The aims of this study were to survey Saudi public preference and perception of norm on several consenting options for posthumous organ donation and determine if they are associated with certain demographic data. We studied a convenient sample of 698 adults in the outpatient setting at a tertiary healthcare center in Riyadh, Saudi Arabia. The study sample had a mean (SD) age of 32 (9) year, 27% were males, and 60% had college or higher education. The strengths of the study include a relatively large sample size, a high response rate, simultaneous examination of preference and perception of norm, directly comparing various consenting options, and uniquely addressing Islamic/Arab culture. We found that: 1) most respondents were in favor of posthumous organ donation, 2) mandated choice system was the most preferred and presumed consent system was the least preferred, 3) there was no difference between preference and perception of norm in consenting systems ranking, and 4) financial (especially in females) and medical (especially in males) incentives reduced preference for mandated choice and informed consent options.
In trying to adopt a consenting system for posthumous organ donation, the following considerations are relevant.
1) A common notion is that living people may have interests in the future when they have ceased to exist; although experiential interests are fulfilled only during life, critical interests, such as interest in a good reputation, confidentiality, and body organs after death, can be fulfilled after death [15, 16]. Such critical interests may matter because of their importance for people when they were alive, to avoid psychological injury to family, and to promote socially desirable behavior.
2) Is the body a property? One of the fundamental rights is self ownership; the right of non-interference in one’s body without consent. In certain situations, this right is extended to accept payment for body usage (for example, when remuneration is offered for participation in research), and it has been argued that body organs are akin to goods to which one can claim rights [17, 18]. However, it is clear that people don’t own their bodies in the way they own their homes. In contrast to natural rights theory, social constructivist theory hold that property is a socially constructed bundle of separable social relations rather than an indivisible unit, and that ownership is a legal relation between the owner and non-owners (rather than between the owner and the owned subject). Thus the issue of property rights to organs should not be reduced to a simple binary issue of owning and not owning .
3) Who “owns” the body of the deceased? The family has a limited property rights in the body of the deceased according to US court . Since the sense of body ownership is related to the interest of what happen to the body rather than to financial transaction, it is difficult to think of owning one’s body after death. On the other hand, the communitarian approach (concept of reciprocity) suggests that organ donation is an act of paying back of an obligation to the community . Do individuals’ critical interests in the disposition of their organs after death trump the experiential interest of family members or the experiential interest of organ recipients?
4) The magnitude of psychological harm from an erroneous donation under presumed consent may be more than that from an erroneous non-donation under informed consent; the disutility of losing may be more than the disutility of not getting, and expressing opposition may reflect deeper commitment than expressing agreement.
5) People may be more likely to donate when they feel they retain control and people may not object to the act of donation but to the consenting system itself. An act that is freely chosen, regardless of whether it is objectively wrong, may have a greater moral value than an act that may be objectively good but has not been freely chosen [7, 20, 21].
Diversity in preference and perception of norm
The observed diversity in preferences suggests that a one-size-fits-all policy on posthumous organ donation may results in some degree of public dissatisfaction. The diversity in perceptions of norm may be due to an absence of a norm, that the norm is not well known to the public, or that there are several rather than a single norm. The later is more likely. There is of course no statement in Quran or Prophet Muhammad’s Sayings that directly address organ donation, consequently positions on organ donation are based on interpretation. The Saudi Senior Ulama Commission decree issued in 1982 permitted organ donation and transplantation from living and deceased donors . However, although most current Islamic scholars are in favor of posthumous organ donation, some disagree. Further, there is disagreement among who allow organ donation and whether it is obligatory, encouraged, or just permitted. Based on interviews with the main faith and belief organizations (including Islamic) within the UK, it was found that none was against organ donation in principle, that the majority opinion in each faith group permit organ donation, and that there is a broad spectrum of opinions within each group . A 1996 study conducted in Saudi Arabia found that 56% believed that Islam permits transplant and 31% did not know  and a 2005 study found that 29% believed that Islam permits transplant and 24% did not know . Similarly, a study on students from the faculty of theology in Turkey found that 16.5% thought that organ donation is not in accord with Islamic beliefs . A more recent study in Pakistan found that that the belief that organ donation is allowed in religion was a significant independent predictor for willingness to donate .
Preference for organ donation
Understanding cultural expectations can provide insight into people preferences and perceptions. Just as secular Western societies continue to be influenced by Judo-Christian norms concerning social ethics , Arabic and Islamic societies are still influenced by Islamic social ethics which shares many foundational values with Judaism and Christianity . Saving life and helping others are praised in several verses of Quran, for example, “and if any one saved a life, it would be as if he saved the life of the whole people.” (Chapter 5, verse 32) .
We found that only 13% and 8% of respondents selected the option of no-organ donation as the first choice for personal preference and perceived norm, respectively. This is consistent with previous studies in Saudi Arabia [23, 24, 30, 31] and other Islamic countries [25, 26, 32–35]. In Saudi Arabia, a 1991 study found that 53% of responders either signed a kidney donor card or expressed willingness to do so , a 1996 study found that 67% were willing to donate , a 2005 study found that 42% agreed to donate , and a 2009 study found that 71% were willing to donate . A 2005 study in Qatar, found that 37.8% of Qataris and 32.8% of non-Qataris were willing to donate , a 2009 study in Pakistan found that 62% expressed a motivation to donate , a 2006 study in Nigeria showed that 30% expressed a willingness to donate , a 2009 study in Malaysia showed that 41% reported that they have registered to be organ donors or indicated willingness to donate , and in Turkey, a 2002 study found that 57% were willing to donate  and a 2009 study of students from the faculty of theology found that 24% were willing to donate their organs and 57% were undecided .
It is not known if the degree of the expressed preference for donation would change during illness or impending death. Interestingly, we found no difference between subgroups based on perceived health status or reported reason for hospital visit (having a clinic appointment vs. being a companion) in personal preference or perception of norm.
Mandated choice system was the most preferred
We found that the most favorable system (both from the point of personal preference and the point of perception of norm) for consenting for posthumous organ donation was the mandated choice system. In this line, a survey of young adults in the USA indicated that 90% supported mandated choice (vs. 60% for presumed consent) . Further, the UK Royal College of Physicians has called for a system of mandated choice , which was also the preferred option of the American Medical Association and the United Network for Organ Sharing (UNOS) but not the British Medical Association .
Mandated choice system falls between informed consent system on one hand and presumed consent and mandated donation systems on the other. Advocates of mandated donation system, a system based on the notion of normative consent (it is immoral for an individual to refuse consent) , and the belief that the body should be considered as “on loan” to the individual from the biomass , argue that people should not be permitted a choice in this matter. It is counter argued that choosing not to save someone’s life is not the same as murder, and that although utilitarianism makes no distinction between causing an event and allowing it to happen when it was physically within our power to prevent , people (and deontologist) differentiate between intended harm and foreseen harm . Further, mandated donation system would remove the moral content of organ donation since beliefs and desires matter for moral judgments (e.g., we forgive accidental harms and condemn failed attempts to harm) . Furthermore, there are surviving (or persisting or critical interests) of the dead that should be respected [15, 16, 40]. Advocates of informed consent system argue that compelling people to choose may undermine autonomy because it constitutes a coerced burden. However, mandated choice does promote autonomy, from the point of view that it ensures that one’s preference is respected, and the coerced burden is not dissimilar to the duty of easy rescue (low burden that makes a great difference). In this line, not helping others when the cost to the helper is trivial is condemned in Quran, “So woe to the worshippers, Who are neglectful of their prayers, Those who (want but) to be seen (of men), But refuse (to supply) (even) neighborly needs (Al-Ma'un, small kindnesses e.g. salt, sugar, water, etc.).” (Chapter 107, verses 4–7) . It has been argued that if respect for individual autonomy is the greatest concern, then mandated choice is preferred. If ensuring an adequate supply is considered to be most important, and mandated choice is unable to achieve the goal, then conscription is the best approach .
The implementation of a mandated choice system may not be easy as it requires a centralized data bank and may reduce organ availability; it was tested in Texas during the 1990’s, when forced to choose, almost 80% of the people chose not to donate . A mandated choice where the accompanying public education is pro donation has been recommended .
Presumed consent system was disfavored
We found that the presumed consent system is the most disfavored among the options studied (we did not explore family involvement or differentiate between stringent and lenient systems). A systemic review of 8 attitude surveys of the UK public to presumed consent reported 28-57% support before 2000, which increased to 64% in 2007 . Surveys from other countries, showed that only in Belgium was there an overall approval of presumed consent . The majority of faith and belief leaders in the UK was supportive of the opt-in system, and favored retaining it over the introduction of an opt-out system . Presumed consent was not supported by the Institute of Medicine and was rejected by the American Medical Association’s Council on Ethical and Judicial Affairs; however, the British Medical Association produced a report supporting it .
The presumed consent system has been the subject of major public and ethical debates because it put the utilitarian and rights and justice approaches to ethics in conflict. It is associated with higher donation rate [4, 45], and the association may be causative , however, the extent of which has been debated . Presumed consent system may represent a violation of the right of autonomy, where the individual’s body would become public puberty unless claimed otherwise , and it has been argued that is not really an informed consent (as there may be newer procedures that were not envisioned by the patient at the time the intent was expressed) and that silence can be a sign of ambivalence and confusion rather than willingness . Further, it may be considered by some as inaccurate and misleading; unlike the presumptions in law and science, presumption of consent cannot afford any possibility of reversing the decision or retracting any action based on the decision . Furthermore, vulnerable populations such as minority cultural groups and immigrants may be less likely to support donation, less likely to realize that a presumed consent system exists, and more likely to find it challenging to opt out of donating .
The expressed disfavoring of presumed consent that we found in our study could be due to distrust in the medical system (people may feel that less effort will be made to keep them alive, that their body will be mutilated) and to the feeling of losing control. Additionally, based on the virtue approach to ethics, one need to will the good act [21, 48]. Islamic teachings emphasize the importance of the intention and will. Prophet Muhammad said, "The reward of deeds depends upon the intentions and every person will get the reward according to what he has intended” (Sahih Albukhari Volume 1, Book 1, Number 1) . The fact that the respondents disfavored incentives suggests that they favor donation for altruistic reason. Since altruism requires wanting and willing the act, one would expect that presumed consent will be disfavored.
Negative effect of added incentives
We found that adding a medical or financial incentive to a mandated choice, donor-only, or donor-or-surrogate system had a negative effect both from preference, and to a lower extent, norm perception points of view. Adding financial incentive had more negative effect than adding medical incentive, which was mainly due to increased less favorable ranking rather than intermediate ranking.
Organ donation has long relied on altruism. However, financial incentives have been advocated . The majority of members of the American Society of Transplant Surgeons supported funeral reimbursement or charitable organization donation  and the Council on Ethical and Judicial Affairs (1995) of the American Medical Association has recommended that an empirical trial of financial rewards for organ donors should be conducted to determine its impact on overall donation rate .
Arguments in favor of adding incentives include an increase in organ supply based on basic economics , intrinsic fairness with regard to opting in, and that failure to allow incentives interferes with individual anatomy. It is of note that the current system is based on gain for all concerned, except the donor who makes the sacrifice. Arguments against adding incentives include that it still represents compensation akin to purchase and thus can negatively affect altruistic culture and lead to exploitation of lower income groups, that it results in decreased respect for sanctity of human body , that its implementation is difficulty (the problem of cheap commitment), and that for in kind medical incentives, the fact that apart from an organ one needs health insurance to get a transplant, and that it favors larger families with more first-degree relatives. Further, willingness to donate might not necessarily increase donation rate if relatives can still decline organ donation ; individuals are more likely to donate their organs than to donate their deceased relatives’ organs , and inducements to register as an organ donor may distort the signal that registration makes about preferences (induce family members to impute a weaker preference) .
We are not aware of published public surveys on medical incentives. Consistent with our results, a 2005 study in Saudi Arabia found that only 0.6% of the respondents agreed to donate their organs after death for financial reasons  and a study in Scotland found that only 21% agreed that a financial incentive should be used . However, lack of incentives was stated as a reason for not willing to donate by 14% of rural and 47 %urban Saudis , and 59% of respondents in Pennsylvania favored the general idea of incentives with 53% saying that direct payment would be acceptable [1, 58]. The reason for disfavoring incentives in our study sample is not clear. Consistent with our observation that financial incentive was more dis-favored than medical incentive (and more sharply so), it is possible that people feels that donation is an act of charity that should be done purely for the sake of God and thus should not be compensated and that organs are not a property of the person and are too sacred to be exchanged for material benefits .
No difference between preference and perception of norm
Although the public generally express favorable views toward organ donation [16, 60, 61], few actually take the necessary steps [6, 16]. The gap between favorable opinion and actual behavior could be due to the difference between preference and perception of norm; individuals may express favor towards organ donation as an abstract concept for the society , whereas a statement of a preference is more a statement about the person who has the preference than the issue. Alternatively, the gap could be due to biased surveys or to obstacles (relative to the strength of preference) in converting a preference to an action (because of inertia and disutility of thinking about death) . Our failure to find significant differences between preference and perception of norm suggests that the gap may be due to obstacles. However, such failure could be due to respondents’ inability to differentiate between the two. This is not likely because they were relatively highly educated (61% had college or higher education) and the two questions were presented at the same time. Alternatively, it may reflect a rather norm-desiring culture that seeks harmony between motives (preference) and reasons (perception of norm) or a social desirability bias (a low inclination to express a preference that is different from the perceived norm). Previous studies in the same population showed no significant difference between preference and perception of norm in regard to disclosure of medical errors  but not to consenting for research on left over tissue samples .
Association with demographics
We found no significant correlation between ranking scores for each of the consenting options and age. However, older age was positively associated with ranking score for the no-organ donation option. This is consistent with previous studies showing that older people are less likely to donate and that younger age correlates positively with willingness to donate . However, a study in Barbados, a middle income country in eastern Caribbean  found no association between age and attitudinal barriers. We found no difference between subgroups based on education level. This is in contrast to previous studies. Rural respondents in Saudi Arabia were less likely to report willingness to donate organs or to sign a donation card , and those who had finished their studies by the age of 15 were approximately half as willing to become a cadaveric donor as those who had completed additional schooling .
There is some evidence that individuals who find themselves increasingly likely to need an organ more intensively perceive the benefits of organ donation . We found no difference between subgroups based on perceived health status, perceived reason for hospital visit, or reporting knowing an organ recipient. However, interestingly, respondents who reported knowing an organ donor more favored the presumed consent option and more disfavored no-organ donation option (borderline significance). It is of note that although 55%of the current study population had clinic appointment, 73%were self-perceived as healthy, which has been noted in a previous study and may reflect adaption to the state of illness .
Finally, we found that the addition of financial incentive has a more negative effect on females’ preference and perception of norm than on males. The addition of medical incentive has the opposite affect. This may reflect a difference in gender view of the two types of incentives based on current social role, financial incentives may be seen more amoral and medical incentives less amoral by females because females carry less financial responsibility and are less affluent than males. Females were also less likely to perceive donor-or-surrogate informed consent (but not donor-only informed consent) as the norm, maybe unconsciously stressing self-based (rather than family-based) decision making. Some  but not all  studies have shown that females may be more likely to donate.
The study was based on convenience sampling and was performed in a single tertiary health care institution in a major metropolitan city and thus the results may not be generalizable to the general public. Further, the study sample overrepresented females and people with higher education. However, it is of note that the institution is a governmental referral center for the entire country, restricting analysis to males or females did not change the main conclusions of the study, and subgroup analysis based on education level did not reveal significant differences (though there was relatively small numbers in the lower education groups). Since public opinion regarding the various systems for posthumous organ donation would be expected to continue to evolve, the results may not be extrapolateable in time. The study also addressed preferences and perceptions rather than actual choices and did not include the option of family veto.