Highlights From The Comments On Kidney Donation
[original post:My Left Kidney]
1: Comments From People Who Are Against This Sort Of Thing
2: …From Other People Who Have Donated Kidneys
3: …From People Who Have Received Kidneys
4: …About Opt-Out Organ Donation
5: …On Radiation Risk
6: …About Rejections
7: …On Polls About Who Would Donate
8: …On Artificial Organs
9: Other Comments
1: Comments From People Who Are Against This Sort Of Thing
Stephen Pimentalwrites:
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.
Sorry, I’m going to do the jerk thing here and accuse Stephen of being wrong about his own internal processes.
How did Stephen come to value bodily integrity, as opposed to all the other possible things you can value like wearing green clothes, or having a prime number of dollars in your bank account? Surely the answer is something like “most violations of bodily integrity are bad”. Getting stabbed is bad. Having someone forcibly sterilize you is bad. Getting a disease that makes your internal organs rot away is bad. “Value bodily integrity” is a useful heuristic for avoiding bad things.
And Stephen admits there are “a thousand and one exceptions”. Later in the thread, he lists some of these: blood donations, haircuts, laser eye surgery. I predict he would also consider vaccination, pacemaker-implantation, and contact lenses to be valid exceptions. How come I, an outsider without access to his moral reasoning, can predict what exceptions he’ll allow? Probably because he allows as an exception anywhere benefits > costs.
If he holds a rule “preserve bodily integrity” because he notices that helps him avoid bad things - and if he makes exceptions whenever there are cases where preserving bodily integrity imposes costs, or prevents a benefit - then I propose he’s using it as a heuristic for what he really wants, which is something like trying to stay healthy and safe while balancing that out with satisfying his other values. People tend to crystallize heuristics at different levels, and maybe he’s chosen to crystallize this one here. But I bet we could come up with lots of cases he hasn’t considered before, and find that the heuristic really isn’t that crystallized - if someone invents something new which is approximately as body-integrity-violating but also approximately as beneficial as vaccines, Stephen will support it.
So rather than give up and say “the heuristic has been crystallized here, we’ve got a unsolvable moral difference”, I’d rather say that kidney donation still emotionally feels really scary and not beneficial to Stephen, he prefers not to do it, he can’t come up with a great utilitarian case for not doing it, so he falls back on a semi-crystallized heuristic, which he wouldn’t crystallize as hard in other cases.
I run into this problem myself a lot, but I solve it by saying “I don’t have a great argument against doing X, but it feels scary and I can’t quite make myself viscerally appreciate the benefits, so I’m not going to do it”.
That is: a lot of people insist on defining the moral law such that they are following it maximally at all times. Nobody really follows the moral law maximally at all times, so this means people end up endorsing completely crazy moral principles like “it’s morally wrong to donate your kidney”. I think it’s easier to just relax that constraint, have a flexible and reasonable view of the moral law, and admit you don’t follow it perfectly.
…really you don’t even have to do that. I find the morality/axiology distinction helpful here. You can have a concept of morality such that it’s pretty weak and you’re more or less following it correctly, while maintaining a concept of axiology where you’re not a perfect saint doing the maximally beneficial thing at all times (and that’s fine).
I donated my kidney, but I’m probably not going to donate a lobe of my liver (even though this is also mostly safe and also helps people in need). This isn’t because there’s a real distinction about which parts of my body are vs. aren’t sacred, it’s just that I guess I’m ethical enough to do something moderately hard and painful, but not to do something very hard and painful. If anyone gives you grief about admitting this, ask them how much of the axiological law they’re following.
The Lone Rangerwrites:
Yeah this is what I was thinking the whole time reading this article. Like, great, you have a bunch of studies and stuff (you know, the things that are constantly being dinged here for being full of fraud or just plain old incompetent) telling me that having my body cut open and removing an organ I’m using isn’t a problem.
And I don’t believe them. Sorry, but generally speaking if I have a thing, it’s because it evolved to be there despite the costs of growing it (modulo the appendix?).
That’s why people don’t donate kidneys unless it’s to their family. It’s clearly risky. A bunch of discredited health people saying it’s not risky isn’t gonna change that - COVID showed clearly that they are the sort of people who will lie at the drop of a hat if they think it’ll make people behave in ways that are somehow more “pro social” regardless of actual risk.
…or maybe I’m being unfair to Stephen. Here Lone Ranger demonstrates a different reason to stick with coarse-grained heuristics even when there’s evidence that they fail in your specific case: you don’t believe the evidence, you don’t trust the people presenting the evidence, and you suspect the whole thing is an op. This is epistemic learned helplessness, and it’s adaptive in a lot of situations.
I find this helpful in thinking about one of the other topics I brought up: evaluating charitable interventions. If you’re very mistrustful and want to stick close to your heuristics, you might suspect any charity that seems to be having too easy a time of shirking its duty.
The more I think about this, the more it explains. I think a lot of people have a heuristic of something like “if you’re making a profit, you’re probably screwing someone over”. Thus for example being against building housing, because developers make a profit, so they must be screwing someone over, so the only reason anyone supports housing must be because they’re in the pocket of Big Developer. I’d always heard people say stuff like this, but I’m trying to really put myself in the shoes of someone who can’t evaluate any arguments, refuses to try, relies entirely on heuristics, and the main heuristic they know is “if you do well, you’re probably screwing someone over.”
Me, I’m the opposite. I find it almost funny to violate heuristics. It’s like bungee jumping. You have a heuristic that jumping off a cliff is generally bad for you. But you’ve found a special case where it’s actually fine. That’s what makes it exhilarating!
But I think this is also part of what I mean about normalizing something. One heuristic everyone shares is that new, untested things are dangerous. Once you know five or ten people who have done a thing and seem to be doing well, it doesn’t seem as scary anymore. The first person who bungee jumped must have had a lot of trust in the physics. Now, however many decades later, I can bungee jump without knowing the physics at all.
Kronopathwrites:
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/
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/twentysidedtale/?p=54058
https://www.shamusyoung.com/twentysidedtale/?p=54513
Here’s to your continued health.
Michael Wattswrites:
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 resent being treated as the dupe of an ideology that I helped form. I don’t get actual credit for inventing EA, but I was there at approximately the time they were inventing it, I supported the invention, and (like a lot of other people who were there) I considered it a formalization of things I had believed since long before I was old enough to verbalize them properly. You don’t kill your cattle on the full moon while chanting unless you’ve heard of other people doing that, but it might occur to someone to try to figure out how to do the most good even if they haven’t been brainwashed into trying. I’m more surprised that so few people find it to be an intuitively obvious goal.
George (blog) writes:
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
If I’m getting anything wrong, obviously you should correct me on the general principle of promoting truth.
Otherwise, I find it interesting that so many people feel protective of potential kidney donors and want to protect them from self-sacrifice. This isn’t selfish (they’re trying to protect someone else). It’s not exactly altruistic (it’s preventing an act of altruism which I think everyone agrees is probably net positive). So what’s the psychological motive here? This isn’t mysterious at all to me intuitively (I can imagine doing the same thing in some circumstances) but it sure is hard for me to explicitly model.
Gary Mindlin Miguel (blog) writes:
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.
Thanks, I hadn’t seen that.
The study doesn’t have a control group, which makes it vulnerable to the problem where some percent of people will always have chronic pain, and if it’s after something else, either they or an outside observer can spin it as “chronic pain after X”. Main predictors of pain include previous abdominal surgeries, previous pain, and psychological conditions. And here is a study showing that altruistic donors experience less pain than family donors.
I don’t want to dismiss this, and it might be the strongest argument against donating I’ve seen. Maybe I wouldn’t have donated if I’d seen it first (luckily, I don’t seem to be experiencing any pain). But I do wonder if it’s one of those things like whiplash where not believing in it is a protective factor.
2: Comments From Other People Who Have Donated Kidneys
Ivan Fyodorovichwrites:
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.
toolatewrites:
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.
Tylerwrites:
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 😉
I endorse all of this.
Jeremiah Johnson (blog) writes:
Scott, as a kidney donor: Welcome to the club! […] 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:
I’m happy to answer any questions anyone may have.
Infinite ScrollInfinite Scroll Special Edition: Kidney DonationOn June 25th, 2019, I donated a kidney. I had two kidneys going into that day; I have one kidney now. Yesterday marked my fourth anniversary of giving up that kidney. I didn’t donate to a person I know, but to a stranger on the kidney waiting list—a queue that, despite our ever-increasing medical mastery, remains depressingly long…Read more9 months ago · 8 likes · Jeremiah JohnsonFloris Wolswijkwrites:
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.
Ancient Sunsetwrites:
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.
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.
3: Comments From People Who Have Received Kidneys
Tugrul Irmakwrites:
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.
Gemma Jackwrites:
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. People love to say how easy it is to donate and receive transplant, but its really not. It is a big deal.
4: Comments About Opt-Out Organ Donation
Paula Amatowrites:
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.
I’d heard this claim too, but it doesn’t seem very well-supported. Here’s a paper:
Studies comparing opt-out and opt-in approaches to organ donation have generally suggested higher donation and transplantation rates in countries with an opt-out strategy. We compared organ donation and transplantation rates between countries with opt-out versus opt-in systems to investigate possible differences in the contemporary era. Data were analysed for 35 countries registered with the Organisation for Economic Co-operation and Development (17 countries classified as opt-out, 18 classified as opt-in) and obtained organ donation and transplantation rates for 2016 from the Global Observatory for Donation and Transplantation. Compared to opt-in countries, opt-out countries had fewer living donors per million population (4.8 versus 15.7, respectively) with no significant difference in deceased donors (20.3 versus 15.4, respectively). Overall, no significant difference was observed in rates of kidney (35.2 versus 42.3 respectively), non-renal (28.7 versus 20.9, respectively), or total solid organ transplantation (63.6 versus 61.7, respectively). In a multivariate linear regression model, an opt-out system was independently predictive of fewer living donors but was not associated with the number of deceased donors or with transplantation rates. Apart from the observed difference in the rates of living donation, our data demonstrate no significant difference in deceased donation or solid organ transplantation activity between opt-out versus opt-in countries. This suggests that other barriers to organ donation must be addressed, even in settings where consent for donation is presumed.
This isn’t an RCT and you would want to supplement it with studies about what happens when a country shifts from one system to the other. But they say:
Although historically some countries have observed impressive increases after introduction of presumed consent, such as Belgium, others have fared badly with either no difference or an actual drop in organ donation rates, including Singapore, Brazil, Chile, Sweden, and more recently Wales.
How is this possible? This paper tries to answer the question. It says that 54% of Americans opt-in to organ donation; this is a legally binding decision that family members cannot override later. Other Americans make no commitment either way, and family members can opt them in later (eg when they are in a coma, dying). In opt-out countries, opt-outs are final, and also family members can later opt people out on their deathbeds. Since in opt-in systems, family members often opt people in, and in opt-out systems, family members often opt people out, once the family has had its say opt-out systems may not have more donors than opt-in ones.
(this seems dysfunctional to me; it seems to rely on their being no clear way in the US system to opt yourself out so vocally that family members can’t override you, and vice versa in the opt-out system. I don’t know if I’m understanding this right)
But also, if you die of old age, your organs are too old and dysfunctional to be useful. The only posthumous organs people want are from people who die suddenly when young - but not too suddenly, or they won’t be able to collect the organs. The usual cadaveric donor is a motorcycle crash victim who was rushed to the hospital, put on life support, it proved fruitless, and then eventually doctors pulled the plug. There aren’t enough of those people to provide organs for everyone even if 100% of them opt-in, so the opt-in/opt-out distinction can only go a small part of the way to solving the problem in any case.
I still feel confused about this and would welcome someone looking into it further.
5: Comments On Radiation Risk
Bhavin Jankharia (blog) writes:
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.
People really need to read the footnotes before commenting.
“LDNT” stands for “linear dose no threshold”. It’s the assumption that 1 mSv radiation causes 1/1000th the amount of cancer as 1000 mSv of radiation (ie cancer risk is linear with radiation dose). This is important because it’s easy to measure how much cancer 1000 mSv causes (a lot), and we mostly assume 1 mSv doses cause cancer by extrapolation. If you can’t do linear extrapolation, 1 mSv might not cause any cancer.
And in fact, many people claim that your body has a certain amount of DNA repair ability, such that low doses of radiation carry zero or very low cancer risk. Many scientists have come out against LDNT, and many ACX commenters came out against it too, often in very strong terms. On the other hand, most official agencies, for example the National Institute of Health, still endorse calculating radiation dose risks with LDNT.
Two thoughts: first of all, I feel like this is the point at which we should be deploying our natural heuristics, like “getting exposed to radiation is probably bad”. There’s lots of widely-agreed-upon evidence that donating a kidney is pretty safe, but LDNT is still controversial and I would err on the side of caution.
But more important: Bhavin says there’s evidence that x-rays (0.1 mSv of radiation) are too low a dose to increase cancer risk. Fine. But there’s other evidence that doses of 100 mSv or above do increase cancer risk. So even if Bhavin is right that there’s a threshold, it’s somewhere between 0.1 mSv and 100 mSv. The multiphase abdominal CT used in kidney donation screening is 30 mSv. As far as I can tell, this is the most radiation-intensive medical test in common use. So even if you believe there’s some threshold below which radiation stops mattering, there is no reason at all to think multiphase abdominal CTs are below that threshold. If you have a uniform geometric prior on the threshold being somewhere in the space between 0.1 and 100 mSv, 30 mSv is 80% of the way (geometrically) through that space, so you should be pretty concerned it’s above the threshold. Nothing you believe about LDNT being true or false is an excuse to negate that risk.
smopecakesdoes claim to have some better numbers:
In his “The LNT-is-not-inconsistent-with-the-data Argument” post Jack has a graphic of about 30 dose profile cohorts that are prominent in the literature and history. The only ones comparable to 30 mSv acute seem to be the nuclear bomb survivors:
14,000 with 5-20 mSv acute dose showed an insignificant decrease in solid cancers
6,000 with 20-40 mSv showed the same as control
11,000 with 40 - 125 mSv showed an insignificant increase
16,000 with 125+ mSv showed a significant increase
Leukemia numbers were similar except the insignificant decrease group was from 5-150 mSv
This is the only post here that updated me even a little, since it included evidence that 30 mSV might be sub-threshold. But it seems borderline enough that I’m still sticking with my heuristic of “IDK irradiating my body seems high risk of being bad”.
6: Comments About Rejections
Seth Schoenwrites:
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.
Kristin (blog) writes:
God fcking 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…
Procrastinating Prepper writes:
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. […] 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.
That’s pretty bad, but I think I can beat it - I got an email from someone telling a story (won’t reveal details) about someone they knew. They got cleared and everything. Then on the day of the surgery, the nurses/doctors asked how she was feeling. She said anxious (about the upcoming surgery). They immediately cancelled everything and demanded she get six months of therapy to deal with her anxiety before they would consider letting her donate.
I hate lying and am against it. I’m aware that I’m a media public intellectual type person, which means I have a higher-than-usual duty not to lie. And I’m involved with effective altruism, which everyone seems to constantly suspect of lying, and I try to fight that reputation by being scrupulously honest and recommending others do the same. I hate ever recommending lying. But I also can’t in good conscience recommend telling the truth to these people. They seem to have totally disqualified themselves as decent citizens who deserve the benefits of the social contract. I do psych evals for surgery sometimes, and I’ve read the papers on how to do them, and the official criteria all seem pretty reasonable, so I have no idea where these people are getting this from or, how they possibly go so wrong. Still, transplant evaluation psychiatrists are now right there alongside Gestapo officers at your door on my very very short list of people who it seems probably ethical to lie to. I don’t know how it came to this (I assume it involves lawyers and bioethicists somehow) but it doesn’t seem satisfactory.
I received an email from a group called Project Donor. They help transplant candidates who were rejected turn things around so they can qualify. They provide weight loss, smoking cessation, and psychotherapy. If you made the terrible choice of telling the truth to a transplant evaluation psychiatrist, they seem like a good next step.
7: Comments On Polls About Who Would Donate
BRettywrites:
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.
Here’s a sort of daydream: some charity gets the list of the 40,000 people who are predicted to die next year for lack of a kidney. Then it chooses 40,000 random Americans in a 1:1 correspondence with the kidney patients. Then it sends each of those random Americans a letter, saying “Dear John, you have been paired with Bob Smith of Topeka, Kansas. He will die of kidney failure next year unless someone donates a kidney. We have randomly selected you as a potential donor. If you say no, we will not randomly select anyone else, and Bob will probably die. If you’re willing, please call this phone number.”
There’s some sense in which this charity would be doing zero work - just choosing random names from the phone book! - but it sure would be an interesting experiment. Would 25 - 50% of the people involved really go for it? I don’t know.
People would probably get very angry at this charity. Would the anger be justifiable? I can feel the urge to get angry with them. But all they’re doing is taking a background fact of existence and bringing it to the foreground.
The main challenges to doing this in real life are HIPAA (you can’t actually get a list of people who need transplants) and probably nobody would believe you if they just got a letter. If you think you have a way around these challenges, I’m not exactly urging you to apply for an ACX Grant, but any such application would certainly catch my interest!
Shaked Koplewitz (blog) writes:
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).
You can click here to make Google generate a random number 1 - 10,000.
demost_ writes :
I did register for bone marrow transplantation. There they screen huge databases for the best match, and you are only contacted if you are a best match. Which happens for less than 1% of registered potential donors.
This system works very well. If you are contacted and told that they particularly need your bone marrow because there is this one person who needs it, then I do believe that many people would say yes. Perhaps the 25-50% who answer yes in the surveys.
In principle, this could also work for kidneys. Build a huge data base, for each patient try to find the best donor, and ask them whether they would help this particular patient, because their help would work better than anyone else’s.
It’s almost a shame that kidneys are compatible between so many different people. Because that might be the main reason why the solution doesn’t work. (Even if chosen, you are not really a much better pick than many other people.) So the ethical pressure is diluted. We might have much less trouble to find kidney donors if they weren’t so widely compatible.
Or the solution does work, and we just need to try it.
8: Comments On Artificial Organs
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.
Tugrul Irmakwrites:
There is the lab-grown from ipscs to organoids to kidneys pipeline. Here they have trouble vascularising any tissue that grows, so the organoids start necrosing after they grow to a size where oxygen can no longer reach to them via diffusion. There are groups working to solve the vascularisation puzzle, which would be useful for everything, not just kidneys. But its hard. Also from these clumps of renal tissue, its hard to get higher order hierarchy. So in these organoids you have nephrons (which are the functional units of the kidney), but they are all connected to each other like spagheti, whereas in the actual kidney during development they connect through a branching structure, so that the urine can drain out from them. At the moment getting the right signalling is hard.
There are groups working on using pig kidneys. Pig kidneys on their own are not compatible with humans, there will be a very strong acute immune response that will cause necrosis of the kidney and rejection. So these groups change certain genes to reduce the immunogenicity of the pig kidneys. This is hard, there are some prime immune targets, which you can do things about. But there are a lot of antigens the immune system can target. Just from memory I think the most one could stay implanted in a non-human primate under strong immune suppression was a few hundred days.
There is our group at UMC Utrecht, and UCSF group working on a bio-artificial kidney. These rely on some kind of artificial membrane to act as a blood filter which is the job of the glomerulus in the actual kidney, and proximal tubule cells for the resorption of all the stuff we need that makes its way through the filter. Here 3 main challenges are; blood compatibility (the artificial membranes must be blood compatible so proteins must not adhere and block pores and thrombus must not form), strength (membranes must be very strong or designed in such a way as to have low stresses, even a micron scale fracture will take out the whole device), cells must keep alive in the bio-reactor. These are all very substantial challenges that I hope we can overcome.
There are also the chiral approaches which I think you linked to. The end result is a combination of some pig and some human cells which might be less of an issue immunity than the full pig kidneys I mentioned before but still has challenges.
There are a lot of horses in the race, I really hope we find a solution that can get people off dialysis.
9: Other Comments
BobaFloutist on HackerNewswrites:
> I respect the British organizers’ willingness to sacrifice their reputation on the altar of doing what was actually good instead of just good-looking.
Surely their reputation is a factor in their ability to do good? Optics sometimes necessitate sacrificing the “mathematically superior choice” for one that’s worse in the name of not pissing off a ton of people the support of whom you rely upon.
Oh man, do I have opinions on this (mostly written up at The Prophet And Caesar’s Wife, which I linked in the original post). I’m still not sure exactly what they are , but I definitely have them.
Suppose you think you’re a good person who is right about everything, and you want to improve the world. It seems like your first step should be to gather power. After all, the more power you have, the more world-improving you can do. And one species of power is optics, ie having people like you and want to cooperate with you. So it seems like you should maximize for good optics.
On the most spherical-cow-technical level, this is a great argument which is obviously correct. In the real world, I tend to notice that a lot of times when people deploy this argument, it goes wrong. Sometimes they spend all their time gaining more and more power and popularity, and never get around to using it for good. Sometimes the process of constantly optimizing for popularity changes them, and by the time they have it, they’re no longer a good person who should be trusted with it. Sometimes we discover they were never that good a person at all, and if they had started out trying to do object-level good, they couldn’t have done much damage, but when they start out trying to gain power and popularity, their misalignment gets worse and worse and ends in disaster.
Most people settle on a compromise solution. Something like: although you shouldn’t try to maximize being powerful and beloved, you should avoid giant pitfalls that make you totally ineffective or make everyone hate you, and maybe do some normal level of getting-out-the-word similar to comparable organizations. I think this compromise is basically okay. But it’s harder than it sounds to figure out where common-sense-reputation-protecting ends and power-seeking begins.
If you try to do good in the world, there will come a time when you have to choose between Intervention #1 which saves 50 lives, and Intervention #2 which saves 100 lives but decreases your approval rating 1%, potentially harming your ability to succeed at future altruistic projects. There’s no hard-and-fast philosophical principle which will tell you what to do here. You’ll decide based on who you are as a person. I try not to be too judgmental of anyone in this situation unless they go way way way outside the bounds of common sense.
I am sometimes judgmental of the people (not necessarily the commenter cited here, but people who are snider about it) who look at those people and say “Haha, you did bad optics, guess that means you’re not very rational , doesn’t it!”
(part of the point I tried to flail at in the original post is that one non-generalizable solution here is to donate an organ, get a +1% approval rating boost, then do the thing that saves 100 lives, and break even)
Daniel Bottgerwrites:
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.
This was another thing that moved me to donate: I am proud to be an American, where I have freedom of speech, freedom to take melatonin whenever I want, and freedom to donate a kidney. You’ve got to keep exercising rights if you want to keep them, and I’m proud my country has defeated the evil bioethicists on this one and kept this option open for me.
(The UK, Canada, Australia, and I think most other European countries also allow altruistic donation; Germany is a rare holdout here. Still, the US was one of the first, and I’m still proud of it.)