'Transplant Tourism: The Ethics and Regulation of International Markets for Organs' by I. Glenn Cohen in (2013)
Journal of Law, Medicine & Ethics 269-285 [
PDF] comments that
'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.
