want payment.
In the end, I had two offers. One was an internship at Erasmus Medical Centre on kidney Organoids. I believe that the eventual solution to the problem rests with lab grown organs. The other offer was from University Medical Centre in Utrecht. This was a 3 year post-doc position on developing an implantable bio-artificial kidney. I was in a dilemma for a while. I wanted a final solution and only the fully lab grown organ was that. But the future to that is uncertain. What if we really need the full embryological niche to build functional tissue? There are so many unknowns.
One night, I was walking back from my girlfriends house (15 minutes down the road walking) to my rental, to my machine. I was feeling horrible, the dialysis can't manage electrolytes very well, so sometimes I felt like my muscles weren't entirely there. Having left her house, without being able to sleep in the same bed (though she often came overnight to me, bless her). I finally resolved to start working. Not fundamental research, but hard engineering work which may yield an imperfect, but far better than what we have currently have, solution in the medium future. So I accepted Utrecht's offer.
I am still amazed that these guys took the risk, to accept a guy with no prior experience in the field. It really amazes me, I do feel indebted to them to some degree. Having started the project and seen how interdisciplinary one needs to be, I think indeed the most important thing is competence and drive. The former is to be proven, latter I am sure I have. I am writing this from my lab. I am currently setting up testing and device/prototype fabrication pipelines. I came in to lab 3 weeks after my transplant surgery which happened 30 May 2023. Its a huge project, and its requires all my efforts. But in the end, I will need more hands and minds.
There are parallel efforts happening in UCSF (your favorite place Scott!). But I have doubts that I shouldn't raise publicly under my own name. In any case Scott, if you want a chat about the project I would be honored (I could also tell you something about the transplant process from the transplantee side, my experience here was quiet interesting and similar in nature to yours!). In the end, for us publicity will be helpful. But more importantly, hands and minds.
I am 28. I hopefully have a long life ahead of me, and unfortunately, a lot of time to go back on dialysis again. The last thing I want is to hold my child with a catheter attached to me. Never again.
My husband has a rare genetic disorder that caused kidney failure in his 30s, and is currently on dialysis. We have a donor in the pipeline but no guarantees of anything, ever.
I would like to be an advocate for increasing the number of kidney transplants and was interested in the proposal to modify NOTA. Having "opt out" rather than "opt in" organ donation on driver's licenses and other IDs would also increase the number of deceased donor kidneys available.
I would appreciate connecting with your kidney mentor or anyone else interested in a coordinated effort to promote kidney donations.
"Everything else I try to do, there’s a little voice inside of me which says “Maybe the haters are right, maybe you’re stupid, maybe you’re just doing the easy things. Maybe you’re no good after all, maybe you’ll never be able to figure any of this out. Maybe you should just give up.”"
This sentiment makes me want to scream. You’ve written things for years that many people have enjoyed, have found interesting enough to take into their own vocabularies and mental models and cite and link to years later. There are multiple thriving communities out there that are offshoots of your blog’s comment section. That you can’t trust the value of your own work - work that may be easy for you! but has not been done by anyone else! - because it can’t be measured in QALYs or DALYs or whatever is... frustrating, sad, and not surprising of course to anyone who’s been reading you for some time.
But letting the social circle and not-a-religion inside your head win is worse in some ways than the Guardian columnist, because you know the columnist isn’t you.
Very interesting story and analysis. One question my wife (coincidentally a Weill Cornell doctor) wondered: Is there an EA movement towards encouraging people to donate blood? That seems comparatively simple and costless, and there's a shortage right now.
The "intuitive" objection to EA (particularly EA as exemplified in this piece) has teeth.
Donate a kidney to a stranger, and now you haven't one to spare in the event that someone close to you (relative, spouse, child, friend) happens to need one at some future point.
The "off-the-shelf human" intuits that a stranger-donor puts a finite multiplier on the "value" of prolonging the life of a relative/spouse/friend (the probability that this opportunity ever comes about is not pertinent, so long as it is not zero) vs. that of a total stranger. This is not how a "blood is thicker than water" standard-issue human is wired; it "fails checksum", and not everyone who breaks out in hives when reading about it is able to articulate the precise reason why. But it is a healthy reaction nonetheless.
It is part of why EA comes off as a creepy, evil cult to many people, and articles like this do their necessary bit to make it so.
Stalin famously refused to ransom his eldest son, who perished in German captivity. (the offer was to trade field marshal Friedrich Paulus, captured earlier at Stalingrad.) "We do not trade privates for field marshals." Whatever one may think of Stalin -- whether one sees his act as a heroic one, or simply further proof of his depravity -- it was an unusual act, and I find it difficult to imagine that most people would wish to inhabit a society where it would be regarded as ordinary and expected. Perhaps EAs would -- but this is why EAs are creepy, evil cultists from the POV of someone who doesn't also practice that religion.
From my non-EA, "normie" POV, to be willing to sacrifice your spouse, child, sibling, parent in order to save ANY number of total strangers, is a depraved thing. And the people who break out in hives when thinking about it, do so for perfectly healthy, valid reasons. And I break out in hives with them, when contemplating a society where people do in fact regard their family and friends as fungible vis-a-vis strangers, regardless of how numerous or imperiled the latter may be.
God f*cking damn it, I also got rejected for mild OCD by UC Health here in Colorado. They did NOT respect my right to bodily self-determination, and this was after I had done the 24 hr of pee, full day of tests, lots of follow up tests (a weirdly high fasting blood glucose level but fine results in the challenge test, concern over LVH but turns out I'm just a runner, neutropenia but turns out it's congenital and not a problem). I didn't disclose that I had OCD, because I didn't know at the time. Initially, I didn't agree with the diagnosis (scrupulosity - which seems a little too convenient of a diagnosis for someone trying to give away their spare kidney), but as time passed, I realized he had a point. It doesn't matter though. I am confident that my OCD was unlikely to cause much of a problem with donation / recovery. I would have happily given my informed consent, and I resent the hell out of UC Health for not giving me that option. They kept on repeating that because I was in good health, they needed to be diligent about making sure I could stay in good health after the donation. This paternalistic pablum makes my blood boil, though I know physicians take "do no harm" seriously. But I would appreciate if they would widen their view. Being denied the agency to donate my spare kidney did activate my OCD rumination - did they care about *that*? What about the loss of utils - to the recipient, but also potentially others if mine were a bridging donation? Their consequentialism is irritatingly narrow. Sincere, but narrow.
Congrats for not letting the haters get you down, and completing your donation. In your face, UCSF!
I considered kidney donation at one point, but my spouse talked me out of it. Their logic was that while kidney donors don't have worse outcomes than the general population, they DO have worse outcomes than those who pass the standards to become donors.
The fact that the medical community elides this distinction was enough to convince me that they're lying, and shouldn't be trusted with my life (or kidney). I'm happy to reconsider if that situation has changed.
Setting aside the long timeline for scientific development and regulatory approval, why is the ultimate solution not "let's grow infinite kidneys from pluripotent stem cells"?
"But I think about myself at age 20, a young philosophy major studying utilitarianism. If someone had asked me a hypothetical about whether I would donate a kidney to a stranger in need, I probably would have said yes."
I think about my alcohol consumption at age 20 and if someone had asked me a hypothetical whether I would donate a kidney to a stranger in need, I probably would have said no effing way.
I donated in 2021 and have nothing but good things to say about the experience so far. They did take my right, the jury is out on whether this has lead me to become evil.
I suffered from depression as a teenager and was briefly hospitalized at one point. However, the psychiatrist who did my eval was very reasonable about the fact that I am a mentally healthy adult, and it wasn't an obstacle at all. This was through Tufts in Boston, who I would give high marks in every category, including catheter insertion.
In your experience, is there a relationship between kidney disease and being a kidney donor?
Nephrologist:
Pre-donation there is a strong relationship between healthier than average & having great kidney function.
Post donation there is an increased risk of mild kidney disease; people who donate a kidney go on to have kidney failure at a lower risk than that of the general population (but they started out better).
People tend to be very satisfied that they have donated a kidney to a loved one (dialysis stinks).
All of that was for the US …. In countries where people sell kidneys outcomes for the donors are NOT so good.
Me:
Thanks. So in your experience, kidney donors are underrepresented among people with severe kidney disease?
"The Talmud is very clear: that voice is called the evil inclination, and it dwells in the left kidney. There is only one way to shut it off forever. I was ready."
So why you passing off this evil onto some other poor slob? Couldn't you have handed over your right kidney?
"The usual rule of thumb is that one extra Sievert = 5% higher risk of dying from cancer, so a 30 mS dose increases death risk about one part in 660."
Aren't you confusing absolute and relative risks here? "5% higher risk" means 5% higher than the *already low absolute risk of getting cancer in the first place*, doesn't it? And that is certainly many orders of magnitude lower than 1 in 660.
EDIT: The correct figure, assuming 5% means relative risk and using the cancer incidence numbers from Google, is 1/4650. There's also the issue that Scott is comparing that number directly to the 1/10,000 risk from surgery despite the fact that death from surgery would be immediate and death from radiation would be many years in the future. Once you take that into account, surgery poses a far greater danger.
This really brings back some memories. I used to live in the Bay Area, and found it a very lonely place for me, working, unable to figure out how to gain friends or love. I was a mess, really.
Then I gave blood and ticked a box about bone-marrow donation, and I was a match. I walked around high, it felt literally the kind of high I'd pay for drugs to get. Whatever dam of brain chemicals that I kept held off until I felt like a worthwhile person, somehow I turned the inaccessible spigot, and I felt authentically good for maybe the first time ever. This is what it must be like to be pregnant, I'm crossing the street for two people!
I was well taken care off, the operation went well, but I got some kind of a bleed in my leg and i was in pain for some months after, but with every twinge I felt the hero. And, well, the leukemia patient died, so I'd also advise anyone donating it's a harder row to hoe to get that outcome information. My leg still (30 years on) has minor problems, but with that meaning attached, I don't count it as a loss; maybe I've even needed that reminder. It's not like I've done much better at the self-care since then really.
I think you did something noble for an individual's life at no small cost to yourself. I don't think its fair to make it about effective altruism in the negative. The individual decision and act was good, and whether or not a single person chooses to explain it was enhancing QALY years, or you felt a strong compassion, or because you felt a religious duty uncoerced doesn't change that. Not everything need be a debate on a universal philosophy or the flaws of such.
i am older now and worry though. It's never good to hear anyone you interact with even slightly has been in the hospital. It's a place we need but never want, if you get my drift.
I hope the recovery from the uti was quick. Hope the wife is ok too. Supporting can have its own fears and worries. Please take it easy.
You wrote: "This is great - my grandfather died of kidney disease, and 10 - 20 more years with him would have meant a lot."
You didn't mention this in your risk calculation for donating! Did you look into the likelihood of developing kidney disease conditional on a family history? Seems like a relevant calculation, I'm guessing that you looked into it and found no increased risk...?
You're a good man, Scott. And this was a good writeup.
I'm old enough that this probably wouldn't be a good choice for me now, and I can't honestly say I'd have done it ten years ago if I'd thought of it. But, in spite of having donated my entire blood supply something like ten times over, and being on the bone marrow donor list most of my adult life, it never even occurred to me that this was a possibility before now. You'd think that, being on the list of people who is clearly open to donating non-vital organs, somebody would have mentioned the possibility. And probably they did at some point, but not in any way I noticed and certainly not with any assessment of the risks.
So there's clearly an information deficit here, and one you've helped deal with. Let's hope that this post gets lots of signal-boosting. Speaking of which, if EA already has the reputation in some circles as Those Wacky Nice Guys Who Keep Giving Away Kidneys, what's the tradeoff on bednets vs. public service announcements re kidney donation?
"When you donate, you can give the organ bank the names of up to five friends or family members who you’re worried might end up in this situation. In exchange for your donation, they will make sure those people get to the top of the list if they ever need a transplant themselves."
Can you change the names later on? I'm thinking about the sorts of incentives this could create.
Rather than direct payments, a lifetime healthcare benefit, like early admission into Medicare or some other coverage, would (a) most directly address people's principle anxiety about the procedure, and (b) be more digestible to those with a strong... sanctity drive if you want to be Haidtian about it.
What I mean is, it might help counter instincts of "ick paying people to do charity is bad" or "ick paying people to do bodily sacrifice is bad." (Even though, at worst, sure it is kind of a sleight of hand. But if people genuinely prefer packaging a fungible benefit in a particular way, why argue?)
The healthcare angle might especially entice those who want to hang a shingle, but are worried about missing out on a system dominated by employer-provided care.
If every solo contractor (in tech, professional services, entertainment) had the option for lifetime free healthcare by donating a liver or kidney, you might close the shortfall.
Tangent, I had assumed opt-out deceased donor policies were widely considered to be an easy policy win here, but recent research seems skeptical, so I'm more unsure:
Specifically the clarification of how Spain's system works in practice surprised me. I'm not quite convinced opt-out is net harmful, but understand the risk of discouraging voluntary donations, so maybe the better investment is in donor counselors for grieving families and improved logistics for abruptly available organs.
(Hang on a second, would UCSF have taken your kidney if you died in a motorcycle accident in their parking lot? Was that their preferred admission path!?)
Very cool! Wanted to go through with this earlier in life but my family was adamantly opposed to it. I've been donating blood and figured bone marrow donation would be a good compromise. I got the swab kit for the bone marrow donation and promptly forgot about it - tonight I'll open it. This post was exactly the push I needed. Cheers!
Tangential to the donation issue, but are there any surgeons here who can explain why the incisions for a laparoscopic nephrectomy are on the front of the abdomen? I would have assumed it would be easier to get to the kidneys via the back and/or side.
I'm worried that this donation was made out of scrupulosity, which Scott of course has discussed in several posts. Scott's stated reasoning for donating:
> Everything else I try to do, there’s a little voice inside of me which says “Maybe the haters are right, maybe you’re stupid, maybe you’re just doing the easy things. Maybe you’re no good after all, maybe you’ll never be able to figure any of this out. Maybe you should just give up.”
But reading this just makes me feel sad. Like poor guy, he felt so bad about himself that he had to cut out part of his body and donate it to make himself feel worthy. Or as Scott put it in a different article (https://slatestarcodex.com/2015/01/01/untitled/)
> A better word for this untitlement is, perhaps, scrupulosity, where you believe you are uniquely terrible and deserve nothing. Scrupulosity is often linked to obsessive compulsive disorder, which the recent survey suggests nerds have at higher rates than the general population and which is known to be more common in high-IQ people. When I hear my utilitarian friends say things like “I have money and people starving in Africa don’t have money, therefore I am morally obligated to give half of my money to people starving in Africa or else their starvation is my fault” and then actually go and do that – and trust me, these people are always nerds – then as often as not it’s scrupulosity at work.
So maybe it was reasonable to turn him down for the OCD history after all.
I'm biased here. I don't think donating a kidney to a total stranger is a good thing. I share the intuitions of other commentors that it violates the moral value of Purity. And there's something disturbing about doing it for this reason. There's a story about someone who starves himself to death for EA purposes - I can't find it at this moment but I'm sure it's been posted in the comments on Scott's blogs before. This has that flavor to me, even if it's only a 1% chance of death. It's just too self-denying, in a visceral way - a knife is taking out one of your organs! (ok, probably a laproscope, but still.)
Basically, I think we should feel good about ourselves already - we shouldn't need to donate 10% or a kidney to get to that point. (https://slatestarcodex.com/2014/12/19/nobody-is-perfect-everything-is-commensurable/) And if we're not at that point, our resources should go towards ourselves, to fix that problem, rather than give up some part of our life.
Maybe it's my transhumanism. Permanently reducing my physical potential (even in such a minor way) just rubs me the wrong way. Also, I intend to live a very long time and I don't fancy removing a potentially necessary part of my body.
Regarding the gap between people who said they would donate vs who do: I think it's like the Peter Singer analogy of saving a drowning child in the forest. If you are the ONLY one present, most people would try to save the child. But if there are millions of children at risk and billions of people who are in a position to save them, there is almost no pressure on you. Similarly, if someone come to you and say: "you are the only match for this person, please give them a kidney because no one else can", about 50% of people are honest in the survey that they would donate in those circumstances. But not in real world circumstances.
It is good to know that friends and family get priority, that was one of the things holding me back before, I will check out my local organization and consider donating more seriously as a result of reading this information. Thank you!
Just came here to say that this is awesome man. Being willing to let go of an important body organ is selfless and noble. You valued action over talk. You loved your "neighbor" (a stranger) as yourself. You cared for someone in a massive, humble, and anonymous way. Good on you.
1000% agree on financial incentive for kidney donation (as well as other organs in need, or even blood when in need). This would solve many issues in this realm, and save government/insurers massive many X in the long term.
EDIT: Financial incentive in the form Scott proposes, such as tax credit, seems like a good way to do this, as opposed to cash
Security guards and gun control are effective measures to prevent school shootings, but so are structures that assure low-threshold contacts for students with troubles with their family or with bullying and while the first might be necessary, the second addresses the problem at an earlier level. On a similar side „making everyone eat healthy and exercise“ doesn’t work if we try to force people to do stuff without changing existing structures. People who have to struggle for their existence tend to chose the path of least resistance, so if the path if least resistance is fast food and cans, they will chose that. However, if we create a path if least resistance that allows people to be healthier on the side, it’s not like they will object. You can improve people‘s health by how you design cities, by making it easy to access structures of every day life (stores, schools, work) on foot or by bike. In Europe there’s another good example in the field of organ donation. In Austria your organs can be used after your brain death by default, unless you disagree, whereas in Germany you have to actively declare that they can be used. Obviously more people are organ donors in Austria, because to actively disagree, you have to mentally engage with the topic and that’s uncomfortable, so not disagreeing is the path of least resistance.
NOTA sound much better than nothing, and if the options are NOTA or nothing we should all push NOTA.
But I wonder if NOTA is better than opt-out organ donation by default for everyone in the country. Either in terms of outcomes if each were implemented, or in terms of political feasibility.
My own impression of the situation is that opt-out donation would solve more problems faster, and I like the ethics of it better (financial incentives are always going to be distortionary on other things, given how central money is to all of our systems and incentive programs).
But maybe NOTA is easier to pass politically because it's a tax cut and everyone likes those? Or something about what section of law would have to be changed and how much attention it would get?
Knowing very little about this area, I just wonder if the much smarter and better informed people pushing NOTA have a standard spiel or link I could read about why put effort behind that instead of opt-out. I would love to learn whether I should be changing my standard rhetoric on this topic.
Like a few other commenters, I found this post quite sad, and it reduced my trust in Scott’s good judgement a little bit. Possibly this is because I have a good chance of needing a kidney/being on dialysis at some point (around 1 in 3 to a first approximation: I’m type 1 diabetic and have various related issues. diabetes is the most frequent cause of kidney failure).
First: most kidney failure is a consequence of chronic illness. Effective altruism here would be to donate to/work in research on curing those illnesses, or on artificial organs, rather than donating. Donated organs are a sticking plaster rather than a solution.
Second: doing a good thing so you’ll feel good about yourself doesn’t seem healthy. If/when I need a kidney, I would not want to take one from someone who felt that way (scrupulosity cuts both ways).
Third: I think caring primarily about people you know and love, and less about far away strangers, is one of those traditions that is well founded and morally correct but is not “legible” (like the processing of manioc, in an example Scott used in an old piece). Perhaps one reason is that this tradition means that our feelings of generosity and caring are less susceptible to exploitation. Donating organs to random strangers is abandoning this tradition.
Anyway, I hope this will be helpful to other people who are considering this type of donation. I also hope my comments won’t be upsetting for Scott: that’s not my intention. I do hope you feel really good about yourself now, (and I think you should have felt really good about yourself all along!!)
Weird question but, could you say what was the weird pattern you use to touch objects as a kid? Curious cause I used to do that too! In my case the pattern was like A B, then B A - out of some vague sense of "fairness" to object B, so it can go first as well. But now B was first second, which is still not fair, so let's do one inverted round, B A A B. But it's still not 100% symmetrical, so you go B A A B A B B A, but then... Yeah, it was a recursive pattern that could go forever which was, uh, a problem at times.
Recently I found out that this pattern actually has a name, Thue–Morse sequence (OEIS A010060), which I thought was super cool.
About a year and a half ago I seriously considered donating. I went through the screening and got approved to donate. During the screening process a doctor mentioned a study about post-operative pain, which I believe was this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6790588/
IIUC, the study reports that ~1/20 donors reported chronic pain (that they self-report is due to the operation) years after the operation, and that those that do report a significantly decreased quality of life. The study doesn't have any controls, so it's possible that this is mostly due to the donors being mistaken about the pain being caused by the surgery.
That study gave me enough pause that I so far have not gone through with the donation. Scott, or anyone else, curious to hear your thoughts on it.
Hm. When I query my instinctive emotions (as opposed to a more rational system of ethics), I can say that I'd jump at the chance to donate a kidney (to start a chain) if a close relative or close friend needed one, but that this falls off rapidly the less I know the person and the less I interact with them on a daily basis.
However, if I happened to know the single bit of information that the person in need had previously donated a kidney to a stranger, that instinct goes right back up to somewhere around second-cousin-whom-I-never-see level, which is roughly "answer yes within 1 minute, but it'll take about 30 minutes before my emotions are fully on board".
I suppose this shouldn't have been a surprise given my instincts around reciprocity, but it was shocking to feel that switch flip, even in a hypothetical.
I'm considering kidney donation at some point in the future because of this article, but my mental health history is much more recent and stigmatized than yours and I think there's a decent chance I'll be rejected. Hell, there's a chance they'll view my desire to donate as a sign of mental instability. But, I will research it more and talk to friends/family/my psychiatrist/my priest (yeah, not very Rationalist of me) about the idea and maybe fill out that form in 6 months or so.
But the idea of kidney donation did remind me that I've always meant to donate blood but never got around to actually doing it. The one time I actually made it to a donation center I walked up 4 flights of stairs to get there and was rejected for a high "resting" heart rate. So I signed up to donate blood tomorrow and I'm going to try to be a regular blood donor even if kidney donation is off the table.
Just one data point, but I lost a kidney to cancer 23 years ago with no ill effect so far at 81 years old. Ther is noting I do or do not do because of having just one kidney.
I find this absolutely admirable, I wish I eventually grow up to such selfless courage. However the more I think about it the more I run into a conceptual issue.
The thing is, I care about animal suffering almost as much as I care about human suffering. And I fear that by giving a kidney to a random person, the chances that they are a carnist are overwhelming. As a pure counterfactual, my action of saving this person will then cause immense suffering, potentially 10 to 20 years of daily contribution to the torture of conscious beings. I wonder if others have thought about it this way?
As someone thinking about donating a kidney, I have two concerns with the cost benefit analysis here. Firstly, it seems to me that the expected utility of donating a kidney today is only positive conditional on it being the case that:
(a) You do not have the opportunity to just save some other person’s life by letting them use your kidney after you die.
And it seems that (a) will only hold if: (1) the organ shortage is solved within your lifetime, and/or (2) your kidney will not be in useable condition after your death. I think an analysis of the probability of (2) would be helpful here.
The other problem: people who actually do donate their kidney to a stranger are clearly a very weird subpopulation, differing in all kinds of ways from those who could be allowed to do so but don’t. So these possible but unwilling doners may not be a good control group for examining the effects of kidney donation on actual doners.
Scott, do you think in retrospect it would have been preferable to just lie about the childhood OCD? Or is this a feasible path for other people with long-ago resolved mental illnesses? Especially if your childhood was before the era of electronic medical records, it seems they wouldn't really know about any past mental illness unless you told them (or unless it was obvious enough that a psych would notice it in the interview, in which case it's not really resolved.)
Counting this as one more piece of evidence for my general rule of being very careful what to tell doctors. They are not on your side. They are on the establishment's side.
Regardless of your reasons for donating a kidney, thank you from a myeloma survivor with kidney failure who does not qualify for a kidney transplant, because I have not had a consistent two-year remission in 8-1/2 years. Thank you for working with UCSF, to whom I donate money for the BioKidney project. If and when the BioKidney becomes widely available, the dialysis industry will be devastated.
- Charity called Anthony Nolan, you just spit in a vial and send it by post
- If you're a match for someone who needs a transplant, then you're contacted
- You then get asked if you are okay with actually going through with it
- You get some injections for a couple of days, then one or two days in hospital with a canula in your wrist taking out your blood, whirling it around to centrifuge out the stem cells, then putting it back
- That's it!
I got invited just over 4 years ago. Mine was slightly more complicated because I have low blood pressure so they ended up fitting a central venous line, which is more invasive than a normal cannula. Also, I freaked out (not a fan of x-rays or needles), and so probably some of the tiredness afterwards was from that. Then I refused to give in to the tiredness and did two gigs the next week, restarted lectures, and did my coursework presentation, which meant it took me a few months to actually recover. Oh also, I got low on Calcium which made me a bit confused.
Like Scott, I meant to do a "this was totally fine" post afterwards, and then ended up just crying at anyone who spoke to me from exhaustion. This is partly because university didn't really do support for being ill, you just had to make up the time. But, if I'd done the op with a job, I'd have just taken a few days of sick leave and it would have been great. So sign up to the register if you want an easier moral high than a kidney (with lower chance of selection) :) - you also get a t-shirt or a mug!
If some rando in New York starts pouring out long and incredibly well-written essays filled with venom toward political correctness, moving website elements, and the New York Times, we're really going to have to reevaluate a lot of things.
So selling your organs is just generally acceptable by the community? I mean, I personally don't have a strong opinion on the matter, but just checking that's what is being proposed.
I've long been meaning to write a post about my own kidney donor screening process; if this article doesn't give me the push, nothing will.
I planned to donate my left kidney to my father, who had ESRD. As you did, I attempted a cost-benefit analysis and ended up concluding the medical risks to me were negligible. Embarrassingly, the biggest quality-of-life factor on my end was the prospect of changing from a no-significant-medical-events person to a one-significant-event person. Once you donate, doctors will expect you to report for checkups once a year and watch your salt consumption, instead of swanning through life without a care as donation-eligible people can otherwise do.
On my dad's end, the analysis was more complicated: I compared the ~5 quality-adjusted years he could expect with dialysis against the ~10 quality-adjusted years he could expect after a transplant. How does going through hemodialysis 2-3x a week compare with having major surgery (riskier for the recipient than the donor) and then taking immunosuppressants for the rest of one's life? Before COVID it would have been a no-brainer. Now... transplants are still preferable but not overwhelmingly so.
For the EA-inclined, there is a financial aspect as well. Dialysis is EXPENSIVE. If you live in a country with socialized healthcare, I expect you can already donate a kidney out of financial self-interest, NOTA or not.
In the end, I flunked out during psychological screening just as you did. The social worker asked me how I was doing and I told her (like an idiot) that being under lockdown made me feel isolated, and seeing my dad suffer from kidney disease made me feel sad. She then recommended to the doctor that I _not_ donate a kidney to my dad until I got a handle on my dad-sadness, lest I make an irrational decision. Let this be another takeaway: HOSPITAL SOCIAL WORKERS EXIST TO TICK BOXES! DO NOT TREAT THEM LIKE HUMAN BEINGS!
I planned to wait a few months and re-apply, but my dad died of a dialysis mishap a few weeks later. Whether I had passed the sanity test or not would have made no difference.
A way less drastic step that everyone can probably take right now is to figure out how to tell the system that you're cool being an organ donor in the event of an untimely death. For Australia, this is super easy - go to myGov > Medicare and there's an organ donation box you can tick. I can't speak for anywhere else.
So calling all Australians: go to the Medicare page and tick the box saying that you consent to being a post mortem organ donor, if you're not quite ready to part with a kidney yet. That way, if you get hit by a bus tomorrow and never get around to it, your kidney will still help (and hilariously I think it's actually significantly lower effort than getting screened for kidney donation while alive)
Hi, I received a kidney from my father in Februaey this year, and i feel terrible for how it left my father feeling. My drs didnt scan him properly and found out on the operating table that he had three arteries connected to his right kidney. . Now we are both sitting below 50 percent wuen previously my healthy father had a function of 85%. Drs told us it wouldnt be a problem. Now they tell us his kidney was probably too old when they could have mentioned that earlier. Im still fighting off rejection and have a dialysis tube in my heart. Peo0le love to say how easy it is to donate and receive transplant, but its really not. It is a big deal.
I donated my kidney, and found the staff at UCHealth to be awesome. If you're in the Colorado area I would recommend going through them. When I went through the intake, they did not require a CT unless some of the other tests gave them a reason, but that may have changed or may be different depending on your surgeon. I am happy to talk with anyone who's interested and has questions. I donated three years ago, and have had exactly 0 issues since my recovery from surgery, which took about a week for the acute stuff and about 2-3 months to get back to my pre-surgery level of activity.
The Dylan Matthews article was also instrumental in my choice, and I 100% agree with the quote:
> As I’m no doubt the first person to notice, being an adult is hard. You are consistently faced with choices — about your career, about your friendships, about your romantic life, about your family — that have deep moral consequences, and even when you try the best you can, you’re going to get a lot of those choices wrong. And you more often than not won’t know if you got them wrong or right. Maybe you should’ve picked another job, where you could do more good. Maybe you should’ve gone to grad school. Maybe you shouldn’t have moved to a new city. So I was selfishly, deeply gratified to have made at least one choice in my life that I know beyond a shadow of a doubt was the right one.
I feel like donating has raised my floor of how good my life is; no matter what else happens, I did a really good thing that I'm proud of.
BTW, at my very first real "job", circa 1994-95, like my first month, I TOTALLY fell for the "urban legend where you have one-night-stand with hot stranger and wake up in bathtub full of ice with kidney missing" chain/scam e-mail. I forwarded it to the entire company as a DIRE warning.
Boy did I feel stupid.
So, seeing it referenced here, fills me with warm and complex shame, and deep affection for my younger self. I feel closer to you all.
Actually, a practical question for Scott, since he got around a loophole. Some time ago I tried to sign up for a bone marrow donor list. (It sounded like an obviously right thing to do, and, besides, people seemed to think I would be a valuable addition to a special list, simply because I declared (truthfully) that my mitochondrial DNA is almost certainly Amerindian - that, of course, is massively non-special in my place of origin.) Unfortunately, my answers to the questionnaire made me non-eligible - since I had had melanoma in situ a few years back, I had to declare that I had had once had cancer. Question - what is right and what is possible to do in this situation?
Possibilities:
- Tell a technical lie by marking "no" on "has had cancer" rather than checking "yes" and scribbling "but it was melanoma in situ more than two decades ago"
- Just try again while being truthful, it's been more than two decades by now (the donor thing happened well over ten years ago)
- I should have just tried to sign up through other channels
I can see how the general rule is completely sensible here, but I hope we can also see why it shouldn't apply here (it's essentially a certainty that the cancer cells never made it out of the mole; the probability of the contrary is microscopic compared to everything that could go wrong with a bone-marrow transplant).
Bonus question: do things like which subgroup the straight maternal line goes back to actually matter for compatibility purposes?
I’d love to know if other women have considered this and have better info on the risk of being one kidney’d for future pregnancies. I know pregnancy taxes your kidneys more than ordinary life, and since I have a history of miscarriage I’ve been reluctant to add any new risks.
(I’m also curious if having one kidney means being risked out by eg a birthing center or a midwifery practice).
I believe that bodily integrity has a value in and of itself, independent of any utilitarian calculation around whether you will need a particular organ. (I don't mean "integrity" in some metaphorical sense. I mean it in the literal sense of keeping the physical phenotype in accord with its basic genotypic design.) Obviously, there will be a thousand and one exceptions in practice. (Fair warning: if you respond by giving me examples of such exceptions, I will be extremely unimpressed.) Every time one gives oneself a paper cut, one is violating bodily integrity in some small way. Of course. But I try not to do that on purpose, except perhaps to treat some greater medical ailment.
If you insist on utilitarianism, I suppose you could justify my position with some kind of rule-utilitarianism as opposed to act-utilitarianism. But I'm not a utilitarian at all.
I'm kinda surprised they prescribed Tylenol instead of Ibuprofen honestly. Anybody know why they did? I had anaesthesia for a cortisone shot to help with postpartum osteitis pubis, so no painkillers really needed, but I can't remember the last time a doctor prescribed me Tylenol when I wasn't pregnant.
Reading about all these studies reminds me of this classic SSC post https://slatestarcodex.com/2017/08/29/my-irb-nightmare/ and the thought I had while reading it - why aren't there places that make medical research more frictionless in order to benefit (somehow) from everyone being incentivized to do their research there? You know, like the Delaware or Switzerland of medical research? Could some similar kind of clustering benefit organ donation as well as the attendant research? I'm sure there's a reason why this doesn't happen, but what is it?
My Goodness! I found this quite moving and overwhelming. Nothing but love for this man.
Even if one thought UCSF's screening criteria were reasonable, they sound badly out of order. If a history of childhood mental illness is potentially disqualifying in their eyes, they need to ask about that history very early in the process and not proceed with CT scans (for most), nuclear kidney scans, or even time-consuming and expensive investigations until they decide if that history is a dealbreaker for them. Asking a candidate donor to incur risk, meaningful expense, and/or serious inconvenience before addressing disqualifiers like this just isn't respectful.
This reinvigorated my desire to donate a kidney, thanks Scott.
I'm very happy for you, and completely unable to evaluate this rationally because a friend of mine died donating her kidney to her dying husband.
If you asked her in the afterlife, she'd probably be OK with the choice, but the incredible guilt that her husband felt afterwards is almost unimaginable.
Once again, I am being irrational and this should not dissuade anyone else; I merely was triggered to share my story.
Congratulations Scott! I became a non-directed donor 14 years ago. I was inspired by a New Yorker article by Larissa MacFarquhar, you may decide whether that's better or worse than Vox.
In addition to the very obvious benefits to the recipient, who is still doing well, I think donating helped me solidify my adult identity. Not in any public way, no one in my current city of residence even knows except my wife and whoever has read my medical file. My experience is that much as the rite of circumcision is meant to bind us Talmud-readers to God, kidney donation binds one to principles of altruism in a way no amount of donated money ever will. Even as I've gotten older and less idealistic, I remind myself that I am a man who once donated a kidney, that I should never let my character stray too far from that of the younger man who was capable of such things. No regrets.
>a ritual called “therapy” could absolve one of this impurity
When I read this section, I had the following thoughts in rapid succession:
- As a psychiatrist yourself, you are qualified to perform therapy. And you do mention that OCD is one of the conditions you treat in your patients.
- So could you do therapy on yourself? It would certainly be simpler and more convenient than going to a non-self therapist. Probably not as effective if you actually had an active problem you needed help with, but it seems more than adequate for an exercise in warding off evil spirits.
- Autotherapy could defensibly be described as "talking to yourself", which put that way is usually considered a sign of not being sane.
- So for mental health professionals who are qualified to perform therapy, does talking to yourself make you more sane, less sane, or have no net effect?
What was the radiation risk from a "nuclear kidney scan"?
The radiation cancer risk argument is just wrong. This is from modelling studies not from prospective or retrospective studies. After 127 years of X-ray use there is not one study in adults that has shown increased risk. The low no-threshold LNT theory makes no sense and even if it were true it should be proven in a longitudinal studies.
Radiologists and others who work with radiation despite protection would have increased risk of cancer because there is always some radiation absorbed. There has been no extra risk reported except in the early days when they did not understand risk of high doses.
I've wished I could do this for years, but thanks to a life-saving, kidney-wrecking medication I'll be on in perpetuity both of my kidneys will be needed by me. I saw the headline "my left kidney," correctly guessed the topic, and immediately started sputtering about my own bad luck. Congratulations Scott, I am happy for you, your donor, and to see this issue publicized in a forum where I'm sure it'll get traction. Happy, and a little jealous.
Of course now I'm sitting here stewing on whether I'm a really a 200-in-a-few-hundred-millioner who would really go through with it or just a 25%-er with a fond intent and a pat excuse. It does feel like the easy, obviously correct choice--a life you can save that will be practically right in front of you--but now I'm very suspicious of this little fantasy and the role it plays in my psyche, with no skin (er, organ) in the game...
(If anyone else is worried they just have a hero complex and their heart isn't entirely in the right place, don't let that deter you from putting your kidney in another one. We all appraise ourselves in creative ways.)
How do they(or can you decide?) choose which kidney they take from you?
My immediate reaction to the apparent mystery of : "25-50% of Americans say they *would* donate a kidney to somebody in need..."
I think those 25-50% are thinking of a scenario somewhere in between
-rushing to pull people out of a sudden immediate fiery car crash right in front of them
- donating or volunteering in a natural disaster
- John Cleese showing up at their door asking, "Could we have your kidney, then? Won't be much trouble for you."
When the choice or opportunity is suddenly presented, and following through is relatively simple, logistically, people and Americans in particular have almost no limits or thought of risk/cost. In the scenario of a crash/wreck I am sure 95% of people would risk their life for a total stranger without a moment's thought.
The barrier to high leverage humanitarian intervention is not courage or selfishness but attention span. Even you, a person who thinks and cares about doing good, who inspires others to likewise try to improve the world, and an MD with major cheat codes for Health Care and Medical melee combat, you were discouraged and almost gave up. Until a Mysterious Mentor suggested a Surprise Approach, One Weird Trick of trying another donation pathway, tvtropes etc.
Leaders can be described as getting people to do good stuff they should do anyway. Personally, I always tell people that when thry ask somebody for a favor, make it *AS EASY AS POSSIBLE* for that person to help you. The path to better more effective Altruism, and government as well, should keep those things in mind.
BRetty
Congratulations!
> And it encourages people to be masochists,
And sadists! Suffering is a sign of virtue, so therefore by making people suffer one can increase the amount of virtue in the world. Just look at all those stories of people who went through adversity and came out better. Who wouldn't want to have moral justification? Any reluctance on their part is simply akrasia. (Or at least, that's what my PTSD says.)
> Would, if what?
Quite possibly, if my life were more together. But thanks for writing all this.
I am duly impressed.
My one friend who did this feels like it was the most significant event in his life. And he has lived a very full life.
I've been torn about the prospect of donating a kidney for over fifteen years. On the one hand, I see it as a really worthy form of altruism, and I recognize that in absolute terms the risks are quite small. On the other hand, I'm quite vulnerable to anxious intrusive thoughts, and the anxiety of having only one kidney, when evolution saw fit to equip me with a spare, feels like the sort of thing which would genuinely weigh on my sense of well-being for the rest of my life.
Do you think you might be open to a literature dive on the pros and cons of donating regenerable organs and tissues, like liver or bone marrow?
I did some sort of thing where I gave my dna via cotton swab to some charity and said email or call me if anyone needs something I’ve got. It seemed legit, but no one has ever contacted me. And I assume my superior Slavic-Irish-Norwegian ancestry would greatly enhance a normal mortal life.
Asking because I suppose this group would know: Is that in fact a real thing? Or did I give my DNA to skynet? I swear I got it from a flier at a hospital.
Scott, have you thought about meeting the person who got your kidney? Of course it might be awkward, meeting a stranger whose life you saved, and you two may be so different that you're each incapable of comprehending the other's take on life. And yet you had a meeting of the minds and kidneys when it comes to saving the person's life. I'd want to shake their hand or hug them and say, "I hope that kidney makes possible all kinds of wonderful things in your life" -- or something like that. Maybe just "enjoy the hell out of that kidney."
There's something about direct giving to strangers that feels utterly different from EA. It's profoundly satisfying, and makes you want to give *more.*. Maybe the way to think of it is as a spiritual practice, one that people practicing EA need to do to stay in touch with the point of helping others?
Anyhow, bless you, Scott. And if it would make you feel any better about the Uber incident, I'd be willing to piss myself in an Uber for you.
So there's a 1 in 10,000 chance of dying during the actual surgery, but there's a 1-2% chance that you'll develop kidney disease later on in your remaining kidney and think "boy, I sure wish I still had that extra kidney right now". BUT, you'll be put at the top of the list for the next kidney. BUT, kidney recipients typically only live an extra 5-7 years anyway. BUT, under these kidney disease circumstances you might not have been okay with a second kidney anyway. Nonetheless, your chances of dying due to kidney donation seem to be higher than 1/10,000 due to the whole lack of redundancy thing, probably very much greater than the 1/660 risk you were concerned about.
the “UCSF lost to waking up in an ice bath” chart is absolute gold. Hadn’t laughed so hard this entire week. Who said this community can’t do humor?
The bit about how you can get five other people get bumped to the top of the list if they ever need it is a REALLY convincing point. I didn't know that: I heard about how you personally get bumped up the list, but that's the bare minimum, not a good deal.
I suppose "Inside you there are two kidneys" is more accurate than having wolves
Re the people who say they would donate a kidney to help a stranger:
I think most people answering the survey question are imagining a case where they're uniquely morally responsible for it in some way, in which case they'd do it.
Going by your numbers, the actual number of undirected kidney donations required to plug the gap is about 0.01% of people per year. So IRL people are probably morally responsible for about 0.01% of a kidney donation per year (probably more in practice because some people can't or wouldn't donate, let's say 0.04% for safety), and going beyond that is superegatory.
I'm on the list of people who'd answer "no" on the kidney donation question (I do feel bad about it). But I would sign up for the service that picks 0.04% of people who sign up at random each year to donate, if it solved the kidney shortage. I wonder how universal this is.
(This does raise the question of why I don't just make my own service by throwing a random number generator from 1 to 10,000 and donating if I get under 4. I did do this before posting and got 5,143, so that's my new excuse for not donating. But I don't know if j would have gone through with it if I actually had gotten a number under 4, so I don't feel great about it).
How old is too old to do this? (As in, at what age will they refuse to take your kidney?)
Was there really a need to tell the whole world about the good deed you have done? Performing good deeds for social affirmation is generally considered to detract from the goodness of the deeds. Yes, I do understand that your intent is to encourage more performance of such deeds. But conventionally, performing good deeds for external rewards like social approval or money is considered suspicious, for some poor reasons (like the masochism you mention) but also the tendency toward self-deception and institutional corruption by those rewards.
This directly ties into the castle thing. Perhaps it's true that the castle actually would encourage more good deeds be done. However, it's also true that if you start talking yourself into buying comfy castles that actually do good, it becomes easier to talk or trick yourself into comfy things that don't do good, and you start to attract people into your organisation who will talk you into buying comfy things because they are solely into comfy and not good deeds at all. We can try to be less wrong here, but can we be sufficiently less wrong that this risk is worth running?
My wife is in kidney failure and is on dialysis. We have the same blood type, and when she becomes eligible for a transplant (she currently has other conditions that make her ineligible in the United States), I intend to offer one of mine, assuming I'm qualified to donate.
I'm happy for you! My apologies for complaining about the lack of posts just yesterday.
As a PhD student, I used to grow kidney organoids - small clumps of kidney tissue derived from embryonic kidney progenitor cells (or Yamanaka-factors induced stem cells). They were amorphous in shape and couldn't grow past a very small size limit: there were no blood vessels inside, and the center of the organoid would begin to necrotize from lack of oxygen. Growing a full-sized kidney in a lab would require a much better understanding of vascularization during embryogenesis.
A cool workaround I once saw in a Finnish lab was to literally 3D-print a microchannel tree, and populate it with thousands of mini-organoids. I haven't been following the field since, so if anyone is aware how close we are to a 3D-printed kidney, let me know.
Also, whenever I told my casual dates what I'm working on, they used to ask "Are you going to steal my kidney?". I would have to explain that I'm literally the least likely person to steal kidneys, since I can just grow them in the lab.
My only connection to this issue is that I have a friend who attempted to donate a kidney to a stranger through UCSF, and I think ultimately also got rejected or else long-term deferred, for a reason that seemed to also be like "we reject everyone who has an issue that falls into this bucket" rather than "it's plausible that you would actually be endangered if you donated your kidney".
This makes me wonder if UCSF is like super-paranoid about approving kidney donors.
Another thing that could fall under point #7: I think the kidney donation charities or maybe insurance companies are also willing to pay some expenses of a friend or family member to support you in connection with the kidney donation. So you might be able to, for example, take a significant other with you at no charge to you, even if you had to travel for the surgery.
"Open Phil gave most of the funding for the purchase of Wytham Abbey (a small part of the costs were also committed by Owen and his wife, as a signal of “skin in the game”)." https://forum.effectivealtruism.org/posts/xof7iFB3uh8Kc53bG/why-did-cea-buy-wytham-abbey?commentId=3cLRAk98q8jMwhrEc
I was really hoping you hadn't been posting because your wife had had a baby.
Oh well.
You're a better man than I. God bless you.
> $10,000 per year for 10 years
Ah, I see, this is a "trick desperate or low-intelligence people into serving the greater good" sort of deal. That's the only way to describe someone who would actually act upon a promise by the government not to screw them over using the tax code for the next 11 years.
We find it acceptable to financially compensate women for egg donation. Not sure why tax credits for kidney donation should be controversial. I believe Iran offers direct payments for kidney donation which carries a higher risk of undue inducement.
Have you found scientific studies which show that the phenomenon of being reduced to only one kidney continues 30+ years after donation?
FWIW the linear no-threshold model of cancer risk from radiation is strongly countered by parts of the world which have much higher background radiation, on the order of the 30 millisieverts you avoided but every single year, and they don't appear to have elevated cancer risk. Similar with airline pilots.
> In polls, 25 - 50% of Americans say they would donate a kidney to a stranger in need.
> This sentence fascinates me because of the hanging “would”. Would, if what?
The answer is a mix of "if they were introduced, perhaps in a superficial 21-minutes-plus-commercial-breaks documentary fashion, to a particular stranger, who was sympathetic and in need of a kidney" and "if it was 'call 1-800-KIDNEYS and book an appointment sometime in the next month, have the surgery and spend a day or two in the hospital recovering' instead of... well, the entire ordeal you describe, minus UCSF's psychiatric proclivities.
It's also a pretty upper-middle-class sort of thing to do, and I think a fair amount of the people answering "yeah, I'd donate a kidney" never have to really seriously consider the question, because if you're not in a position to take a bunch of time off work and life to go fuck around with hospitals and Zoom conferences and piss jugs and then, on top of all that time, take a solid uninterrupted block of time off work and life to go have the thing yanked out and recover then it's really not something you can ever seriously really consider. Not at all trying to sound "check ur privilege, white kidney-donating male" or scoldy. I just mean it in the sense that it's similarly easy for the fox to say he'd easily resist the temptation of the grapes even if they weren't hanging ten feet overhead.
I worry that the Coalition To Modify NOTA is composed to people who are too nice to think of this, so this suggestion might do good: include a provision that the tax credit will not be INCREASED for, say, twenty years. (I don't know if the government is capable of making such long-term commitments though.)
I was wondering if you've considered getting on the bone marrow donor registry, and if you could write about that at some point in the future? Two years ago at the age of 26 I was diagnosed with acute lymphoblastic leukemia. It's the most common childhood cancer, and one that is highly curable in children, but has a mortality rate that increases sharply with age - my prognosis at the outset was about a 60% chance of surviving five years.
For me, and people like me, our best chances at a cure depends on a bone marrow transplant. Leukemia is a cancer of the bone marrow, so the surest thing to do is use chemo and radiation to obliterate all of your bone marrow, and then replace it with a stranger's who doesn't have cancer. But since your bone marrow makes all of your blood, including your immune cells, putting any average Joe's marrow in there would just cause your new blood to viciously reject your entire body, basically. So a recipient and a donor have to be closely matched on a variety of different factors to reduce the chances of this happening. This makes getting as many people on the registry as possible extremely important, and this also means that when someone is contacted about being a donor, you are often the only donor available for the recipient.
Unfortunately, I did not have a match on the registry, so my treatment consisted of chemo only, without transplant. I am in remission but my chances of relapse are a coin toss. Relapsed leukemia is harder to treat, and it would increase my odds for survival if I had an eligible donor were I to have to return to treatment. It would mean a lot to me if you would consider signing up for the registry (it's pretty easy) and writing about the experience. Thank you!
Edit to add a couple of things after the fact: I'd also like to say that unlike many with organ transplants, bone marrow transplant recipients don't have an expected expiration date following transplant. As long as the transplant is successful, and the cancer doesn't come back despite it, a BMT recipient can expect to live for most of their natural lifespan they would have experienced if they hadn't developed cancer, minus the added risk of future cancers that come with the chemo and radiation necessary to prepare you for it.
And, lastly, most people on the registry won't ever be asked to be a donor, but if you are, being a donor doesn't come at much cost or risk: there are lots of screening tests to ensure compatibility (no CTs I think), but it's not as intensive as what you went through for kidney donation. The actual donation process beyond screening consists of the hospital just giving you some drugs that stimulate your body to make extra stem cells, which can make you feel gross for a few days, and then using a machine to run your blood through a filter that collects those stem cells before placing the rest of your blood back in your body. It takes a couple of hours and I've heard it's a pretty cool experience! Plus, if you and your recipient both consent, the registry will connect both of you two years on so that you can meet each other.
Despite having never experienced a catheter I was already a bit afraid of them. This didn't help.
> It starts with wanting, just once, do a good thing that will make people like you more instead of less.
Then consider this my contribution to the world: I think this behavior is about as admirable as men castrating themselves for religious reasons, or Xhosa killing their cattle for religious reasons.
A cult that talks you into handing over your money is vilified; why is a cult that talks you into handing over irreplaceable pieces of yourself 𝘣𝘦𝘵𝘵𝘦𝘳 than that?
> I asked them if there was anything I could do. They said maybe I could go to therapy for six months, then apply again.
On the other hand, I find this to be even weirder than the post presents it as being. This remediation makes sense if the concern is that your OCD of 20 years ago might be prompting you to make an unsound decision to donate a kidney today. If the concern is that there's something wrong with your kidney, therapy is pretty well guaranteed not to address that.
No arguments, no discussion, just: Im reading you for about twenty years now, and you never stop to amaze me. Blessed be you.
Just want to say how it never fails to surprise me to encounter people in their 30’s who never have experienced anesthesia.
Three things:
1. How do you know it was zoom doing it? Maybe they were spontaneously donating body parts and replacing them with UCSF insignia.
2. The Pros and Cons chart is flawed. It weights each factor equally. I, for one, definitely value some more than others. Cornell may not be on top after all.
3. "previous living kidney donors" sounds more Halloweeny than was probably intended.
Beyond that, congratulations!
lol'd:
"I make fun of Vox journalists a lot, but I want to give them credit where credit is due: they contain valuable organs, which can be harvested and given to others."
"I practiced rehearsing the words “I have never donated to charity, and if I did, I certainly wouldn’t care whether it was effective or not”."
"When I woke up in the recovery room after surgery, I felt great. Amazing. Content, peaceful, proud of myself. Mostly this was because I was on enough opioids to supply a San Francisco homeless encampment for a month."
"I had an unusually hard time with the catheter - the nurse taking it out frowned and said the team that put it in had “gone too deep”, as if my urinary tract was the f@#king Mines of Moria"
I'm glad you didn't donate your sense of humor.
I started typing a comment but I realized it would be so long I might as well work on a "Contra" style article for "Why you should not donate a kidney".
If you are a person that's seriously considering donating a kidney please consider contacting me at george @ cerebralab . com -- so that I may try to dissuade you.
I think this would help me write a better article by having a motivated adversary with skin in the game.
P.S. In case Scott is reading this I'm obviously *not* claiming that donating a kidney isn't an altruistic act. I think that you are a fantastic person as always for doing this, I am just against encouraging people to do it because the uncertainty around outcomes seems immense and potentially bleak. Which still means that on-average you saved QALYs and contributed to social cohesion making you an all-around good person for doing this.
P.P.S Hopefully no new rules around posting emails in comments, if one exists and I'm breaking it, I'm sorry
How transferable is the 'kidney credit'? My wife is at elevated risk of someday needing a kidney, so I always figured I should keep my spare in case she needs it. I would be very upset if I gave it to somebody else now, and then 20 years later found myself unable to leverage my past donation to bump her to the top of the current recipient list.
The only thing that bothers me about this is the opioids bit. When my father had issues with a kidney stone, they gave him morphine, and he was in utter amazement of how effective they were, and came out of the experience saying "I can understand how people get addicted to this stuff." I've heard about how people getting their start on opioids because they're prescribed them following surgery.
When I had a tooth extracted(which incidentally also included that kind of lying-in-chair->timeskip->staggering down sidewalk anesthesia experience), I specifically avoided taking the heavy duty pain killers they prescribed me because I didn't want to roll the dice on going down the path of drug dependency.
It's all well and good that it's a relatively safe surgery, but I'm wary of any unnecessary exposure to opioids and would need to know the risks there.
I don't think I would donate my own kidney, due to various emotional reasons none of which are all that thoroughly-considered... but I would gladly vote in favor of the tax credit. That seems like a rare free lunch in national economics. I hope it gets traction.
Speaking of traction, glad to hear you're on the mend, and great write-up.
Typo: "They found 34 cases extra cases"
Soo, do journalists finally get to claim that AE is a cult that steals people's organs?
ALT
Simpsons did it first (S10E8).
On a less facetious note, I find the data on the safety of kidney donation incredibly unconvincing. Vast majority of donors are elderly and have shared the lifestyle of the recipient for decades (stereotypical old couple situation), so tons of confounders and no good data for young people donating. To handwave a safety signal as genetic confounding is incredibly disingenuous when you have no good data to suggest this link, i.e. can't pinpoint the gene responsible.
In general, I find myself wishing sometimes transplant medicine would just, dunno, go away. The results I see in my daily practice are always crap (I am the person who gets to stare at the nice little pictures you had taken all day long). It's far from the miracle everybody thinks it to be, and certain subpopulations might actually be worse of getting an organ than without it. There are practically no randomised trials on transplantation, and the devil kidney in me tells me it's because transplant docs know well enough that it would fail when actually trialled in today's population.
The ethics is fraught with foregone conclusions and false causality (people don't die from a lack of donor organs - they die from their illnesses - yet this language is routinely used by patients and their families: I was recently told by an acquaintance her grandfather had "died because no organ was available" - no seriously eff this gramps died of his alcoholism and two packs a day you delusional excuse for a granddaughter - he was my neighbour). If we are to believe all democracy becomes gerontocracy in the end, I get the heebie-jeebies when thinking about what a government seriously committed to placating the elderly would mandate in that respect.
I hope for your sake this turns out fine, lotsa people with only a single kidney end up as old geezers, but I can't help to think the "advertise kidney donation like blood donation to everyone" moment is a greivous error in the long run and this will fall medicine on its feet colossaly in the years to come. In the short term, this article has demonstrated to me that this blog now espouses values so far from me and mine own that it's probably time to stop reading it.
I just wish to say that I am unironically very inspired by "Everything else I try to do, there’s a little voice inside of me which says “Maybe the haters are right, maybe you’re stupid, maybe you’re just doing the easy things. Maybe you’re no good after all, maybe you’ll never be able to figure any of this out. Maybe you should just give up.”"
If fucking *Scott Alexander*, possibly the smartest guy I know of, who is constantly genuinely trying to get to the truth and do the right thing, feels that way, well, fuck it. This is just dumb. I thought maybe I felt that way because…well, because they were right. But there's *no way* that *you* should feel that way all the time, so why should I? Fuck that.
Thank you, genuinely, for being you and allowing us to see who you are.
This is a banger and your writing style is great. "My IRB Nightmare" righteous-anger vibes.
Also, typo: "I decided not to submit then)" should be "submit them)"
Holy nephrectomy, this is inspiring. How inspiring? Let's predict! https://manifold.markets/dreev/how-many-people-will-follow-scott-a
> This request didn’t get communicated to the surgeon and he told me anyway - but luckily everything did go well.
Perhaps the surgeon actually did receive the request, and violated it only because the recipient lived.
***
In countries where it is harder to sue hospitals than it is in the US, are decisions like UCSF's re: OCD less common?
***
Do any kidney-transplanting hospitals publish their full list of medical conditions which rule out a potential donor, either due to risk to the donor from the surgery, or risk to the recipient from a potentially subpar kidney? I would appreciate seeing one.
Brachos is a 🔥 mesechta
The Linear No-Threshold Hypothesis of radiation says that every milliSievert increases your cancer risk. It does not. Humans cope and even seem to thrive with a background level of radiation. Prof Richard A. Muller (the Physics for Future Presidents guy) has thoroughly debunked LNT. That the NIH supports it is further evidence that it is nonsense.
What characterizes the countries with the highest per capita rates of living-donor kidney donation?
(Should those rates be adjusted for average age? For the probability that a potential donation will find a recipient? For anything else?)
The probability calculation of 1/660 doesn't seem at all correct to me. Every Sievert, you say, raises your risk of dying of cancer by 5%. But that's raising it from *whatever the current rate is*, which is... okay, a quick google says that cancer mortality in men is something like 200/100,000. So 30 milliSieverts would raise your risk by a total of 200/100,000 * 1/660, which is more like 1/330,000. (Or, I guess, raises your cancer risk by 1/110,000).
Inside of you there is one kidney
> You don’t need to worry about not having a kidney when a friend or family member needs one. When you donate, you can give the organ bank the names of up to five friends or family members who you’re worried might end up in this situation. In exchange for your donation, they will make sure those people get to the top of the list if they ever need a transplant themselves.
This was certainly news to me, and makes me feel better about the whole thing, but doesn't the fact remain that your own kidney is much likelier to be a better match for a family member than some other kidney off the list?
Great post Scott! Lots of love!
I found this post somewhere in my newsletter, and i was surprised that anyone would give precious part of the body to a stranger.
I have kidney disease (they dont work anymore to be honest), located in Europe - and here i never heard about 'random' donors.
Moreover, i personally never asked (and probably will not ask in the future) my friends or family for organ donor. Im overwhelmed about idea asking anyone for something that big and important.
Congrats, you make 30+yrs old man to cry like a baby :)
I really wish you everything best and i admire what you did.
If this estimate of increased risk assumes the linear no-threshold theory (LNT) -- and a quick look at the cited paper suggests it does -- it's nonsense. Read Jack Devanney's substack on nuclear power, where you will find demolitions of the LNT theory.
My usual admiration for Scott. Even higher than usual if possible. Glad he is alive, was considering open a manifold market: Is Scott in hospital? - Had hoped for an even better reason to be there. And feared for worse - The beginning freaked me out: "As I left the Uber, I saw with horror ..." One of my few wishes left is: May I die before Scott does.
Cheers for NOTA! To keep up the pressure, I shall keep my organs for now. (From an MRI I assume the one kidney is not fine enough to donate, and the fine one I intend to keep.)
Excellent post.
I wonder whether a policy to give a tax deduction rather than tax credits for kidney donation could receive less political opposition. Because it seems the main concern opponents of compensation for kidney donation have is that poor people will donate kidneys for financial reasons in a way that seems morally icky. Whereas with a deduction, due to the existence of the standard deduction, the financial incentives would become active at some level of income while not influencing the behavior of people poorer than that, right? Does anybody more familiar with US taxation and organ donation policy know if there's some number at which such a deduction could be set to alleviate the US kidney shortage while not influencing the behavior of the poorest, say, 1/3 of Americans toward kidney donation?
“It is a far, far better thing that I do, than I have ever done; it is a far, far better rest that I go to than I have ever known.” --Kidney Carton
I happen to live very near the "castle" and aside from a one week event for college students when they first bought it, it seems like they haven't actually run any conferences there yet over the last two years, but have continued to rent other venues for retreats and so forth since.
Old buildings can be money holes. I suspect, though don't know, that there are either transportation issues (there's a year+ long road closure on one of the main routes there) or maintenance issues that have prevented it from being used for any conferences as of yet. It's kind of a red flag to me that Oxford University owned it but then sold it as they didn't think it was financially feasible to hold on to. Though to be honest I'm glad it's back in university-associated hands rather than as a private building, as the university owns the rest of the adjacent land. It's a lovely area.
Kudos to you. Though I am suspicious your evil voice will learn to adapt to the new circumstances, perhaps encroaching on your good voice's turf in the right kidney, or, if the "left" part is important, perhaps claim your left lung?
I looked pretty throughly into kidney donation and even signed up for the first level screening but I ended up chickening out. However, I heard at one point that a screening question that’s commonly asked during the kidney donation process is “do you donate blood?” and I realized it was silly that don’t, given that I was likely eligible and that it’s a much lower risk but also life saving intervention. So I started donating blood and I encourage anyone who’s not quite comfortable with donating a kidney to try donating blood or platelets! The FDA has recently changed screening guidelines so that some previously deferred groups in the US (including gay men who haven’t had a new partner recently and people who have lived in the UK) are now eligible to donate.
Small note: the article you cite from Tom Ash was actually written by Josh Morrison and Thomas Kelly, according to the preface of the post.
Thanks for writing this. I donated as well, and found the experience to be a weirdly effective self-signal. I try to do various altruistic things, from donating money to choosing high-impact jobs, but good signals are costly, and these just aren’t all that costly for me.
That’s probably a bit counter intuitive - what could be most costly than my literal time and resources? That’s all I have! Here’s my thinking: after donations, I still live a life of extreme wealth and comfort compared to the average human, so the opportunity costs of donation are kinda trivial (like, maybe if I didn’t donate, I would buy the new VR headset that just came out, but I don’t suffer greatly because I haven’t done so). As for my job choices, these have coincidentally (suspiciously I might add, in my moments of doubt) been things I find challenging and interesting and rewarding in and of themselves. On top of that, there’s the point you mention that lots of my preferred ways to do good aren’t actually seen as good at all by plenty of critics (and, like, many everyday people too). I’m somewhat prone to imposter syndrome, and it’s easy for me to doubt my own motivations and impact on the world.
Donating a kidney was not only a costly signal of my values (the right balance of costly - annoying but still worth doing), but it also carried a lot of metaphorical resonance for me, since I have a typical secular worldview in which I am nothing over and above my body. Now, when I look at my body in the mirror, I’ll always notice and be reminded that it has a couple faint scars from the time I literally changed it - changed myself - to try to help someone else in a small way. It serves as a reminder that I can do annoying things because I value them, and I can literally change who I am in the process.
This reinforces my identity as someone who wants to do good things for the world, and serves as a healthy reassurance when self-doubt creeps in. So, for strictly non-altruistic reasons related to my general self-image and the narratives I want to tell about my life, I rate kidney donation pretty highly. All the altruism stuff is a great bonus on top of that 😉
"Also from my spicy [version of the "Effective Altruism As A Tower Of Assumptions"] essay:
Q: All possible forms of assistance, financial and otherwise, just make recipients worse off, for extremely complicated reasons. There are literally no exceptions to this. I promise I’m not just looking for an excuse not to do charity, I would love to do charity, it’s just that literally every form of charity is counterproductive. Weird, isn’t it?
A: Even kidney donation?"
Now that's what I call putting your kidney where your mouth is! (don't eat your kidney)
What kind of a technological advance do we need to just start printing out artificial kidneys for anyone who needs one?
Castles need TLC as well, such as repointing stonework as needed, and weeding small trees and other foliage growing near or on walls, or even retiling roofs assuming the place isn't a complete roofless wreck. So the group who bought the castle also deserve some credit for maintaining it, assuming they do so adequately, for the benefit of future generations.
The "In polls" link seems to be wrong or broken?
> Self-modifying into a person who can act boldly without social permission is a more general solution and has many other advantages. But the long version involves living a full life of accumulating moral wisdom, and the short version starts with removing guardrails that are there for good reasons.
I was vaguely uncomfortable reading part IV - the one about the castles and the fuzzies and the utilons - and I guess this footnote made it clearer why.
Ten years ago, you wrote that "in all situations, the government of Raikoth will take the normatively correct action." In those ten years of life, having accumulated the moral wisdom that you did, would you say you've gotten closer to embodying these words - not in the sense of *knowing* the correct action, not even in the sense of *actually doing* it, but in the *knowing that you know* sense?
My impression is that 2023!Scott is, if anything, more reticent about this stuff than ever. This is a problem when Guardian opinion columnists are constantly whispering dread outside-view incantations in his ear, demanding that he give up his left kidney, and generally holding his sense of satisfaction hostage. That seems even worse than the state of nature, which is getting fuzzies from Meaningful Human Connections™. Those, at least, are fake in an obvious way.
(not that I'm saying it was wrong to donate the kidney; just that this post is pretty depressing, like watching someone fill out taxes, except it's not even a morality tax like the GWWC pledge, it's a tax on *having a morality*.)
(also, there's two part IVs.)
Why hasn’t someone already solved the LDNT debate once and for all with a large RCT on rats? IRBs won’t let them?
Hi. CT scans have been around now since the 80s as well.
The whole brouhaha started with Brenner's paper in the AJR in 2001, which was modeled on radiation from Hiroshima and Nagasaki, which itself is not a fair modeling example, because the radiation profile is different and you can't just extapolate the risk from 1000mSv to 1 mSv (CT scan would be between 1-10 mSv). Until then, no one talked about diagnostic imaging and radiation risk.
So the burden of proof lies on those who say that radiation from diagnostic imaging (< 50mSv one time dose) increases risk of cancer, not the other way around. There is no data showing this in adults. Those who believe in the hypothesis have moved to children, where if at all (and no one has accounted for reverse causation), for every 10,000 CT scans of the brain, there is one increased brain cancer risk, that's it.
Modeling is just that, modeling. All of the references below say "There is no evidence that low-level radiation from medical imaging causes harm and below 50-100 mSv of exposure, the risks are too small to be observed or non-existent".
1. Amis Stephen. Radiology 2011: 261: 5
2. Position Statement of the Health Physics Society, Jan 2020
3. American Association of Physicists in Medicine – position statement Oct 2018 - https://www.aapm.org/org/policies/details.asp?type=PP&id=439
4. Hendee William R. Radiology 2012: 264: 312
Unlike with so many other medical interventions, where our follow-up data is in the range of a few years (statins is now 35 years), with X-rays we have good solid long term data. Remember that from the 20s till almost the 90s, patients were also exposed to barium studies, IVU studies, where the radiation was in the same range sometimes as CT scans. Some observational study from the NHS or from the Scandinavian countries that track all their patients would have shown some causation. But there is nothing.
Casually bringing up your disdain for journalists in the absence of an occasion to criticize them creates more heat than light and annoys my NYT-reading fiancée
This still gets my hackles up. Let me fumblingly try to articulate and explore why I feel this way, in a way that hopefully sounds valid.
-----
Let's imagine for a second that this was written by someone other than Scott, someone who I haven't spent years reading, and whose thoughts I don't understand as well.
The text of this article is "I donated my kidney". The message, partly stated but mostly implied, is "You should do so too." (With caveats of "I'm not telling you to do this, just giving you social permission to do it if you were already inclined.")
Most people trying to get you to do something this drastic and unusual don't have your best interests at heart. They stand to benefit in some way or another. That in and of itself is a pretty big barrier to convincing people.
How can someone benefit from kidney donation to a random stranger? They don't have to benefit directly. If they have a value system that thinks your actions improve (their conception of) the world, they'll usually try to argue you into it anyway.
Does this actually improve the world? Probably, at least to some extent. Does that extent justify the health risks?
Scott's a doctor, I'm not. With my limited knowledge, my heuristics are, generally speaking, "Keep things related to body, health, and diet as close to natural as possible, doing medical interventions only when necessary, or where the problems are accumulating enough to justify it." I assume that the redundancy in my kidneys is there for a good reason and am inclined to keep it.
This has had some benefits to me: I have a friend who, during a rough time of his life, went deep down a psychiatry rabbit hole, culminating in a breakdown that left him dependent on benzos and unable to work. While we were talking about his issues, I told him my heuristic, and he admitted that it was probably a good one. That's not a knock on the people that need medications—some people really do need it—but the point is even for something like medication, I usually have to convince myself to use it, and err on the side of avoiding it.
So you say the risks are small. Given that I'm this risk-averse, is your definition of "small" the same as mine? Probably not. The weird testicle thing alone would probably be enough to put me off. I have no idea what could cause that, how hard it is to treat, or what kind of long-term damage it could do.
And that's even assuming you're telling the truth. Since you already have a motivation to argue the side that convinces me to do this—look how many QALYs you can bring to the world by convincing me!—you might have a motivation to lie. Or if not lie, then at least do the subtle not-lies that might convince me anyway, like tell a one-sided story; cherry-pick bad evidence; or ignore, neglect to mention, or handwave away some of the risks.
These concerns aren't totally theoretical. Elizabeth of Aceso Under Glass has recently started fighting EA vegan advocates for engaging in exactly these kinds of tactics: https://acesounderglass.com/2023/09/28/ea-vegan-advocacy-is-not-truthseeking-and-its-everyones-problem/
https://acesounderglass.com/2023/05/30/change-my-mind-veganism-entails-trade-offs-and-health-is-one-of-the-axes/
Then I start wondering: hang on, how far will this guy take this?
"You should do this" seems to imply a moral norm: you're a good person if you do this, you're a bad person if you're not. Is he on the onramp to a moral crusade? We've seen a lot of those in politics lately. He's got all those caveats to his message, but does he mean them? If he does mean them, then for how long? Will he still be as forgiving when kidney donation is commonplace or even expected among his friends or ingroup?
Is he trying to make him and his friends look good, to have him and his friends accepted as the morally virtuous subculture, at my expense?
With that gut reaction firmly in place, I start probing my moral philosophies, against both the weaker explicit message and the stronger potential one. I start thinking of bodily autonomy, and abortion: does this line of thinking imply that it's morally correct for women to bring their babies to term at the expense of their own (similarly likely minor-to-moderate) health risks? If good people are morally obligated to give their own kidney, how much else of their life and literal bodies are they morally obligated to give as well? How much marginal risk or pain is one person supposed to take for a marginal improvement of someone else's life?
And then I come into the comments and argue.
-----
Okay, taking a step back: this isn't quite how I reacted to this article.
The big reason for that is because, like I said in the beginning, I've been reading Scott for years. I know, to some degree, how he thinks about medicine. I've read some of his writing on moral obligations, which makes me think he's being honest about mostly just sharing his story and giving people who were already on the fence social permission to go ahead and do it.
https://slatestarcodex.com/2014/12/19/nobody-is-perfect-everything-is-commensurable/
Because of that, my actual reaction to this article is that it shifted my opinion very slightly, enough to maybe freak out a bit less in the unlikely case that a friend of mine decides to randomly donate a kidney.
I would probably still freak out a little bit, and this article is very far from enough to convince me to do it myself. My heuristics are too strong, and my self-awareness in my lack of knowledge too great. Figuring out whether I even want to do this is not a way I want to spend my time, energy, or health, so I default to "no".
-----
So why am I rambling about this here? Because I expect that this kind of thought process happens in a lot of people that have a negative gut reaction to EA. I expect it happens almost instantly, and likely subconsciously.
A lot of EA writing is a Rorschach Test.
The gut reaction you have to something like this depends a lot on your past experiences, how much you trust the author, your exposure to Effective Altruism, and how often you've had people try to pull one over on you at your expense. These all feed into your personality, heuristics, and priors. That's why you get reactions ranging from "Nope, you're a crazy liar" to "Interesting, tell me more".
IMO, the only way to reach the defensive ones is to advocate for more common-sense, lower-risk actions whose benefits are more easily explained and apply across different moral systems. I've written about this here:
https://www.kronopath.com/blog/how-load-bearing-is-your-ideology/
Though I understand that's probably not who you wrote this article for.
-----
Anyway I'm glad it went well for you and I'm sure whoever got it from you was immensely grateful.
(And sorry for taking a soapbox to this personal story. It just got the gears turning.)
Despite my ramble above, I can't help but think of another blogger I loved to read, Shamus Young, who was diagnosed with end stage kidney failure in 2022 and died three months later. Actions like yours could have made a difference in his case.
https://www.shamusyoung.com/
https://www.shamusyoung.com/twentysidedtale/?p=54058
https://www.shamusyoung.com/twentysidedtale/?p=54513
Here's to your continued health.
I applaud your donation, but as for making one myself I have a deep sense of DO NOT WANT.
Welcome back !
Seeing you gone for so long had me turning into a conspiracy theorist.
I'm just glad this wasn't a case of "OpenAI had invented AGI, and brought Scott in for 1 month long NDA access."
> as low as an 0.5 - 1% ...
Not sure which way the utilitarian calculation goes. The additional ACX time, either now or 25 hence, is probably still fairly valuable, e.g., David Friedman is still cranking out interesting stuff while old. But not sure how to quickly compare intellectual output to additional QALYs now.
Huh, and here I wasn't sure if I was just imagining "haven't seemed to get many SSC emails lately, what's up with that?" Worth the wait - always really enjoy posts about your own life. Skin in the game and all that, now you've Got The Receipts in a very concrete way. Someday if we get excellent generative AI for shows, it'd be cool to dramatize this essay as The Alexander Kidney. Or I'll try to recast you as the hero in Angel Beats!
...which segues into, I can't really imagine spontaneously donating a kidney to a __complete__ stranger? Maybe a family member, probably a friend, definitely a SO, some sort of handwavey Inner Ring calculus involved. Bad experiences with involuntary donations make me react really poorly to bodily-autonomy-integrity violations, no matter the utils involved. (And that was just for hair!) OTOH, being on the standard organ-donor registry that everyone signs up for with their driver's license - yes, of course, it's not like I'll be around to miss them at that point. I think I read somewhere on your old blog that such organ donations went down as cars got safer, actually, and It's A Problem...?
Description of the actual process and surgery...retroactively reassures me I made a correct decision to cancel [other elective surgery], even if in theory there's financial reimbursement available. I do think there's definitely some above-replacement Happy Price which would change my mind - $100k is several years of wages for me, that's Not Nothing, money is fungible - but other illegible costs like time and logistical hassle can't be "repaid". Wonder if there's any potential in streamlining the approval process - does it actually need to be several months? (I also don't understand why homeopathic levels of mental illness would be disqualifying, unless it was of a variety particularly prone to driving rash decisions?)
Scott, as a kidney donor
A: Welcome to the club!
B: Thank you so much for writing this. This piece is going to reach a ton of people, make waves, cause a bunch of new donations, and probably save far more people's lives than your actual donation did.
I've chatted with Dylan Matthews about this, but there's an *extra* massive reason for public influencers to donate their kidneys. Dylan has probably, no joke, caused hundreds or thousands of extra donations via his articles and advocacy. The actual impact of his specific kidney is a rounding error to the attention he's drawn. I suspect that with your platform, the impact your donation will make is at least 100x the typical donation.
So thank you for donating, and thanks for being vocal about it. And thanks for supporting the Modify NOTA campaign!
If anyone is interested, I wrote about my decision to donate here: https://www.infinitescroll.us/p/infinite-scroll-special-edition-kidney. I'm happy to answer any questions anyone may have.
First off: congratulations Scott! A tremendous thing to do, and I admire your speaking openly about it and encouraging others to do the same.
The CT scan/risk of cancer struck me as unbelievable! I do try to avoid CT scans on patients younger than 40, but I always put the risk as closer to 0.05% - 0.1% per scan rather than nearly 0.5% as your girlfriend calculated. I did a deep dive into this once for pregnant women and I remember the 5% per Sievert thing coming up there (risk to the fetus of childhood cancers, if Mum gets a CT.) Are we definitely sure this is for adults? I did a quick Google just now and clicked on the usual suspects - Scientific American says "a single CT scan increases the average patient's risk of developing a fatal tumor from 20 to 20.05 percent." WebMD: "the chance of getting a fatal cancer from any one CT scan is about 1 in 2,000." Memorial Sloan Kettering: "0.05 percent, or less than one in 2,000 — of possibly developing a future cancer."
Obviously I would love to see a deep dive into this topic!
1. Kudos on the Vox journalist line, made me genuinely giggle uncontrollably at work.
2. Kind of strange, I've been involved with EA for awhile, donated a lot of my (meager) income to charity, and, given the opportunity, would happily take some risks for altruistic purposes. But I still haven't got past kidney donation to a stranger sounding absolutely ridiculous. You can do something just bloody horrible, slightly dangerous (possibly including a bunch of risks you're not taking into account), not at all fun/ exciting, with lower altruistic cost-effectiveness than working and donating to an effective charity... If the effectiveness calculations looked incredible, I would be at least persuaded that it's a morally good idea, but as it is, it feels more like the kind of socially contagious masochism that EA should be trying to avoid.
3. When I was travelling in Northeast China near the Korea border, I spoke to a cleaner in a cheap hotel. He asked me: "Where are you from?" "The UK", "Ah, can you sell kidneys in the UK?", "No, there might be a black market, but it's illegal", "Ah". Then the conversation ended.
Well, first of all, congratulations! There's kidney disease in my family, and yes my cousin died several years down the line after a transplant, so it doesn't mean you can live your normal lifespan. But without it you'd probably be dead, so better a few more years of life than nothing, right?
"They found 34 extra cases of ESRD (end-stage renal disease, the most severe form of kidney disease) per 10,000 donors who were related to their recipients, compared to 15 cases per 10,000 for donors who weren’t (the difference wasn’t statistically significant, but I think it’s still correct for unrelated donors to use the unrelated donor number)."
I imagine if you're donating to a relative, that means there's already a higher risk of kidney disease in the family, so the risk would be increased. As for the risk for donors overall, that may well be because if you have two working kidneys, and then down the line one of them conks out, the other can pick up the slack. But if you only have one working kidney and it starts to fail, then you develop the problems faster and worse.
But it truly was a charitable deed so well done!
I'll only take this one little pop at the Brits, so the castle was the cheapest option? Perhaps, but did they factor in (1) the bad visuals this would produce, so hampering their efficacy because this will turn off the public from donating to them and (2) how do other organisations manage? Are they all out there renting/buying castles, or do they somehow manage to find some kind of conference centre that won't rip them off? I have a feeling that the British EAs had too high an expectation for what they would find acceptable in a conference centre, and coming across a castle they may have found ways to justify "wouldn't it be really cool if we had our own castle?" Boring, bland, beige big room in a hotel may not be anywhere near as glamorous, but I find it difficult to believe it would be that hugely more expensive. I do feel there has been some creative accounting of the "sure, it *seems* like a huge expenditure, but if you take it that over the next twenty years we'll be hiring conference centres at a cost of £X,000 each time, and you multiply £X,000 times Y conferences to get a total cost of £Z00,000 then by comparison, a one-time purchase comes off cheaper".
Yes, you're not paying £X,000 a go for each conference, but now you have a castle to maintain and upkeep, and that's gonna cost.
"I thought I was going to be able to do a good deed that I’d been fantasizing about for years, and some jerk administrator torpedoed my dreams because I had once, long ago, had mild mental health issues."
That's hard. But on the other hand, you live in America. The most litigious nation in the world. Where cities sue car manufacturers because their cars are too easy to steal (Chicago, Baltimore and New York bringing lawsuits against Kia and Hyundai). I'm tempted to say "well in a sane country, you'd blame the criminals for stealing, instead of blaming people for not making their products too difficult to steal" but that would be unkind?
You could swear up, down and sideways that you really want to do this and you're a grown and sane adult and you are doing this of your own free will, but they have no guarantee that five weeks after the operation they won't get a solicitor's letter looking for zillions in damages because they took advantage of a mentally vulnerable individual. Hence, the magic therapy requirement: it's covering their backsides in case of legal action so they can point to "we required him to go to therapy to make sure he wasn't crazy", not for your or any other potential donors' welfare.
Typo: "have still" -> "still have"
Dear Scott,
it was interesting to read about the low risks of kidney donation as well as the thought process you went through. What I am sceptical about is wether paying people for kidney donations would actually be the best systemic solution for dealing with kidney failure. I don’t have numbers on the following and you are probably much better at doing the research on that, but as far as I know most kidney failure is related to other diseases (like diabetes II or hypertension) the genesis if which is closely related to lifestyle/ living conditions and can well be prevented. Do wouldn’t the best systemic intervention be to create living conditions that allow people of all classes to make healthy choices without additional expenses? (like modifying taxes on certain foods or forbidding them once they have been proven to be harmful - like high fructose corn syrup - or reorganising supermarkets and advertisement in a way that doesn’t ruin lives for the profit of certain industries…) Or even investing more money on alternative treatments for infectious diseases that would allow to use nephrotoxic antibiotics less often?
Those are just some naïve thoughts of a European, but I would be curious your prognosis on those interventions vs. paid kidney donations.
Kind regards!
As someone who started looking into thuisbankier reading Mathews’ article and was then beset by akrasia, I want to give this another go. Does Waitlist Zero have counterparts in Europe (specifically the Netherlands)? Their contact form asks for a US address.
Wow, amazed at the quality of writing here. that one blew me away. i had no idea, but have known many in my life who both donated and received kidneys... and i think i knew one whose left one was stolen. But as a non-Dr, and with a RN Nurse sister, I can say this for others, "We don't trust u." Flat out. No trust. Nada. Not for giving blood anymore and not for anything while alive. Sure, harvest everything you can once I am brain-dead, but stay the F away from me until then. Yes, it's that bad. I've been here almost 70 years, and seen shit I still can't believe happen in field hospitals to the best America the world can offer. And now ya got your AI to cut with, so I'm out just from that point alone. You should be really aware about what goes on in the medical-device industrial-complex before you let one of those things tear into ya. FDA? ha. They have better inspections here in Nepal, even with our ragtag group of clipboards and ink stamps. Hate to break ur bubble, but great writing, nonetheless!
Reading this reminds me of Shamus Young's blood pressure/kidney problem posts, which he died from last year.
https://www.shamusyoung.com/twentysidedtale/?p=52745
These are the recipients.
> No matter how contrarian you pretend to be, deep down it’s hard to make your emotions track what you know is right and not what the rest of the world is telling you.
This sounds to me like it was written by someone with an very different internal experience than me.
Do you actually feel like you “know what’s right”?
My experience is I often have conflicting notions of what is or isn’t right, and “the rest of the world” isn’t telling me one thing or another - it’s a confusing mass of shouting from different groups of loud, confident, intelligent sounding people all explaining why the other groups are stupid and evil.
Sometimes, I’ll see someone do a thing, or be a certain way, and think, wow, that seems right and good and noble, and I want to imitate that way of being. But to me this is like a non deterministic Turing machine that cannot find the truth (it takes too long!) but is sometimes capaable of recognizing specific instances of it.
If you want to save multiple lives and not discover that falling GFR in older age is twice as bad with one kidney (it is, obviously!), donate blood and get on the bone marrow database. You really can make a huge difference. I'm alive today because a delightful young man in Germany gave me some bone marrow stem cells. Yes, that makes me biased, but it's a no-brainer! I used to be a blood donor back in the UK, but here in Canada they didn't want my blood as I'd lived in the UK in the early 1980s - risk of mad cow disease. Moo! They wouldn't take it anyway, now, having leukemia.
> (obviously saints can do good things without needing psychological permission first, but not everyone has to be in that category, and I found it easier to get the psychological permission than to self-modify into a saint.)
“Assume a virtue, if you have it not.
That monster, custom, who all sense doth eat,
Of habits devil, is angel yet in this,
That to the use of actions fair and good
He likewise gives a frock or livery
That aptly is put on. Refrain tonight,
And that shall lend a kind of easiness
To the next abstinence; the next more easy;
For use almost can change the stamp of nature.”
― Hamlet, William Shakespeare
Having said that, there's one thing that the article never went into that you'd kind of think would be front and center in any talk about transplants: rejection and management thereof. If you give someone a new kidney but at the same time condemn them to a lifetime of immunocompromise, how much have you really improved their quality of life? The more you look at transplants, the more they look like a really terrible thing that we only do because it's the least-bad option available at the moment, the kind of thing that Dr. McCoy would scoff at and accuse us of being barbarians living in the Dark Ages for practicing.
Out of curiosity, (I genuinely don't know and would be interested in finding out if anyone's looked at this,) has there been any research done on questions along the lines of "would it be more effective to donate a kidney and help one recipient, but we know it works, or to fund stem cell research into own-organ cloning which could end up solving the problem for everyone but is currently hypothetical?"
1. Everyone knows we need a systemic solution, and everyone knows what that solution will eventually have to be: financial compensation for kidney donors.
Over the longer term, I'm highly optimistic about bioengineered human-compatible kidneys grown in pigs.
2. I was getting worried when Scott didn't post much over the last few weeks. Now I know why! And it's a very commendable reason. Thank you Scott for donating!
Personally, I've donated blood and sperm (and I'm due for another blood donation next week). I thought about kidney donation but decided it would take too much time away from my research, and I'm worried about its negative effects on me.
For what it's worth, I know two people who have recently gone through the process. One dropped out late in the process, and the other successfully donated their kidney. This is in the last ~6 months.
The one that dropped out felt very pressured by friends and family, and realized they were not in a good life place to take the time off of work. I think they were scared as well.
The one who donated seemed to have a fine time and was back at work well before expected.
Both reported that a charity was going to pay their expenses, including lost wages. For the one that went through with it, that seems to have worked exactly as advertised.
Kind of related. I’ve always thought that “opt-out” (instead of opt-in) organ donation on driver’s licenses for example, would help increase the supply of organs including kidneys. But when I’ve talked to healthcare economists about it, they say it’s a bad idea because it would bankrupt the health care system given the high cost of these surgeries and the aftercare. Thoughts?
Obviously the castle people could have found cheaper, drabber options, and guests would've been fine with it. I doubt there's a warehouse shortage. It seems EA folks haven't learned much from FTX.
There's an implicit Peter Singer argument in here somewhere. I only have one kidney to give, so by giving it to a stranger, I can no longer give it to a family member.
Very honest post. I hope you get the likes from people you were looking for by donating your kidney!
Can you try getting the statistics for Israel to get a better idea of the risks? My understanding is that in Israel the situation is reversed, with ~90% of kidney donations being altruistic (unrelated to the patient) so the statistics will be a lot less messy.
In Germany it is actually illegal to donate a kidney to a stranger while you're alive. (You can do it when you're dead, but obviously then your kidney won't be as good.) While you're alive, unless the recipient is a relative or at least something like your fiancee, apparently the law considers the dastardly danger of the ever-menacing terrible organ trade mafia too great to allow you to save the DALYs of a fellow human.
Eff tax breaks, why not help the people that need it more? Organ donation for get out of jail cards. Not for murder and rape. But surely we can find it out heart to forgive those people who downloaded a bunch of songs on Napster or something. Next time someone wants to make an argument about how they made a terrible error in judgement and learned from it, there is a way to directly demonstrate that. Hell, kidneys for green cards might just be the kind of proposal both sides might just accept.
I'll grant that 30mS increases risk by 1/660, but that's not the same thing as a 1/660 risk of dying. If your risk of dying of cancer is, say 1% baseline, increasing that by 1/660 is like an extra 1/66000 chance of dying (ballparking here). Am I missing something here?
Wouldn't it make sense for total organ donation to be the default execution method? Lesser criminals could donate a kidney in exchange for reduced sentence.
I know this is beside the point of the article, but since you're an MD in the field I was curious about your use of the word "schizophrenic" in this article. It seemed like you were using it to refer to multiple personality disorder, which I thought was distinct. I've been pedantically, obnoxiously, correcting this in other writing and ask not questioning if I've been wrong all this time!
Congratulations on donating the kidney <3
You said:
"Obviously this kind of thing is why everyone hates effective altruists. People got so mad at some British EAs who used donor money to “buy a castle”. I read the Brits’ arguments: they’d been running lots of conferences with policy-makers, researchers, etc; those conferences have gone really well and produced some of the systemic change everyone keeps wanting. But conference venues kept ripping them off, having a nice venue of their own would be cheaper in the long run, and after looking at many options, the “castle” was the cheapest. Their math checked out, and I believe them when they say this was the most effective use for that money. "
I'm curious to see the math for Wytham Abbey. All I ever saw was Owen Cotton Barrett's response when this was brought up over on the forum. The actual cost benefit analysis for paying £15 million wasn't made clear. As one comment pointed out, the reasoning given for purchasing the castle "could have been made virtually verbatim had the cost been £1.5m or £150m."
You might have seen more information than me though.
Owen Cotton-Barretts comment -> https://forum.effectivealtruism.org/posts/xof7iFB3uh8Kc53bG/why-did-cea-buy-wytham-abbey?commentId=u3yJfbm2pes8TFpYX
The blood donation centers assert that donating a pint of blood saves three lives; this seems... overstated... though as brazen propaganda it certainly worked on me. Do you have a more plausible estimate?
"I asked if they could do the kidney scan with an MRI (non-radioactive) instead of a CT."
Radioactivity and ionizing radiation are related but not identical concepts. Radioactivity is a type of ionizing radiation, but ionizing radiation can be generated in other ways besides radioactivity.
CT scans don't use radioactivity but do use ionizing radiation. Nuclear medicine tests use radioactivity. MRI uses neither.
Hey Scott, have you looked at New Zealand's reform?
NZ Initiative, a sort of free market-y think tank advocated for a model where donors are compensated for lost wages (previously donors were only compensated for a small fraction of their prior earnings).
https://www.nzinitiative.org.nz/reports-and-media/reports/compensation-for-live-donors/
It inspired the Compensation for Live Organ Donors Act, which states "live organ donors who are eligible will be paid regular weekly earnings from the day of their surgery and for up to 12 weeks while they are recovering."
https://www.health.govt.nz/system/files/documents/publications/compensation-for-live-organ-donors-information-pack-may21.pdf
As far as solutions go, 'Compensation' as opposed to a reward/incentive, feels like a less 'ick' framing.
Coincidentally enough, in today's NYT crossword puzzle, the clue for 10 Down was "Givers of priceless gifts", and the answer was "ORGANDONORS". Well done, Scott!
Beautiful entry Scott. I donated for a selfish reason (to a family member, my dad) but still share most of the sentiment (and post-op hiccups!). It really resonated in me. Congratulations and my best and sincere wishes to you.
Does donating an organ make one ineligible to later donate blood?
If so, one would have to weigh the relative benefits of each.
Does anyone know if there is an equivalent to the thing about giving 5 family members names for priority kidney donations when you live in the UK? I may have missed it somewhere but I can't seem to see it on the information online, and you'd think it would be something they'd make very visible if it was an option.
My kidney mentor was very helpful because she told me to set up my voicemail. I think I would have disappeared into the kidney abyss if I hadn't done that.
Because I also didn't believe it, I looked into it. The 1/660 number seems OOM correct.
From Radiation Dose Associated With Common Computed Tomography Examinations and the Associated Lifetime Attributable Risk of Cancer by Rebecca Smith-Bindman, et al, they estimate you would require 498 40yo male patients receiving a multiphase abdomen-pelvis CT to give one of them radiation-induced cancer. While this radiation-induced cancer is not necessarily mortal, it is probably >10% lethal (some of the other looking into it I did suggests ~50%), so that number sounds right-ish.
you really are a saint! (I lost my paternal grandfather early to kidney failure, my father is on dialysis and my uncle was too for years until his wife donated him her kidney. both me and my sister also have slowly failing kidneys so I know how valuable a functional kidney is) I hope if there is an afterlife you go to the best section of it.
by the way here in the netherlands what worked great was to make being an organ donor the default option rather than not being an organ donor. turns out the vast majority is just too lazy to change the status.
As a male your lifetime risk of developing cancer is around one in two. A 1/220 additional risk modifies this to become 0.5045. So the difference is fairly miniscule. The 1/10,000 risk of death from the operation is a probability and so is not comparable to the excess risk value.
Your methodology for calculating the risk from the radiation dose received in the screening exam is flawed. The thumbrule you quote is correct, but the risk from radiation exposure is not linear. Low doses are much less problematic than large ones, as the body has the ability to repair radiation damage up to a certain threshold.
Good for you for saving a life! According to the Talmud, you’ve saved an entire world! Why didn’t you meet with the kidney recipient though?
Modifying NOTA is brilliant and necessary. Reducing taxes for ten years seems like it only would incentivize middle class and rich people who pay taxes. This would cut out 50% of the potential donor pool. Why not just let Medicare pay donors; they’d still be saving money by not having to pay for dialysis treatment. I wrote about this years ago.
https://heshy.substack.com/p/resistance-to-new-ideas-kills-people
Wow, Scott! That's a wonderful thing you just did. It shall be accounted to you as righteousness!
Like many other commenters, I was speculating that maybe your wife just had a baby and that you were going to pop back in here with a "Hi everyone, meet Earendil Metatron Alexander!" I did not see a kidney donation coming.
Excellent, excellent, excellent. As an applied use of mild recurrent OCD and a comprehensive examination of voluntary kidney donation. Thanks for both.
Congrats on donating! I've bought specially branded t-shirts that say "I donated a kidney to a stranger and all I got was a stupid t-shirt" for people who have done that. I don't know if you're going to read comment #310, but let me know if you want one. From the people who have one, it's apparently a cross between funny and helpful to start conversations
The amount of bureaucratic friction placed between potential donor and donation sounds wildly disproportionate relative to risk, need, and reward. Sorry you had to go through that. Maybe just reforming the bureaucracy, with good rather than bad bioethics norms, will go along way toward pulling that % of donors up to 1-3%.
I think because it's adjacent to a lot of bad ideas and sets off people's "bad idea detector" in a way that doesn't turn out to be valid once you think it through.
Like if risky performance-enhancing drugs are legalized, then in competitive fields, taking on the risks of the drugs will be table stakes. Or, "if lots of people have an extra $10k a year in income, won't that just raise rents by $833 a month, to the point that people can only afford to live in San Francisco if they donate a kidney?". Or, "Won't this only appeal to desperately poor people, so we're using the poor as organ farmers?". They basically all boil down to "you don't want the compensation for donating an organ to become something that people depend on".
But there just aren't *that* many people on the waiting list in the grand scheme of things, so there'll likely never be enough kidney donor slots for it to become the sort of thing people do to just get by.
You'd almost want to scale the incentive based on number of willing donors versus remaining demand, which makes me realize I'm talking myself into a market for donated organs.
I wonder if part of the unpopularity is that 'stranger donors' tend to be weird (see below, and WEIRD, see Joseph Heinrich), and that most people, if they have any exposure to the concept, is from the emotional torture porn/Will Smith vehicle Seven Pounds. Which isn't altruistic donation (he's doing it for redemption, to balance the scales), but is possibly the closest thing in mass media.
>Your brain uses the same emotional heuristics as everyone else’s.
No, I suspect that's not entirely true, or EA either would not exist or be wildly more popular. See below-
> I asked them what kind of therapy was indicated for mild OCD that’s been in remission for twenty years.
While I want to assume the professional psychiatrist knows more about OCD than I do, I'm... *unconvinced* that some noticeable degree of EA intuition isn't a variety of scrupulous OCD.
That isn't to say it's not real, or that they're not doing good, or there's not similar parallels in many ways, or that "wanting to do good" is a problem, etc etc. Try not to be unnecessarily uncharitable in reading me, okay? But the commonality of the intense empathy, intense desire to do good, generally-somewhat-and-sometimes-*really* radical unselfishness strikes me that indeed *no*, your emotional heuristics are clearly not the same. In some cases you go to lengths to, as you say, [remove those guardrails](https://www.astralcodexten.com/p/book-review-what-we-owe-the-future), but at least to some degree it seems innate.
Edit: My own (pointless, sidelines) take on the Castle Scenario is that buying a venue is not, in theory, a bad idea. That venue in particular clashes with the general "aesthetics-deficient" perception of EA, but more importantly for why it caused such a big stink, communication about it was awful and in the end they just wound up downgrading the EA Forum community section to get over it, which is not a great solution. Sort of a... "trust your betters" and "shut up, peons" vibe; a lot of unforced errors involving the communication and not just the actual purchase.
My colleague Luke Semrau has written several articles arguing that there should be a kidney market. https://philpeople.org/profiles/luke-semrau. I think his work is good, despite the fact that utilitarianism is a false theory of morality (my main objection to EA enthusiasm).
> But I think about myself at age 20, a young philosophy major studying utilitarianism.
Heya Scott, I picked up Anna Karenina again this morning. I thought you might like to know that Bentham and Mill are name checked on page 8.
I wonder what the breakdown of the 100K on the kidney list is between people who had kidney failure through no fault of their own (non-fun sports/stupidity accident, genetic disease, autoimmune) vs. lifestyle choices like diabetes due to eating too many fudge rounds.
Does this factor into the altruism view - of potentially rewarding someone for bad decisions?
Thank you!
What's the ethical calculus on kidney donation vs bone marrow donation?
Good job Scott! I ran into logistical issues last time I started this process, but I now feel inspired to give it another go.
On the topic of the “castle” scandal. It’s important to know that there actually were two “castle” scandals, the second one being the ESPR chateau purchase which I made an EA-Forum post about:
https://forum.effectivealtruism.org/posts/pbe8x4AQDqftQoaT5/espr-should-return-the-ftx-funded-chateau
This post got a comment from a high-profile EA who was more involved in the project accusing me of spreading falsehoods which he promised he would write out later.
Naturally, since he was a high-profile EA much closer to this purchase and I’m just a random schmuck, a bunch of people heavily down-voted it, I lost karma/voting-power and the issue itself lost visibility and is now largely forgotten.
However, when the person later gave the promised list of falsehoods he put it in a swamped comment section without a link or mention of the original post which would’ve allowed people to compare. If they could’ve done so they would’ve seen that his comment didn’t point out any falsehoods at all and in fact spread a bunch of falsehoods about my post, the most egregious one I consider him vaguely implying I doxxed a bunch of people. (to this day I have trouble getting EA’s to reply to emails or accept my applications, and I have to wonder whether that’s because they think I’m a liar and a doxxer)
> The last Guardian opinion columnist who must be defeated is the Guardian opinion columnist inside your own heart.
So true.
Can you elaborate more on the exact criteria for psychological conditions precluding you from donating your kidney? Clearly it's variable across institutions. Will having a mild mood disorder (which honestly doesn't affect my decision-making at all) on my record be a problem?
I can't help but think of all the Effective Altruist Rabbis out there debating whether donating your left kidney was a good thing or not.
I am incredibly proud of you Scott, incredibly proud. I have been reading your blog ever since I was about 16, pretty much grew up on them and I am also a transplant recipient. I have to say, there has never been such a step change in my state of existence. Going in to the operating room I felt terrible, I then went under sweet anesthesia. When I woke up, I felt better, much better! I had just undergone a serious surgery and I was feeling better! The nurses wheeled me in to my mothers room. My mother, the visage of the Madonna was laying in her bed, having given birth to me a 2nd time. They held up the bag of golden urine, the water and waste trapped within me was gushing out. What happened in that operating room felt like a magical ritual. I am incredibly grateful for you that you helped someone experience what I experienced.
As for my story, I had kidney failure 1 year ago. I was on peritoneal dialysis (not hemo, where blood is taken out of the body, this is the usual one in the hospitals). To illustrate what this is like. There is a catheter attached to your abdomen. This catheter goes in through your abdominal wall, creating an open, oozing wound. I had huge psychological troubles with the catheter. It essentially made me feel disgusted with myself. I would carry it around attached to an elastic belt. Every breath I would take would lead to me noticing the catheter, noticing my disease. Noticing that I was a failed organism that had lost its ability to get rid of its waste.
The other end was connected to the dialysis machine, essentially a big pump. Every night you set up the machine at home. This involves connected about 10l of dialysis solution to the pump. During the night it pumps about 2l in to your abdomen every 1.5 hours or so and pumps it out. The waste in your blood diffuses in to the dialysate contained within your peritoneal cavity. This is then pumped out by the machine.
Sometimes, I would wake up with about 3-4l in my abdomen, belly bulging, the skin taut like a drum. The machine constantly kept me awake so there wasn't too much sleep anyway. It honestly was a limbo like experience waiting for my transplant. And despite all of this the dialysis only gets you about 5% of kidney filtration. That is it. You still suffer daily from nausea and fatigue. Not to mention the fluid restrictions, these were the worst.
Have you ever went 2 days without drinking any fluid? No water, no tea, no coke, nothing. Absolutely nothing. That was my existence. I had to double think about whether to eat a certain food if it had too much water. When you can't urinate, there is no where for the water to go. I also noticed how much of our social life revolved around drinking things.
So I tried to take power in some shape or form in to my own hands. Even after a transplant the future of the transplanted kidney is not certain. The prospect of returning back to dialysis haunts me, like the Sword of Damocles it hangs above, ever present. I want to vanquish this specter, I felt like I was robbed of a normal life by disease, so it was time to fight back. I have a mechanical engineering PhD, I was in automotive. I applied to all the Nephrology groups I could think of, for anything. I wanted to learn, I would do any technical thing for them in return for knowledge and experience in the field only. I did not want payment.
In the end, I had two offers. One was an internship at Erasmus Medical Centre on kidney Organoids. I believe that the eventual solution to the problem rests with lab grown organs. The other offer was from University Medical Centre in Utrecht. This was a 3 year post-doc position on developing an implantable bio-artificial kidney. I was in a dilemma for a while. I wanted a final solution and only the fully lab grown organ was that. But the future to that is uncertain. What if we really need the full embryological niche to build functional tissue? There are so many unknowns.
One night, I was walking back from my girlfriends house (15 minutes down the road walking) to my rental, to my machine. I was feeling horrible, the dialysis can't manage electrolytes very well, so sometimes I felt like my muscles weren't entirely there. Having left her house, without being able to sleep in the same bed (though she often came overnight to me, bless her). I finally resolved to start working. Not fundamental research, but hard engineering work which may yield an imperfect, but far better than what we have currently have, solution in the medium future. So I accepted Utrecht's offer.
I am still amazed that these guys took the risk, to accept a guy with no prior experience in the field. It really amazes me, I do feel indebted to them to some degree. Having started the project and seen how interdisciplinary one needs to be, I think indeed the most important thing is competence and drive. The former is to be proven, latter I am sure I have. I am writing this from my lab. I am currently setting up testing and device/prototype fabrication pipelines. I came in to lab 3 weeks after my transplant surgery which happened 30 May 2023. Its a huge project, and its requires all my efforts. But in the end, I will need more hands and minds.
There are parallel efforts happening in UCSF (your favorite place Scott!). But I have doubts that I shouldn't raise publicly under my own name. In any case Scott, if you want a chat about the project I would be honored (I could also tell you something about the transplant process from the transplantee side, my experience here was quiet interesting and similar in nature to yours!). In the end, for us publicity will be helpful. But more importantly, hands and minds.
I am 28. I hopefully have a long life ahead of me, and unfortunately, a lot of time to go back on dialysis again. The last thing I want is to hold my child with a catheter attached to me. Never again.
Awesome to see you've done this! I did the same about 11 months ago and feel awesome about it. Also partially motivated by the Vox article.
Thanks for that.
My husband has a rare genetic disorder that caused kidney failure in his 30s, and is currently on dialysis. We have a donor in the pipeline but no guarantees of anything, ever.
I would like to be an advocate for increasing the number of kidney transplants and was interested in the proposal to modify NOTA. Having "opt out" rather than "opt in" organ donation on driver's licenses and other IDs would also increase the number of deceased donor kidneys available.
I would appreciate connecting with your kidney mentor or anyone else interested in a coordinated effort to promote kidney donations.
"Everything else I try to do, there’s a little voice inside of me which says “Maybe the haters are right, maybe you’re stupid, maybe you’re just doing the easy things. Maybe you’re no good after all, maybe you’ll never be able to figure any of this out. Maybe you should just give up.”"
This sentiment makes me want to scream. You’ve written things for years that many people have enjoyed, have found interesting enough to take into their own vocabularies and mental models and cite and link to years later. There are multiple thriving communities out there that are offshoots of your blog’s comment section. That you can’t trust the value of your own work - work that may be easy for you! but has not been done by anyone else! - because it can’t be measured in QALYs or DALYs or whatever is... frustrating, sad, and not surprising of course to anyone who’s been reading you for some time.
But letting the social circle and not-a-religion inside your head win is worse in some ways than the Guardian columnist, because you know the columnist isn’t you.
Very interesting story and analysis. One question my wife (coincidentally a Weill Cornell doctor) wondered: Is there an EA movement towards encouraging people to donate blood? That seems comparatively simple and costless, and there's a shortage right now.
I make fun of Scott a lot, but I want to give them credit where credit is due: he writes valuable blog posts, which can be read and shared to others.
'Dylan Matthews wrote about an issue where his scrotum briefly inflated like a balloon.'
Well, his is probably otherwise empty, so maybe that had something to do with it.
Sorry, that was a cheap shot, but I had to. It's like when someone leaves donut holes out on the counter at work: you can't help but take one.
The "intuitive" objection to EA (particularly EA as exemplified in this piece) has teeth.
Donate a kidney to a stranger, and now you haven't one to spare in the event that someone close to you (relative, spouse, child, friend) happens to need one at some future point.
The "off-the-shelf human" intuits that a stranger-donor puts a finite multiplier on the "value" of prolonging the life of a relative/spouse/friend (the probability that this opportunity ever comes about is not pertinent, so long as it is not zero) vs. that of a total stranger. This is not how a "blood is thicker than water" standard-issue human is wired; it "fails checksum", and not everyone who breaks out in hives when reading about it is able to articulate the precise reason why. But it is a healthy reaction nonetheless.
It is part of why EA comes off as a creepy, evil cult to many people, and articles like this do their necessary bit to make it so.
Stalin famously refused to ransom his eldest son, who perished in German captivity. (the offer was to trade field marshal Friedrich Paulus, captured earlier at Stalingrad.) "We do not trade privates for field marshals." Whatever one may think of Stalin -- whether one sees his act as a heroic one, or simply further proof of his depravity -- it was an unusual act, and I find it difficult to imagine that most people would wish to inhabit a society where it would be regarded as ordinary and expected. Perhaps EAs would -- but this is why EAs are creepy, evil cultists from the POV of someone who doesn't also practice that religion.
From my non-EA, "normie" POV, to be willing to sacrifice your spouse, child, sibling, parent in order to save ANY number of total strangers, is a depraved thing. And the people who break out in hives when thinking about it, do so for perfectly healthy, valid reasons. And I break out in hives with them, when contemplating a society where people do in fact regard their family and friends as fungible vis-a-vis strangers, regardless of how numerous or imperiled the latter may be.
God f*cking damn it, I also got rejected for mild OCD by UC Health here in Colorado. They did NOT respect my right to bodily self-determination, and this was after I had done the 24 hr of pee, full day of tests, lots of follow up tests (a weirdly high fasting blood glucose level but fine results in the challenge test, concern over LVH but turns out I'm just a runner, neutropenia but turns out it's congenital and not a problem). I didn't disclose that I had OCD, because I didn't know at the time. Initially, I didn't agree with the diagnosis (scrupulosity - which seems a little too convenient of a diagnosis for someone trying to give away their spare kidney), but as time passed, I realized he had a point. It doesn't matter though. I am confident that my OCD was unlikely to cause much of a problem with donation / recovery. I would have happily given my informed consent, and I resent the hell out of UC Health for not giving me that option. They kept on repeating that because I was in good health, they needed to be diligent about making sure I could stay in good health after the donation. This paternalistic pablum makes my blood boil, though I know physicians take "do no harm" seriously. But I would appreciate if they would widen their view. Being denied the agency to donate my spare kidney did activate my OCD rumination - did they care about *that*? What about the loss of utils - to the recipient, but also potentially others if mine were a bridging donation? Their consequentialism is irritatingly narrow. Sincere, but narrow.
Congrats for not letting the haters get you down, and completing your donation. In your face, UCSF!
Maybe I should give it another try, elsewhere...
I considered kidney donation at one point, but my spouse talked me out of it. Their logic was that while kidney donors don't have worse outcomes than the general population, they DO have worse outcomes than those who pass the standards to become donors.
The fact that the medical community elides this distinction was enough to convince me that they're lying, and shouldn't be trusted with my life (or kidney). I'm happy to reconsider if that situation has changed.
Setting aside the long timeline for scientific development and regulatory approval, why is the ultimate solution not "let's grow infinite kidneys from pluripotent stem cells"?
https://www.science.org/content/article/early-stage-human-kidneys-grown-pigs-first-time
"But I think about myself at age 20, a young philosophy major studying utilitarianism. If someone had asked me a hypothetical about whether I would donate a kidney to a stranger in need, I probably would have said yes."
I think about my alcohol consumption at age 20 and if someone had asked me a hypothetical whether I would donate a kidney to a stranger in need, I probably would have said no effing way.
I donated in 2021 and have nothing but good things to say about the experience so far. They did take my right, the jury is out on whether this has lead me to become evil.
I suffered from depression as a teenager and was briefly hospitalized at one point. However, the psychiatrist who did my eval was very reasonable about the fact that I am a mentally healthy adult, and it wasn't an obstacle at all. This was through Tufts in Boston, who I would give high marks in every category, including catheter insertion.
Conversation with a nephrologist:
Me:
In your experience, is there a relationship between kidney disease and being a kidney donor?
Nephrologist:
Pre-donation there is a strong relationship between healthier than average & having great kidney function.
Post donation there is an increased risk of mild kidney disease; people who donate a kidney go on to have kidney failure at a lower risk than that of the general population (but they started out better).
People tend to be very satisfied that they have donated a kidney to a loved one (dialysis stinks).
All of that was for the US …. In countries where people sell kidneys outcomes for the donors are NOT so good.
Me:
Thanks. So in your experience, kidney donors are underrepresented among people with severe kidney disease?
Nephrologist:
Yes (in the US).
"The Talmud is very clear: that voice is called the evil inclination, and it dwells in the left kidney. There is only one way to shut it off forever. I was ready."
So why you passing off this evil onto some other poor slob? Couldn't you have handed over your right kidney?
Some "Effective Altruist".
"The usual rule of thumb is that one extra Sievert = 5% higher risk of dying from cancer, so a 30 mS dose increases death risk about one part in 660."
Aren't you confusing absolute and relative risks here? "5% higher risk" means 5% higher than the *already low absolute risk of getting cancer in the first place*, doesn't it? And that is certainly many orders of magnitude lower than 1 in 660.
EDIT: The correct figure, assuming 5% means relative risk and using the cancer incidence numbers from Google, is 1/4650. There's also the issue that Scott is comparing that number directly to the 1/10,000 risk from surgery despite the fact that death from surgery would be immediate and death from radiation would be many years in the future. Once you take that into account, surgery poses a far greater danger.
This really brings back some memories. I used to live in the Bay Area, and found it a very lonely place for me, working, unable to figure out how to gain friends or love. I was a mess, really.
Then I gave blood and ticked a box about bone-marrow donation, and I was a match. I walked around high, it felt literally the kind of high I'd pay for drugs to get. Whatever dam of brain chemicals that I kept held off until I felt like a worthwhile person, somehow I turned the inaccessible spigot, and I felt authentically good for maybe the first time ever. This is what it must be like to be pregnant, I'm crossing the street for two people!
I was well taken care off, the operation went well, but I got some kind of a bleed in my leg and i was in pain for some months after, but with every twinge I felt the hero. And, well, the leukemia patient died, so I'd also advise anyone donating it's a harder row to hoe to get that outcome information. My leg still (30 years on) has minor problems, but with that meaning attached, I don't count it as a loss; maybe I've even needed that reminder. It's not like I've done much better at the self-care since then really.
I think you did something noble for an individual's life at no small cost to yourself. I don't think its fair to make it about effective altruism in the negative. The individual decision and act was good, and whether or not a single person chooses to explain it was enhancing QALY years, or you felt a strong compassion, or because you felt a religious duty uncoerced doesn't change that. Not everything need be a debate on a universal philosophy or the flaws of such.
i am older now and worry though. It's never good to hear anyone you interact with even slightly has been in the hospital. It's a place we need but never want, if you get my drift.
I hope the recovery from the uti was quick. Hope the wife is ok too. Supporting can have its own fears and worries. Please take it easy.
So THAT’s why you weren’t at the Meetup. 😉
You wrote: "This is great - my grandfather died of kidney disease, and 10 - 20 more years with him would have meant a lot."
You didn't mention this in your risk calculation for donating! Did you look into the likelihood of developing kidney disease conditional on a family history? Seems like a relevant calculation, I'm guessing that you looked into it and found no increased risk...?
You're a good man, Scott. And this was a good writeup.
I'm old enough that this probably wouldn't be a good choice for me now, and I can't honestly say I'd have done it ten years ago if I'd thought of it. But, in spite of having donated my entire blood supply something like ten times over, and being on the bone marrow donor list most of my adult life, it never even occurred to me that this was a possibility before now. You'd think that, being on the list of people who is clearly open to donating non-vital organs, somebody would have mentioned the possibility. And probably they did at some point, but not in any way I noticed and certainly not with any assessment of the risks.
So there's clearly an information deficit here, and one you've helped deal with. Let's hope that this post gets lots of signal-boosting. Speaking of which, if EA already has the reputation in some circles as Those Wacky Nice Guys Who Keep Giving Away Kidneys, what's the tradeoff on bednets vs. public service announcements re kidney donation?
"When you donate, you can give the organ bank the names of up to five friends or family members who you’re worried might end up in this situation. In exchange for your donation, they will make sure those people get to the top of the list if they ever need a transplant themselves."
Can you change the names later on? I'm thinking about the sorts of incentives this could create.
Congrats!
Rather than direct payments, a lifetime healthcare benefit, like early admission into Medicare or some other coverage, would (a) most directly address people's principle anxiety about the procedure, and (b) be more digestible to those with a strong... sanctity drive if you want to be Haidtian about it.
What I mean is, it might help counter instincts of "ick paying people to do charity is bad" or "ick paying people to do bodily sacrifice is bad." (Even though, at worst, sure it is kind of a sleight of hand. But if people genuinely prefer packaging a fungible benefit in a particular way, why argue?)
The healthcare angle might especially entice those who want to hang a shingle, but are worried about missing out on a system dominated by employer-provided care.
If every solo contractor (in tech, professional services, entertainment) had the option for lifetime free healthcare by donating a liver or kidney, you might close the shortfall.
Tangent, I had assumed opt-out deceased donor policies were widely considered to be an easy policy win here, but recent research seems skeptical, so I'm more unsure:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8128443/
Specifically the clarification of how Spain's system works in practice surprised me. I'm not quite convinced opt-out is net harmful, but understand the risk of discouraging voluntary donations, so maybe the better investment is in donor counselors for grieving families and improved logistics for abruptly available organs.
(Hang on a second, would UCSF have taken your kidney if you died in a motorcycle accident in their parking lot? Was that their preferred admission path!?)
Very cool! Wanted to go through with this earlier in life but my family was adamantly opposed to it. I've been donating blood and figured bone marrow donation would be a good compromise. I got the swab kit for the bone marrow donation and promptly forgot about it - tonight I'll open it. This post was exactly the push I needed. Cheers!
Does type 2 diabetes automatically disqualify you from donating?
Tangential to the donation issue, but are there any surgeons here who can explain why the incisions for a laparoscopic nephrectomy are on the front of the abdomen? I would have assumed it would be easier to get to the kidneys via the back and/or side.
omg I hoped someone else would ask but would you describe the pattern touching more? Like what are the patterns, what does it feel like
also I'd like to report the urban legend backstory meme text was difficult to read for me in phone browser
I'm worried that this donation was made out of scrupulosity, which Scott of course has discussed in several posts. Scott's stated reasoning for donating:
> Everything else I try to do, there’s a little voice inside of me which says “Maybe the haters are right, maybe you’re stupid, maybe you’re just doing the easy things. Maybe you’re no good after all, maybe you’ll never be able to figure any of this out. Maybe you should just give up.”
This reminds me of Ozy's post on shame and scrupulosity: https://thingofthings.wordpress.com/2018/10/24/defeating-scrupulosity/
Now I know Scott has argued there's no link between EA and mental illness in general: https://slatestarcodex.com/2015/03/06/effective-altruists-not-as-mentally-ill-as-you-think/
But reading this just makes me feel sad. Like poor guy, he felt so bad about himself that he had to cut out part of his body and donate it to make himself feel worthy. Or as Scott put it in a different article (https://slatestarcodex.com/2015/01/01/untitled/)
> A better word for this untitlement is, perhaps, scrupulosity, where you believe you are uniquely terrible and deserve nothing. Scrupulosity is often linked to obsessive compulsive disorder, which the recent survey suggests nerds have at higher rates than the general population and which is known to be more common in high-IQ people. When I hear my utilitarian friends say things like “I have money and people starving in Africa don’t have money, therefore I am morally obligated to give half of my money to people starving in Africa or else their starvation is my fault” and then actually go and do that – and trust me, these people are always nerds – then as often as not it’s scrupulosity at work.
So maybe it was reasonable to turn him down for the OCD history after all.
I'm biased here. I don't think donating a kidney to a total stranger is a good thing. I share the intuitions of other commentors that it violates the moral value of Purity. And there's something disturbing about doing it for this reason. There's a story about someone who starves himself to death for EA purposes - I can't find it at this moment but I'm sure it's been posted in the comments on Scott's blogs before. This has that flavor to me, even if it's only a 1% chance of death. It's just too self-denying, in a visceral way - a knife is taking out one of your organs! (ok, probably a laproscope, but still.)
Basically, I think we should feel good about ourselves already - we shouldn't need to donate 10% or a kidney to get to that point. (https://slatestarcodex.com/2014/12/19/nobody-is-perfect-everything-is-commensurable/) And if we're not at that point, our resources should go towards ourselves, to fix that problem, rather than give up some part of our life.
Sorry, I'm a bit attached to my parts.
Maybe it's my transhumanism. Permanently reducing my physical potential (even in such a minor way) just rubs me the wrong way. Also, I intend to live a very long time and I don't fancy removing a potentially necessary part of my body.
Regarding the gap between people who said they would donate vs who do: I think it's like the Peter Singer analogy of saving a drowning child in the forest. If you are the ONLY one present, most people would try to save the child. But if there are millions of children at risk and billions of people who are in a position to save them, there is almost no pressure on you. Similarly, if someone come to you and say: "you are the only match for this person, please give them a kidney because no one else can", about 50% of people are honest in the survey that they would donate in those circumstances. But not in real world circumstances.
It is good to know that friends and family get priority, that was one of the things holding me back before, I will check out my local organization and consider donating more seriously as a result of reading this information. Thank you!
Just came here to say that this is awesome man. Being willing to let go of an important body organ is selfless and noble. You valued action over talk. You loved your "neighbor" (a stranger) as yourself. You cared for someone in a massive, humble, and anonymous way. Good on you.
1000% agree on financial incentive for kidney donation (as well as other organs in need, or even blood when in need). This would solve many issues in this realm, and save government/insurers massive many X in the long term.
EDIT: Financial incentive in the form Scott proposes, such as tax credit, seems like a good way to do this, as opposed to cash
Security guards and gun control are effective measures to prevent school shootings, but so are structures that assure low-threshold contacts for students with troubles with their family or with bullying and while the first might be necessary, the second addresses the problem at an earlier level. On a similar side „making everyone eat healthy and exercise“ doesn’t work if we try to force people to do stuff without changing existing structures. People who have to struggle for their existence tend to chose the path of least resistance, so if the path if least resistance is fast food and cans, they will chose that. However, if we create a path if least resistance that allows people to be healthier on the side, it’s not like they will object. You can improve people‘s health by how you design cities, by making it easy to access structures of every day life (stores, schools, work) on foot or by bike. In Europe there’s another good example in the field of organ donation. In Austria your organs can be used after your brain death by default, unless you disagree, whereas in Germany you have to actively declare that they can be used. Obviously more people are organ donors in Austria, because to actively disagree, you have to mentally engage with the topic and that’s uncomfortable, so not disagreeing is the path of least resistance.
NOTA sound much better than nothing, and if the options are NOTA or nothing we should all push NOTA.
But I wonder if NOTA is better than opt-out organ donation by default for everyone in the country. Either in terms of outcomes if each were implemented, or in terms of political feasibility.
My own impression of the situation is that opt-out donation would solve more problems faster, and I like the ethics of it better (financial incentives are always going to be distortionary on other things, given how central money is to all of our systems and incentive programs).
But maybe NOTA is easier to pass politically because it's a tax cut and everyone likes those? Or something about what section of law would have to be changed and how much attention it would get?
Knowing very little about this area, I just wonder if the much smarter and better informed people pushing NOTA have a standard spiel or link I could read about why put effort behind that instead of opt-out. I would love to learn whether I should be changing my standard rhetoric on this topic.
Like a few other commenters, I found this post quite sad, and it reduced my trust in Scott’s good judgement a little bit. Possibly this is because I have a good chance of needing a kidney/being on dialysis at some point (around 1 in 3 to a first approximation: I’m type 1 diabetic and have various related issues. diabetes is the most frequent cause of kidney failure).
First: most kidney failure is a consequence of chronic illness. Effective altruism here would be to donate to/work in research on curing those illnesses, or on artificial organs, rather than donating. Donated organs are a sticking plaster rather than a solution.
Second: doing a good thing so you’ll feel good about yourself doesn’t seem healthy. If/when I need a kidney, I would not want to take one from someone who felt that way (scrupulosity cuts both ways).
Third: I think caring primarily about people you know and love, and less about far away strangers, is one of those traditions that is well founded and morally correct but is not “legible” (like the processing of manioc, in an example Scott used in an old piece). Perhaps one reason is that this tradition means that our feelings of generosity and caring are less susceptible to exploitation. Donating organs to random strangers is abandoning this tradition.
Anyway, I hope this will be helpful to other people who are considering this type of donation. I also hope my comments won’t be upsetting for Scott: that’s not my intention. I do hope you feel really good about yourself now, (and I think you should have felt really good about yourself all along!!)
Weird question but, could you say what was the weird pattern you use to touch objects as a kid? Curious cause I used to do that too! In my case the pattern was like A B, then B A - out of some vague sense of "fairness" to object B, so it can go first as well. But now B was first second, which is still not fair, so let's do one inverted round, B A A B. But it's still not 100% symmetrical, so you go B A A B A B B A, but then... Yeah, it was a recursive pattern that could go forever which was, uh, a problem at times.
Recently I found out that this pattern actually has a name, Thue–Morse sequence (OEIS A010060), which I thought was super cool.
Congratulations Scott. You did a very good thing.
About a year and a half ago I seriously considered donating. I went through the screening and got approved to donate. During the screening process a doctor mentioned a study about post-operative pain, which I believe was this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6790588/
IIUC, the study reports that ~1/20 donors reported chronic pain (that they self-report is due to the operation) years after the operation, and that those that do report a significantly decreased quality of life. The study doesn't have any controls, so it's possible that this is mostly due to the donors being mistaken about the pain being caused by the surgery.
That study gave me enough pause that I so far have not gone through with the donation. Scott, or anyone else, curious to hear your thoughts on it.
Hm. When I query my instinctive emotions (as opposed to a more rational system of ethics), I can say that I'd jump at the chance to donate a kidney (to start a chain) if a close relative or close friend needed one, but that this falls off rapidly the less I know the person and the less I interact with them on a daily basis.
However, if I happened to know the single bit of information that the person in need had previously donated a kidney to a stranger, that instinct goes right back up to somewhere around second-cousin-whom-I-never-see level, which is roughly "answer yes within 1 minute, but it'll take about 30 minutes before my emotions are fully on board".
I suppose this shouldn't have been a surprise given my instincts around reciprocity, but it was shocking to feel that switch flip, even in a hypothetical.
Does anyone else feel this way?
I'm considering kidney donation at some point in the future because of this article, but my mental health history is much more recent and stigmatized than yours and I think there's a decent chance I'll be rejected. Hell, there's a chance they'll view my desire to donate as a sign of mental instability. But, I will research it more and talk to friends/family/my psychiatrist/my priest (yeah, not very Rationalist of me) about the idea and maybe fill out that form in 6 months or so.
But the idea of kidney donation did remind me that I've always meant to donate blood but never got around to actually doing it. The one time I actually made it to a donation center I walked up 4 flights of stairs to get there and was rejected for a high "resting" heart rate. So I signed up to donate blood tomorrow and I'm going to try to be a regular blood donor even if kidney donation is off the table.
Just one data point, but I lost a kidney to cancer 23 years ago with no ill effect so far at 81 years old. Ther is noting I do or do not do because of having just one kidney.
Good for Scott!
This is so admirable!
I could never do it, out of a visceral (so to speak) terror of surgery. Another word for this is cowardice. Glad not everyone is a coward.
I find this absolutely admirable, I wish I eventually grow up to such selfless courage. However the more I think about it the more I run into a conceptual issue.
The thing is, I care about animal suffering almost as much as I care about human suffering. And I fear that by giving a kidney to a random person, the chances that they are a carnist are overwhelming. As a pure counterfactual, my action of saving this person will then cause immense suffering, potentially 10 to 20 years of daily contribution to the torture of conscious beings. I wonder if others have thought about it this way?
As someone thinking about donating a kidney, I have two concerns with the cost benefit analysis here. Firstly, it seems to me that the expected utility of donating a kidney today is only positive conditional on it being the case that:
(a) You do not have the opportunity to just save some other person’s life by letting them use your kidney after you die.
And it seems that (a) will only hold if: (1) the organ shortage is solved within your lifetime, and/or (2) your kidney will not be in useable condition after your death. I think an analysis of the probability of (2) would be helpful here.
The other problem: people who actually do donate their kidney to a stranger are clearly a very weird subpopulation, differing in all kinds of ways from those who could be allowed to do so but don’t. So these possible but unwilling doners may not be a good control group for examining the effects of kidney donation on actual doners.
Scott, do you think in retrospect it would have been preferable to just lie about the childhood OCD? Or is this a feasible path for other people with long-ago resolved mental illnesses? Especially if your childhood was before the era of electronic medical records, it seems they wouldn't really know about any past mental illness unless you told them (or unless it was obvious enough that a psych would notice it in the interview, in which case it's not really resolved.)
Counting this as one more piece of evidence for my general rule of being very careful what to tell doctors. They are not on your side. They are on the establishment's side.
Would you encourage your own kids to donate their kidney? At what age?
Thanks for donating. True gift to the recipient.
After reading the title I was afraid Scott lost his kidney. Turns out Scott lost his kidney... voluntarily.
so its illegal to sell my kidney.
But could I demand a 100k charity donation from the receiver?
Regardless of your reasons for donating a kidney, thank you from a myeloma survivor with kidney failure who does not qualify for a kidney transplant, because I have not had a consistent two-year remission in 8-1/2 years. Thank you for working with UCSF, to whom I donate money for the BioKidney project. If and when the BioKidney becomes widely available, the dialysis industry will be devastated.
Can I plug the stem cell registry?
- Charity called Anthony Nolan, you just spit in a vial and send it by post
- If you're a match for someone who needs a transplant, then you're contacted
- You then get asked if you are okay with actually going through with it
- You get some injections for a couple of days, then one or two days in hospital with a canula in your wrist taking out your blood, whirling it around to centrifuge out the stem cells, then putting it back
- That's it!
I got invited just over 4 years ago. Mine was slightly more complicated because I have low blood pressure so they ended up fitting a central venous line, which is more invasive than a normal cannula. Also, I freaked out (not a fan of x-rays or needles), and so probably some of the tiredness afterwards was from that. Then I refused to give in to the tiredness and did two gigs the next week, restarted lectures, and did my coursework presentation, which meant it took me a few months to actually recover. Oh also, I got low on Calcium which made me a bit confused.
Like Scott, I meant to do a "this was totally fine" post afterwards, and then ended up just crying at anyone who spoke to me from exhaustion. This is partly because university didn't really do support for being ill, you just had to make up the time. But, if I'd done the op with a job, I'd have just taken a few days of sick leave and it would have been great. So sign up to the register if you want an easier moral high than a kidney (with lower chance of selection) :) - you also get a t-shirt or a mug!
If some rando in New York starts pouring out long and incredibly well-written essays filled with venom toward political correctness, moving website elements, and the New York Times, we're really going to have to reevaluate a lot of things.
So selling your organs is just generally acceptable by the community? I mean, I personally don't have a strong opinion on the matter, but just checking that's what is being proposed.
I've long been meaning to write a post about my own kidney donor screening process; if this article doesn't give me the push, nothing will.
I planned to donate my left kidney to my father, who had ESRD. As you did, I attempted a cost-benefit analysis and ended up concluding the medical risks to me were negligible. Embarrassingly, the biggest quality-of-life factor on my end was the prospect of changing from a no-significant-medical-events person to a one-significant-event person. Once you donate, doctors will expect you to report for checkups once a year and watch your salt consumption, instead of swanning through life without a care as donation-eligible people can otherwise do.
On my dad's end, the analysis was more complicated: I compared the ~5 quality-adjusted years he could expect with dialysis against the ~10 quality-adjusted years he could expect after a transplant. How does going through hemodialysis 2-3x a week compare with having major surgery (riskier for the recipient than the donor) and then taking immunosuppressants for the rest of one's life? Before COVID it would have been a no-brainer. Now... transplants are still preferable but not overwhelmingly so.
For the EA-inclined, there is a financial aspect as well. Dialysis is EXPENSIVE. If you live in a country with socialized healthcare, I expect you can already donate a kidney out of financial self-interest, NOTA or not.
In the end, I flunked out during psychological screening just as you did. The social worker asked me how I was doing and I told her (like an idiot) that being under lockdown made me feel isolated, and seeing my dad suffer from kidney disease made me feel sad. She then recommended to the doctor that I _not_ donate a kidney to my dad until I got a handle on my dad-sadness, lest I make an irrational decision. Let this be another takeaway: HOSPITAL SOCIAL WORKERS EXIST TO TICK BOXES! DO NOT TREAT THEM LIKE HUMAN BEINGS!
I planned to wait a few months and re-apply, but my dad died of a dialysis mishap a few weeks later. Whether I had passed the sanity test or not would have made no difference.
A way less drastic step that everyone can probably take right now is to figure out how to tell the system that you're cool being an organ donor in the event of an untimely death. For Australia, this is super easy - go to myGov > Medicare and there's an organ donation box you can tick. I can't speak for anywhere else.
So calling all Australians: go to the Medicare page and tick the box saying that you consent to being a post mortem organ donor, if you're not quite ready to part with a kidney yet. That way, if you get hit by a bus tomorrow and never get around to it, your kidney will still help (and hilariously I think it's actually significantly lower effort than getting screened for kidney donation while alive)
Hi, I received a kidney from my father in Februaey this year, and i feel terrible for how it left my father feeling. My drs didnt scan him properly and found out on the operating table that he had three arteries connected to his right kidney. . Now we are both sitting below 50 percent wuen previously my healthy father had a function of 85%. Drs told us it wouldnt be a problem. Now they tell us his kidney was probably too old when they could have mentioned that earlier. Im still fighting off rejection and have a dialysis tube in my heart. Peo0le love to say how easy it is to donate and receive transplant, but its really not. It is a big deal.
https://www.pushkin.fm/podcasts/playing-god/why-cant-i-buy-a-kidney
why does having an income change the morality?
I donated my kidney, and found the staff at UCHealth to be awesome. If you're in the Colorado area I would recommend going through them. When I went through the intake, they did not require a CT unless some of the other tests gave them a reason, but that may have changed or may be different depending on your surgeon. I am happy to talk with anyone who's interested and has questions. I donated three years ago, and have had exactly 0 issues since my recovery from surgery, which took about a week for the acute stuff and about 2-3 months to get back to my pre-surgery level of activity.
The Dylan Matthews article was also instrumental in my choice, and I 100% agree with the quote:
> As I’m no doubt the first person to notice, being an adult is hard. You are consistently faced with choices — about your career, about your friendships, about your romantic life, about your family — that have deep moral consequences, and even when you try the best you can, you’re going to get a lot of those choices wrong. And you more often than not won’t know if you got them wrong or right. Maybe you should’ve picked another job, where you could do more good. Maybe you should’ve gone to grad school. Maybe you shouldn’t have moved to a new city. So I was selfishly, deeply gratified to have made at least one choice in my life that I know beyond a shadow of a doubt was the right one.
I feel like donating has raised my floor of how good my life is; no matter what else happens, I did a really good thing that I'm proud of.
BTW, at my very first real "job", circa 1994-95, like my first month, I TOTALLY fell for the "urban legend where you have one-night-stand with hot stranger and wake up in bathtub full of ice with kidney missing" chain/scam e-mail. I forwarded it to the entire company as a DIRE warning.
Boy did I feel stupid.
So, seeing it referenced here, fills me with warm and complex shame, and deep affection for my younger self. I feel closer to you all.
B
Performative nonsense.
You had this operation so that you could possess an experience you feel unabashedly good about.
You have failed.
If you had children, you'd never do this.
Actually, a practical question for Scott, since he got around a loophole. Some time ago I tried to sign up for a bone marrow donor list. (It sounded like an obviously right thing to do, and, besides, people seemed to think I would be a valuable addition to a special list, simply because I declared (truthfully) that my mitochondrial DNA is almost certainly Amerindian - that, of course, is massively non-special in my place of origin.) Unfortunately, my answers to the questionnaire made me non-eligible - since I had had melanoma in situ a few years back, I had to declare that I had had once had cancer. Question - what is right and what is possible to do in this situation?
Possibilities:
- Tell a technical lie by marking "no" on "has had cancer" rather than checking "yes" and scribbling "but it was melanoma in situ more than two decades ago"
- Just try again while being truthful, it's been more than two decades by now (the donor thing happened well over ten years ago)
- I should have just tried to sign up through other channels
I can see how the general rule is completely sensible here, but I hope we can also see why it shouldn't apply here (it's essentially a certainty that the cancer cells never made it out of the mole; the probability of the contrary is microscopic compared to everything that could go wrong with a bone-marrow transplant).
Bonus question: do things like which subgroup the straight maternal line goes back to actually matter for compatibility purposes?