BA holders, rejoice.

July 25, 2009 7:18 PM

What can you with an anthropology degree? Bust an illegal organ transplant ring, apparently.

Meet Nancy Scheper-Hughes, a professor of medical anthropology at Berkeley who helped bust Levy-Izhak Rosenbaum, the kidney broker implicated in the huge New Jersey sting. Listen to an interview with Brian Lehrer.

posted by greatgefilte (43 comments total)

Take that, sociology!
posted by Saydur at 7:36 PM on July 25 [21 favorites has favorites]

Two thoughts:

First, did she come across this as part of her research? If so, did she break confidentiality and how have the university and her professional association responded to this? Has she done any interviews about her decision to break confidentiality? Don't get me wrong, I think she did the right thing, but it's not a small thing and I'd be interested to hear more about it.

Second, interesting that the poll to the side of the article offers "yes becuase it's your body" or "no, because it leads to exploitation" but no "No, because it creates a situation where people with money move the front of the organ donor queue."
posted by If only I had a penguin... at 7:37 PM on July 25

Anthropologists are bound by some sort of confidentiality agreement?
posted by nosila at 7:43 PM on July 25

Well I'm getting a BA in History and once I graduate I plan on dividing my time between writing articles for Civil War Fancier and infiltrating that meth kitchen on the edge of town.
posted by Avenger at 7:45 PM on July 25 [12 favorites has favorites]

Also, ACTION HUMANITIES SQUAD GO!!!
posted by Avenger at 7:47 PM on July 25 [24 favorites has favorites]

Anthropologists are bound by some sort of confidentiality agreement?

Yes, of course. Here is the AAA Code of Ethics, and here's Berkeley's Code of Ethics for Human Subjects Research. Any research conducted by someone affiliated with a university requires approval from an Internal Review Board which requires an application detailing how the researcher would deal with risks to subjects. Researchers have a responsibility not to harm their subjects (like landing them in jail, for example).
posted by If only I had a penguin... at 7:50 PM on July 25

My philosophy superpower is to find all and any flaws in any act, plan, or structure. Of course, this is a double edged sword sort of power; I never get around to actually thwarting evil schemes because I keep finding flaws in my own plans.
posted by oddman at 7:54 PM on July 25 [12 favorites has favorites]

Thanks, ...penguin!
posted by nosila at 7:58 PM on July 25

Researchers have a responsibility not to harm their subjects (like landing them in jail, for example).

Do researchers also have a responsibility to allow their subjects to harm others? (Like exploiting their economic and/or medical circumstances, for example.)

I'm setting aside as given situations where there's a major cultural disjunction between researcher and subject. That's clearly not the case here.

Do the same rules apply? If so, why?
posted by dogrose at 8:01 PM on July 25

Second, interesting that the poll to the side of the article offers "yes becuase it's your body" or "no, because it leads to exploitation" but no "No, because it creates a situation where people with money move the front of the organ donor queue."

even more interesting that 37% are ok with this

also, it took the fbi 7 years to do something about it after she tipped them off - maybe they didn't want to "interfere" with the free market ...
posted by pyramid termite at 8:04 PM on July 25

Do researchers also have a responsibility to allow their subjects to harm others?

No. Researchers' responsibilities as researchers are primarily to research subjects. The only responsibility to the public listed in that code of ethics is to disseminate knowledge accurately. Obviously as human beings researchers may feel a responsibility to prevent other people from getting hurt. This is why researching illegal activity is so problematic. I'd be interested to hear how she dealt with this conflict between her responsibility is a citizen and human being and the code of ethics she's required to follow.

Unless the research topic absolutely requires it, most researchers would avoid becoming privy to the kind of information that might be of interest to the police. I've heard of researchers who might become privy to such information being required to put in their consent forms (that subjects sigh) statements about what the researcher would do if they came to have such information -- i.e. if you're going to tell the cops if you find out X, you have to have them sign a form saying "if we find out you're doing X, we're going to turn you in."
posted by If only I had a penguin... at 8:12 PM on July 25

First, did she come across this as part of her research? If so, did she break confidentiality and how have the university and her professional association responded to this?

It's been years and years since I read it, but I'm pretty sure that in Death Without Weeping she wrote about how she came to reject the idea of herself as a detached, impartial observer and realize that she had ethical obligations to intervene on behalf of her subjects. I think this is an issue which she's thought about a lot.
posted by craichead at 8:16 PM on July 25 [2 favorites has favorites]

Prime Directive.
posted by Sailormom at 8:36 PM on July 25 [1 favorite has favorites]

Second, interesting that the poll to the side of the article offers "yes becuase it's your body" or "no, because it leads to exploitation" but no "No, because it creates a situation where people with money move the front of the organ donor queue."

Why would it lead to people moving to the top of the queue? If people were paid by insurance companies and doctors, and everyone was paid the same rate, then nothing would change.

The thing is, lots of people get paid for this. The doctors get paid, the hospital gets paid, the people who move the organs get paid, why shouldn't the donor get paid? It would likely increase the number of available kidneys greatly, and save a lot of lives.

There was actually a debate on some blogs about this, Starting with Megan McArdle. I didn't think too much about it beyond "Wow, Megan McAdle continues to amaze me with her crazy-ass libertarianism".

It seems like, if this were legalized, there could be some problems (like someone powerful might purposely manipulate someone with a donor kidney into a position where they needed the money, or something like that) but I have to wonder if, from a quantitative standpoint the benefits (vastly increased availability of kidneys) would be worth it.

Still, I find the idea of a society were large numbers of people sell their kidneys somewhat creepy)
posted by delmoi at 9:01 PM on July 25 [1 favorite has favorites]

(Oh and the other issue is quality of life. I don't think people should sell off their health, but I read somewhere that the quality of life isn't that greatly reduced after donating a kidney these days. If that were not the case, it would provide a much greater argument against kidney sales - since it would diminish the overall health and well-being of the poor in order to benefit the rich)
posted by delmoi at 9:03 PM on July 25

Kind of depends on the quality of the surgery and post-operative care, doesn't it? I can't see a guy willing to pull a gun on someone being too fussed about making sure the donor was booked into Mount Sinai.
posted by Ritchie at 9:34 PM on July 25 [3 favorites has favorites]

Wow, my anthropology degree only gets me yelled at by people with infectious diseases. This is what I get for not sticking through* to the PhD.


*I'm not good at grubbing for grant money.
posted by cobaltnine at 9:49 PM on July 25

Re: the question about professional ethics, my understanding (and what the article seems to say) is that the trafficker who was arrested was not one of her informants/subjects. Rather, she talked to people who had worked with the trafficker. So this isn't an issue of her turning in one of her informants to the FBI.

In general, the principle of complete confidentiality between the anthropologist and her informants serves to preserve a general trust of anthropologists in the communities where they do their research. Anthropologists need to be trusted in order to do their research effectively. Do Scheper-Hughes's actions here have the potential to undermine the public trust of anthropologists? My inclination is to say no -- though if the information could somehow be traced back to the informants, that would obviously be problematic.
posted by pluckemin at 10:06 PM on July 25

A few months ago I attended a great talk on the topic of illegal kidney markets -- in fact, I believe the term economists use for markets of that kind is "repugnant," meant to signify that the market deals in things that we feel ought not to have a price attached to them.

The problem with a proposal like DU's is apparently that there are currently places in, e.g., India, where a large portion of the population is both poor and a kidney seller*, and those places tell against the claim that the risks of selling a kidney are minor. In order for losing a kidney not to have a major negative impact on one's health, one has to have (as Ritchie suggested) access to good health care, which these people didn't. But if kidneys were simply sold on the open market, clearly it would most frequently be poor people without reliable access to good health care who sold their kidneys...quite a dilemma!

There are certainly ways around it, and I actually think that the ban on selling one's kidneys is not the best way to do things. But avoiding the exploitation that springs up in markets for such goods is very tricky business.


* It is still illegal to sell one's kidneys in India, but oversight is apparently lax enough that many people do it anyway.
posted by voltairemodern at 10:15 PM on July 25

The problem with a proposal like DU's is apparently that there are currently places in, e.g., India, where a large portion of the population is both poor and a kidney seller*

But, isn't the correct answer to those illegal markets to legalize and regulate them? For example, most people don't recognize the bad side effects of an illegal abortion as an argument to keep abortion illegal, rather they are an argument to keep them legal. With Alcohol and drugs, many people have the same view: legalize and regulate as a way to mitigate the harmful effects.

People can sell their plasma, their sperm, even their embryos (which requires surgery). In a regulated market, one could mandate that anyone who sells a Kidney be given proper medical care afterward. I obviously don't think people should be able to operate as "no questions asked" Kidney wholesalers. Rather it would be a direct donor to recipient transaction, or a donor to national health system transaction (so that rich donors don't jump the queue).

I'm not advocating that position, I'm just wondering what the arguments are against it. If there's a downside, is it possible to ban the downside directly, rather then banning the sale itself? Are there any downsides that can't be mitigated no matter what?

Still, it seems profoundly creepy. But that's not really a good argument against something.
posted by delmoi at 10:29 PM on July 25

* do.
posted by joe lisboa at 11:05 PM on July 25

I sort-of listened to the interview when it first broadcast on Brian Lehrer's show, and was shocked. While I think I agree with delmoi to an extent that people should be allowed to sell their own body parts, the racket in question here seems to fall short of acceptable business practices:

- vulnerable people were trafficked to the USA and only then told that they would be donating kidneys.
- if they objected, they were threatened with firearms.
- kidney donors were given $10,000 of the $160,000 that the hospitals paid for the kidneys (and presumably most of that was reclaimed to cover expenses in their trafficking).

A system with informed consent, in which the donors get the lion's share of the market value for their kidneys, I could maybe get behind.

I'm not sure how much I would accept for one of my kidneys.
posted by nowonmai at 11:12 PM on July 25

I don't see how insurance paying for organs solves the problem of a market for organs creating a situation where money allows some people quicker access to organs. At least not until everyone has insurance, every insurance plan covers organs, and every plan pays the same for an organ.

As for the argument against selling organs (even under ideal circumstances where money doesn't trump need in who gets organs), this was posted to the blue a while ago. The 1/4 is the relevant talk. The argument also applies to blood donations, by the way, and one of the pieces of evidence cited is that paying people to donate blood reduces the rates of donation. Basically, if you start paying people to do things, they no longer feel any moral compunction to do things. Moving things into the market devalues them.
posted by If only I had a penguin... at 11:25 PM on July 25 [1 favorite has favorites]

That's the real rub of course. Like in theory we should allow trade in elephant tusks that were harvested sustainably IE: from elephants that died of natural causes. But because you can't really differentiate between tusks from an elephant that had a stroke and one that had a bullet blow it's brains out we ban all ivory trade[*]. The evil (no more elephants) is worse than the boon (ecologically sensitive ivory).

[*] Sort of
posted by Mitheral at 11:25 PM on July 25

I don't see how insurance paying for organs solves the problem of a market for organs creating a situation where money allows some people quicker access to organs. At least not until everyone has insurance, every insurance plan covers organs, and every plan pays the same for an organ.

Yeah. I certainly agree that with the current healthcare system it wouldn't be equitable because only wealthy people have good insurance. A equitable healthcare system would be a prerequisite for me.

That's the real rub of course. Like in theory we should allow trade in elephant tusks that were harvested sustainably IE: from elephants that died of natural causes.

That's true, but it seems like it would be much easier to keep track of kidneys. Unlike elephant tusks, they're not really fungible. A kidney donor has to be matched with a recipient.

I didn't realize these guys were kidnapping people and holding them up with guns and whatnot. Crazy stuff.
posted by delmoi at 12:00 AM on July 26

Yeah. I certainly agree that with the current healthcare system it wouldn't be equitable because only wealthy people have good insurance. A equitable healthcare system would be a prerequisite for me.

Right. It's important that *all* Americans should have equal access to the spare kidneys of the third world.

Personally, I'd make it legal to sell your own kidney, but anyone who buys one or works with a bought kidney gets five years in prison.
posted by PeterMcDermott at 12:13 AM on July 26

Well I'm getting a BA in History and once I graduate I plan on dividing my time between writing articles for Civil War Fancier and infiltrating that meth kitchen on the edge of town.

I've got a BA in theatre, I'm just finishing an MFA in staging Shakespeare, and next year (I hope) I'll be starting a PhD whose topic involves programmatically distinguishing between the works of George Peele and William Shakespeare.

Basically, I'm Professor X up in this piece.
posted by Mr. Bad Example at 3:24 AM on July 26

The ethics of organ selling, buying etc is of more interest than what an anthropologist did or might do. He is but one person and did right or not right. The larger issues is the need for organs, who can supply them, who can afford to buy them, who are poor enough or whatever to sell or have them bought. There is of course a huge market out there. And China had been accused--with full proof--of killing of criminals and harvesting their organs for sale. Globalization.
posted by Postroad at 4:46 AM on July 26

Dr. Scheper-Hughes has a long history of becoming more involved with her research subjects than other anthropologists tend to think is strictly good or necessary for the field. It started with her work Death Without Weeping and has continued through her subsequent work.

This is a particularly controversial area within the field generally - issues of cultural imperialism, and imposing inappropriate social norms come to mind as part of the problem, not to mention issues of confidentiality and protection of sources - which is often made trickier because the anthropologist tends to be in a more privileged position than her research participants.

Do I, as a fairly affluent, educated anthropologist, conduct my research under ostensible neutrality and hope my 'objective' findings shine a light on the problems exposed throughout my research? Or do I use my affluence, education and whatever influence that gives me to help these people who are helping me to further my career?

Dr. Scheper-Hughes has made her decision, and is sticking to it. For her, her own personal moral principles trump institutional ethics. But what if her personal moral code did not jibe with our own and she bucked the institution?

(I don't have a firm stance on either side of any of these issues, but it's something I think about quite a bit... )
posted by palindromic at 4:56 AM on July 26

I don't have a firm stance on either side of the issue either, but I definitely think Jewish Organlegger Santa makes a fine Dick Tracy villain.
posted by aeschenkarnos at 5:36 AM on July 26 [1 favorite has favorites]

Also, ACTION HUMANITIES SQUAD GO!!!
posted by Avenger

Holy Injoke Batman, it's eponysterical!
posted by eriko at 5:39 AM on July 26

Good for Nancy.

She has long been a strong advocate for activist anthropology, for taking up tough moral questions in brutal situations -- infanticide among Brazilian sugarcane workers, AIDS internment in Cuba, revenge riots in South Africa. She's been a distinctive voice in the field for this -- pushing against the "ethical" standards (the "first do no harm" ones, basically) in many cases in pursuit of what she would argue are higher standards (I also believe she invokes her Catholic faith in articulating this view). She's a radical figure, a great -- great -- writer, and a fearless ethnographer. She's managed to piss a lot of people off, been thrown out of particular countries, and has plenty of opposition in the discipline.

Sort of proof of concept here.

If you haven't read *Death Without Weeping,* and you consider yourself well-educated, you should find a copy.
posted by fourcheesemac at 6:39 AM on July 26

Oh, palindromic sort of beat me to it, and more articulately.
posted by fourcheesemac at 6:40 AM on July 26

programmatically distinguishing between the works of George Peele and William Shakespeare.

As in with a computer program?

You gotta admit anthropology has a little more edge.
posted by fourcheesemac at 6:43 AM on July 26

I find the idea of a society were large numbers of people sell their kidneys somewhat creepy.

Back in high school, my friend Antoine was trying to scrape together enough money to go to some posh culinary institute in France. He decided, having both excellent health and a rare-ish blood type, to try to sell one of his kidneys to the highest bidder, and placed an ad in the Village Voice.

They put his ad in the personals section, under "Anything Goes," right alongside the tranny 3somes and scat parties.
posted by elizardbits at 7:30 AM on July 26

but I read somewhere that the quality of life isn't that greatly reduced after donating a kidney these days. If that were not the case, it would provide a much greater argument against kidney sales - since it would diminish the overall health and well-being of the poor in order to benefit the rich

Well, this is simply not true for third world organ sellers. My friend did his master's and PhD research on the illegal organ trade in Bangladesh , and found a number of disturbing things. Many people, sellers, buyers, and the general public, believe that life is essentially the same after the removal of a kidney, but that's simply not true. As you can see from the picture in the link, the surgery makes a very large cut. Moniruzzaman found that people were often brought to India from Bangladesh for the surgery, then sent home the same day on a third class train ticket. Sellers who had jobs found that they had to quit them in order to recover, since they don't have sick time. Recovery could take more than 6 months, during which time they often used up what little of the money they had received (most "buyers" give an advance and then don't pay the rest, so a person might be promised $1500, but only receive $600. Since it's illegal to sell as well as buy, there is no recourse for people who find themselves jobless and bleeding from a 1.5 foot wound with only $600 to support them while they recover).

Now, that's what I remember of his research, but I will go on to say that I suspect there are considerable more health implications for people who lose a kidney whose livelihood is based on hard labour. That is, even if you fixed the horrors described above, for a person who pulls a rickshaw for a living, the long-term implications of a surgery of this type may be much different than for a middle-class desk jockey in America who donates his kidney to his brother. The double-whammy of hard physical labour and poor access to health care in the third world should not be dismissed when considering the long term effects of organ selling.

My friend's suggestion for more organs on the donor list is quite different: currently we have an "opt in" program. He suggests and "opt out" program where consent is implicit unless you have specified otherwise.


(also, to the ethics of researching this stuff, Schepper-Hughes wrote an article about that, which is quoted and linked in this blog entry, via the discussion at Savage Minds.)
posted by carmen at 7:46 AM on July 26 [1 favorite has favorites]

Do you know anyone who has bought a kidney or other organ? I don't think I do, but I wonder.
posted by Nelson at 8:14 AM on July 26

As in with a computer program?

You gotta admit anthropology has a little more edge.

Not if I write it while snowboarding down Mount Everest and slamming a Mountain Dew. That's only if I get funding, though.
posted by Mr. Bad Example at 9:23 AM on July 26

I'm sure Mountain Dew will be glad to sponsor extreme dissertation writing events.
posted by fourcheesemac at 9:38 AM on July 26 [1 favorite has favorites]

I have received three kidney transplants; two from Living Related donors, and one from a Deceased donor.

I agree with Carmen's friend: what we need is an "opt-out" system for organ donation. There are many, many people waiting for organs, and most of them will never get one. In the case of heart and liver patients, this is a slow degenerative death sentence. In the case of kidney patients, waiting for an organ means living as a zombie on dialysis.

The only type of organ that can be given by a living donor is a kidney (although there has been progress in the case of livers). In any sort of donation system, balance must be found between the needs of the donor and the needs of the recipient. Obviously, we don't want poor people to be taken advantage of, as they have been here. At the same time, we don't want to endanger the lives or the health of people who are already very sick.

Currently, there is an extensive pre-donation evaluation process for potential donors. This testing attempts to determine three things: are the donor and the recipient compatible (e.g. is the recipient likely to reject the foreign kidney)? are the kidneys in good shape so they can help the recipient? is the donor healthy enough that they can handle major surgery and the loss of half their renal system? The evaluation can take up to 6 months in the U.S. (in my experience; YMMV). There are a lot of physical tests done: X-rays, blood tests, 24-hour urine collection, etc., as well as an extensive medical history. If you have a family history of diabetes, for instance, that would probably preclude you from donating a kidney. Other possible exclusion factors include heavy drinking, smoking or other drug use, and the presence of diseases such as HIV or Hepatitis C.

I am concerned that a financial incentive for donation (whether through private sale, insurance payout or government program) would induce potential donors to attempt to game the system. With $5k, $10k or especially $160k on the line, I think some people might lie on their medical history or attempt to fake certain test results. That could result in a number of deaths. The donors could be sued or prosecuted, but the damage will already be done.

I am also concerned that any system for selling organs would necessarily result in two classes of people in wealthy industrialized countries: rich people with all original parts who receive organs from the underclass.

That Bangladesh situation is awful. We do have one advantage in the US: the current standard for transplant nephrectomy is a laparoscopic procedure, which uses a very small incision, and has a correspondingly low morbidity. Donors recover faster and better than they used to with open nephrectomy.

For those of you who list yourselves as organ donors on your driver license: thank you! Make sure you tell your family that you want to be an organ donor, as their decision will trump anything written on a card in your wallet.
posted by sleepinglion at 10:33 AM on July 26 [3 favorites has favorites]

The July 27th issue of the New Yorker has a fascinating essay on kidney donors. Even without legal monetization, it manages to be an incredibly complex and weird subject. There's a lot of weird stigma that goes along with a consensual donation.
posted by redsparkler at 10:43 AM on July 26

The only type of organ that can be given by a living donor is a kidney (although there has been progress in the case of livers).

If I'm not mistaken, there are several other organs (e.g. partial lung, partial pancreas, partial bowel) that are now being transplanted from living donors. Exciting times, these!
posted by greatgefilte at 12:40 PM on July 26

Um, she has a PhD, not just a BA.
posted by Maias at 4:08 PM on July 26