You guys may be interested in Flynn vs. Holder, which is a court case attempting to strike down the federal prohibition on selling bone marrow.
If you could buy and sell bone marrow, all parties agree that that would happen more frequently than bone marrow donation. The side that believes that would be bad won.
(A brief sketch of the concern: if you allow money into the equation, either a) people who won the marrow lottery could extort money from folks who are dying or b) poor people would be hooked up to machines and have their vital juices sucked out so that rich people could live. A brief sketch of the argument for allowing bone marrow sales: the present law guarantees persistent market undersupply of bone marrow, which, with certainty, kills people.)
<For reference: I'm not making claim one way or another here, just presenting an argument. This doesn't reflect my personal view, I'm just trying to explain the logic behind disallowing people to sell their organs>
It's a moral minefield. When people get desperate for money, they're willing to do things that they might later regret. This is why things like loan sharks tend to be illegal (and why, one could argue, auto title loans and the like should be as well. In that case it's a matter of collective versus individual intelligence. Collectively, an auto title loan service is far more intelligent than an individual, and they are thus able to be predatory in their lending practices [to great success]).
I'm not equating selling your organs with loan sharking, but I believe it illustrates my point.
(Donating your organs to get yourself out of extreme financial hardship could be considered a form of duress. This is one of the classic arguments against prostitution.)
Not quite. The recent decision by the Ninth Circuit lets the prohibition stand as to bone marrow directly extracted from bones, but struck it down as to bone-marrow-derived stem cells extracted from blood. This should significantly increase the availability of donated bone marrow:
Whoopsie. I was unaware there was news on that front in the last 48 hours -- when I said "This side won", I meant "When drawing up the legislation twenty years ago."
I'll admit I haven't read the case you references, but once you build a financial marketplace around something, it will get controlled, manipulated and exploited. Why stop at bone marrow? Everybody's got a couple kidneys ... why not let people sell one? What about the donors who regularly give blood donations today? Would they stop doing so without being paid? I believe it's an oversimplification to just say that the current system kills people by design and that adding money will make it operate more effectively.
Not to fight this battle with you in the comments, but a) you only get two kidneys but bone marrow is, like blood cells, a replenishable resource and b) it is absolutely, unequivocally the case that paying people for blood, plasma, and gamete donations (all of which we do, but we're circumspect about saying so) increases the amount of people who are willing to participate in blood, plasma, and gamete donation.
The biology of plasma is different than the biology of bone marrow, which complicates things considerably, but the biology of plasma did not solve the plasma problem. We used to have plasma shortages, too, because plasma donation is inconvenient and strikes some people as "icky." So we increased people's willingness to engage in it by using our traditional method of encouraging inconvenient, icky things: we paid them money.
> it is absolutely, unequivocally the case that paying people for blood, plasma, and gamete donations (all of which we do, but we're circumspect about saying so) increases the amount of people who are willing to participate in blood, plasma, and gamete donation.
This is the only problem. It's false. Well ... it might be false. Extrinsic rewards ($10) tend to displace intrinsic rewards (I saved someone's life!).
If the reward is high enough, you will certainly get lots of donors. But if the reward is too high, poor people may get shut out.
Because of the intrinsic reward, it might be better if blood was donated. I'm not so sure about bone marrow though - if there's enough of a shortage (due to it being much harder to donate than blood), then it might be worth it. Poor people won't be able to afford it (or will be really screwed by the costs), but at least some people will get it. And donors won't feel the warm glow of having saved a life, but they will feel the warmer glow of a big fat cheque (as I'm assuming the extrinsic reward will be higher than the intrinsic reward it displaced).
As for organs, you could end the shortage now if you mailed out donation forms, and said that anyone who didn't sign on as a donor (after they don't need the bits, of course) would be shunted to the bottom of the list if they needed one later on.
I'm not a huge fan of the idea of paying people for bone marrow, but "poor people won't be able to afford bone marrow" is fairly irrelevant as an argument. Poor people already cannot afford to pay for any of the costs associated with a bone marrow transplantation. You have to destroy the patient's immune system to allow the donated blood cells to grow - which means at minimum, if everything goes very well, six weeks in a high-tech isolation room, being treated with extremely expensive antivirals, antibiotics and antifungals, getting all sorts of expensive diagnostics, highly paid specialists taking care of your around the clock, etc.
The last number I heard was, I believe, about 100,000 Euro if everything goes well. If things go wrong, you're looking at the ICU for ~10,000 Euro a day for a month or two, or maybe ten years worth of intense, state-of-the-art immuno-suppressive treatment...
Blood has a low cost to the donor, so the "feel good" intrinsic reward is high enough to keep the supply going. Adding a price will just make it more expensive for poor people who need transfusions.
Because kidneys are so expensive to donate, you can't rely on people's goodwill, so both poor people and rich people miss out. Of course, you would have to ensure that they wouldn't be sold to clear debts.
I'm not worried about risk, that's for the donor/seller to decide. Higher risk, higher money. It's no different than hazard pay for dangerous jobs.
But my understanding is that someone can only donate a liver once, even though it regenerates. Perhaps that just because doctors are uncomfortable with the risk of a second donation?
I don't agree that tissue renewability is the correct sole factor in determining whether said tissue should be for sale. I think that donor risk is much more important. I consider this to be a bioethical issue but I think it's also pretty political so I'll probably refrain from making much of an argument here.
I don't do liver transplant so I'm at the limit of my knowledge re: number of liver donations, but I would guess that it has to do with the fact that the donated segments do not regrow; the liver regains function, but not form.
As you've pointed out, the alternative for those who need these cells (but can't get them) is death. I agree completely.
But the argument for the other side isn't sound. Poor people (with the right haplotype at the right time) could become quite rich if we don't try to interfere with bone marrow sales. Do you know what I'd pay for cells that would save my life if I needed them? Quite a lot more than I paid for my car.
The only way to tell what will happen is to run a trial. That way we can stop conjecturing, and see what actually happens. My guess is it would work pretty well.
One interesting thing about Amit Gupta's efforts to get people to register their bone marrow is he's actually helping other people much more than he's helping himself. The key point is that everyone who needs bone marrow is more likely to find a match because of the additional registrants.
Serious question: is there a game-theoretic name for this? It's kind of the opposite of tragedy of the commons or free-rider. Amit's actions actually seems structurally similar to contributing to open-source software: he's trying to solve his own problem, but at the same time helping thousands of other people.
In any case, you should sign up - wouldn't it be great to save someone's life in this way?
>Serious question: is there a game-theoretic name for this?
From the view of evolutionary game theory he might be called a "neutrally fit cooperator" or "nearly-neutrally fit cooperator".
In public goods games cooperators increase the amount of public goods available to everyone, but if there is some cost to producing the good they can be subject to invasion by defectors. Amit's campaign definitely benefits everyone in the community more or less equally, but the cost to him (determined by the additional opportunities he might have had to find a donor for himself through some other means) are presumably quite low to the point where we can consider them to be zero. Since both cooperators and defectors pay nothing but receive the same benefit, they are equally fit and no relative fraction of strategies employed by the population is preferred (although having more cooperators should contribute to a higher overall payoff).
The interesting little twist to the story, if we are thinking in terms of evolutionary game theory, is that players that reach a certain payoff (e.g., by getting there transplant), leave the game with some probability! This is the opposite of what usually happens in games in evolutionary biology, since higher absolute payoff is typically associated with larger population sizes.
Not a game-theoretic name, but in evolutionary theory such behaviours with similar outcomes are called "kin selection" or "group selection". IMHO, the former is more on the point.
"But we’re sort of in wait-and-pray mode because historically, only half of South Asians who are tested actually agree to donate."
Not only is the chance of finding South Asians to get a DNA test very low, but that chance is further sliced by half because a matched donor can get cold feet.
I really hope that those people who were identified as a match come through for Amit (or others in need).
Look, if you sign up, you sign up to actually give marrow if there's a match. Period. Unless you're not healthy enough, there's no excuse for welching on a deal that involves someone's life.
No it's not like a blood donation.
It's misinformation like this that cause people to sign up to donate, and then back out when they find out what they really have to do. Bone marrow donation is a surgery. PBSC donation requires you to get injected with a drug for 5 days, and then have your blood drawn out from one arm, go through a machine, and passed back to you through the other arm. If you have thin veins it'll even require a central line (tube in your neck).
This is why Flynn vs. Holder is so damn important.
If the goal is to actually save human lives, more people need to choose to let doctors invade their bodies to take the cells they need, take the time off of work, away from their goals, etc. The only way that most people could do this for a stranger is to be compensated. I predict great things to come!
I'm trying to think of a dollar amount high enough to let somebody stick a tube into my jugular and extend my circulatory system outside my body for hours. I don't think I can count that high; unless I needed the money for fairly immediate survival.
It's not as bad as it sounds, though 6 hours is quite a while. Platelet donation is done this way (http://www.redcrossblood.org/donating-blood/types-donations/...), taking an hour or two each time, and there are donors who make a platelet donation every two weeks. The blood cools while it's being run through the machine so you get chilly, but donors generally just sit under a blanket and read or watch a DVD for the duration.
It appears that there are two methods: 75% of the time it is PBSC, which is the 6 hour long blood donation. 25% of the time it is through surgery under general anesthesia. The doctor decides on which one based on the patient.
Up until today, it was illegal to seal the deal (i.e., pay your donor). Now that people actually have a rational financial reason to trade a little bit of their own lives to strangers (needlesticks aren't painless, and donors need to sit for hours to actually donate the cells), they'll go through with it a lot more. The donors win, and the recipients win. That's a great thing!
Mike makes a good comment - The one thing that the article does not explain is that all swabs go into a national database. If you give a sample in a drive to save somebody that you know, you could end up getting a call 10 years later saying that you match somebody else on the other side of the country
Why should I care about this person, and how is it relevant to startups, hacking, technology, etc.?
"On-Topic: Anything that good hackers would find interesting. That includes more than hacking and startups. If you had to reduce it to a sentence, the answer might be: anything that gratifies one's intellectual curiosity."
> In the past... I started Jelly, worked with Seth Godin to start ChangeThis, brought BarCamp to NYC, started a co-op called House 2.0, contributed to a WSJ best-seller with Malcolm Gladwell, Guy Kawasaki and others, and started a venture-backed company called The Daily Jolt while in college. I enjoy camping.
He actually brings a point I've been wondering since the entire thing started: Why is he somehow more "important" than all the other people on the bone marrow transplant list?
Downvote me to oblivion if necessary, but this really is a genuine question which, by the looks of things, has the answer of: His life is more important than everyone else on the transplant list.
To answer your question, nobody is suggesting his life is more important. In fact, as is mentioned towards the end of the article, by getting more people registered through this relatively high profile campaign he is increasing the chances of finding a match for others in need of a bone marrow transplant.
"Why is he somehow more "important" than all the other people on the bone marrow transplant list?"
He is not more important in an objective sense. Most people would agree in an abstract sense that all lives are equally valuable, but would readily save their child rather than another if it came down to it. Why? Because they value the life of their child more than the life of another's child, and there's absolutely nothing wrong with that.
Amit, as a member of the startup community, is our child, as it were. Due to this commonality, we feel closer to him than 'faceless' people on the list. So your last sentence might read: "His life is more important than everyone else on the transplant list to us."
What makes you say the community is ignoring the faceless sufferers? Registering as a marrow donor isn't exclusive to one person, you could potentially save the life of a stranger decades from now. For the awareness he's raised Amit may potentially be saving many lives besides his own.
To me it's incredible that helping one person evokes so much shrieking about how many others that aren't being helped, what about those who never help anyone?
> What makes you say the community is ignoring the faceless sufferers?
I've never seen ONE "help so-and-so (who is not from our community) with money/bone marrow/whatever" thread on here. Only when it effects someone in this community does this community give a shit, and you can't deny that. And the irony, as I pointed out before, is that it's going to take someone most likely not from this community to save Amit. I really can't make it any more clear.
I just don't understand responding to someone helping someone else by demonizing them for the all people they're not helping. Amit is a member of our community, he's raised awareness for an important issue, what's the problem here?
And I disagree, the whole point of this drive is that the magic donor most likely will be someone mobilized by this community since there are so few potential matches as it currently stands.
Anyone else see the irony of a community fighting to save a person's life, while ignoring all the other "faceless" sufferers, when the life that they're fighting for probably depends on the good will of a "faceless", anonymous person? Serious question.
Since donors, once added to the database, can save anyone in need who's a match, it doesn't affect the outcome whether HNers join to save Gupta or a faceless stranger.
I guess what's upsetting you is that a community member makes people care enough to get involved, while faceless strangers don't make us care enough to get involved. This seems like the sort of position people realize is incoherent and unsustainable, once they analyze it.
There are a couple of reasons this case is different in a way relevant to HN community:
1. Amit's friends have been using current technology to campaign for the cause (e.g.: https://twitter.com /#!/search?q=%23ISwabbedForAmit) and this news proves the success of the campaign
2. Amit himself is a Hacker. He is one of us! Many people die each year, we don't discuss all of them like we discussed Steve Jobs.
3. He is helping build the database for future transplants
When I first saw his headlines a while back, I had the same question...
But there is a very reasonable answer - he is bringing to light a gap in the availability of bone marrow for his particular ethnicity. It is not that he is personally more important than anyone else... it is that he, and others like him, are under-served. Using his connections to raise this issue not only helps him, but should help anyone in his same situation.
He isn't, it just so happens that he is a member of our community.
I'd bet that your friends, family, and coworkers take a bit of an interest in your personal life. Amit's friends and coworkers just happen to be a very very large group.
In addition to the other answers, raising awareness and getting people to sign up to be bone marrow donors can potentially help a lot more people than just Amit.
Ingroup + prominence I'd guess, as in many communities. For example, if a well-known punk-rock guitarist had a similar issue, he'd probably get similar exposure in that community (more than someone not from that community, and more than a "mere" fan who wasn't a prominent guitarist).
Why is he somehow more "important" than all the other people on the bone marrow transplant list?
Does it matter? His situation is bringing attention to this, and getting more people to add themselves to the registry. Whether or not he is personally saved, it's likely that several other matches will be made as a result, so I'd say it's a good thing overall.
By my understanding, this isn't a matter of supply and demand, or him trying to "jump the line" by making a direct appeal to people - it's a matter of sheer volume, it's relatively difficult to find donors for anyone that match well, so having more people in the system is a good thing for everyone.
his life is as important as any other - however, he has done an invaluable service to the entire south asian community by taking on the issue of bringing more to the bone marrow registry. From any account, the campaign has been a revelation. He deserves to find a match, and live many more terrific years. So do others. But I'll be extra happy if he does too.
Right. I guess the thing that bothers me about the entire thing is that this is done at such a bigger scale than other similar requests, especially from the past.
Requesting help from a small group, like family is one thing, but requesting help from the internet doesn't settle right for some reason.
If you were facing death and your best hope at survival was crowdsourcing help on the internet you'd... what, politely decline to bother anyone in the internet community you've been a major part of? Skip the chance to raise awareness for something that could save the lives of many others besides yourself? Die alone knowing you saved someone half a second reading an HN headline that wasn't directly relevant to them?
The help they requested will go to help an entire ethnic group of people, not just one person. This effectively a massive charity operation using an individual story as a hook. I don't understand how anyone could possibly criticize this as being selfish.
"Why should I care about this person, and how is it relevant to startups, hacking, technology, etc.?"
I see it this way: He is a part of the start up community to which we belong to. If something affects one of us, we should try to help. We do not live in a vacuum where only code and startups are important and not the people who help make them.
I hope you are never in the situation where you need help. There could be a chance that someone from this community can have their life saved and you want to complain about it.
Just skip over the link if you dont want to read it. WTF. Its not hard.
Amit Gupta's influence on bone marrow registration will uncertainly save several lives over the next decades. The role of technology and the associated community is an important part of that story.
It's certainly one of the factors in my decision to sign up with the registry.
[http://marrow.org could use the touch of a UX designer, but the signup process is straightforward enough.]
Unless you think all the people upvoting don't fall into the good hackers category (and how could you know that if you did think so), that it is so highly upvoted should give you a clue.
If you could buy and sell bone marrow, all parties agree that that would happen more frequently than bone marrow donation. The side that believes that would be bad won.
(A brief sketch of the concern: if you allow money into the equation, either a) people who won the marrow lottery could extort money from folks who are dying or b) poor people would be hooked up to machines and have their vital juices sucked out so that rich people could live. A brief sketch of the argument for allowing bone marrow sales: the present law guarantees persistent market undersupply of bone marrow, which, with certainty, kills people.)