ERASMUS UNIVERSITEIT ROTTERDAM
Faculty School of Economics
Department Health Economics
Bachelor Thesis
A market for organ donation
A literature review on existing policies and a market for organ donation
Date:
15-08-2014
Author:
Guus Visman
Student number:
349144
Supervisor:
Dr. P. Garcia Gomez
1
Table of Contents
1.
Introduction ..................................................................................................................................... 3
2.
What are the existing policies? ....................................................................................................... 5
2.1.1 Behavioural aspects................................................................................................................ 5
2.1 Opt-in vs. Opt-out.......................................................................................................................... 5
2.1.2 Soft and Hard Presumed consent ........................................................................................... 9
2.2 Mandated Choice ........................................................................................................................ 10
2.3 Priority rule .................................................................................................................................. 12
3.
Market ........................................................................................................................................... 15
3.1 Is it ethical to facilitate a market for organ donation?................................................................ 15
3.1.1 Commodification of the human body .................................................................................. 17
3.2 Does a market lead to improvements? ....................................................................................... 18
3.2.1 Empirical examples ............................................................................................................... 18
3.2.2 Effects of a market for organs .............................................................................................. 20
3.2.3 Crowding out of altruistic behaviour.................................................................................... 22
3.2.4 The expected new Supply of organ donors .......................................................................... 23
3.3 How should a market be organised? ........................................................................................... 26
3.3.1 Who controls the market? ................................................................................................... 26
3.3.2 What sort of compensation.................................................................................................. 26
3.3.3 Limiting ethical concerns ...................................................................................................... 28
4.
Conclusion ..................................................................................................................................... 30
4.1 Discussion .................................................................................................................................... 31
5.
References ..................................................................................................................................... 32
2
1. Introduction
“Organ transplantation has become a victim of its own success”, as a result of medical progress this
practice has become available to a growing proportion of the population (Pomfret et al., 2008). With
the growing demand and supply that does not keep up, as of the 5th of June (2014) only in the United
States there are already 122,949 people on the waiting list for organs. The majority of these
candidates are waiting for a “new” kidney (about 80%) (The Organ Procurement and Transplantation
Network, 2014). The impact of these long waiting lists is significant, in 2013 as much as 6,822 people
died while waiting for an organ and an additional 5,302 became too sick for organ transplantation.
This is combined about 10% of the current waiting list (Organ Procurement and Transplantation
Network, 2014). The number of annual cadaveric donors, between 2000 and 2011, have increased
from 5,985 to 8,125, at first sight a promising 36% increase. However, the number of patients waiting
for transplantation have grown even more rapidly, both in absolute and relative terms, with a 51%
increase from 74,635 to 112,971 (Organ Procurement and Transplantation Network (OPTN), 2012).
Therefore, not only have the number of patients on these waiting lists increased, but also the
average time spend waiting on an organ has grown. Kidney patients above 60 years even haven an
almost equal chance of dying (46%) as of receiving transplantation while on the waiting list (Schold et
al., 2009). Rough estimates for the world as a whole suggest that about 700,000 patients are on
dialysis and in Europe alone 40,000 people are waiting for a kidney transplant (Xeno, 2000). The
impact of these long waiting lists is significant; the mortality rates of these patients vary between 15
and 30% (Communities, 2007). These facts suggest that a significant still growing output gap exists1.
The benefits of reducing this output gap are clear, a lot of lives can be improved and saved.
The purpose of this research is to review the literature on organ donation, in particular possible
solutions for the organ shortage and the ethical consequences of these solutions. In order to review
this subject, existing policies regarding cadaveric as well as living donation will be evaluated. This
review focuses on organ donation, therefore bone marrow, tissue or blood donation will only be
discussed when relevant as a comparison to organ donation. In respect to organ donation a
distinction can be made between cadavaric and non-cadaveric donation. The majority of the policies
in welfare states are aimed at increasing the latter, cadaveric donation. These policies will be
discussed in the first section. The most important policies regarding this type of organ donation are
an opt-in system, an opt-out system, a priority system and a mandated choice system. The literature
regarding these policies will be discussed and behavioural aspects regarding the status quo bias will
1
On a note of caution this output gap might be an overestimate because of the fact that a cadaveric organ
donor can supply up to an average of 3 organs. However, an effect working in the opposite direction is the fact
that the waiting list restrictions are becoming more and more stringent as time passes, as a result of the long
waiting list itself (Byrne & Thompson, 2001).
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be linked to the opt-in and opt-out policy. In the second part aspects of an organ market will be
discussed. First, the most important ethical concerns and, when existent, opposing views about these
concerns will be mentioned. Furthermore, the question will be reviewed whether the introduction of
a market would lead to improvements. The term altruism will be defined to facilitate this discussion
and empirical evidence about the crowding out of altruism in blood donation will be discussed. In
addition, empirical examples of organ markets will be addressed. In the last section, proposals on the
market design for compensated organ donation will be reviewed. This section will contain proposals
for direct and indirect compensation and proposals to limit the ethical concerns accompanying the
possible introduction of an organ market.
The current policies as well as the possibility of an organ market will be discussed from the point of
view of western developed welfare states. As most of the literature focuses on the UK and the US
this literature review will do so as well. Because of the wide scope of this paper and the logical
consequence that not all literature about all the subjects can be discussed, this paper is possibly
better defined as a topic review.
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2. What are the existing policies?
2.1.1 Behavioural aspects
The impact of policy decisions on the topic of organ donation are by matter of fact subject to human
behaviour. In this matter the government establishes a policy regarding organ donation and
individuals react to this policy. The reaction from individuals depends among other things on their
preferences. Aside from the preferences, the decision is influenced by the manner in which the
different options are framed. A concept relevant in this type of decision making is status quo framing.
Status quo framing is thought to positively bias a subject’s decision towards the current status. The
substantiality of this effect depends on the strength of the public’s preferences. The strength of
preferences and the effect of status quo framing are negatively related (Bostrom & Ord, 2006;
Samuelson, 1988). Therefore, the expectation is that, under any policy established by policymakers, a
bias towards taking no action can be observed - a reluctance to change the status quo.
2.1 Opt-in vs. Opt-out
There are two main possibilities to set the default rule regarding cadaveric organ donation. Under an
opt-out policy, the default is set to being a donor and as long as a citizen does not opt out, consent is
presumed. Whereas, an opt-in policy determines that a person has to actively register to become a
donor. As long as consent is not registered, citizens are assumed to have a preference of no cadaveric
donation. The latter, opt-in, is often associated with a low consent rate (see figure 1, for actual
donation rates) (Abadie & Gay, 2006). As a result countries with low consent rates consider a change
in policy from opt-in to opt-out, recently this has been a subject of discussion for the UK (Neades,
2009). In Wales presumed consent will be implemented in 2015, however it is unclear whether other
member of the UK will follow (Roberts, 2013).
The success story of Spain, with 34.3 cadaveric donations per million population (PMP) in 2007, is
often used as an example for the benefits of an opt-out policy. In comparison, average donation
rates in the EU were 16.8 PMP in the same year (Price, 2009; Transplant Committee, 2008). However,
numbers about organ donation described in PMP are thought to be unrepresentative. For example,
the maximum achievable cadaveric donation rate for the UK is thought to be 23.2 PMP, well below
the actual donor rate achieved in Spain (Barber et al., 2006). It has also been argued that Spain’s
success is a result of a professionalized organ recovery system, rather than the opt-out law (Bruno &
Ythier, 2010). Healy (2005) argues that the existence of a presumed consent policy might rather be
an expression of the social norm than anything else, thus explaining the differences between opt-in
and opt-out countries.
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Figure 1 (Abadie & Gay, 2006)
A simple model constructed by Johnson & Goldstein (2005) has shown that effective consent rates
could differ significantly when comparing an opt-in to an opt-out policy. The subjects of this study
were confronted with a hypothetical situation of moving to a new city. For one group the new city
had a default setting of consent to organ donation (presumed consent/opt-out), one group was
confronted with a city that had a default of no organ donation (informed consent/opt-in) and the last
group was confronted with no default option. The results of the study showed striking differences
between an opt-in and opt-out policy. Of the sample 42% consented under opt-in and 82% consent
under opt-out, while 79% consented in the neutral framing. The differences between opt-in and opt
out is what would be expected given the status quo bias. However, the big difference between opt-in
and neutral framing on one side and the small difference between neutral framing and opt-out on
the other, cannot be addressed by the status quo bias.
Empirical evidence suggests that there is a significant difference between opt-in and opt-out as well.
In a cross-country research by Abadie & Gay (2006) it has been concluded that the “opt-out
treatment factor” has a statistically significant effect on organ donation rates. The isolated effect of
an opt-out policy results in 25-30% higher donation rates. The significant effect remains when the
outlier Spain is omitted from the regression. The study included 22 countries over the course of 10
years and controlled for factors such as GDP, wealth, traffic accidents and medical expenditures. A
similar but more recent study (Bilgel, 2010) found that the effect of an opt-out policy is dependent
6
on whether or not relative consent is routinely sought. Bilgel (2010) concluded that the effect of a
presumed consent law is dependent on whether it is common practice to seek family consent and
dependent on the fact whether or not the donor registry system is well-maintained. When relative
consent is not routinely sought the treatment effect of an opt-out policy is an increase of 19 percent
in terms of donation rates, irrespective of the donor registry system. When the registry system is not
properly maintained and the opt-out country does not seek relative consent routinely, the treatment
effect of an opt-out policy is negative, leading to a 15 percent decrease in donation rates. Whereas, if
the registry system is well-maintained and relative consent is routinely sought, the treatment effect
is a 36 percent increase in donation rates. This means that- all other things equal- the introduction of
a presumed consent policy (from the baseline of informed consent) can on average lead to a change
of -15 percent to +36 percent change in donation. The study controls for variables such as traffic
accidents, family consent, homicides and the donor registry system. In a review on presumed
consent, Rithalia et al. (2009) compile a collection of five before-after studies for three countries:
Belgium, Austria and Singapore. For Belgium, the policy change- from opt-in to opt-out in 1986resulted in an increase from 18,9 to 41,3 donations PMP in kidney transplants in the three year after
implementation (’87-’89). A similar policy change in Austria resulted in an increase from 4.6 PMP to
10.1 PMP in kidney procurement in the four years after introduction (‘82-‘85) of the presumed
consent policy. In Singapore the kidney procurement rate increased from 4.7 PMP to 31.3 PMP over
a three year period (’88-’90). In all cases the introduction of presumed consent led to an increase in
donation rates. However, the paper identified that there may be other factors influencing the change
in donation rates, such as mortality in traffic road incidents, the infrastructure supporting organ
transplantation, GDP per capita and health expenditures. For Singapore the simultaneous
implementation of the priority rule in 1986 might lead to even more distortion of the results (Kessler
& Roth, 2012). According to Rithalia et al. (2009) results of before-after studies are not enough
evidence to conclude that a change to opt-out will in general lead to higher donation rates.
Given the status quo bias, an improvement in donation rates can be expected when a country
changes its policy from opt-in to opt-out. Under such practice the status quo framing changes from
no organ donation to the status quo of donating. The status quo bias has been argued to be the only
reason for opt-out to change donation rates in the way they do (Wilkinson, 2009). Other papers
compare the importance the default option has in retirement saving plans (Madrian & Shea, 2001),
automobile insurance (Johnson et al., 1993) and consent to internet privacy policies (Johnson et al.,
2002). The difference has also been attributed to so-called contemplation costs (Kessler & Roth,
2012; Siegel & Alvaro, 2010). These are the costs incurred by a potential donor when thinking about
the prospect of their own death and the mutilation of their body in harvesting organs. It is argued
7
that contemplation costs are an important reason for the differences between opt-in and opt-out
policies. Under a policy of informed consent these costs are a potential burden to register for organ
donation (opt-in), while under presumed consent the costs can be a burden to opt-out (Abadie &
Gay, 2006).
The existence of behavioural patterns is supported, although indirectly, by survey results in the
United States. The findings of that survey were that 89% of a sample of American people favour
organ donation and 69% would like to donate after death. However, not even half actually gave
permission to donate (28%). Therefore a larger number of cadaveric donors can be expected under
opt-out (Gallup, 1993). These results are consistent with evidence from other countries. For example,
a survey among 1,000 German participants, showed a smaller, but still significant, difference
between active acceptance (63%) and passive acceptance (78%). In this context active acceptance
means registering as a donor, while passive acceptance means willingness to become a donor (The
Federal Centre for Health Education, 2001). Similar researches have been conducted in other
countries such as the UK and the Netherlands. In UK, 90% of the sample showed cognitive consent,
but an actual consent of only 30% (NHS Blood and Transplant, 2009-2010), while in the Netherlands
69% of the inhabitants are willing to donate, whereas only 23% have actively registered consent
(Eurobarometer, 2007). Whether these differences are caused by the status quo effect,
contemplation costs, or other factors, is yet to be determined. An opt-out system could possibly
prevent the phenomenon that people would not register because of mental costs, but at the same
time it could produce donors who have a preference against organ donation.
According to O’Carroll et al. (2012) there are other mental costs accompanied with becoming a
donor. For example, the superstitious belief that the act of organ donor registry will in some way lead
to harm or death. Furthermore, some have the desire to keep the body whole after death and there
is a fear amongst potential donors that doctors may hasten death in order to harvest organs
(O’Carroll et al., 2012). The last statement is also found in a survey by Donate Life America (2010)
among 5,100 American citizens. 52 percent of the subjects reported the believe that doctors may
exert les effort into saving a patient´s live when the individual is a potential donor. Furthermore, 62
percent of the sample believed that organs may be removed while they might still come back to life.
The subjects of this survey were convinced that brain death does not necessarily means the end of
life. When these psychological costs of registering are higher than the added value of being
registered, a prospective donor will naturally not register. It could be argued that the set of discussed
mental costs and the resulting behavioural patterns cause the gap between people’s attitudes
towards donation and their actual revealed preferences.
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Gill (2004) argues that the most important objection against presumed consent is that people can
become donors unwillingly. The fact that deceased potential donors can have their organs removed
against their will violates the principle of human autonomy over their own body (Neades, 2009).
However, Neades (2009) immediately counters this objection herself by the proposition that the
contrary is worse. The fact that, under opt-in, organs are left unused while a preference in favour of
organ donation existed. Tietzel (2001) on the other hand, states that under an opt-out policy a
country essentially suggests that organs are the property of society. This can create a “slippery slope”
in which citizens feel like they are a state-owned object that has no autonomy over their own body. It
has also been argued that the removal of one or multiple organs on the basis of the fact that there is
no opt-out contract is ethically unsustainable (Fabre, 1995). Furthermore, an opt-out policy has been
suggested to be in breach with the social point of view that organ donation is and should remain a
voluntary social act (Price, 2000), this can be considered as an incompability between altruism and an
opt-out policy.
Social norms and beliefs vary per country, resulting in varying ethical norms. Therefore, the
acceptance of a presumed consent policy can differ per country. A survey conducted in Spain has
shown that people have objections against an opt-out law. Only 23% of the sample agreed with the
law and 53% thought it was an abuse of power (Conesa et al., 2003). In the UK however, in a survey
conducted around the same era (2001), 57% of the public reported to be in favour of presumed
consent (Cameron & Forsythe, 2001). Furthermore, a study among heart and lung transplantation
professionals over the world has indicated that 75% thought an opt-out policy is the best way to
increase donation rates (Oz et al., 2003). A more recent study in Austria has shown that the majority
of the population has a positive attitude towards the opt-out policy, 74% of the sample reported to
think the law is good (Stadbauer et al., 2013).
2.1.2 Soft and Hard Presumed consent
Apart from the preference stated by the deceased donor throughout his life, the family can be
consulted in the process of organ procurement. The combination of an opt-out law and always
seeking relative consent before using the organs is called “soft presumed consent”. Under the form
“hard presumed consent” organs are used unless relatives actively state an objection.
In some countries doctors are legally obliged to talk to relatives before actually using organs of a
deceased person, however in most countries preferences of deceased citizens are legally binding
(Bonnie et al., 2008). Nevertheless, in practice this legislation is rarely enforced, doctors are hesitant
to use organs without talking to relatives first (Kaushik, 2009) and prefer a system of soft presumed
consent (Hamm & Tizzard, 2008). As a result of this hesitance, in most countries consulting family
9
members is a standard procedure (Abadie & Gay, 2006; Li et al., 2013; Simpkin et al., 2009) and
family members use the stated preference merely as a signal to consider in their decision2 (Byrne &
Thompson, 2001). This signal can be a signal of opting out under a presumed consent or opting in
under an informed consent policy. European countries that do use the hard form of presumed
consent are Austria and Belgium (Rithalia et al., 2009). However, most doctors in Belgium do actually
seek relative consent and therefore Austria is the only European country to act purely on the basis of
presumed consent (Hughes, 2009).
In a study by Haddow (2006), conducted in Scotland, 74% of the sample reported to know that the
family has the final decision in organ donation, but two third reported not having communicated
their preference to relatives. A survey among young European adults (in Switzerland and Italy)
showed that 60% of the sample did not communicate their preference towards next-of-kin and did
not know their relatives preferences either (Gross et al., 2001). Therefore, it can be deducted that
the choice made by relatives does not necessarily represent the preference of the deceased. An
empirical study auditing intensive care records in the UK showed a relative refusal rate of 41%,
resulting in a conversion rate of 45% (Barber et al., 2006), the number of actual donors divided by
the number of potential donors. These numbers are comparable to those in the United States, with a
refusal rate of 46% and a conversion rate of 42% (Sheehy et al., 2003). In conclusion an opt-out
system can contribute to diminishing the organ shortage, has empirically shown to do so, but is by
some thought to have ethical drawbacks.
2.2 Mandated Choice
A policy that is in middle ground between opt-in and opt-out, is called Mandated Choice. In a
mandated choice system, citizens are obliged to choose whether or not they want to be an organ
donor. In other words, they have to state their preference. Commonly this has to be done when
collecting a driver’s license, collecting a passport or filing income taxes (Spital, 1992). Because
mandated choice forces citizens to state their preference about organ donation, this has been argued
to avoid relative’s opinions to get involved on the issue and discourage so-called family vetoes
(Council Report, 1994). Chouhan & Draper (2003) state that although mandated choice has been
criticized for reducing autonomy, a person is obliged to choose, the autonomy is bigger than under
any other policy. According to Glazier (2006) however, a symbol on a driver’s license as used in most
mandated choice systems is legally insufficient evidence of a donor´s preference to be used for actual
organ donation. Furthermore, the preference could have shifted since the issuing of the drivers
2
More recently, according to Bilgel (2010), the Organ Transplantation Network (OPTN) has communicated that
the practice of informed consent has changed for the USA. From 2009 and on, organs of a deceased donor in
the USA that have registered consent will be removed even if relatives do not consent.
10
license3. Cotter (2011) however, in accordance with Chouhan & Draper (2003), states that the main
benefit of mandated choice is the preserving of an individual’s autonomy while at the same time
increasing donation rates (from the baseline of an informed consent system). Furthermore, people
are under this policy more or less obliged to think about their decision regarding organ donation. This
could potentially eliminate contemplation costs and the status quo bias, a problem both opt-in and
opt-out have been argued not to address properly. However, it has been argued that when people
are forced to take a decision, there will be a general tendency towards the safer option. The
psychological discomfort a decision can induce will be avoided (Dhar & Simonson, 2003; Festinger,
1957; Janis & Mann, 1977; Lewin, 1951). Essentially, this is no different from contemplation costs and
therefore we can interpret mandated choice to induce rather than take away contemplation costs.
Empirical examples of the mandated choice system stem from the USA; Illinois, Texas and Virginia
have used the mandated choice policy at some point in time. In these states people were obliged to
state their preference about organ donation when collecting a driver’s licence. It is argued by Thaler
et al. (2010) that this form of mandated choice has lead to higher registration rates in Illinois,
compared to the national average of the United States. The policy led to a consent rate of 60 percent
in Illinois, while the national average was 38 percent. The main benefit is thought to be that, under
mandated choice, consent is explicit and therefore family members will be less likely to decline.
However, the comparison of Illinois with the national average alone is of course not enough to assess
the effectiveness of this policy. The policy of mandated choice has lead to less successful donation
rates in other states. Verheijde et al. (2007) report that Texas had a policy similar to mandated
choice, from 1991 until 1997. However, as this policy lead to a refusal rate of as high as 80%, the
policy was abolished in 1997. The refusal rate was thought to be due to a lack of public education.
Childress & Liverman (2006) report the implementation of the policy in the state Virginia. With the
introduction in 2000, a drastic decrease in consent rates was observed. The reason for this, as later
determined, was mainly the possibility to state “no preference”. Due to the computer system used at
the time this was registered as a preference against organ donation. Strictly, the policies in Texas and
Virgina are not mandated choice systems, because stating a preference was not obliged. Childress &
Liverman (2006) state that other empirical evidence about the mandated choice policy is nonexistent. In the literature a clear focus can be seen on the opt-out and opt-in policies, mandated
choice has not been the subject of many papers or researches.
3
The same could of course be said about a stated preference under an opt-in law; however the stated
preference under such a system (opt-in) is commonly easier to change than under a mandated choice system.
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2.3 Priority rule
Another existing policy mainly known as a policy to increase cadaveric organ donations4 is to assign
priority to those who are registered as a donor over other people on the waiting list. This policy is
called the priority rule (Chandler et al., 2012). It is currently practiced in Singapore, Israel and to
some extent in Japan. The main advantage of the priority rule is thought to be the incentive that
arises to donate organs. Furthermore, a common difficulty concerning organ donation is the
“freerider problem”. Under all the policies mentioned (opt-in, opt-out and mandated choice) it is
possible to receive organ transplantation whilst not being registered as donor oneself and therefore
benefiting from, but not contributing to the public system (Robertson, 2007). In a priority rule setting
this problem is thought to be diminished, as people who are not willing to contribute will have less
priority compared to “non-freeriders”. For most countries the priority rule has legal consequences
however. The priority rule ignores medical condition of recipients, which is commonly against the law
(Eaton, 1998). A possible advantage of the priority rule is that it provides for more than just altruistic
incentives to donate. However, in order for this policy to work, it is a condition that the practice of
this policy is well-known under inhabitants of a country. Public education is essential in this policy.
On moral grounds, people who do not participate in the priority rule have to know the possible
future medical drawback this causes, a lower rank on the organ waiting list. And in terms of
effectiveness, the disadvantage of not participating has to be well-known in order to raise organ
donation rates.
An experiment conducted by Li et al. (2013), investigating and comparing opt-out to the priority rule,
has shown that the combination of both policies increase donation rates the most. According to the
experiment, conducted among a sample of American citizens, the implementation of either the
priority rule or the opt-out rule, would lead to significant increases in donation rates. Finding an
average donation rate of 25.3% for the control group, an increase to 48.8% for the “opt-out
treatment group” and an increase to 61.3% for the “priority treatment group”. The two treatments
combined, opt-out with priority rule, led to a donation rate of 70.8%. These results suggest that a
combination of the opt-out rule with the priority rule is most beneficial in terms of donation rates
and that the priority rule accounts for most of the increase (Li et al., 2013). This experiment was
conducted as a refinement of a similar experiment by Kessler & Roth (2012). The framing in the
experiment by Kessler & Roth (2012) was different as the terms organ and organ donation were
never mentioned to subjects. The experiment by Li et al. (2013) solves this, the authors conclude that
4
A less well-known application of the priority rule is applied to living related donation. Individuals who have
once donated an organ in living related donation get extra points on the waiting list, if ever in need of an organ
him/herself (Delmonico et al., 2002).
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their findings are in accordance with the conclusions of Kessler and Roth (2012), namely that the
priority rule increases organ donation. There are however some caveats as to the external relevance
of the research by Li et al. (2013). Firstly, the sample was relatively low (n=270) and the whole
sample existed of students. Monetary incentives were used, however the mean of these payments
were as low as 18$. Nonetheless, the results of the experiment do find theoretical support. This
theoretical support is based on the “reciprocity rule”, essentially this rule means that if a person
receives a gift a moral obligation is felt to return this gift (Fehr & Gaechter, 2000; Hoffman et al.,
1995)5. Applied to the priority rule, this might translate into willingness to reciprocate the “gift” a
deceased one has received during his/her live. As the deceased individual has had a higher priority
over others during his live, in case an organ should be needed. Based on a feeling of fairness (or
reciprocity) relatives may be more prone to consent to donation of the organs of their deceased
relative.
The few empirical examples of a priority rule stem from three countries: Israel, Singapore and Japan.
Israel has introduced the priority rule in 2010, in combination with an opt-in policy. When an
individual opts in, increased priority is granted if in need of an organ him/herself. In order for a
person on the waiting list to get priority, the candidate has to have a donor card for at least 3 years.
The establishment of the priority rule in Israel was mainly provoked by low consent rates. Of the
brain deaths, only about 45% of the family consented for their relative to be a donor (Lavee et al.,
2009). Two formal surveys have been conducted to ask the citizens of Israel for their opinion about
organ donation and they show similar results: 55% of the sample in both surveys reported they
prefer priority as a form of compensation for organ donation, whereas only 26% stated to prefer
direct financial compensation and 25% was in favour of indirect compensation (Ashkenazi, 2001;
Israel Transplant Centre, 2004). With the use of these results and after debates with several social,
legal, ethical and religious groups and the change of the Transplantation Act, the priority rule has
been set. Data on the results of the priority rule in Israel are not yet available (Chandler et al., 2012).
Similar surveys as mentioned for Israel have been conducted in the USA in which 53% listed the
priority rule as their most preferred option for compensation (Kittur et al., 1991; Spital, 2005). A
related approach to the current practice in Israel is tried in the United States by a club called
Lifesharers. The 15,500 members of this club have subscribed to donate their organs, when
deceased, with priority to eligible co-members, however no transplants have taken place yet
(Lifesharers, 2014).
5
The policy of priority rule has also been referred to as the reciprocity system (Chandler, Burkell, & Shemie,
2012).
13
In Singapore, the priority rule combined with an opt-out system was introduced in 1987 when the
Human Organ Transplant Act (HOTA) was passed. Whoever opts out of being a donor ends up on a
lower position at the waiting list. The number of cadaveric donations before the introduction of the
rule was as low as an average of 5 per year. After the rule was introduced this number has grown to
13 per year (for the period of 1987-2004). In 2004 the rule was amended to allow not just kidney but
also liver, heart and corneas transplantation. In 2008 the HOTA was revised again to allow Muslim
candidates to get the same priority when not opting out, Muslim were excluded of the HOTA before
2008. In the period 2004-2012 the number of transplants has grown to an average 45 a year. With
the introduction of HOTA in 1987 candidates had to be between 21-60 years old, since 2009 the
upper limit has been removed (HOTA, 2013).
The priority rule system in Japan is limited to families. Since July 2010 citizens can write a legally
binding note to prioritize the use of their cadaveric organs to family members. Furthermore, the
system allows for the condition that organs are only to be used by family members. This variation of
the rule has been argued to be in violation with the rule that allocation of organ donation should be
based on fairness (Aita, 2012).
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3. Market
As we have seen, none of the existing policies for organ donation in Western countries in their
current form have been able to solve the organ shortage. Another type of organ policy is a market for
compensated organ donation. There are two examples of countries in which such a market (has
been) allowed. India in the 1980s and early 1990s and Iran from 1988 until now (Becker & Elias,
2007). A recurring subject of discussion in the literature is, whether such a market would be an
ethical way to solve the shortage and if so how this market should be designed. Although the
distinction between the discussed policies and a market for organ donation seems to be clear, a
substantial black and grey area of activity exists under traditional western organ policies. Therefore,
the separation is not so strict; nevertheless there are some ethical and practical issues that might
arise with the introduction of a market for organ donation.
3.1 Is it ethical to facilitate a market for organ donation?
The foremost and most important argument in favour of a market for organ donation is the
combination of the ever growing organ shortage, combined with the fact that organs are widely
available. An important distinction when exploring a market is the difference between cadaveric and
non-cadaveric donations. In general the transfer of organs out of altruism is broadly accepted when
considering cadaveric transplantation, whether related or not. However, as to living organ donation,
commonly a donor is related to the person receiving the organ and historically this was a
requirement (Epstein, 2008). More recently this restriction has been eased to emotionally related in
some European countries (Wellin et al., 2010), as well as in the USA (American Transplant
Foundation, 2014; Truog, 2005). Furthermore, it is in some countries- including Sweden, the
Netherlands and USA- legal to perform non-directed living organ donation (NDD). In this practice the
donor can donate an organ, but the donor is not allowed to assign the receiver of his organ. This is a
quite uncommon practice. In Sweden, for example 9 NDD’s were performed in total between the
introduction in 2004 and 2008 (Lennerling et al., 2008). As a result, living organ donation consists
mainly out of uncompensated donation from (emotional) relatives6 (Sanner, 2005). It has been
argued that this system of living related donation can lead to inequalities between people with a
wide and narrow social network or big and small families (Giles, 2005). Furthermore, this sort of noncadaveric donation is argued to impose serious non-compensated costs on the donor. For example,
living with one kidney can impose health problems on the long term, making the person unable to
compete in contact sports and limit the donor in job choices (Gaston et al., 2006; National Kidney
Foundation 2014). Although, the mortality risk for a kidney donor is as low as 3 out of 10,000
6
The exception to this rule is the Paired Exchange system, in this system a related but incompatible donor and
recipient are matched to another related but incompatible donor and recipient. The organs are swapped and
transplanted. Paired exchange is essentially an extension of living related donation (Giles, 2005).
15
(0.03%), there is of course the inconvenience of undergoing surgery and the accompanying scar
(Rothman & Rothman, 2006). Sometimes, transplantation is not entirely voluntary and it can be the
result of coercion from family members and an unwillingness to put relationships at stake (Matas,
2007; Scheper-Hughes, 2007). At times, this pressure has lead potential donors to turn to doctors to
withhold positive matching results (Simmerling et al., 2007).
The combination of coercion and the costs of living related donation have been used as an argument
in favour of financially compensated organ donation (Gaston et al., 2006). Furthermore it has been
stated that, from the point of view of the patient, a market provides a substitute from putting your
loved ones to the test as this is in the absence of a market the only source of living donation
(Danovitch & Epstein, 2008). An argument mentioned by those in favour of a market for organ
donation, is that in the absence of a market, everyone but the most important person is paid in the
process of organ transplantation. The surgeon, the medical team and the transplant coordinator are
paid; the recipient receives an important benefit in kind. Everyone but the donor is being paid or
compensated (Erin & Harris, 2003). Living donation has always been an important part of
transplantations as a whole, although this proportion has declined. The part of living donation in
total donation as a whole was roughly 21% in 2013; this was 25% in 2000. For kidney transplantations
the percentage originated from living donation was 34% in 2013 and 40% in 2000 (OPTN, 2014).
Living donation is only possible for one kidney and to a limited extent for the liver. In principle all
organs can be donated under cadaveric donation, including two kidneys.
Unofficial organ markets
Most countries allow for donations out of altruism only, some countries even have laws against
selling body parts. For example, the National Organ Transplantation Act in the US states: “It shall be
unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for
valuable consideration for use in human transplantation if the transfer affects interstate commerce”
(National Organ Transplant Act, 1984).
Nevertheless, whenever there is a demand for goods and supply is legally prohibited or restricted,
the potential of a black market arises. The market for organ donation is no exception to this rule.
There is a lot of, mostly anecdotal, evidence that a black market for organs exists on a substantial
scale (Bowater, 2012; Capitanini & Leitner, 2014; Finkel, 2001; Taylor, 2006). An estimate by the
World Health Organisation stated that transplant tourism accounts for 10% of all transplantations;
however this is not scientifically proven (The Lancet, 2007). Perhaps the most solid evidence is the
arrest of several organ brokers in Israel (Lundin, 2010). Insurance companies allegedly even offer
transplant tourism packages, the transplant itself excluded, to promote transplantation abroad. It is
16
thought that the insurance companies see this as a cheap alternative for dialysis (Bramstedta & Xu,
2007). The health consequences are significant; all sorts of diseases, medical complications and
infections can be the result of abroad transplantation (Chkhotua et al., 2005; Kennedy &
Charlesworth, 2005; Salahudeen et al., 1990). Throughout literature the existence of a black market
is never denied. For the most part its existence is dependent on the facilitation of kidney transplants.
The deal often involves an organ broker, a person on dialysis not longer willing to wait for a new
kidney and a donor from an impoverished developing country (Budiani-Saberi & Delmonico, 2008).
The amounts paid vary around 130,000$, while the donor receives as little as up to $5,000 (Lundin,
2010), other sources mention the amount paid by the recipient can be as high as 200 000$
(Friedlaender, 2002). The quality of these organs is not regulated and legal consequences against
coercion and bad organs are non-existent (Taylor, 2006) , furthermore it is believed that this black
market cannot be eliminated. Therefore it has been argued that compensated organ donation should
be legalised and regulated (Cherry, 2005; Wilkinson, 2003). Friedman & Friedman (2006) compared
the trades of alcohol during the 1920s, when alcohol was prohibited in the United States, to
prohibition of markets for organs and its accompanied black market, as an argument to allow and
regulate the trades of organs.
Aside from the black market the lack of a regulated organ market has been mentioned to lead to the
use of inferior organs, partially due to the increasing demand for organs and partially due to the
decrease of traumatic incidents which are an important source of organ donation (Gaston et al.,
2006).
The absence of a legal market has also lead to a grey area of activity. Especially in the United States,
organ advertisements are placed on the internet and on highway billboards by people offering or
soliciting for an organ (Steinbrook, 2005). Although the National Organ Transplantation Act does not
allow the selling of organs, it does allow for “reasonable payments” to the donor. Payments for
incurred costs, such as an airfare, or lost salaries (National Organ Transplant Act, 1984) and therefore
these kinds of advertisements are hard to counteract. As the term reasonable payments is
ambiguous. Steinbrook (2005) argues that it is not unlikely that compensation for more than incurred
costs already happens.
3.1.1 Commodification of the human body
An ethical objection recognized by proponents as well as opponents of compensation for organ
donation, is the potentiality of financial incentives leading to commodification of the human body
(Castro, 2003; Radin, 2001; Wilkinson, 2000). Although it is sometimes used as an argument in favour
of compensated organ donation, “my body my property” (Andrews, 1986), more commonly this is an
17
argument against a market for commercialized organ transplantation. Essentially, it is stated by
adversaries that it is immoral to put a price tag on human body parts (Bruzzone, 2010). The strongest
form of this phenomenon is when, in the environment of a free market, organs of young donors
would be sold for higher prices than those of old donors (Omar et al., 2011). The weaker form of
commodifcation is that all donors are paid the same price for an organ donation, regardless of the
quality. Whether this weak form is ethically undesirable has been contradicted. Opponents argue
that any form of direct compensation will lead to exploitation (Delmonico et al., 2002). Proponents
counter this proposition with the argument that soldiers are allowed to put their body and life at risk,
for direct and indirect financial benefits (Becker & Elías, 2014). Furthermore, people in general, are
compensated for higher risk jobs with a better salary (Garen, 1988) and it is legally accepted for
women to make their eggs available for other women, to allow them to have kids (Friedman, 2006).
These types of body disposal are thought to be no different from organ donation and therefore not
legally immoral. However, it has been argued that this comparison is not analogous to organ
donation because both the donation of sperm and eggs have never relied on altruism, while organ
donation does (Rothman & Rothman, 2006).
A different ethical objection is that all the organs under market conditions will be obtained from poor
people and are expected to end up with wealthy people, as they have more resources and can
outbid the less wealthy (Major, 2008; Omar et al., 2011) and that this practice is “government
authorized abuse of the poor” (Delmonico, 2003). Proponents counter this proposition with the
argument that under current practice organ commerce is illegal and therefore not covered by health
care, consequently only the rich have access to living unrelated organ donation. In a legal market this
type of transplantation should be covered by health care insurance and therefore improve organ
access for the less wealthy (Friedman & Friedman, 2006; Matas 2011). Of course an important
condition for this is that the less wealthy have health insurance.
Another moral objection against payment for organ donations is that donation might be driven by
impulsive actions. For example, one might decide to donate a kidney in the prospect of losing the
domestic house because of monetary problems and therefore donating an organ because there is no
other choice. However, this problem is thought to be less relevant in western welfare states (Wellin
et al., 2010).
3.2 Does a market lead to improvements?
3.2.1 Empirical examples
In India there has been a market for organ donation for an extended period of time, this market has
officially ended in 1994 when the Transplantations of Human Organs Act was introduced. When this
18
market still existed, India fully relied on living transplantations. Survey results have shown that the
market for transplantation often made the donors worse-off. 89% off the donors reported they
would discourage people to donate organs. Poverty after transplantations increased from 54% to
71%, mainly due to a 36% decrease in annual family income (Goyal et al., 2002). However, according
to Goyal et al. (2002) these decreases in income are self-reported by the interviewed sample and not
examinable because of the absence of bank account. Therefore, it is hard to know whether these
results are reliable. For example, the stated decreases might be caused by the “rosy retrospective
bias”, the tendency for people to remember past events in a more positive way then they were
experienced at the time (Stubbart et al., 1994). Furthermore, Western Countries have been
considered to provide better health care. Therefore, more favourable results in terms of emotional,
health and indirectly financial consequences could be expected. The best estimate of these effects
can be made with the use of data about current living related donation.
The other empirical example of a market for organ donation stems from Iran. Historically Iran had a
virtually non-existent transplantation network or facilities. Therefore, a lot of transplantations were
conducted abroad, the majority in the UK. These living related transplants were funded by the
Iranian government. In the 1980s about 400 of these transplants were funded in a 5-year period
(Major, 2008). Because of the increasing costs that were accompanied with this structure, a renal
transplant procurement network was set up. However, this resulted in less than a hundred
transplants. At the time more than 25,000 people were suffering from end-stage renal disease.
Because of this inadequateness in 1988 a compensated domestic transplant program was established
(Major, 2008). This new program allowed for both compensated living-unrelated as well as living
related donation (Ghods & Savaj, 2006). Compensation to donors is not only paid in terms of money,
but also in the form free health care. A donor receives the equivalent of 900€ from the government,
one year free health care and additional compensation from the recipient or from a charity (Griffin,
2007; Major, 2008). The Iranian empirical example of a market for organs shows that the waiting list
for organs has completely disappeared, however it has been disputed whether everybody is actually
registered on the waiting list. Furthermore, the waiting lists in Iran might be shorter than in western
countries in general. Nevertheless, the introduction of an organ market in Iran has increased living
unrelated donation significantly, 76% of kidneys come from strangers and only 12% come from
deceased donors (Griffin, 2007). An independent institute, the Dialysis and Transplant Patients
Association facilitates the contact between patients and donor, it is illegal for a middleman to be
involved and donors are not allowed to contact anyone on the waiting list directly (Major, 2008).
Nevertheless, anecdotic evidence suggests that donors seek contacts with patients suffering from
renal disease to sell their kidneys (Griffin, 2007).
19
A western variant of the questionnaire results around the same period of that in India has shown
that the quality of living kidney donors was above the national norm of quality of life. The theoretical
explanation for this is that living donation contributes to the well-being of an organ (Johnson et al.,
1999). It is, however, hard to assess whether these results are reliable as only 60% of the people who
received the questionnaire (n=979) had submitted a filled in form. Furthermore, it is of course
questionable whether an increased sense of well-being could be expected in the environment of
compensated donation7. A survey on a small sample of subjects in Spain researched financial, social
and emotional effect and is therefore very similar to the one in India. This survey showed that 100
percent of the sample would go through with the donation if they could turn back time, but 25
percent admitted the transplantation had negative financial effects. The average time out of work
was 58.7 days and only 1 candidate felt not completely recovered (Cabrera et al., 2003). The sample
was however as small as 22.
3.2.2 Effects of a market for organs
A simple mathematical model (Becker & Elias, 2007) has connected the mentioned empirical
examples to a possible organ market in western countries. The model assumes that the demand for
organs is completely inelastic in the vertical part Q0-S (see figure 2). The reason for this, as argued by
the model, is that all donations are completely out of altruistic motives and therefore not dependent
on the price. The supply curve shifts to S*S* when a market with monetary incentives is introduced.
As can be seen in the figure, it is now assumed that supply is completely elastic. In this research it is
stated that, that payments are very influential towards the supply (because the number of useable
donors is very large) and it is assumed that with payments of about 15,700$ supply is completely
elastic. The price is determined in comparison with Iran and India (the number $160,000 in figure 1
relates to the cost of conducting a transplantation). The expectation is expressed that the supply will
not be fully met by allowing a market for organ donation, but that there will be a significant increase
in the amount of conducted transplantations and therefore a substantially diminished organ
shortage. The price in this research is founded on a couple of factors such as lost wages due to
surgery and the risk of a surgery, a possibly important factor that is not accounted for is the
inconvenience of undergoing surgery.
7
A more likely explanation is self-selection, see section 3.2.4
20
Figure 2 (Becker & Elias, 2007)
Altruism
As will be seen in the next paragraph, proponents of compensated organ donation have expressed
their concern that compensation will lead to the crowding out of altruistic donation. Before outlining
this point of view it is necessary to define altruism first.
Formally altruism means ”the principle or practice of unselfish concern for or devotion to the welfare
of others” (Dictionary). In the context of organ donation the term has come to contain a broader
meaning. It has therefore been argued that the term altruistic motives in this frame of reference can
be defined as non-commercial motives (Danovitch & Epstein, 2008). One way or the other,
behavioural theory suggests there is more to prosocial behaviour than unselfish motives.
Bénabou & Tirole (2006) assign the incentives for prosocial behaviour to a mix of three different
motivations: intrinsic, extrinsic and reputational. Intrinsic motivation, in the context of organ
donation, is the satisfaction of saving or improving another person’s live by donating an organ.
Extrinsic motivation is caused by a material incentive the donor would be compensated with.
Reputational motives (also called signalling motives) in this context are quite straight-forward, the
status benefits a donor gains by donating an organ (Bénabou & Tirole, 2006). The existence of
extrinsic incentives can cause distortions to the reputational gains of prosocial incentives. A financial
reward for a prosocial act might namely signal to society that the incentives were not purely altruistic
and consequently no reputational gains can be attained. Therefore, external incentives can lead to
the crowding out of prosocial behaviour (Falk & Fehr, 2002; Jegen & Bruno, 2001). Pure altruistic
motives mean intrinsically motivated selfless behaviour. Broad altruistic motives are a combination
21
of the three mentioned factors (Omar et al., 2011). Throughout this paper, when altruism is
mentioned this is done in reference to broad altruistic motives.
3.2.3 Crowding out of altruistic behaviour
An obstacle often mentioned by opponents of financial incentives, is that it stands in the way of
donation out of altruistic motives. A study on blood donation has compared the UK and the US, the
former prohibiting the sale of blood whilst the latter allowed for this practice. The study found that
commercializing blood donation has worsened the supply (Titmuss, 1971). Although this study has
combined surveys, municipality statements and other sources with the data, the study is somewhat
limited, comparing only two countries with quite different social values. The results are nevertheless
supported by a more recent study in Sweden (Mellström & Johannesson, 2008) that examined the
effects of a small financial compensation (€5) on blood donation. The supply of blood donors declines
by almost half, finding a significant “crowding-out effect” for women, the decrease for men was
insignificant. When the possibility of donating the financial compensation to charity was introduced
the crowding out effect vanished. The general conclusion of this study is that financial incentives
might lead to crowding out of prosocial behaviour; however an empirical study in America has
reached an opposite conclusion (Lacetera et al., 2012). This study found that economic incentives led
to an increase in local blood donation instead of a decrease. The total effect is diminished by
displacement effects, blood donors donating at a station that offers compensation instead of
donating at a station that does not. The increase in blood donation was still significant after
correcting for these displacement effects. Another study on blood donation found that reputational
concerns were an important motivator for subjects to donate blood. Especially published symbolic
rewards, such as a photograph in the local newspaper for donors, proved to be a significant stimulus
for donation, as they boosted the social image of donors (Lacetera & Macis, 2010).
Considering the theory about altruism, discussed earlier, the result of the study by Mellström &
Johannesson (2008) can be explained, diminished donation would be expected when donors are
confronted with a small financial incentive. This can be attributed to the distorting signalling effect of
financial incentives. As these incentives are introduced, the donors no longer signal altruistic
behaviour and therefore do not gain reputational benefits anymore. However, when the blood
donors have the option of donating their compensation to charity, the positive signalling effect can
be recovered and with that the amount of donation did so to. The study argues that women are
more sensitive to reputational concerns, thus explaining the difference. The study has wide theoretic
support (Bénabou & Tirole, 2006; Fehr & List, 2004; Frey & Oberholzer-Gee, 1997; Gneezy, 2000;
Titmuss, 1970). The differences between the study by Lacetera & Macis (2010) and Mellström &
22
Johanesson (2008) might very well be the result of cultural differences, respectively the studies were
conducted in the US and in Sweden.
An important distinction between blood donation and organ donation is that the latter has more
impact and it could therefore reasonably be expected that the compensation will be higher.
Theoretically, this would lead to a relatively bigger weight to extrinsic motivations and a smaller
relative weight to reputational motivations (of course one could also argue that the reputational
value of such a donation is bigger). Therefore, the crowding out effect might prove to be less
important for organ donation.
3.2.4 The expected new Supply of organ donors
When the ethical concerns of a market for organ donation are accepted or countermeasures are
taken, a question that remains is what the effect of such a market would be in terms of the quantity
of organ donation, life quality and life expectancy of both recipients and donors. Dependent on the
type of market that is chosen, the quality and type of supplied organs can change. As we have seen
the effect on countries that implemented a market for organs, Iran and India, this could lead to more
unrelated living donation.
Quite a limited amount of data exists about the amount of supply that could be expected under
market conditions for organ transplantation. As there is no existing legal market for organ donation
in Western countries, estimates are based on educated guesses and conducted surveys. An inquiry in
the Netherlands showed that 5% of the respondents stated there was a great chance they would
donate a kidney and 0,5% stated there was a very great chance they would donate a kidney when
confronted with compensated organ donation8. In this research, the respondents could choose
between 25.000€ compensation and lifelong health insurance (Kranenburg et al., 2007). At the time,
the population between 18-65 years in the Netherlands was 12 million. Therefore a rough estimate
would lead to 660.000 people with a great or very great chance of donating an organ and 60.000
people with a very great chance of donating under compensated organ donation (CBS, 2008). The
end-stage renal disease waiting list at the time was about 1,000-1,500 (Renine, 2008). In a
mathematical model Becker & Elias (2007) make an estimate per type of organ donation. When
potential donors are confronted with compensation between $7,600-$27,700 for kidneys, the
increase in supply is estimated between 52 and 32 percent. A compensation for a liver between
$18,700–$69,300 is estimated to lead to an increase of 72 to 59 percent.
A survey by Oz et al. (2003) among an international group of transplantation professionals has shown
that 50% of this sample was concerned about the quality of organs obtained from compensated
8
The number of subjects willing to donate without compensation is not measured.
23
cadaveric donation: “...concerns that families of potential donors would be less than honest about
prior medical conditions or other characteristics of the potential donor that would prevent eligibility
for donation and thus for compensation.” In other words, a market for organ donation might lead to
adverse selection, supply of organs from inferior quality (Spurr, 1993).
A market for living organ donation is aimed at increasing the amount of living organ donation;
therefore it is relevant to see what the health effects of this type of organ donation are. According to
a medical research living donation is preferred to cadaveric donation in terms of complications of the
recipients later on in his life (Quintini et al., 2013). Another research has shown that these results are
supported in terms of general life-expectancy. From a medical point of view, living organ donation is
advocated above cadaveric transplantation, in terms of life expectancy for the recipient. The
interesting thing about this study is that also the donors in living donation have a higher life
expectancy than people in general (Hartmann, 2003). Although this might theoretically be the result
of altruistic added value to the general well-being of the donor, a more heard-of explanation is self
selection of the donor sample. Potential donors are medically assessed before being allowed to
donate and therefore only the healthiest potential donors will eventually be part of the
transplantation. A somewhat outdated but very frequently cited medical article concludes that the
risk of living donation for recipients are higher compared to dialysis in the short run (first 2 weeks), in
the long run however the morality rate decreased substantially compared to patients on the waiting
list who were on dialysis (48 to 82 percent decrease) (Wolfe et al., 1999). An important notion is that
living donation can only be a source for kidney- and partially for liver and lung- transplants. Therefore
it does not provide a solution for shortages in heart, pancreas and intestines donations (Kessler &
Roth, 2012). Nevertheless, as we have seen 80% of the patients on the waiting list are waiting for a
kidney (The Organ Procurement and Transplantation Network, 2014).
For cadaveric donation, the maximum potential has been estimated for both the US and the UK. For
the US the potential was estimated to be between 10,500 and 13,800. The identified reason for this
potential not to be reached is the refusal rate by relatives (Sheehy et al., 2003). A more recent study
in the UK (Barber et al., 2006) has estimated the maximum potential of organ donation on 23.2 PMP,
again the main reason for not establishing this maximum was thought to be the relatives refusal rate.
More outdated studies and with a smaller sample as a basis (Breyer & Kliemt, 2007), estimated the
potential donor pool in the USA at 45 PMP (Gortmaker et al., 1996) and 55 PMP (Siminoff et al.,
1995). A European Commission has indicated in a report that the incidence of end-stage renal
disease is about 1,000 PMP in total and that in order to reduce waiting times and the number of
patients who suffer from this disease, 60 kidney transplantation PMP are needed (Wellin et al.,
2010). This is a number that is well above most of the maximum potential of organ donation and
24
certainly well above actual donor transplantations in most countries. In perspective, Spain has the
highest number of annual kidney transplantations PMP with 48.9 PMP (Transplant Comittee, 2008).
From these figures it can be deducted that compensated cadaveric donation can by definition not be
a complete solution for the organ shortage nor can it stop the increase of number of patients on the
waiting list.
25
3.3 How should a market be organised?
3.3.1 Who controls the market?
The proposed solution by Matas & Schnitzler (2004) is a monopsonistic buyer, one institute that is
responsible for buying and distributing organs, for example in the UK “the National Health
Service”(NHS). In this market the monopsonistic buyer could set the price. Erin & Harris (2002, 2003)
add that this type of a buyer could have an incentive to set the price low, however it is argued that
this would not attract any vendors into the market and therefore a reasonable price would arise.
Otherwise the organ shortage would not be reduced. This buyer would only be allowed to buy within
its own country or self-regulated region, such as the European Union. However, the efficiency of such
a party can be doubted. Of course a monopsonistic party has no competition; this has proven to lead
to inefficient outcomes, both in lower outputs and higher prices (Atkinson & Kerkvliet, 1998; Bashkar
& To, 1999). Friedman & Friedman (2006) argue that the introduction of a market could lead to
diminishing costs on dialysis, as this remedy for end-stage renal disease is the most important
substitute for patients on the waiting lists. These savings could be used as a fund to increase the
number of kidney transplants.
3.3.2 What sort of compensation
A distinction can be made between living and cadaveric compensated organ donation. Proposals for
direct financial compensation are generally always related to the former, living compensated organ
donation. The reason for this is that direct financial compensation for cadaveric donation is very
sensitive to contract breach (Byrne & Thompson, 2001). Indirect financial compensation is not
necessarily related to compensation for cadaveric donation.
Direct Financial Compensation
Friedman (2003) argues that a uniform fee should be introduced for living compensated donation;
this practice is supported by Monaco (2006) who suggests that the fee should be in the form of a
government paid compensation. Note that this is a uniform fee for all types of living organ donation
within a country, not necessarily uniform across countries. Roff (2006) based his personal view about
compensation in the UK on other medical areas. For example, UK drug testing companies offer an
average compensation of around £2000- £3000 ($3300-$5000) for unpleasant medical trials. The
Criminal Injuries Compensation authority pays £22,000 ($37,000) for the loss of a kidney. These
numbers combined are used as support for the suggested compensation of $40,000 for living
unrelated kidney donation. The average annual salary in the UK is £26,151 ($44,000) which is
comparable to the average salary in the USA (Roff, 2006). As we have seen earlier, Becker & Elias
(2007) propose compensation amounts between $7,600-$27,700 for kidneys and for a liver between
$18,700–$69,300. It is of course very well possible that the most suitable amounts for other nations
26
than the USA and the UK are different. Matas & Schnitzler (2004) suggest that compensation up to
$94,000 is cost effective9.
Indirect Financial Compensation
The most often mentioned means of non-financial compensation for cadaveric donation is the
payment of a certain amount in contribution to the funeral of the deceased one (Childress, 1992). A
study by Omar et al. (2011), researching incentives for cadaveric organ donation in Sweden, suggests
compensating the families of cadaveric donors with a €5,000 contribution to the funeral of the
deceased one. The same study suggests that this money could be directed to charity in full if the
deceased or the relatives of the deceased one wish to do so, furthermore rejection of the
compensation should be an option too. Delmonico et al. (2002) support the proposal of contribution
to the funeral, but mention a smaller amount of $300. It is argued that the big difference between
covering for funeral expenses and a financial reimbursement to next-of-kin is that it shows society’s
appreciation for the donation in a more effective manner (Delmonico et al., 2002). Matas (2011)
argues that the payments should preferably be paid in the form of a college tuition or a tax credit
and that if direct payments are to be allowed these should never be paid at once, to reduce the
“quick-cash” incentive. Delmonico et al. (2002) furthermore suggest a “Donor Medal of Honor” as an
incentive for living organ donation. This medal would be made out of gold and therefore give the
donor the choice to sell the gold or keep the medal as a family piece.
In an article by Hou (2000) the case for non-material compensation is made. As mentioned earlier in
this review, organ donation is thought to have some similarities with joining the army. In the United
States, citizens who volunteer for military service receive part of their compensation in the form of
education, health care and professional training. This group predominantly consists of
underprivileged. Because this is one of the concerns raised towards organ donation, Hou (2000)
argues that similar compensations might be an ethical and at the same time efficient way to increase
donation rates. A similar type of compensation, as suggested in a survey, is the introduction of lifelong health insurance (Kranenburg et al., 2007). The subjects in this survey preferred life-long health
insurance above a direct financial compensation of €25,000. However, reported preferences do not
necessarily match up with actual behaviour. In other words, a preference by the public for indirect
financial compensation might not actually lead to increased living organ donation. The results of a
survey taken among a sample of heart and lung transplantation professionals showed a clear
preference towards indirect financial compensation. 66% was opposed to direct compensation, while
70% favoured indirect compensation (Oz et al., 2003).
9
This has to do with the cost savings in terms of dialysis that is accompanied with transplantation. For
estimates where QUALY is included see discussion.
27
3.3.3 Limiting ethical concerns
Yang et al. (2007) state that an absolute requirement of a market for compensated organ donation is
that no donor should have any difficulty in getting a health insurance. Furthermore, a market for
organ donation has been argued to be most eligible for countries in which every citizen has a health
insurance covering for organ transplantation (Omar et al., 2011). This applies to most European
countries. In this system the differences between rich and poor would be minimal, as every person
eligible for transplantation could theoretically receive an organ (given sufficient supply). Gill & Sade
(2002) further elaborate on this statement by proposing a system in which the sale of a kidney by a
private party is allowed, but the purchasing of a kidney by a private party is prohibited. Therefore the
chance a poor person will receive an organ will be equal to the chance of a rich individual.
When a person considers donating an organ, backing out should be possible at any given moment, as
to avoid coercion from the person receiving donation, anonymity would be preferable. Because the
donation of an organ is an irreversible decision, it has to be treated with caution (Matas, 2011).
A possible construction that could facilitate this caution stems from Sweden. As discussed earlier,
Sweden legally allows for non-directed living donation. Under this practice, absolute anonymity is
guaranteed and even well after the surgery has taken place the donor and recipient are not allowed
to meet. The reason for this procedure is that when donation would not be anonymously this could
lead to coercion or a sense of debt from the recipient towards the donor that has to be fulfilled
(Lennerling et al., 2008). Furthermore, non-related donation when directed to a specific recipient is
thought to undermine the current allocation system and would prevent the best medical use of
organs (Delmonico, 2004). Therefore, it has been argued that anonymity is preferable and also viable
with a governmental institute as an intermediary (Wellin et al., 2010).
Under non-directed living donation in Sweden, there is no recruitment of donors and potential
donors are never contacted by the hospital or other institutions, the donor has to actively seek
contact. A cool-down period of three months is set, to prevent regrets (Baskin, 2009; Lennerling et
al., 2008). Very strict medical and psychological examination is applied by a team of psychiatrists,
nephrologists and social workers. As a basis requirement the donors have to be 30 years old as a
minimum, because people are thought to be mentally full-grown around that age. This construction
has been suggested useful for compensated living donation (Wellin et al., 2010). A disadvantage of
these strict conditions is that, under non-directed living donation as little as 3 organs out of 47
applicants ended up being used for transplantations, only about 6% (Lennerling et al., 2008). It has to
be researched how these numbers will translate into compensated living donation.
28
A study has shown that in the period 1988-2001 renal disease had developed in 56 patients who had
once donated an organ to a relative (Ellison, 2002). Although these former donors received extra
points on the organ allocation waiting list, the wait was still several years. Delmonico et al. (2002)
argue that an important requirement of compensated organ donation is that these patients have
absolute priority on the waiting list, if ever in need of an organ. Under current practice, as recognized
by this article, a living donor gets extra points on the waiting list but no absolute priority.
29
4. Conclusion
Although some literature suggests the difference between an opt-in and an opt-out rule might be the
expression of social norms and a good organ transplantation network rather than an inherent
different in the polices, empirical data suggests otherwise. Namely, that an opt-out policy leads to
significant higher donation rates, a possible explanation for the difference is the status quo bias. The
most common form of presumed consent is soft presumed consent; hard presumed consent is rarely
enforced. The reason for this is closely related to the most important ethical objection against
presumed consent in general, that it might produce organ donors with a preference against organ
donation. It has been argued that a mandated choice policy solves this problem, while organ
donation rates are still improved (from the baseline of informed consent). Empirical examples have
shown that the mandated choice system has had little success, although this might be due to a poor
design of the system. The priority rule on the other hand is thought to be a good policy to reduce the
freerider problem. Although lab experiments have shown positive results, there is too little empirical
evidence to assess the effectiveness of this policy.
A market for organ donation is another type of policy that focuses more on living donation. Although
it is illegal in western countries, it does exist in the form of a black and grey market. A black market
that consists out of transplant tourism and a grey market that exists out of (overly) compensated
organ donation. These unregulated activities have been used as an argument to introduce a legal
organ market. Opponents on the other hand, raise the ethical objections that an organ market leads
to commodification of the human body and exploitation of the poor. The temporary compensated
market for organ donation in India has shown other concerns. The organ trades in India have been
associated with negative health and financial effects on living donors. However, it is thought that
these concerns are less relevant for western countries. The other empirical example, the organ
market in Iran, has ensured the waiting list to disappear, although this fact has been disputed.
Estimates of the results of an organ market for western countries conclude that the introduction of
an organ market could solve the shortage in western countries as well. Opponents argue however
that the introduction of a market might reduce the supply of organs as financial incentives might lead
to the crowding out of donation out of altruistic motives. If legalisation of an organ market is chosen
nevertheless, proposals for the design suggest a governmental monopsonistic buyer as the most
suitable regulator. A clear distinction is generally made between direct and indirect compensation.
Suggested direct compensation vary from 7,600$-69,300$ and the most often suggested indirect
compensation is the contribution to the funeral of a deceased one. The restrictions and requirements
applied to non-directed living donation have been suggested to ensure the limitation of ethical
concerns in a possible organ market.
30
The limit of this research is that it cannot be viewed as a comprehensive literature review. Because of
the wide scope some subjects may have too little body to give a whole representation on the subject.
Furthermore, the ethical concerns surrounding the concept of an organ market are only to a limited
extent described in the relevant literature, therefore ethical concerns might be underexposed.
Future research has to establish what ethical concerns are the most important ones in Western
societies and whether these concerns can be eliminated by an appropriate market design. However,
there is a fine distinction between on one hand ensuring effectiveness and on the other hand limiting
ethical concerns.
4.1 Discussion
Although, as discussed the introduction of a market organ donation is accompanied with ethical
concerns, a market for organ donation has the potential to add great benefits to society. Currently, a
person with renal failure has 3 options: Waiting for a new kidney, undergo dialysis or take no action.
Dialysis is a time consuming practice, as it takes about 4-6 hours, 3 times a week (Stein et al., 2002).
Furthermore, it is a short term solution, after 4-6 years the medical risks increase significantly
(Krediet et al., 2002). A paper by Meier-Kriesche & Kaplan (2002) found significant differences for
pre-emptive transplants compared to transplants after 24 months on dialysis. Therefore, mitigation
of the organ shortage could not only have an effect on the number of patients dying on the waiting
list, providing patients suffering from renal disease with a functioning kidney would mean a positive
impact on life quality too.
Matas & Schnitzler (2004) found that the annual costs on dialysis are $50,000 per patient and that
therefore the costs in general for renal diseases will decrease as living unrelated donation increases.
A more recent estimate in the UK, estimated the costs of dialysis at an equivalent of $52,362 per
patient per year (NHS, 2009), very similar to the estimate of Matas & Schnitzler (2004). When not
adjusted for the quality of life10, the savings for society per living unrelated donation are estimated at
$94,579. 3.5 QUALY’s are gained by living unrelated donation, adding this value leads to saving of
$269,319 (Matas & Schnitzler, 2004). As a total the costs of dialysis, in the USA, have been estimated
to be $17 billion a year spread out over 325,000 patients (Xue, 2010). Furthermore, the NHS
indicated the costs of conducting organ transplantation at an equivalent of $28,901 per patient (NHS,
2009). These figures represent the potential added social value of increasing living unrelated
donations and to what limit it is cost-effective to do so. A market for organ donation is one way to
increase living unrelated donation. Of course these figures in no way diminish or take away ethical
concerns, however they might be a step in the direction of a cost-benefit analysis.
10
A commonly used measure to express the impact on quality of life is the QUALY-measure(Quality Adjusted
Life Year)
31
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