Donor Chains and the Legality of Compensating Kidney Donors: Critically Assessing Our Moral Intuitions

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Posted in: Health Law

Last month, The New York Times ran a story describing a relatively new but very promising approach to providing kidneys to people who need them:  donor chains.  The chains allow pairs of people—one person willing to donate a kidney and another in need of a kidney (but not immunologically compatible with the intending donor)—to become links in a chain of such pairs.  Through that chain, willing and compatible donors are found for each recipient.

People within a chain are able to achieve matches much more quickly than they otherwise would have been, and the chains accordingly save lives.  The chains are completely legal, moreover, because Congress has specifically provided that “paired exchanges” of this sort do not violate the National Organ Transplant Act (“NOTA”), the federal law that prohibits organ sale within interstate commerce.

In this column, I consider the following question:  Is there a meaningful difference between paired exchanges and kidney sales that would make sense of federal law’s permitting one and prohibiting the other?

The Use of Paired Exchanges in Kidney Donation

As reported, paired-exchange chains rely on a combination of altruism and self-interest.  There is ordinarily a Good Samaritan at the beginning of the chain, someone who decides that she wants to save a stranger’s life by donating a kidney.  She gets nothing tangible in return, beyond the reward of knowing that she has extended a lifeline to someone who might otherwise have been condemned to suffer through years of dialysis, followed by likely death from kidney failure.

At the moment, according to UNOS (United Network for Organ Sharing), of the approximately 90,000 Americans awaiting a kidney transplant, fewer than 17,000 will receive one in any given year, with over four thousand dying while still on the waiting list.  Furthermore, about two-thirds of donations that do come through are from deceased donors, though kidneys from live donors typically outlast kidneys from a cadaver.

Because people are ordinarily born with two kidneys but need only one, willing live donors are a highly desirable and largely untapped source for patients in need of a transplant.

The following hypothetical donor chain scenario illustrates how a donation chain works.  Let us call our earlier Good Samaritan Anna.  Barney needs a kidney, and his wife Carla is willing to donate one of her kidneys to save Barney.  But Barney and Carla are not immunologically compatible, so Carla cannot donate her kidney directly to Barney.  Rather than just having Barney join a waiting list, Barney and Carla can jointly enter the chain that Anna has begun, and thereby get priority on available, compatible kidneys within that chain.

Assume now that Daniel needs a kidney, that his sister Ellen is prepared to donate for him, but that the two are not a match.  Daniel and Ellen may join the chain that Anna began.  The process will continue, through the help of a database and programs managed by a kidney registry formed for this purpose.

As the number of pairs grows, matches begin to emerge.  And once everyone within the group is matched, the transplants can begin.  Each recipient receives a kidney in exchange for the kidney that someone close to him is willing to give on his behalf.  In essence, then, Carla is able to donate her kidney to Barney, even though her actual kidney is not biologically suitable for her husband.  One of the registries, begun by Garet Hill, reportedly arranged 175 paired-exchange transplants of this type last year.

Despite the Hope That Donation Chains Provide, Many Kidney Patients Are Left Behind

The paired-exchange chains give us reason to celebrate, because they supply a ray of hope for a population in dire need of kidney transplants.  The sad reality remains, however, that even with the exchanges, many people will continue to languish on waiting lists, as the demand for kidneys climbs, and the supply stays relatively stable.

To help the patients left behind, some have focused on encouraging people to sign donor cards and thereby supply organs—including kidneys—from otherwise healthy individuals who die in car crashes and other sudden tragedies that leave intact and functioning organs.  For most organs, a cadaver is the only plausible source, because a living person cannot safely part with, say, her heart or her lungs.

In the case of kidneys, however, live donors are a viable option, because transplant surgeries have become quite safe for the donor, and research suggests that people who have one kidney live just as long, on average, as people who have two.  (This may be because kidneys tend to fail in tandem, such that having two is not the organ equivalent of holding onto a spare tire.)   And as I discussed earlier, kidney donations from a live donor last longer in the recipients’ bodies than do donations from cadavers.

But with even donor chains falling far short of helping everyone who needs a kidney, many would like to increase the number of people willing to donate a kidney while alive.  One method for doing so would be to permit people to compensate kidney donors for their donations.

Considering a Market in Kidneys

In contemplating the option of legalizing a market in kidneys, many people have a viscerally negative reaction.  Arguments against organ sale are familiar:  Some of the people willing to sell a kidney might be mentally disordered and unable to truly understand and appreciate the implications of what they are undertaking.  Other willing donors might be so desperate for money that they would do almost anything for cash, and thus, when they donate, may be acting under a sort of duress or coercion that is inimical to the concept of meaningful consent.  And a market in kidneys could lead people to think of their body parts as commodities, rather than as components of their personhood—a view that could further hasten the commodification and sale of other items that ought to be considered “priceless,” including babies and sexual intimacy.  That process of commodification, some argue, could in turn cheapen the regard in which we hold ourselves and one another.  Unlike a house or a car, a kidney is not an “asset,” they contend, and thus should not be part of what we quantify as an individual’s net worth in dollars and cents.

These objections are substantial and deserve a more thorough treatment than I can provide in this column.  I will, however, offer a brief summary of some responses to these points:

First, if we are concerned about the mental status of an organ donor, we can require and provide psychological screening for donors, and thereby ensure that people who donate organs are capable of making a truly informed and voluntary decision.  Such screening is already part of the process that uncompensated live donors currently undergo before donating.

Second, if permitting compensation for kidneys contributes to the commodification of our bodies, it does so only to save the lives of people who would otherwise suffer through dialysis or die of kidney failure.  If the consequences of commodification are as dire as the consequences of organ shortages, then the burden ought to be upon the opponents of compensated transplantation to provide the empirical evidence that this is so.  Here, we are pitting clear, life-saving benefits against speculative societal costs that may never come to pass.

Third, and finally, there is the financial desperation objection, which may be the most compelling.  If a person is donating a kidney only because he needs money very badly and has no other way to get it, then we may legitimately question the voluntariness of his consent.  Moreover, it might raise special concerns if foreign donors were to begin traveling to the United States in large numbers to sell kidneys to Americans.  If this were to occur, it could seemingly turn large numbers of impoverished people into a “donor class” whose organs are there for the taking.  It feels wrong for a person’s path out of destitution to require major surgery, even if the risks are relatively low.

One response to this objection, is that prohibiting compensation for kidney donation does not actually address the desperation of the poor.  In other words, poor people who would have willingly sold their kidneys for money, if permitted to do so, will still—under a prohibition regime—be poor people who are so very desperate for money that they would sooner sell a kidney than endure their state of deprivation.  By removing the option of donating a kidney, we therefore leave the poor in the same desperate straits where we found them, while also doing nothing to relieve the suffering and loss of life experienced by other people who have lost kidney function.

Are Kidney Donation Pair Exchanges Truly Different From Compensated Donation?

If one finds any or all of the objections to kidney markets persuasive, even after reading my brief responses, it may be helpful to ask whether these objections vanish when live donors become part of a chain of donor-recipient pairs.

For most people, a pair exchange likely seems very much like a direct donation of a kidney from a live donor to a beloved family member or friend.  I may need a kidney, for example, and my partner will donate one for me because he loves me, and considers me more valuable than his having an extra kidney.  If we think of pair exchange chains as simply a more complex variant on kidney transplant from a live donor to a beloved recipient, then the use of such chains seems to be nothing at all like the sale of a kidney.  On this argument, donor chains represent people giving up a kidney and undergoing surgery to save loved ones—far afield from a kidney sale, where a person is conveying  part of his body to a stranger for cash.

There is another way of characterizing what the paired-exchange chains do, however, when they allow people to trade kidneys to achieve donor-recipient matches.  We might fairly point out that everyone within the pair-exchange chain participates in a market.  To be sure, the market is not in cash but “in kind”—in the sense that money does not change hands.  But should the fact that the currency is compatible kidneys, rather than money, place such exchanges in a completely different ethical category from ordinary market events?

Consider for a moment why, in our earlier hypothetical donor chain example, Carla might be prepared to donate her kidney to Daniel, a complete stranger.  Would Carla be donating to Daniel if she were receiving nothing in return?  It seems uncontroversial to suggest that Carla donates to a stranger only because she desperately wants her husband Barney to live, to be healthy, and to avoid dependence on a dialysis machine.  She is unable to achieve this result on her own, so she must give something to a stranger to get her husband what he needs.

It is this desperation that leads Carla to go under the knife and have her kidney removed and transferred to the body of someone she does not know.  Carla cannot get Barney the kidney he needs with cash, so she uses her own kidney as currency instead.  Yet many of us view her decision to donate—and the benefit that she receives in return—as entirely legitimate and beyond reproach.

Now consider the person who decides to donate a kidney for cash.  Let us call her Cathy.  Assume that Cathy is evaluated and found to be of sound mind who understands the risks and hardships associated with kidney donation.  She nonetheless wishes to proceed.

Why is Cathy prepared to do this?  Let us assume that she truly and urgently needs the money, and is not simply looking for a way to increase her liquidity without having to work very hard.  Her need is what leads many people to worry that her consent to this surgery is not fully voluntary.

What is making Cathy so desperate?  Her husband Brian is experiencing kidney failure and must undergo a transplant in the near future to save his life.  Though Cathy and her husband are not immunologically compatible, Brian’s sister Emma is a match and is also very eager to donate a kidney to her brother.  The glitch is that neither Brian nor Emma has health insurance that would cover the costs of transplant surgery, and neither can afford to pay for the transplants directly either.

Enter David, another dialysis patient from a neighboring state.  David has no previous connection with Cathy, Brian, or Emma.  David needs a kidney, however, and has been immunologically matched with Cathy.  Cathy, like many people, has little interest in donating her kidney to David for free, but David is prepared to pay the costs of Brian’s and Emma’s transplant surgeries in exchange for Cathy’s kidney.  Under NOTA, however, a federal crime occurs if Brian provides monetary compensation to Cathy in return for her kidney.

Is Buying a Kidney With Money Truly Different From Buying a Kidney With a Kidney?

It is difficult to defend the distinction between what Cathy seeks—money in exchange for her own kidney that will enable her husband Brian to undergo life-saving surgery—and what Carla seeks—a kidney, in exchange for her own kidney, that will enable her husband Barney to undergo life-saving surgery.  In both cases, a woman is giving a stranger a kidney that she would otherwise keep inside her own body.  In both cases, she is doing so because she prefers to part with a kidney than with her husband.

In a more altruistic world, everyone would register as a living kidney donor, and virtually anyone in need of a new kidney would receive one.  In a more altruistic world, moreover, surgeons would perform all needed surgeries, regardless of insurance and without regard to a patient’s ability to pay.  In the world in which we actually live, though, pure altruism does not supply nearly enough organs or money to meet the demand for transplant surgeries.

How can we handle this dearth of supply in the real world?  Congress has seen fit to permit pair exchanges of the sort that Carla and Barney sought, and people seem quite content with this allowance and its ethical implications.  It is time for us to acknowledge that such exchanges are, in fact, a kidney market, one that—as I have illustrated above—is not meaningfully distinct from a market in which dollars rather than kidneys are exchanged.

By allowing compensation for kidney donors, we would be eliminating an arbitrary line between two types of transactions that both result in saving people’s lives in essentially the same way.  If we accept paired organ exchanges, then we ought also to repeal the NOTA prohibition against compensating a kidney donor for her willingness to undergo surgery that will save a stranger’s life.

Posted in: Health Law

  • Anonymous

    As the death toll from the
    organ shortage mounts, public opinion will eventually support financial compensation for organ donation in the United States. Changes in public
    policy will then follow.

     

    In the mean time, there is
    an already-legal way to put a big dent in the organ shortage — allocate
    donated organs first to people who have agreed to donate their own organs when
    they die. UNOS, which manages the national organ allocation system, has the
    power to make this simple policy change. No legislative action is required.

     

    Americans who want to donate
    their organs to other registered organ donors don’t have to wait for UNOS to
    act. They can join LifeSharers, a non-profit network of organ donors who agree
    to offer their organs first to other organ donors when they die. Membership is
    free at http://www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit,
    parents can enroll their minor children, and no one is excluded due to any
    pre-existing medical condition.

     

    Giving organs first to organ
    donors will convince more people to register as organ donors. It will also make
    the organ allocation system fairer. Non-donors should go to the back of the
    waiting list as long as there is a shortage of organs. Everyone can offer to
    donate their organs when they die, no matter what their medical condition or
    history is.

     

    David J. Undis

    Executive Director

    LifeSharers

  • Halo

    You have GOT to be kidding with this vitriol, Sherry. You
    really think it’s just that simple??? How dare you!!!?!?!?!???

    “Is Buying a Kidney With Money Truly Different From Buying a
    Kidney With a Kidney?”

    Sherry, what if the recipient can’t afford the high price tag that the legislation you’re suggesting will most assuredly place on organs?

    Surely you are not suggesting the poor be allowed to die out while the
    rich (who can afford to buy such organs) get to live? 

    I’ve seen a lot of bullshit on the internet, but you take the cake,
    ignoramus.

    “If we accept paired organ exchanges, then we ought
    also to repeal the NOTA prohibition against compensating a kidney donor for her
    willingness to undergo surgery that will save a stranger’s life.”

    No. HELL NO. You see this right here???

    “her willingness”

    That’s the magic phrase, Sherry. Someone unwilling should not be donating. Furthermore, if someone is only donating a kidney so they
    can receive some sort of monetary or personal gain then I don’t want their kidney!  Got it? I don’t want someone holding that over my head for the rest of
    my life. Why do you think most kidney patients won’t let their friends &
    family get tested until it’s go time??? I don’t want to feel obligated to
    someone, and furthermore, I shouldn’t have to!!!

    But my favorite part of your ignorance, Sherry, may just be this:

    “The glitch is that neither Brian nor Emma has health insurance that would
    cover the costs of transplant surgery, and neither can afford to pay for the
    transplants directly either.”

    This statement makes your entire theory irrelevant. Go back to the law
    library, because you skipped over a chapter.  Had you done any actual
    research, you would have learned:

    MEDICARE covers ALL KIDNEY TRANSPLANTS if the donor or recipient do not have
    insurance to cover the surgeries.

    You would know this, Sherry, if you bothered to contact a transplant center
    and spoke with a Patient Care Coordinator, Nephrologist, or even a Patient.

    Nice job with your research. Please don’t donate any organs. We don’t want yours.

  • Dan Jones

    Yes, and not to mention the fact that EVERYONE except the donor DOES GET PAID during organ transplant procedures.  The recipient gets the organ.  One and sometimes two hospitals get paid to host the procedures.  Providers like doctors and surgeons get paid.  Laboratory groups, often independent of hospitals and providers, get paid.  Organ transport teams get paid.  Not for profit registries get paid.  Hourly waged para-professionals and allied health professionals get paid – often overtime.  And insurance companies that offer subscribers of group plans that cover these procedures get paid through bigger premiums designed to cover against the high costs of these procedures.  All the donor gets is – the sense of reward for doing the right thing……

  • livingdonor101

    The problems with hypotheticals as Ms. Colb demostrates above is that they are always removed from the real and human cost of scenario being discussed. 

    While there are many things the US transplant system ‘can’ or ‘could’ do to protect a living donor/vendor in a legalized kidney market – they won’t. The first living kidney donor transplant occurred in 1954 yet we still have NO national standards of living donor care in the US, NO comprehensive short or long-term data, NO structured aftercare or support services, and repeated minimization of the so-called psychosocial evaluation, which Ms. Colb likes to rely upon her in speculation. 

    The Rosenbaum kidney trafficking ring clearly illustrates how the poor/desperate would be taken advantage of under such a system. Ms. Schepler-Hughes expose on the matter (http://livingdonorsarepeopletoo.com/organ-trafficking-case-reveals-how-government-fails-living-donors/) demonstrates how little US law enforcement, regulatory agencies or the transplant centers themselves cared about this illegal and unethical activity. 

    If one needs more proof, one need look no further that every published study from every country who has experimented with legal or illegal kidney sales. While the paradigm is beneficial for recipients, surgeons, hospitals, govt and otherwise, it is incredibly detrimental to the person relinquishing the kidney. Overwhelmingly, the kidney donor/vendor experiences more health problems, greater financial difficulties, increased psychosocial issues and a decreased quality of life. (http://livingdonorsarepeopletoo.com/kidney-markets-epic-fail/)

    The average age of end-stage renal disease onset in the US is 64.4 years old. The biggest kidney killer is diabetes, and most cases are preventable or highly treatable. The solution to the so-called organ shortage is not increasing supply, but decreasing demand. Emphasize prevention, early detection and treatment.

    The public should never be regarded as medical supply. Living donors are people too. 

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