Health care students support opt-out organ donation for practical and moral reasons

Abstract

Background and Purpose:

Changes to deceased organ donation policy in the United States, including opt-out and priority systems, have been proposed to increase registration and donation rates. To study attitudes towards such policies, we surveyed healthcare students to assess support for opt-out and priority systems and reasons for support or opposition.

Methods:

We investigated associations with supporting opt-out, including organ donation knowledge, altruism, trust in the healthcare system, prioritizing autonomy, and participants’ evaluation of the moral severity of incorrectly assuming consent in opt-in systems (“opt-in error”) or opt-out systems (“opt-out error”), by conducting an online survey among health care students at a large academic institution.

Results:

Of 523 respondents, 86% supported opt-out, including 53% who strongly supported the policy. The most popular reason for supporting opt-out was the potential for increased donation rates, followed by convenience for those not registered but willing to donate. The most popular reason for opposing opt-out was the belief that presuming consent is morally wrong. Those strongly supporting opt-out viewed the opt-in error as more morally unacceptable, and had higher knowledge and altruism scores. Those opposing opt-out viewed the opt-out error as more unacceptable, and had higher autonomy scores. 48% of respondents supported priority within opt-in systems; 31% supported priority in opt-out.

Conclusions:

There is strong support for opt-out organ donation among healthcare students, influenced by both practical and moral considerations.

INTRODUCTION

The shortage of organs available for transplantation results in limited access to transplantation in the United States and abroad. Policy strategies that may contribute to increased deceased donor transplantation rates include “opt-out” and “priority” systems. In “opt-out” systems, everyone is presumed to be a consenting donor and those who object to donating organs after death must actively register their non-consent. In practice, considerable variation exists among different opt-out systems: some allow family to override the presumed consent and refuse donation (“soft” opt-out), while others do not (“hard” opt-out).¹ In “priority” systems, such as the one in Israel, being a registered donor provides relative waitlist priority should the registered donor themselves ever need a transplant, if all else is otherwise equal between two transplant candidates.² These contrast against the current American “opt-in” system, where potential donors must actively register their consent. Additionally, registration as a potential deceased donor does not provide any potential benefit to the registrant.

It is controversial whether opt-out or priority policies have resulted in higher deceased donation and transplantation rates. While some studies found associations between opt-out and higher rates,^{1 3 4} others found no difference,⁵ or have attributed the difference to factors other than opt-out legislation, such as donor availability, transplantation infrastructure, and public knowledge and attitudes.^{6 7} In the US opt-in system, although registration rates vary among different racial/ethnic and socioeconomic groups,^{8 9} the overall deceased donation rate (36.1 per million people (pmp) in 2019) is one of the world’s highest, far exceeding the global average (7.1pmp), and is surpassed only by Spain (49.6pmp).¹⁰ In addition, within the American context, with its highly individualistic culture that is, even among other Western counties, uniquely anti-institution¹¹, a particularly salient concern is that an opt-out policy could be perceived to violate autonomy¹² and therefore meet significant opposition. While the 2019 National Survey of Organ Donation Attitudes and Practices found that more than half of Americans would support opt-out, the factors associated with, or reasons underlying, these opinions are not well-established. We therefore investigate the attitudes of a group of informed non-experts – health care students – towards these policies. We also investigate potential underlying reasons for their attitudes, such as the extent to which personal autonomy is valued over altruism, and associations with factors known to affect support for organ donation itself: knowledge about organ donation,^{13 14} level of altruism,¹⁵ and level of trust in the healthcare system.^{16 17}

In addition to effect on donation rates, the opt-in versus opt-out debate also centers around a moral question: which is worse, transplanting the organs of someone who would not have consented (as could occur in an opt-out system, the “opt-out error”), or failing to transplant the organs of someone who had wished to donate (as could occur in an opt-in system, the “opt-in error”)?¹⁸ Some ethicists argue that neither is worse, as both violate the deceased’s wishes, but in a society where most people do wish to donate – such as the US¹⁹ – an opt-out system produces fewer errors.¹⁸ Others refute this, arguing that governments have an obligation to obtain active consent, rather than implied consent, for organ donation¹². We investigate heath care students’ judgements on this moral debate.

Finally, in Israel’s opt-in priority system, registered donors and their first-degree relatives receive priority on transplant waitlists, all else being equal. Since introducing this system Israel’s share of registered donors has nearly doubled,²⁰ however actual deceased donation rates increased only modestly, from 8.7% to 11.7%.¹⁰ Continued barriers include perceived religious objections to organ procurement and the concept of brain death.²¹ Singapore uniquely assigns priority within an opt-out system: those who register as non-donors, should they need a transplant, are further back on the waitlist compared to equally ill presumed donors.²² Studies outside the US found that reasons for supporting priority include buy-in to the “golden rule” of reciprocity, and objection to the “free-rider” phenomenon (those who would accept a transplanted organ but refuse to donate).^{2 23} Those opposing priority worry about unfairly penalizing people with legitimate reasons for not wishing to donate – in particular, disadvantaged minority groups, thus exacerbating disparities.^{24 25} We investigate attitudes towards priority systems within opt-in versus opt-out systems in a US context. As the moral value of organ donation itself differs within an opt-in versus an opt-out context,²⁶ we hypothesize that views of reciprocity for organ donation would differ as well.

METHODS

Population and survey distribution

A web-based survey was distributed from September to November 2019 to healthcare students – including medical, nursing, physical therapy, occupational therapy, and public health students – at a large academic medical center in New York, USA. The survey was advertised via emails, posters, social media, and class announcements. Entry into a lottery for $5 gift cards was offered as incentive to participate. A small number of responses from the general public, used for sensitivity analysis, were collected via RecruitMe, an online research recruitment platform. This study was approved by the university’s Institutional Review Board (protocol numbers AAAS4468 and AAAS6931).

Survey content

Participants self-reported demographics including age, gender, race/ethnicity, religion, program of study, political alignment, and donor registration status.

Participants rated their support for opt-out systems and priority within opt-in versus opt-out systems using a 4-level scale (strongly oppose, oppose, support, strongly support). The systems were described to participants as follows:

• Opt-out : “The US currently has an opt-IN organ donation system… Austria, Spain, the UK and several other countries have an opt-OUT system, where everyone is presumed to be an organ donor, unless they or their family actively declare that they do not wish to be an organ donor.”

• Priority within opt-in: “Consider the opt-IN system…In some countries – such as Israel – people who register to be organ donors get “priority” for transplants, meaning that if they ever get sick and need a transplant themselves, they would be ahead on the waitlist, compared to other equally sick people who did not previously register as organ donors,”

• Priority within opt-out: “Consider the opt-OUT system... In some countries – such as Singapore – with opt-out systems, people who decline to be organ donors have their “priority” decreased, meaning that if they ever get sick and need a transplant themselves, they would be further back on the waitlist, compared to other equally sick people who are presumed organ donors.”

Participants also provided reasons for their support or opposition by selecting reasons with which they agreed from a given list, as well as writing free responses.

Subsequent questions investigated factors we hypothesized would affect opinions towards opt-out (Supplemental Table 1). Support for organ donation was measured using an 8-point scale that included a 4-level rating of support for organ donation in general, as well as questions eliciting decisions in hypothetical scenarios related to organ donation or transplantation. Knowledge about organ donation was evaluated using a 7-item scale focusing on knowledge about brain death and organ scarcity, both known to influence decisions regarding organ donation.^{2 27} Questions about procurement and allocation were also included. Altruism was measured using a 6-item scale adapted from Phillipe-Rushton’s validated altruistic behavior scale,²⁸ with questions modified to be more relevant to our study population. Trust in the health care system was measured using a 9-item scale adapted from Egede’s Multidimensional Trust in Health Care Systems Scale.²⁹ To evaluate the extent to which autonomy was valued over altruism, participants rated whether they agreed or disagreed with mandating an individual to save another person’s life in three scenarios: at no cost to oneself, at a minor cost (similar to a small time delay or inconvenience), or at a large cost (similar to going against one’s religious or moral beliefs). Disagreeing with mandating the hypothetical life-saving action would indicate prioritizing individual autonomy over societal benefit, and result in higher autonomy scores. Finally, the opt-in and opt-out errors and their respective consequences for the deceased person and for waitlisted patients were described to participants, who then rated how unacceptable was each scenario, on a 4-level scale (absolutely unacceptable, unacceptable, acceptable, perfectly acceptable).

Data collection and analysis

Support for opt-out was measured using four levels (strongly oppose, oppose, support, and strongly support) however only 1.5% of respondents selected “strongly oppose”, and so they were combined into one category with “oppose” for analyses. For ease of comparison between support for priority in opt-in systems versus in opt-out, both were collapsed from four levels (strongly oppose, oppose, support, and strongly support) into two (oppose and support).

Chi-squared tests were used to assess associations between demographic variables and support for opt-out. One-way ANOVA followed by pairwise testing with Bonferroni multiple-comparison adjustment was used to test for associations between support for opt-out and knowledge, altruism, trust in the health care system, and autonomy scores. Student’s t-test and the Wilcoxon rank-sum test were used to assess associations between these scores and supporting or opposing priority. Friedman tests were used to assess differences in how respondents rated the opt-in error versus the opt-out error, after installing the snp2_1/friedman.ado Stata package.

Data was analyzed using Stata MP 15.1 (StataCorp, College Station, TX). Alpha of <0.05 determined significance. In statistical analyses for each question, missing or undisclosed responses were excluded.

RESULTS

Of approximately 2900 students invited to participate (based on school enrollment data), 567 responded; 44 responses were missing >80% of answers and subsequently excluded entirely, leaving 523 included in the analysis (approximately 18% of invited participants). Respondents’ ages ranged from 21 to 61 years old (median 25, IQR 23–27). Respondents were predominantly female (69%), studying medicine (35%) or public health (27%), politically liberal (66%), white (49%), and non-religious (33%) or Christian (33%) (Table 1). The majority of respondents were registered donors (74%); among the remaining 25%, half reported not being registered because they had not gotten around to registering or did not know how to register, even though they wished to be donors (Supplemental Table 2).

Table 1.

Demographic characteristics and support for opt-out.

Groups of respondents	Number (col % of total)	# (row %) who oppose opt-out+	# (row %) who support opt-out+	# (row %) who strongly support opt-out+	p-value
All respondents (students)	523 (100)	70 (14)	168 (33)	265 (53)
Registration Status
Registered donor	388 (74)	31 (8)	118 (31)	231 (61)	p<0.001*
Not registered	129 (25)	39 (32)	49 (40)	34 (28)
Undisclosed	6 (1)	0 (0)	1 (17)	0 (0)
Age (Years)
21–25	305 (58)	44 (14)	104 (34)	157 (51)	p=0.421
26–30	134 (26)	18 (13)	37 (28)	79 (59)
31 & older	38 (7)	4 (11)	16 (42)	18 (47)
Undisclosed	46 (9)	4 (15)	11 (42)	11 (42)
Gender
Female	359 (69)	52 (15)	120 (33)	187 (52)	p=0.885
Male	121 (23)	16 (13)	39 (32)	66 (55)
Other++ or Undisclosed	43 (8)	2 (9)	9 (39)	12 (52)
Program
Medicine	185 (35)	25 (14)	52 (28)	108 (58)	p=0.029
Public Health	140 (27)	19 (14)	40 (29)	81 (58)
Dental	60 (11)	10 (17)	29 (48)	21 (35)
PT/OT	51 (10)	7 (14)	24 (47)	20 (39)
Nursing	45 (9)	6 (13)	14 (31)	25 (56)
Undisclosed	42 (8)	3 (14)	9 (41)	10 (45)
Political Alignment
Liberal	343 (66)	30 (9)	101 (29)	212 (62)	p<0.001*
Moderate	118 (23)	29 (25)	50 (42)	39 (33)
Conservative	19 (4)	7 (37)	7 (37)	5 (26)
Undisclosed	43 (8)	4 (17)	10 (44)	9 (39)
Race/Ethnicity
White	257 (49)	31 (12)	75 (29)	151 (59)	p=0.125
East/Southeast Asian	69 (13)	10 (14)	30 (43)	29 (42)
South Asian	43 (8)	11 (26)	15 (35)	17 (40)
Hispanic/Latino	32 (6)	5 (16)	9 (28)	18 (56)
Black/African Am.	12 (2)	2 (17)	6 (50)	4 (33)
Other+++	12 (2)	1 (8)	3 (25)	8 (67)
Mixed Ethnicity	47 (9)	4 (9)	18 (38)	25 (53)
Undisclosed	51 (10)	6 (19)	12 (39)	13 (42)
Religion
Non-religious	174 (33)	11 (6)	44 (25)	119 (68)	p<0.001*
Christian/Catholic	170 (33)	29 (17)	61 (36)	80 (47)
Jewish	44 (8)	5 (11)	20 (45)	19 (43)
Hindu	23 (4)	6 (26)	8 (35)	9 (39)
Other++++	30 (6)	8 (27)	11 (37)	11 (37)
Undisclosed	82 (16)	11 (17)	24 (39)	27 (44)

⁺Does not include 20 respondents who did not disclose their level of support for opt-out.

⁺⁺Gender: “Other” includes non-binary (3), genderqueer (1), and “human” (1).

⁺⁺⁺Race/Ethnicity: “Other” includes Middle-Eastern (8), Native Hawaiian or Pacific Islander (2), and American Indian or Alaska Native (2).

⁺⁺⁺⁺Religion: “Other” includes Muslim (13), multi-religious (9), Buddhist (6), and Sikh (2).

Attitudes towards an opt-out donation system

Respondents overwhelmingly supported organ donation (98% supported, including 78% who strongly supported), and stronger support for organ donation was associated with supporting opt-out (Supplemental Figure 1). The majority of respondents (86%) supported opt-out organ donation, including 53% who strongly supported the policy (Table 1). Strongly supporting opt-out was observed most frequently among medicine (58%) and public health students (58%), and among politically liberal (62%) or non-religious (68%) students.

The most commonly selected reasons for supporting opt-out were that opt-out could increase organ donation rates overall (91%), and would be more convenient for people who want to register but do not get around to registering (73%) (Table 2). The most frequently selected reason for opposing opt-out was that presuming consent in any context is wrong (73%).

Table 2.

Reasons for supporting or opposing opt-out.

Reason for supporting opt-out	Frequency selected (number, % out of 433)	Reasons for opposing opt-out	Frequency selected (number, % out of 70)
Opt-out would increase organ donation rates overall.	392 (91%)	Presuming consent for organ donation is wrong.	51 (73%)
Opt-out is convenient for people who are willing to be registered donors, but do not register.	317 (73%)	Americans value autonomy, so they will choose to opt-out.	16 (23%)
Failing to recover organs that could save lives is wrong.	159 (37%)	People don’t trust the government, so they will choose to opt-out.	8 (11%)
Most Americans support organ donation, and would not choose to opt out.	116 (27%)	Opt-out would NOT increase organ donation rates overall.	7 (10%)

Those who strongly supported opt-out had higher knowledge scores (5.09 out of 7, versus 4.40 for those who supported opt-out but not strongly, and 4.46 for those who opposed opt-out) and higher altruism scores (14.03 out of 24, versus 13.01 and 12.97) (Figure 1a, 1b). There was no significant association between support for opt-out and level of trust in the health care system (Figure 1c). Those who opposed opt-out had a higher mean autonomy score (10.23 out of 12, versus 8.17 for strong supporters and 8.56 for the “moderate” supporters) (Figure 1d).

Figure 1. Knowledge about organ donation, level of altruism, trust in the health care system, and valuing autonomy over altruism among different levels of support for opt-out.

Grey circles indicate individual scores on the knowledge (1a), altruism (1b), trust (1c), or autonomy (1d) scales. Red lines indicate group means, framed by black lines marking the standard deviations. P-values in the bottom right of each frame are results of one-way ANOVA testing. Means and standard deviations are written above each plot, with statistically significant values marked by a black frame. Asterisks next to mean and standard deviation values indicate significant results from pairwise testing with Bonferroni multiple-comparison adjustment, using respondents who support (but do not strongly support) opt-out as the reference group: * indicates p<0.05, and ** indicates p< 0.001.

Erroneous presumptions of consent were overall deemed unacceptable. The opt-in error and the opt-out error were viewed by 90% and 88% of respondents, respectively, as either “unacceptable” or “absolutely unacceptable” (Figure 2a). Those who strongly supported opt-out viewed the opt-in error as more unacceptable (Figure 2b), while for “moderate” supporters the opt-out error was more unacceptable (Figure 2c). Those who opposed opt-out also viewed the opt-out error as more unacceptable (Figure 2d), and the difference in their level of acceptance between the two errors was more pronounced than that of the other two groups.

Figure 2. Moral severity of erroneous presumptions of donation intent in opt-in versus opt-out.

Bars indicate the proportion of respondents who viewed the opt-in or opt-out error as absolutely unacceptable, unacceptable, acceptable, or perfectly unacceptable, among all respondents (a), those who strongly supported optout (b), those who supported opt-out but not strongly (c), and those who opposed opt-out (d). Numbers above each bar indicate the percent of respondents at each level of support for opt-out who selected that option. Asterisks indicate statistically significant p-values obtained using the Friedman test.

Attitudes towards a priority system

Respondents were ambivalent towards priority: 52% opposed priority within opt-in, almost all of whom (92%) also opposed priority in opt-out (Table 3). However, among the 48% who supported priority within opt-in, attitudes towards priority in opt-out were split. Approximately half (56%) of those who supported priority in opt-in also supported priority in opt-out, while the other half (44%) opposed it. There was no association between supporting priority in either system and knowledge, altruism, trust, or autonomy scores (Supplemental Table 3).

Table 3.

Attitudes towards priority in opt-in versus opt-out, and reasons for support or opposition.

	All respondents	SUPPORT priority in opt-OUT	OPPOSE priority in opt-OUT
SUPPORT priority in opt-IN	235 48% (col %all)	131 56% (row%)	104 44% (row%)
OPPOSE priority in opt-IN	257 52% (col %all)	21 8% (row %)	236 92% (row%)
Reason for supporting priority in opt-IN	Frequency selected (#, % out of 235)	Reason for supporting priority in opt-OUT	Frequency selected (#, % out of 152)
Increase donation rates by encouraging registration.	192 (82%)	Increase donation rates by discouraging opting out.	97 (64%)
Most appropriate incentive, compared to other options (e.g. cash payment, other financial incentive, life insurance, etc.).	119 (51%)	Reciprocity/“golden rule”: people who refused to be organ donors, should not have the same chance of benefiting from organ transplantation as registered donors.	90 (59%)
Reciprocity/“golden rule”: people who did not register should not have the same chance of benefiting from organ transplantation as registered donors.	80 (34%)	Most appropriate incentive, compared to other options (e.g. cash payment, other financial incentive, life insurance, etc.).	63 (41%)
Reason for opposing priority in opt-IN	Frequency selected (#, % out of 259)	Reason for opposing priority in opt-OUT	Frequency selected (#, % out of 340)
It is wrong to discriminate against people who did not register as donors.	211 (81%)	It is wrong to discriminate against people who refused to donate.	280 (82%)
Could create divisiveness among social groups that have different donor registration rates.	157 (61%)	Could create divisiveness among social groups that have different donor registration rates.	152 (45%)
De-values altruism of registering as donor.	80 (31%)	De-values altruism of registering as donor.	72 (21%)
No benefit for donation rates – not an effective incentive for opting in.	54 (21%)	No benefit for donation rates – not an effective deterrent against opting out.	42 (12%)

The most frequent reason for supporting priority in either opt-in or opt-out contexts was the hypothetical potential to increase registration rates, either by encouraging opting-in (82%) or discouraging opting-out (64%) (Table 3). The idea that priority is the most appropriate incentive for being a donor, compared to other options, was a more frequent reason for supporting priority in opt-in (51%) than in opt-out (41%). Meanwhile, the idea of reward for good actions or punishment for bad actions (i.e. the “golden rule” of reciprocity) was a more frequent reason for supporting priority in opt-out (59%) than in opt-in (34%) (Table 3).

Reasons for opposing priority in opt-in and in opt-out were similar. The most popular reason was the counter-argument to the “golden rule”: that it is wrong to discriminate against those who either do not opt-in (81%) or choose to opt-out (82%). The possibility of creating divisiveness among social groups with different registration rates was second most frequent within both systems (opt-in, 61%; opt-out, 45%). Potential de-valuing of the altruism associated with being a donor was third most popular (opt-in, 31%; opt-out, 21%). Potential effects on donation rates was an infrequent reason for opposing priority in either system (opt-in, 21%; opt-out, 12%) (Table 3).

Results of a sensitivity analysis, done using 71 responses collected from the general public, largely mirrored those from the primary analysis of students (Supplemental Tables 6–8, Supplemental Figure 2).

DISCUSSION

Each day, approximately 20 patients in the United States die while waiting for a solid organ transplant.¹⁹ Policies strategies that may help to increase organ donation rates merit careful consideration. Although countries with opt-out policies typically have higher deceased donation rates,^{1 4} there are notable exceptions: in Brazil and France, donor registration rates decreased after implementing opt-out, partly due to mistrust of the government and negative press surrounding organ procurement.³⁰ Spain, with its long-standing opt-out policy, has the world’s highest deceased donation rates; however Spanish experts attribute this success not to the opt-out policy, but to a combination of strategies including early referral of possible donors outside of the intensive care unit to palliation, incorporating organ donation into end-of-life care, using organs from expanded-criteria donors, and developing a framework for donation after circulatory death.⁷ Nonetheless, many regions have recently adopted opt-out policies, including the United Kingdom (UK),³¹ and the Canadian provinces Alberta and Nova Scotia.^{32 33}

Opt-out remains controversial in the US. The Advisory Committee on Organ Transplantation established by the US department of Health and Human Services (HHS) recommended the Secretary of HHS to “encourage States to undertake demonstration projects to test the feasibility of adopting a model of presumed consent to organ donation”.³⁴ Opt-out bills have so far been introduced in several states, though none have yet passed.^{35 36} One simulation predicted that opt-out organ donation policies in the United States could decrease waitlist removals due to death or illness by up to 52%,³ while other experts argue that such a policy does not align with the US’s autonomy-based culture and that despite being an “opt-in” country, donation rates in the US already exceed those in many opt-out countries.³⁷ Central to the controversy is this ongoing debate regarding whether opt-out would actually increase US donation rates, and understanding the current views of healthcare workers towards opt-out or priority is one crucial component of understanding how such policies would be potentially received. Our study is the only recent in-depth exploration of opinions and attitudes towards opt-out and priority in the United States and the only one focused specifically on future healthcare workforce members.

Our finding that 86% of students supported opt-out suggested greater support than previously reported. In a 1985 phone survey of the public, 7% supported opt-out;³⁸ in a 1992 survey of undergraduate students, 60% supported opt-out;³⁹ most recently, the 2019 National Survey of Organ Donation Attitudes and Practices found that 56.3% of Americans support opt-out. Although these studies were done in different populations and have limited comparability, together they may nonetheless suggest a trend of increasing support. Overall, opt-out bills could garner significant support among certain populations at present, with the possibility for increased support in the future.

Our findings suggest that both moral and practical considerations at the societal and individual levels underlie support for opt-out. In our study, the most frequent reason for supporting opt-out, selected by 91% of supporters, was the perception that it may increase organ donation rates, indicating widespread support for this practical societal need. Practical considerations at the individual level are demonstrated in that the second most frequent reason was convenience for those who wish to be donors but are not registered. Indeed, in agreement with previous studies,¹⁹ we found that most individuals who were not registered donors did actually wish to donate, but simply did not get around to registering or did not know how to register.

In addition to practicality, strong supporters of opt-out had a moral dimension to their attitude: this group considered the opt-in error to be more unacceptable than the opt-out error. In both error scenarios, the deceased’s wishes are unknowingly violated, but a social benefit – that waitlisted patients could receive transplants – results from the opt-out error only. Strong supporters’ greater tolerance for the opt-out error reflects the belief that, as one respondent wrote, “from a moral perspective, an opt-out program serves the greater good of society.” This belief is likely influenced by the strong supporters’ high altruism scores.

Interestingly, those who supported but did not strongly support opt-out viewed the opt-out error as more unacceptable. For these “moderate” supporters, morality may be less important than other factors such as practicality or convenience. Opt-out errors result in loss of access to transplants for living patients, a consequence to which healthcare students in our survey are particularly attuned. With their consequentialist viewpoint, “moderate” supporters support opt-out with the assumption that this policy will alleviate the long transplant waitlists. However, as this assumption may not be true, if these respondents were more informed, their opinion may change. However, their consequentialism likely guarantees their support for other, more evidence-based policies that could increase transplantation rates, such as Organ Procurement Organizations (OPOs) running donor registration at Department of Motor Vehicles (DMV) offices,⁴⁰ or strategies similar to the Spanish model described above.

For the minority who opposed opt-out, however, moral values were highly salient; practical considerations less so. The perception that opt-out may not increase donation rates was the least frequent reason for opposing the policy. The most frequent reason was that presuming consent is wrong: “There should be consent. Saying yes means yes,” one respondent wrote. Such beliefs reflect strong valuing of autonomy, and indeed, opposing opt-out was associated with higher autonomy scores. Furthermore, it is not only actual violations of autonomy, but also value judgements of such violations, that underlie opposing opt-out. Those who opposed opt-out were more accepting of the opt-in error, with a higher tolerance for the opt-in error than even that of strong opt-out supporters for the opt-out error. As autonomy is violated in both error scenarios, those opposing opt-out likely view the opt-out error as a morally worse violation, presumably even outweighing the societal benefit of transplants for waitlisted patients.

In contrast to the high level of support for opt-out, attitudes towards priority within both opt-in and opt-out were overall ambivalent, indicating less enthusiasm for these policies in the US. However, our findings provide insight into how default options affect moral judgements with regards to organ donation.

The moral value of organ donation itself changes within the contexts of opt-in versus opt-out systems. A 2012 study found that being a donor in an opt-in system was considered morally similar to donating half of one’s wealth to charity after death, while in opt-out it was similar to letting others get ahead in a line; conversely, not donating had more negative significance in opt-out than in opt-in.²⁶ Respondents to our survey believed that, as one respondent wrote, “priority for opt-in is an incentive, but in opt-out it is a punishment,” and those who supported one did not necessarily support the other. The meaning of being a registered donor, and therefore appropriate reciprocity for being a registered donor, changes depending on the systems. In an opt-out system where donation is the default, being a donor may be viewed as a social responsibility; in an opt-in system where the default is not to donate, the being a donor is viewed as exceptional altruism. These findings reveal two sets of values regarding social obligations that are reflected in opinions towards opt-out: one set values individual rights and autonomy, the other values societal obligations and group benefit. For the second group, opt-out, as one supporter wrote, “communicates and supports a cultural norm that is more ideal than the status quo.”

Several study limitations should be considered. As with most survey studies, not all potential participants completed the survey, and it is possible that response bias reduces the generalizability of our findings. Furthermore, health care students do not necessarily represent the American population at large, and although results from our sample of general public respondents largely corroborates findings from the main student analysis, our study population is overall biased towards strongly supporting organ donation and supporting opt-out, and therefore our findings may have limited generalizability. Reflecting the demographics of academia in the US, Black and Latino respondents are underrepresented in our survey. As race/ethnicity and socioeconomic status affect donor registration rates,^{8 9} without adequate representation we should hesitate to make policies pertaining to organ procurement and allocation. Finally, we do not explore other factors that are crucial to the success of any new policy, such as infrastructure, enforcement variations, public education, and political leadership. Our survey underrepresents those identifying as politically conservative; as conservatism is often associated with valuing autonomy, if this survey were conducted in a more politically conservative region, results may differ. Given the individualistic American culture, and the current polarization in American society that permeates to attitudes about public health, implementing opt-out or any other new system will likely require effective public information campaigns, as well as highly visible support from leaders across the political spectrum.

CONCLUSIONS

Healthcare students strongly supported opt-out organ donation, for both moral and practical reasons. Among the minority who opposed opt-out, morality was much more salient than practicality. Differing attitudes towards priority within opt-in versus opt-out systems show that organ donation itself is viewed differently in each system, suggesting that an opt-out system could change the moral value of organ donation itself, and thus set cultural norms that align with the ideals of those who prioritize societal benefit over individual autonomy.

ABBREVIATIONS:

HHS

Health and Human Services.

US

United States.

IQR

interquartile range.

Pmp

per million people.

OPO

Organ Procurement Organization.

DMV

Department of Motor Vehicles.

UK

United Kingdom.