It costs an arm and a leg..or kidney: legalizing organ sales

[JBJ]

Just throwing this out there for some catch up reading.
Previous SB thread about Mandatory Organ Donation that seems to be echoed in the last dozen posts or so.

[jules.LT]

Thank you. This made me check the wikipedia article which didn't even acknowledge that opt-out systems have a positive effect on donations.
I had to fix that (thank you Google Scholar).

[sourmìlk]

sourmìlk: OK, so if your plan doesn't disrespect people's opinions, it disrespects actual people. As you yourself just said, the point of your plan is to avoid giving people a chance to make the decision themselves.

Uh, no. They still have the ability to make the decision themselves. The layout out of the form simply changes what people default to: it's just formatted in a way less likely to creep people out about organ donation.

[Silknor]

sourmìlk: OK, so if your plan doesn't disrespect people's opinions, it disrespects actual people. As you yourself just said, the point of your plan is to avoid giving people a chance to make the decision themselves. By your own admission, the intent is to prevent people who would otherwise disagree with you from making an informed decision.

IF default options have such a massive effect on the eventual decision as some here have claimed, doesn't that suggest that many people are not making an informed decision after a careful weighing of the question? Maybe it's because they don't care. Maybe it's because they don't have much of an opinion and so defer to the collective decision of society. Maybe it's because they see the default as the norm and social pressure pushes them in that direction. Maybe it's because they don't want to dedicate the time to the decision.

In the case where there's no default, if listing one first (either on top, or on the left) causes a significant change in the outcome, does that mean you're trying to prevent people from making informed decisions if you put your preferred option in the favored place? And before you claim this sounds implausible, such an effect has been found even in elections: http://www.jstor.org/pss/3449782

[jules.LT]

IF default options have such a massive effect on the eventual decision as some here have claimed, doesn't that suggest that many people are not making an informed decision after a careful weighing of the question? Maybe it's because they don't care. Maybe it's because they don't have much of an opinion and so defer to the collective decision of society. Maybe it's because they see the default as the norm and social pressure pushes them in that direction. Maybe it's because they don't want to dedicate the time to the decision.

My feeling is that in this case the "apathetic" are mostly just eeked out at the question.
On second thought, forcing people to tick *something* is likely to make them even more uncomfortable, and therefore not be in a state to make a reasonable, informed decision.

Then if all presentations will slightly distort people's opinions, why not make it easier on them to make the right decision?

[PAstrychef]

That would assume that the decision you want them to make is the "right" one.
Most people just don't think about organ donation very much, and if the change was to an opt-out policy, few would care. Those who did would have thought about it enough to check the box.
I do dislike the overall commodification of so much of our lives, and our social structure. Despite all of the discussion of market value of organs, I suspect one reason selling them is looked down on is the feeling that such actions should be undertaken for altruistic reasons. Having an opt-out system may also allow for the feeling that if this person was stupid enough to ride a motorcycle without a helmet( for example) then at least the organ harvest will cover the costs of the wasted medical treatment they used at the ER and in the ICU.

[jules.LT]

Let's say I said "the choice I/we/the state/the common good would likely call right" rather than "the right choice"

[Qaanol]

Or even, “The choice that the state has a vested interest in supporting, as it values the health of its citizens.”

[hawkinsssable]

The thought that the poor would suffer more with a legal organ market than they do now is murderous idiocy. Remember, about a dozen people on the kidney wait list die every day. There's more at stake here then posturing or envy.

Let's look at the small number of studies that have actually been done on kidney sellers (or "vendors") worldwide. There aren't very many, and there are huge gaps in the literature, but there are enough- with remarkably consistent results- to be able to make some solid conclusions.

There's a LOT more information in these than I mention, and it all supports my case, but I'm going to be as concise as possible.

Large studies with over 100 participants

Goyal et al- Economic and Health Consequences of Selling a Kidney in India
A cross- sectional survey of 305 vendors in Chennai, India, with a 100% participation rate. 86% of participants reported a deterioration in their health status after nephrectomy. Vendors were typically worse off financially as a result of vending- average family income declined by one third, even as the average family income in the area increased. The negative financial effects became more pronounced over time. 79% would not recommend selling a kidney to others.

Zargooshi- Quality of Life of Iranian Kidney 'Donors'
A study of 300 vendors in the Iranian, regulated, system. 97% participation rate. 65% experienced negative effects on employment. There were increased marital conflicts in 73% of vendors, and 70% felt isolated from society. 71% had severe depression, and 60% anxiety. 80% were dissatisfied with postoperative physical stamina, and effects on general health were somewhat (22%) to very (58%) negative. 79% of vendors did not attend followup visits due to poverty. Half of the vendors would lose greater than 10 years of their life and 76% to 100% of properties to regain their kidneys, and 85% would definitely not vend again.
This article has some very interesting- and moving- quotes from vendors.

Navqi et al- Health Status and Renal Function Evaluation of Kidney Vendors
A study of 104 Pakistani vendors. It found a very high rate of hypertension and compromised renal function, suggesting that vendors are at risk of renal impairment and failure in the long term. The only other large study that has measured the (objective) health status of vendors is currently unpublished (Tanchanco et al, cited in Padilla, "regulated compensation for kidney donors in the Philippines"), but it has had similar results.

Codreanu et al- The Long- Term Consequences of Kidney Donations in the Victims of Trafficking in Human Beings (BTHBS) For the Purpose of Organ Removal)
Actually, I'll include this, too. It's a conference paper based on research among 30 Moldovan kidney sellers/ victims of organ trafficking. There was a substantial incidence of CKD and hypertension, and the renal function of the remaining kidney deteriorated much more rapidly than what would be expected from physiological aging. This could have some pretty serious long- term health consequences for vendors.

Navqi et al- A socioeconomic survey of kidney vendors in Pakistan
98.8% believed that their health had declined in some way since nephrectomy. 88% reported no postvending economic improvement. Many vendors remained in bondage post- vending.

Budiani- Saberi and Mostafa- Care for commercial living donors- the experience of an NGOs outreach in Egypt
82% of participants believed their health had deteriorated since nephrectomy. 90% felt socially isolated, and 94% of vendors regretted selling their kidney. Negative financial and psychological impacts were also revealed through interviews and peer support groups, but these were not surveyed.
Budiani- Saberi also presented results from a similar Egyptian study at some conference (can't be bothered looking up the details), and they were very very similar.

Mendoza- Kidney black markets and legal transplants- are they opposite sides of the same coin?
A study of 131 Filipino vendors. 60.9- 68.9% believed vending did NOT improve their financial condition.

Mendoza- Price deflation and the underground organ economy in the Philippines
61.3- 69.3% of vendors reported lingering issues performing labor- intensive work. The results from these two studies are consistent with that found by Yea in a smaller, ethnographic study of Filipino vendors ("trafficking in part(s): The commercial kidney market in a Manila slum) Yea reports some incredibly serious difficulties continuing to do labor- intensive work post- nephrectomy, due mostly to stamina problems but also the stigma associated with vendors.

Mendoza- Columbia's Organ Trade: Evidence from Bogata and Medellin
Over 80% believed they did not realise any material or lifestyle improvements from selling an organ. Two- thirds reported lingering physical problems performing labor- intensive work, and 40% reported deterioration in health status due to problems or complications such as hyptertension or infections. Only 13.9% reported mental issues, and only 21.9% reported emotional issues.

Malakoutian et al- Socioeconomic status of Iranian Living Unrelated Donors- A Multicenter Study
This is the only large study of vending populations I'm aware of that claims vending improves the economic situation of vendors, and that the majority of vendors do not regret their act. These conclusions are based on questionnaires filled out BEFORE vending, and BEFORE the health/ financial/ psychological/ social impacts would have been felt.

Smaller ethnographic studies
I'm not going to go into depth here, but there are some very good, small ethnographic studies that should be read by anybody that wants to give an informed opinion on the experience of vending a kidney. These are:
Moazam- Conversations with Kidney Vendors in Pakistan: An Ethnographic Study
Cohen- Where it Hurts: Indian Materials for an Ethics of Organ Transplantation
A lot of what Scheper- Hughes has written, but there's so much, and a lot of it overlaps, so it's hard to recommend a single article.

Being qualitative rather than quantitative, these studies can go into greater depth about the actual experience of selling a kidney, and the depression, trauma, social isolation, and stigmatised life that follow. Moazam also gives a very compelling explanation of why vendors almost NEVER receive follow- up care, even when they are offered it (and this point comes up again and again, everywhere around the world)- it's because, subsequent to vending, they are angry at and distrustful of the doctors who would do such a thing to them.

There are counter- arguments and counter- examples to the conclusions outlined above, but these are anecdotal and based on individuals, not groups. And at least one well- known counter- example, from the New York Times, has been proven to be an outright fabrication. (see Scheper- Hughes, "Parts Unknown")




So no. The experiences of kidney vendors are NOT trivial. Legalising a market would very seriously harm the most vulnerable people in society- people who are already suffering from poverty and structural violence.

tl;dr Selling a kidney has negative effects on the physical health, physical stamina, psychological wellbeing and social wellbeing of vendors. This is a big deal.

[Vaniver]

Let's look at the small number of studies that have actually been done on kidney sellers (or "vendors") worldwide. There aren't very many, and there are huge gaps in the literature, but there are enough- with remarkably consistent results- to be able to make some solid conclusions.

Indeed, we can make the solid conclusion that black markets are terrible.

Beyond that, it's not clear how much of the Pakistani or Iranian experience would apply in the US. Looking at the first Navqi study you mention, the occupation data between vendors and donors suggests that any comparisons between the two groups is at best weakly suggestive. I mean, two thirds of the Pakistani vendors were slaves, and 90% of them were illiterate. That most of them remained bonded after selling their kidneys is an indictment of the economic system they are trapped in, not their ability to liquidate their biological assets.

I will agree with you, though, that when you remove one of your kidneys, you negatively impact your health. In the US and developed world, kidney donors are healthier than the general population after their donation, and only tiny percentages regret it- but that's almost certainly because they were healthier than the general population before their donation. It should also be mentioned that kidney donors responded better when the donor was related than unrelated, which suggests the US vendor experience will probably be worse than the US donor experience.

That said, people should not be prevented from selling their health. We let people work in coal mines (and it's a lot safer in the US than in, say, Pakistan or Iran). I also suspect that the health gains of recipients are larger than the health losses of vendors, meaning that it's still health-promoting to allow organ sales.

[Abgrund]

What if people were offered a financial incentive to opt-in? No one would be compromising their health by selling their organs, and it wouldn't be limited to kidneys. The majority of people would still live long enough to wear out their own organs and would be a write-off, but the payment needn't be large - I bet most 18 year olds would settle for $50. It's not like they'd have anything at all to lose.

Also, maybe the government could provide free motorcycles to everyone who opts-in. Just a thought.

[hawkinsssable]

Beyond that, it's not clear how much of the Pakistani or Iranian experience would apply in the US. Looking at the first Navqi study you mention, the occupation data between vendors and donors suggests that any comparisons between the two groups is at best weakly suggestive. I mean, two thirds of the Pakistani vendors were slaves, and 90% of them were illiterate. That most of them remained bonded after selling their kidneys is an indictment of the economic system they are trapped in, not their ability to liquidate their biological assets.

It's a good point, and I definitely agree you can't compare Pakistani bonded labourers with the US poor. But I think (and unfortunately I don't have any hard data to support this, so feel free to prove me wrong) that the vendor populations of some other countries- say, the Philippines, or Iran, or India, or Egypt- would have a lot more in common than those in the US. Across the board, vendors weren't able to improve their economic situation- they would usually vend in order to pay off debts, and then end up back in debt immediately afterwards. One of the Mendoza studies shows that the bulk of Filipino vendors are in the second- lowest economic bracket, and are intermittently employed doing manual labor. Most of the rest are permanently unemployed, homeless, beggars, etc. I assume that there are plenty of indebted US citizens working seasonal labouring jobs or begging on the streets. This is definitely the case in Australia.

I'd argue that for most vendors "the economic system they are trapped in" is neoliberal capitalism, mixed with varying degrees of corruption. And this is the same worldwide, including in the US.

Finally, I don't think that their inability to escape poverty is the main reason why vendors regretted selling their kidneys. After all, over half of the Iranian donors would willingly give up 75- 100% of their property, and ten years of their life to get their kidney back. I think the ensuing isolation, social stigma, anxiety over the remaining kidney, and feelings of having done something wrong are the main factors vendors regret their decision, and I'm not sure how this would be different in the developed/ developing world.

That said, people should not be prevented from selling their health. We let people work in coal mines (and it's a lot safer in the US than in, say, Pakistan or Iran). I also suspect that the health gains of recipients are larger than the health losses of vendors, meaning that it's still health-promoting to allow organ sales.

The second claim- "it's still health- promoting to allow organ sales"- would be true of a lottery system where people are arbitrarily chosen to give up all their organs to people on the waiting list. The first one I think comes down to how much you value, say, autonomy vs predictable harms to sellers. And that's a big question.

What if people were offered a financial incentive to opt-in? No one would be compromising their health by selling their organs, and it wouldn't be limited to kidneys. The majority of people would still live long enough to wear out their own organs and would be a write-off, but the payment needn't be large - I bet most 18 year olds would settle for $50. It's not like they'd have anything at all to lose.

They wouldn't, but their families potentially would. The entire reason families are offered the final say in whether or not their loved one donates their organs is because cadavers of loved ones have huge, weird, complex social and religious meanings attached to them. And I think that the families would probably, maybe especially, still say no if their loved one only became a donor for $50.

So you'd have to override family consent to have any real impact, and I don't think that would go down very well. I think it would be better than actively harming vendors, but it's still not an easy solution.

[Vaniver]

It's a good point, and I definitely agree you can't compare Pakistani bonded labourers with the US poor. But I think (and unfortunately I don't have any hard data to support this, so feel free to prove me wrong) that the vendor populations of some other countries- say, the Philippines, or Iran, or India, or Egypt- would have a lot more in common than those in the US. Across the board, vendors weren't able to improve their economic situation- they would usually vend in order to pay off debts, and then end up back in debt immediately afterwards.

It's difficult to translate a stock into a flow, and it's harder to do the poorer you are (especially in the developing world, where starting a legitimate business or investing is limited by poor legal systems and financial knowledge). If the payment were an annuity instead of a lump sum, it might benefit its recipients more.

I'd argue that for most vendors "the economic system they are trapped in" is neoliberal capitalism, mixed with varying degrees of corruption. And this is the same worldwide, including in the US.

Bankruptcy laws like the US's make debt-slavery nearly impossible (thanks to the legislation passed under the Bush administration, student loan debt now sticks with you until death. At least it doesn't pass to your children, but that's still problematic).

Neoliberalism isn't a conversation for this thread, but I'll just comment that I don't think the problem is neoliberalism; the underlying reasons the system is troubled are the same reasons that neoliberalism founders in much of the developing world. Instead of starting with strong property rights, many reformers simply sought to reduce the public sector, which is rarely the right way to go about things.

Finally, I don't think that their inability to escape poverty is the main reason why vendors regretted selling their kidneys. After all, over half of the Iranian donors would willingly give up 75- 100% of their property, and ten years of their life to get their kidney back. I think the ensuing isolation, social stigma, anxiety over the remaining kidney, and feelings of having done something wrong are the main factors vendors regret their decision, and I'm not sure how this would be different in the developed/ developing world.

I suspect that if they had managed to escape poverty, they would be far more satisfied and their social network would approve of the decision much more than they did when it didn't lead to escaping poverty.

The second claim- "it's still health- promoting to allow organ sales"- would be true of a lottery system where people are arbitrarily chosen to give up all their organs to people on the waiting list. The first one I think comes down to how much you value, say, autonomy vs predictable harms to sellers. And that's a big question.

Well, I don't see a problem with a lottery system so long as it's voluntary. That's our current system- choose to be an organ donor or not, and then your number either comes up or not as you go about your daily life. When it comes to predictable harm, I'm willing to let people take that on, particularly if it primarily impacts them. I think there are strong benefits to helping them predict that harm- if vendors regret their decision more than they regret other large life decisions, then something about the vendor system needs to change.

So you'd have to override family consent to have any real impact, and I don't think that would go down very well. I think it would be better than actively harming vendors, but it's still not an easy solution.

If the difference between opt-in and opt-out is as large as opt-out's proponents claim, that suggests that people mostly don't care; and so a quick cash payment serves pretty much the same role as an opt-out system but transfers some of the benefit to donors.

[Abgrund]

So you'd have to override family consent to have any real impact, and I don't think that would go down very well. I think it would be better than actively harming vendors, but it's still not an easy solution.

I have no problem with overriding family consent. It's not like my relatives own my friggin organs. If the family fusses too much, I figger they can get to be donors, too.

[hawkinsssable]

If the payment were an annuity instead of a lump sum, it might benefit its recipients more.

Maybe. But an annuity prevents sellers from a) getting rid of debts immediately, and b) investing in a small business. Plus, to be worth it, the annuity would have to more than make up for the long- term decline in employment income. In any case, the only study I can think of that actually examined the difference between annuities and lump sums on vendor outcomes found that vendors typically did better with the lump sum.

I suspect that if they had managed to escape poverty, they would be far more satisfied and their social network would approve of the decision much more than they did when it didn't lead to escaping poverty.

I can see why you'd think that, but- uh- that's... not how it works. At least, not according to the piddly amount of evidence available. Vendors in Pakistan (Moazam) and Bangladesh (Moniruzzaman, a currently unpublished study) hide their intention to sell a kidney from their families even before selling. Vendors and vendors' families in India get taunted for their choices (Cohen.) Taunts like "one- kidney" are common elsewhere in the world, too (can't remember the study.) A lot of this is tied to religious beliefs- vendors in Egypt (Budiani- Saberi & Mostafa) and Bangladesh (Moniruzzaman) fear that they will not go to heaven because they have sold a part of their body.

And then there's the crushing fear of living life with only one kidney- a fear which is fair enough, considering the increased rate of complications, health side- effects, and deaths among kidney- sellers. There's a sense of feeling like "half a man" and "half a person" that seems to be connected to losing a body part for the sake of money (Moazam) that seems to be entirely disconnected from "oh no, I did not achieve my economic ambitions". And there are plenty of stories of individual vendors not realising 'how attached' they were to their organs until they had sold them, and then having difficulty forgiving themselves for the sale. Here, have a quote-

Peasants and workers in Northeast Brazil put it more simply when they say: "Eu sou meu corpo!", I am my body. The disilussioned kidney seller, Paulo, said he forgave himself for selling his kidney because he really didn't know how attached he was to the "little thing" (coisinha) until it was gone and it announced its absence as a constant itching at the site of his wound, even 2 years later. "I have learned one thing", he said. "Even though I have two of them, I will never sell one of my hands." (Scheper- Hughes, "The Ultimate Commodity")

Again, very few researchers have actually gone so far as to ask the question "why did you regret selling a kidney?", and fewer have done in- depth ethnographic studies. And I'm sure that there is a relationship between depression, regret and failing to eradicate debt/ improve your financial position. But it is definitely not the only factor, and I'd argue it's not even the main factor. Making a bit more money is certainly not going to fix everything listed above.

Plus, you're still going to have to explain how a one- time operation (maybe two or three time, if you also sell a liver fragment and cornea) that reduces the stamina and strength of those who sell their kidneys, a group that typically finds employment doing manual labour (or, you know, are plain unemployed) will help vendors escape poverty in the long- term.

As for the idea that their social group/ family/ etc would approve if they DID improve their financial situation? Prostitution is legalised here in Victoria, Australia, and we certainly have a lot of brothels, but whoring is hardly considered a respectable profession by anybody. From what I've read, the bulk of prostitutes are attractive international students who are unable to find a job (with flexible enough hours for study), and they certainly hide their 'career choice' from their family.