Faculty School of Economics

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

Table of Contents

1.Introduction

2.What are the existing policies?

2.1.1 Behavioural aspects

2.1 Opt-in vs. Opt-out

2.1.2 Soft and Hard Presumed consent

2.2 Mandated Choice

2.3 Priority rule

3.Market

3.1 Is it ethical to facilitate a market for organ donation?

3.1.1 Commodification of the human body

3.2 Does a market lead to improvements?

3.2.1 Empirical examples

3.2.2 Effects of a market for organs

3.2.3 Crowding out of altruistic behaviour

3.2.4 The expected new Supply of organ donors

3.3 How should a market be organised?

3.3.1 Who controls the market?

3.3.2 What sort of compensation

3.3.3 Limiting ethical concerns

4.Conclusion

4.1 Discussion

5.References

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 5thof 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 promising36% 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 exists[1]. 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 particularpossible 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 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.

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 individualsreact 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 consentrate (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 UKis thought to be23.2 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.

Figure1 (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 wasconfronted 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 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 1986-resulted in an increase from 18,9 to 41,3 donationsPMP 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 consentled 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 enoughevidence 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 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 issupported, 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 showedcognitive 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.

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 anincompability 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 transplantationprofessionals 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).