Compensation for Donor Gametes (and other bodily parts and fluids)
* Warning: this post contains a spoiler for Kazuo Ishiguro’s 2005 book, Never Let Me Go. I’m not sure what the shelf-life is on spoilers. I mean, if you haven’t read the book in six years, isn’t it your own damn fault if it’s ruined slightly for you?
Amit Gupta of Photojojo was diagnosed recently with Leukemia. People immediately started using social media in order to find him a bone marrow match, the difficulty being that bone marrow needs a very close match (unlike donating blood), the best bet coming from either a family member or someone within your community. Because Gupta is of South Asian descent, a community that has a smaller representation on the National Bone Marrow Registry, it is even more important to get additional people to agree to be swabbed and checked for a match.
In order to entice people to donate, Seth Godin (the Internet guru) offered to give $10,000 to anyone who became a match and donated to Gupta. Michael Galpert matched that, raising the amount to $20,000. But financial compensation for organs or tissue is illegal under the National Organ Transplant Act.
With $20,000 at stake, the cause did indeed take on new urgency. Instead of just passing on news that Gupta needed help, people started bragging #IswabbedforAmit on Twitter. The money also made for a sexier news story. The website TechCrunch drove new waves of interest with an article headlined, “#IswabbedforAmit Offers Up 20K To Find A Bone Marrow Donor For Startup Founder Amit Gupta.”
There was only one problem. The offer was illegal.
Under the National Organ Transplant Act of 1984, better known as NOTA, it’s a federal crime to give or receive “valuable consideration” for any transplantable organ or tissue, specifically including bone marrow. (Expenses incurred in making a donation, including not only medical costs but also travel and lost wages, are exempt.)
On one hand, you can see why the law was passed: everyone should be on equal footing with receiving tissues and organs. But you can’t fault Godin’s reasoning because he’s absolutely correct — money moves people:
So he [Seth Godin] wrote a post on his own blog offering to pay $10,000 to anyone who became a match for Gupta and made the stem-cell donation, or to give the money to that person’s favorite charity. The offer, he says, was “a chance to say to my readers, ‘Hey, I care about this. A lot. Money where my mouth is.’”
He picked $10,000 because, he says, it’s “enough money to matter to both the giver and the recipient, without being enough money to sue over, cheat over or corrupt.”
People are working to overturn this law as it applies to bone marrow donation, placing it in the same category as blood or gametes — both of which can be compensated. And people need to remember that other people will be helped by this along with Gupta. As more people register to be a bone marrow donor, other people who are searching for a match will have a larger pool from which to find a bone marrow donor.
People get squeamish when we think about donation. I have to admit that I am guilty of delaying some necessary oral surgery for a year because I couldn’t decide how I felt about using donor tissue (in the end, I opted for donor tissue which has a faster recovery period, and yes, I still crave clementines even though I never ate them prior to the surgery — isn’t that bizarre?). As much as I would use donor eggs myself, it’s not as easy or quick an answer as to whether I’d be someone else’s egg donor.
There was something beautiful in its awfulness within the situation of Never Let Me Go, where people were being raised to be donors. The book is about specially-produced children being given this amazing life filled with beauty and art, with the intention of harvesting all their organs in young adulthood. They are mindful of their purpose, and while a few are scared, most understand it is their lot in life. While it’s obviously barbaric to create people solely to harvest their organs, what gave me pause was more the idea of knowing when and how you would die, and making people live with that knowledge their entire life. It wasn’t the organ donation itself. I couldn’t stop tossing around in my mind what was worse: having a beyond fantastic life up until young adulthood and then dying, or having a terrible life full of struggle all the way through old age but getting to live a long life. Is it quality or quantity?
And how do we encourage people to become donors if we’re not going to create a Never Let Me Go situation? Because we need organ donors and tissue donors. We need blood donors, and this community is very familiar with our need for gamete donors. Pure altruism doesn’t work; we’ve already seen that we can’t get people motivated to donate just by asking them to donate.
I am pro-financial incentives when it comes to all bodily donation — though I think that the financial compensation should come from specially created philanthropies that fund-raise and provide the compensation rather than individuals in need (or their friends). Think of these organizations in the same way we look at political organizations that are established to get a person into office. Instead, these organizations would be established to get people to donate — they would gather the money to compensate donors, raise awareness, hold registry drives.
Donations are, by their very definition, gifts without compensation. I fully agree with anyone who argues that donors who receive compensation are not donors by definition; though I also argue that donor is an antiquated word that no longer holds meaning in our society. Political donors give money with gain both tangible and intangible in mind from access to positions within an administration to simply having your desired party in place when policy is being decided. Philanthropic donors gets a building named after them after they cough up a ten million dollar check. It’s not that there aren’t people out there doing something for nothing, but most people want recognition of their gift, if not financial compensation.
If it helps, we can rename bodily donors “organ/tissue/blood product/gamete suppliers” instead.
The United Kingdom, by the way, recently tripled the amount that egg donors could receive in order to provide incentive for women to donate. The money is not payment but instead is compensation for the risk and time lost by donating. Is it all in the way we phrase things? Can we find things palatable if we just tweak the language?
What about the yuckiness of feeling as if life is being bought or sold? Frankly, there is plenty of yuckiness in the world that we’ll need to discuss in addition to this topic such as the fact that our medical system is a for-profit system, benefiting off the health woes of society. That our pharmaceutical companies do not make drugs out of the goodness of their hearts, but to turn a profit. Our medical system in and of itself is not noble when you start looking at places where people profit off of other people’s misery.
What about the fear that people will be exploited? That the poor will be driven to donate in order to make money while the rich will never need to part with any of their bodily fluids or organs. I think it demeans the intelligence of people and our ability to make choices. If I need money, there are a multitude of ways I can make money beyond going through rigorous testing, injections, and painful surgical procedures. Bodily donation is certainly not a quick buck. I think that if we looked at who has been moved to sign up to be a bone marrow donor due to Godin’s (and others) financial incentive, we wouldn’t be looking at the most impoverished slice of America. We’d be seeing, in fact, a lot of people who have access to computers and are invested in the Internet.
Organ donation as well as the bone marrow registry and blood banks suffer greatly from the lack of financial compensation, and I think with the exception of an altruistic few, these programs only exist as well as they do because people are willing to donate when a life is at stake. It may be driven by fear of their own loss or a sense of guilt knowing that they had the ability to save someone. Is it more ethical to have our donation system driven by fear and desperation than financial incentives?
Gupta’s friends have got around the law by offering now a $30,000 reward simply for a match. The person doesn’t need to actually go through with the donation — they will receive the money just by being a match. This money will get hundreds or thousands (or possibly tens of thousands) of extra people to agree to be bone marrow donors. Other people will be helped because of Gupta’s plight too, finding their own match in this now larger pool of people. Which begs the question: is this really ethically wrong? And what is ethically wrong about financial incentives when it comes to donating body parts (as long as the playing field does not become skewed towards the rich having more access to donors, which doesn’t happen in this case).
Would you be more willing to donate an organ, tissue, blood product, or gametes if there was a financial incentive? Would you be less likely to do so if you knew that you’d be financially compensated simply for giving up non-essential organs, tissue, blood or gametes?
13 comments
I donated blood my entire adult life, until infertility, RPL, repeat surgery and all the painkillers I need to take put an end to that. I was on a bone-marrow donor registry, while I was still young and healthy enough. I have signed up for ALL my organs to be used, if any of them still ARE of use, after I die. I would have been downright offended to be offered compensation for what was, after all, in the case of the blood donation, an hour or so out of my life and very minor discomfort, in exchange for the warm glow of knowing I had genuinely, truly, unequivocally, helped a fellow human being.
If the donation involves surgery and time off work, I can understand being compensated for the inconvenience and missed hours earning money, but I still think I’d’ve donated bone marrow for free, if I’d ever been matched.
It upsets me that people will happily consider going through all the discomforts of a major donation for MONEY, when they wouldn’t do it for love and compassion. But what else can we do? People badly need that kind of help. If the human race isn’t as yet compassionate and loving enough to donate out of sheer fellow-feeling, how else do we get what we really need for a person’s survival, or a family’s survival? It seems to me the money thing is an ugly and depressing necessity. And, yes, I think fear of loss, guilt, etc. are actually nobler, more humane motives for donating than mere financial gain. Doing such important things for mere financial gain and no other reason has lead to dreadful problems, when organ donors decided they were scared of the surgery after all and backed out, or when surrogates have realised love and child-bearing is more complicated than they thought and have either refused to give up the child or horribly regretted giving up the child. Egg and sperm donors have been known to back out at the last minute, or demand custody, quite clearly because they began the process out of financial desire, and had not factored love, generosity, compassion, into their decision at all, and were blind-sided by it. Similarly, some few people who have ‘bought’ the services of a surrogate or gamete donor have, just occasionally thank heaven, treated the human being that was giving them something so precious, as a commodity, a servant, and demanded too much, too intrusively of them, all because they began by thinking of it all as a financial transaction and forgot the visceral strength of love and protectiveness towards the offspring of one’s body.
My point being, financial compensation may well be fair, and deserved, and the only way to raise enough interest in donating, but it doesn’t make for the best, most successful, donations, and can create many more problems than it solves.
Such a huge question. Let me start small.
I think spoiler warnings are always polite. But I take your point that if you haven’t seen the original Star Wars there’s a limit to how upset you can be if someone accidentally tells you that the rebels lose and Bobba Fett ends up ruling the galaxy for the Dark Side in a surprise twist.
I think the fear of exploitation is realer than you do. Some people do not have your wherewithall. Some people just lack perspective. We know that people do riskier and crazier things for less incentive. We should be wary of that.
But the risk you haven’t mentioned is the risk to the recipient. If you pay people to give tissues there is this fear that the desperate elements of society will lie about their medical history to make themselves good candidates. Some bodily tissues present little risk to the recipient. Some can be quarantined (sperm is quarantined, for instance). Some tissues or procedures may not lend themselves so well to such protections.
There’s a whole subject on this and I just heard my icecream arrive. I’m sure you understand 😉
To conclude hastily, then – I think there has to be work to increase tissue donations of all kinds, and I’m vaguely insulted by the notion that the average person can’t make their own decisions about risk and reward. But direct payment is problematic. I’m not actually sure what the answer is. Probably a payment to be typed and put on a register is a very good answer. Then people can make the decision to donate or not, altruistically, without further compensation, when called upon. After all, it’s usually just the old “not getting around to it” that lets us all down (even with cadaveric donations).
Bea
Oh, P.S., May makes a lot of good points about things that I agree with but haven’t echoed. It’s a really tricky area, and I think there’s a lot more to it than what’s in your post here.
Absolutely more complicated than what is here. Difference between a blog post and a dissertation. :-). But it makes such a good discussion.
Josh donates blood regularly because it’s easy. The people come to his workplace, take his blood while he takes a break, and leave. How can we make sign up easier? And if sign up were easier, would people carry through and actually donate if they were matched. That’s also the problem. There are more people on the registry than would actually donate.
Oh yes, I didn’t think you were under the impression that your post was exhaustive! (The icecream was good, btw. New flavour.)
A lot more people on the register = at least some more donors, which is good. It’s not going to be every person carrying through, for sure, and indiscriminate adding of people to the register vs committed donors who are likely to follow through will dilute results. It would be interesting to see an economist and possibly also a psychologist run a few experiments on that one.
I guess what I’m aiming at is trying to change the default position, sort of like the opt-in vs opt-out argument for cadarveric donations (so you have a default opt-in position instead of a default opt-out, and people can freely choose to opt out, but they have to go to the effort of changing their status to opt-out instead of the other way around.) There are some ethical concerns with this approach as well, but I think it reaches a good balance. In broader terms, the school of thought has been described as “libertarian paternalism”. A big tool is keeping choices free, but changing the default position to yes instead of no.
Making signup, swabbing, sampling, etc and subsequent follow-through easier is definitely on the right track. Bringing the sign-up procedures and paperwork to workplaces or similar is a good idea. Making it more attractive by offering incentives to sign up (even if the incentive is lottery-style as in this case, most people get a chance at 30k rather than an actual payment) – well, there’s an argument there. Follow-through with bone marrow I think would be high because there is a specific person needing treatment when you are matched, rather than just “x number of car accident victims or haemophiliacs or whoever” as with a blood donation.
I’m starting to spout just random thoughts now and badly need to sleep. It is a good discussion.
Bea
Lots of good pointers, ideas and questions all around. I just don’t know what to write that would really add much to the conversation.
I only started donating blood a few years ago and it was a great feeling to do it just because it would help someone. No compensation needed, although the sandwich and juice/tea afterward was nice. 🙂 Unfortunately, as long as we are TTC and up to 6months after breast feeding (if we get that far), I can’t donate..unless I fibbed a bit. (I’ve thought about it.)
But what I really thought about the entire time I read the post and replies is Alice Pyne and her Bucket List of getting everyone in the UK (and world?) to sign up to be a bone marrow donor. She’s an amazing and courageous 15 year old battling a terrible disease. I like her idea of how to get people to sign up to be bone marrow donors. http://alicepyne.blogspot.com/
This is a fantastic discussion, Mel. Many of my points have already been covered, but here’s my take. I think a reward for a match to a specific person is similar to offering a reward for your lost dog. Many more will show up with a dog, hoping for a reward, but if it’s not your dog and you turn them down, there’s no guarantee they’d give the dog to his proper owner if that person’s not offering a reward.
The problem with valuable compensation is not just coming up with the reward money, but also paying for the increased wasted time, labor and supplies. The more the volume of supply increases, the more opportunity for an unfit ‘donor’ to slip through the cracks and being disqualified in product testing, rather than the initial screening process. This is a loss of collection materials, collector’s time, storage space, testing materials, and tester’s time, along with the expense of discarding the contaminated unit.
We don’t have enough altruism yet to expect complete honesty in return for compensation. I don’t know how many people turned and left when I worked for the blood center when they found out that they’d be paid in Cokes and Little Debbies instead of cold hard cash. Not to mention the disqualified donors who would try any means they could to get in, just for a tshirt. And now, they don’t even give out tshirts, it’s points to use in the online store.
There are a lot of faults with any proposed system of compensation, but I’d have to blame most of them on greed and lack of public understanding, not on the compensation itself. I think rewards for matching and donation would be great, if the playing field were level, but I don’t see how that could happen in my lifetime.
Boy, these are some deep questions. All I can think of are the words to the spiritual “If living were a thing that money could buy, you know the rich would live, and the poor would die.” Which pretty much sums up how I feel about it. If we make the step to paying for bone marrow and organs, there will be those who receive them because they have the money, and there will be those who don’t. I would be LESS likely to put myself on a registry because someone is willing to pay me 10 grand. If there is a poor little girl in Chili looking for a match, I would be more likely to do it. Call me a socialist, but buying life doesn’t sit well with me.
I am pro financial aid too…I am a mother of a 4 month old DE baby. I live in Canada and thus our laws make it illegal to compensate egg donors. As such…our DE programs are virtually non-existant and thus we chose to go to the US for treatment where our donor received compensation. And I consider myself lucky as we were able to go to a country for IVF care rather than stake the health of myself, the donor and the potential unborn child in a country where the IVF treatment is not bound to strict guidances and practices like they are in the US and Canada. I believe that compensation should be regulated so that egg donors do not take advantage of IF couples. Just my two cents…
I’m, at the end of the day, a ruthlessly practical soul, so I can totally not see an issue with this. This is an excellent notion, in theory. People need organs. People die because altruism is as motivator only for a few. That is the key point, that the majority of society NEEDS motivation. And to make organ donation work for more, you need an exponentially larger database.
Now, for the more pesky practicalities- who pays? Is there financial compensation at two levels- to enter the registry and to then donate organs/blood?
In my utopian and simplistic world view : there should be a small financial incentive to enter the registry, and a larger one to actually donate- and there should be a fund available to pay for anybody who needs an organ (it should not be only the rich get it) and the evil insurance companies would be the ones doling out the funds for everything. Sigh. Life is so much simpler when you are thinking about an abstract concept and not trying to figure out the practicalities!
BUT- if there is nobody to pay for the people who do not have the funds, then I’m STILL ok with some guy like this offering it up to save a select few. Its not like people with financial and societal resources are undeserving- a human is a human life, and we should save whoever possible.
Also, I’d point out- even if derelicts with questionable health/lifestyles did show up to sell a liver/kidney, they would be carefully screened and turned away if they don’t qualify, nobody would transplant organs without say, checking for Hep C first!
I disagree with you about the fear of exploitation not being founded. There are countries in this world where people are very much coerced into donating organs, thereby depleting their own length or quality of life, because the amount of money is too large to turn down given their life circumstances. That doesn’t happen in the U.S. with most things but I have met young women who were investigating donating eggs (though none of those I’ve seen ended up donating) because the amount of money was too large to turn down. However, on behalf of many friends and the general IF brother/sisterhood, I am so grateful that the money is enough to motivate them to donate, because unlike surrogacy, blood donation, organ donation, etc., altruism doesn’t seem to be enough to motivate most people to donate eggs.
I used to donate blood all the time not only because it was easy as you describe with Josh, but because it was posh. Whenever I’ve done the Red Cross I’ve had to lie on a hard table in an enormous room with dozens of others, getting stale donuts or pretzels and a dixie cup of juice afterwards; every single time I’ve ended up with a huge bruise at the puncture site. The place I loved to donate (which was connected to my workplace at the time) had comfortable phlebotomy lounge chairs; very skilled nurses instead of phlebotomists; a huge, marvelous spread of all kinds of foods; 5 kinds of juice, milk, tea, coffee, espresso; and the nurses would make you hot chocolate (“do you want whipped cream or marshmallows?”). I donated blood for altruistic reasons, but I did it often and in the location I did because it was niiiice. I could have made my own hot chocolate at home or bought myself a muffin, but it felt like my contribution was respected. I never felt respected at the Red Cross and in fact sometimes felt like I was at the DMV or something. Oh and my donation dreamland went by appointment, no waiting in line for an hour like the blood drives. And you had a card that got stamped and if you donated a certain number of times (50, I think? I forget) you got to go to special secret parties and at 100 they put your photo on the wall and I could go on. If I still lived there, I’d go back to donating every two months like clockwork. I saw a sign for a blood drive last week and my first thought? Ugh, I don’t feel like the hassle.
I really don’t know. I mean, my children were conceived with donor gametes, and I had absolutely no qualms about them being compensated. Of course, I didn’t pay them directly; I paid an organization a large sum which then used part of that to pay the donor. In the case of my egg donor, in particular, I didn’t think of it as paying for her EGGS so much as paying for her time and the risks of having a surgical procedure. I think it’s telling that the eggs were hers until the moment they were fertilized, at which point they became my embryos.
I haven’t ever donated blood (among other issues, I haven’t ever weighed enough!) but would happily do so for no compensation. I’d also like my organs to be donated, if possible, after death. But thinking about being a living donor (as in the case of bone marrow)….I don’t know. I don’t think payment is the right answer necessarily, except if framed in the way egg donation is, to donate GENEARLLY but not tied to a specific recipient. Buying marrow, or an organ, seems a very problematic thing indeed…
I was a frequent blood donor before I started visiting tropical countries (i.e., malaria zones) regularly which got me banned. I am also registered as a marrow donor, although I’ve never been matched. So, I obviously think that altruism is enough to encourage some people (those like me) to donate, some of the time. However, before I successfully joined the national marrow donor registry, I tried once before, and they were actually CHARGING people to join. They were just asking potential donors to pay for the costs of the genotyping (the DNA tests to see if you match with the potential recipient), but the fee (I remember it being large, but I was very broke at the time, so it may have been $50) was enough to keep me from registering, even though I was totally willing to donate bone marrow. So, I also think that financial considerations can be enough to stop people from donating out of sheer altruism, even if the altuism is there. So, I don’t think it’s as simple as “paying the donor = buying the tissue.” I was reading an article in the NY Times today about adoption, and one of the commenters (oh, why do I read the comments?) said that if you are paying for the adoption, you are buying the baby. I don’t agree with that, but it is the same kind of logic as saying that if you are paying the egg donor, then you’re buying the eggs. The fact that money is changing hands doesn’t mean that human tissue is being bought and sold. In an adoption, you are (in theory at least) paying adoption facilitators for their professional services. In egg donation, you are (in theory at least) paying the donor for her time and effort, not her eggs. The fact that some donors might actually be in it for the money doesn’t negate the fact that being paid makes it possible (whether logistically or psychologically) for genuinely altruistic donors to donate. Similarly, the fact that adoption facilitators are paid doesn’t mean that they’re all evil baby-stealers. Humans are complex, and I don’t think that our motivations can be easily boiled down to altruistic/not. I don’t think that the ends always justify the means, but I do think that if SMALL financial incentives give people who were already generally favorably disposed toward donation the incentive to get off of their duff and do it, then I think that’s a good thing.
But if I turn out to be a match for Mr. Gupta, I’ll give him my marrow for free.