'Medical Tourism' is the travel of residents of one country to another country for treatment. In this article I focus on travel abroad to purchase organs for transplant, what I will call “Transplant Tourism.” With the exception of Iran, organ sale is illegal across the globe, but many destination countries have thriving black markets, either due to their willful failure to police the practice or more good faith lack of resources to detect it. I focus on the sale of kidneys, the most common subject of transplant tourism, though much of what I say could be applied to other organs as well. Part I briefly reviews some data on sellers, recipients, and brokers. Part II discusses the bioethical issues posed by the trade, and Part III focuses on potential regulation to deal with these issues.In discussing consent Cohen comments that
I have assumed thus far that any exploitation in transplant tourism is consensual. Is it? Consent is a bit of a weasel-word, but can usefully be divided into three constituent parts, whether an individual’s agreement to a transaction is voluntary, informed, and competent.
Is consent to selling one’s kidney voluntary? In the basest sense of “not done under threat of force,” yes, though the empirical evidence discussed above suggested occasional cases where threats of force are used to induce initial compliance, and more often coercive techniques like threats of force or withholding of passports are used to ensure that individuals do not back out. Apart from these instances, the lack of other good options itself cannot be enough to make the transaction involuntary, for the reasons I suggested above. Is the seller’s consent informed? The existing studies suggest frequent problems with the accuracy of the information provided to sellers: sellers were misinformed about safety, the quality of the doctor performing their surgery, and falsely assured with the myth of the “sleeping kidney,” the promises of citizenship or a job, the pleasantness of the conditions in India where the transplant will take place, and not informed about the possible physical and stigmatic consequences of the surgery. Sellers were also misled into thinking they would be paid substantially more than they were actually paid.
Even when individuals are presented all relevant information, they may lack the competence or capacity to effectively process that information. Psychological research finds that even highly educated individuals are bad at understanding risk and susceptible to significant framing e!ects, especially in health care settings. As the studies above suggest, many sellers are poorly educated and illiterate, although we ought to be careful not to equate those facts with incapacity. I think the best approach to considering the issue is data-sensitive rather than blanket demographic conclusions. Although we cannot very easily tease out whether the cause of the problem is misleading information, over-optimism bias or other forms of bounded rationality, the evidence here suggests there is a problem. In the Pakistan and India studies only 35% and 21% of sellers, respectively, recommended that a family member or friend sell their kidney; in the Bangladesh study 85% of sellers spoke against the organ market, with many (an exact number is not given) stating they would not sell if given a second chance. The fact that a very high number of kidney sellers later regret their choices for reasons that likely involve informational deficits, bounded rationality, etc., is to me the strongest argument in favor or legal intervention. Yet the argument faces a few obstacles:
First, we lack good information on exactly what is causing the sellers to have so much regret, which seems important in determining whether an outright ban is necessary. As discussed above, many sellers do not get paid what they are promised and instead receive closer to two thirds of the promised amount. If a regulatory intervention was capable of eliminating that problem, would the high amounts of ex post regret remain? Moreover, as I mentioned above, the literature on altruistic kidney donation in the U.S. suggests that kidney donors have health outcomes as good as non-donors, while the data on transplant tourism suggests significant (self-reported) health deficits. Indeed, given the literature on adaptation to disability and mitigation over time of the negative effects of health setbacks on happiness, this may suggest that even this high level of regret the sellers self-report may underestimate the true negative effects on their health. If the mechanism causing the regret is negative health outcomes flowing from poor screening of seller health care, surgical, or post-surgical health care, in principle there may be more targeted regulatory interventions that can improve the situation such as mandating standard for health assessment, care, and the like.
Second, the usual remedy for problems of ex post regret is not an outright ban on a practice but improvement in information-provision and “libertarian paternalist” interventions — such as altering default rules in ways that “influence behavior while also respecting freedom of choice” — or “debiasing” strategies — that “help people either to reduce or to eliminate” over-optimism, framing effects, or other forms of bounded rationality in their decision-making. In the transplant tourism context, this would lead us to implement regulations designed to ensure that sellers were provided accurate information on their likely health outcomes post-transplant, on the likelihood that the money received would be successfully used for their goal (e.g., debt elimination), information on the likelihood of post-transplant regret, and that all of this was presented in an informed consent process that makes it comprehensible to someone with little formal education, and uses framing and other debiasing strategies to try to quell bounded rationality difficulties. It would also lead us to regulation to make sure that sellers received what they were promised in terms of remuneration.
The kind of regulation needed for this would be expensive, extensive, difficult to implement, and difficult to audit. This would be true if it was just a matter of putting in place regulation at the domestic level, but the problems are likely to be worse with transplant tourism, where three countries are typically involved (the buyer’s, the seller’s, and the location of transplant) and there is a real fear of regulatory race to the bottom, where the countries least willing to take action will be the ones who become the go-to destination for recruiting sellers or engaging in transplants. Moreover, because there are so many stigmas attached to kidney sale in these societies, it will be difficult for word of the ex post regret of prior sellers to circulate widely. Thus, while in a first-best world of perfect regulatory implementation, the consent deficits identified would lead to targeted correctives, the question is whether in the real world we are unlikely to avoid the problems identified with anything short of an outright prohibition? The “Working Group on Incentives for Living Donation,” consisting of Arthur Matas at the University of Minnesota and Sally Satel at the American Enterprise Institute among many others, has recently published its “Proposed Standards for an Internationally Acceptable System,” which are meant to establish the groundwork for a “regulated incentive system,” that is, legalized organ sale. They envision that under their system “[e]ach country will need to enact guidelines for evaluation and selection of donors,” institutional oversight, clearly defined “policies for follow-up, outcome determination and for detection” of irregularities with appropriate penalties. Moreover, they envision a system where the “donor must be fully informed” so that they adequately understand all risks and the nature and method of distribution of the benefit. Because I have argued that the chief concern with transplant tourism is not the in-principle objections (such as the corruption arguments) but the paternalism/regret problem, evaluating their proposal (or others like it) would require examining how well it would actually combat these concerns and whether it would receive sufficient buy-in and implementation by destination countries to blunt the illegal trade. Because their proposals are thus far untested, the matter remains open, and I do not purport to fully evaluate the issue here, but judging from Iran’s experience with a regulated kidney market, there are reasons for not being too sanguine that regulation can forestall these problems. Iran has robust regulation of kidney selling — all renal transplantation teams belong to universities and the costs of the transplant are paid by the government with no incentives allowed to transplant teams. Sellers are provided health insurance and an award from the government, and most are also provided a “rewarding gift” arranged before the agreement from the recipient or a charitable organization. The Iranian Society for Organ Transplantation carefully monitors all transplants for ethical violations. Nevertheless, Zargooshi’s study of 300 kidney sellers in Iran finds that 85% of them would definitely not sell their kidney again, and 76% strongly discouraged potential vendors from doing so. If the concerns about ex post regret persist in the one heavily regulated legal kidney sale market, this should cause some skepticism as to the superiority of regulation to outright prohibition.
Third, and more philosophically, paternalist arguments for outright bans are controversial at a political theoretical level, in that libertarians reject them. As Tony Kronman astutely observed almost three decades ago, one pressing a paternalistic argument to block a voluntary transaction “has an obligation to explain why such interference is permissible in some instances but not in others” for “only in this way can the legitimacy of paternalism be established and its limits defined.”
In this case such a limiting principle might be: “where many sellers of a good are being given false information, are poor, desperate, and uneducated, and where their ex post regret is quite high (routinely above 70%), and where the practice has significant negative effects on their health and economic fortunes, and where information-providing and other gentler correctives will not be effective, we should prohibit a practice outright.” To be sure, there are losers in such a move, not only the recipients who desperately need organs and the brokers who make a living mediating the trade, but the proportion of sellers (likely between 15% and 35% based on the above-discussed studies) who sell their kidneys and are, by their ex post assessment, glad that they did. They can legitimately press the hypocrisy argument on us, and lament that we have “protected them” out of their ability to get out of bonded labor and otherwise improve their lot in life. We can respond that we remain committed to making their lives better, to ending bonded labor and lifting people out of poverty, but the cynics among us will note that the headway we make on those lofty projects will be slow in coming, if it ever does. Instead it is better to look them in the eye and say “while we recognize that you feel you have benefitted from this trade, a clear majority of your neighbors find themselves worse o! after selling their kidneys and deeply regret what they have done. Sometimes regulatory prohibitions to protect the many will burden the few, and that is the price of living in a just society.” Will they be satisfied? Perhaps not. But we should be.