Population
The study population includes a total of 1195 respondents, see Table
1. A total of 3431 people were called, of which 1402 did not wish to participate and 834 were excluded (reasons: could not be contacted, disease or death, did not speak Danish, or place of residence not part of target group), resulting in a response rate of 46.0 % of the eligible sample or 34.8 % of the total number of respondents called. The respondents were equally allocated in the two genders and had a mean age of 49.4 years (range 18 to 102, SD 18.8). Among those who considered themselves religious (25.8 %;
n = 308), the most common religious identification was Christian Protestantism.
Attitudes towards organ donation
Re-using a question asked in 1995, 2001 and 2006 in surveys by The National Board of Health, we asked, ‘What is your general attitude towards organ donation and transplantation?’, and found that 2.2 % stated being negative or very negative, 5.9 % neither negative nor positive and 91.9 % positive or very positive. We correlated this with the age of our respondents and found that the younger age group, aged 18–34 years, was the most positive (95.5 % positive or very positive), followed by respondents aged 35–55 years (93.1 % positive or very positive) and finally the respondents aged 56 years or above (92.1 % positive or very positive).
To gain a deeper understanding of attitudes towards organ donation, we asked our respondents which actions they were willing to take in relation to donating and receiving organs and tissue. Respondents were asked to disregard any potential biological obstacles to donation and consider a manner of death where organ donation is possible. As Table
2 shows, the majority of our respondents stated willingness to take action in organ donation. More than four out of five stated that they would donate their own organs (85 %) and tissue (82.1 %), if they should die under circumstances allowing for donation. The attitudes towards donating an organ or tissue are very similar to the attitudes towards receiving an organ (87.4 %) or tissue (88.6 %).
Table 2
Attitude to actions: personal agreement with particular donation actions
Would you be willing to donate your organs after death? | 85 | 7 | 8 |
Would you be willing to donate your tissue? | 82.1 | 8.8 | 9.1 |
Would you be willing to donate your closest relatives’ organs? | 64.7 | 22.2 | 13 |
Would you be willing to donate your closest relatives’ tissue? | 66.2 | 22.5 | 11.4 |
Would you be willing to receive organs from a dead donor? | 87.4 | 7.2 | 5.5 |
Would you be willing to receive tissue from a dead donor? | 86.4 | 7.6 | 6 |
Would you be willing, as a living donor, to donate a kidney to a person of your choice? | 85.2 | 8.2 | 6.6 |
Would you be willing to receive a kidney from a living donor? | 87.6 | 7.9 | 4.5 |
Fewer, though still a majority, of the respondents, stated that they would also be willing to donate the tissue (66.2 %) and organs (64.7 %) of their relatives. If the respondent answered either ‘no’ or were undecided on the question, ‘Would you be willing to donate your closest relatives’ tissue/organ?’, they were given a sub-question, ‘Would it change your decision if you had knowledge that your relatives wished to donate their organs?’ Of those who answered ‘no’ or were undecided in relation to donating their relatives’ organs or tissue (or both), a significant majority (79 %) stated that it would make them change their answer, thereby allowing for organ and/or tissue donation on behalf of their relatives.
For those willing to donate their own organs and/or tissue, we further asked them if there were any organs or tissues they did not wish to donate. In the Danish organ donor registry, there is an option to register for limited consent and specify any organs one does not wish to donate. Of the respondents who wished to donate (n = 1053), the majority (87.1 %) did not have any restrictions to their donation. Of the remaining, our respondents mainly stated reluctance towards donating their corneas (eyes) (5.7 %; n = 60), skin (3.4 %, n = 36) and heart (2.5 %; n = 26).
In Denmark, living kidney donation is possible between relatives, and recently also between friends, and we asked about the respondents’ attitudes towards donating to a ‘person of your own choice’. As with postmortem donation, the majority of the respondents stated willingness to both donate (85.2 %) and receive (87.6 %) a kidney by means of living donation.
Personal reasoning in organ donation
To gain an understanding of the underlying personal reasoning for the desired action in organ donation, we presented the informants with statements about organ donation encountered in our 33 qualitative interviews, and they were asked to state their levels of agreement. As Table
3 shows, a majority of our respondents (96.6 %) agreed with the statement, ‘I think of organ donation as something you do to help others’. A majority (85.8 %) of our respondents agreed or strongly agree with the statement, ‘I like the idea that my body will be useful after my death’, and if looking only at those also stating a wish to donate their own organs, an even larger majority (92.8 %;
n = 939;
p < 0.05) agree or strongly agree with the statement. The majority (83.6 %) of the respondents do not consider organ donation an unpleasant sacrifice. A minority (12.7 %) agree with the statement, ‘I am afraid of not really being dead when the doctors remove the organs’.
Table 3
Personal reasoning: attitudes towards value statements about organ donation
I think of organ donation as something you do to help others. | 1.2 | 2.2 | 96.6 | – |
I think of organ donation as an unpleasant sacrifice. | 83.6 | 9.7 | 5.6 | 1.1 |
I like the idea that my body will be useful after my death. | 5.2 | 7.3 | 85.8 | 1.7 |
I believe you have the duty to be an organ donor if you are willing to receive an organ. | 15.3 | 14.1 | 68.6 | 2 |
My choice about organ donation reflects what I believe my relatives prefer. | 37.4 | 20.7 | 35.6 | 6.3 |
I am afraid of not really being dead when the doctors remove the organs. | 79.3 | 5.7 | 12.7 | 2.3 |
I find it important that my body goes untouched into the grave. | 82.6 | 7.9 | 7.9 | 1.5 |
In our findings, the majority of the respondents disagree with the statement, ‘I find it important for my body to go untouched into the ground’. However of those (n = 84) who do not wish to donate their own organs, a slight majority (51.3 %) agrees with the statement. This indicates that ‘bodily integrity’ might be important for respondents who do not wish to donate their organs. A majority (68.6 %) of the respondents agree with it being a duty to be an organ donor if you are willing to receive an organ yourself.
Attitudes towards various organ donation policies
In the final section of our questionnaire, we asked the respondents about possible political measures in order to gain an understanding of the political acceptability of certain policies and policy options for regulating organ donation. Since some of the expressions used in the policy debate are not necessarily common public knowledge, we explained the purpose of each policy in the question. The first two questions in Table
4 explore the legitimacy of two different hypothetical consent systems: presumed consent with opt-out and mandatory decision-making. In the survey, the majority (58.6 %) disagree with the statement, ‘Everyone should automatically be considered a potential donor, and those who wish to avoid becoming an organ donor should therefore actively opt-out’, which is how we conceptualized a presumed system with an opt-out option. Even for those stating willingness to donate their own organs or tissue, and for those who stated they were positive or very positive towards organ donation and transplantation, a significant majority (
p < 0.05) of the respondents disagree or strongly disagree with the statement. The younger-aged group tends to disagree the most with the statement (
γ = 0.167;
p < 0.05). We further wondered if those agreeing with the statement, ‘I believe you have the duty to be an organ donor if you are willing to receive an organ’ were also in favour of an opt-out system with presumed consent. However, even among those respondents who agree or strongly agree with having to be an organ donor in order to receive, the majority (52 %;
n = 425) still disagree or strongly disagree with policies of presumed consent. When asked about mandatory active decision-making, a majority of the respondents agree with the statement that it should be mandatory to register your decision. The younger respondents tend to agree more with the statement (
γ = −0.190;
p < 0.05).
Table 4
Political legitimacy: attitudes towards policies regulating organ donation
Everyone should automatically be considered a potential donor, and those who wish to avoid becoming an organ donor should therefore actively opt out. | 58.6 | 8.5 | 30.4 | 2.5 |
It should be mandatory by law for everyone over the age of 18 to decide whether they want to be an organ donor, and to register their decision in the organ donor registry. | 24.6 | 9.2 | 63.9 | 2.3 |
It should be possible to motivate donors or relatives of potential donors with money, to make them donate organs. | 87.9 | 5.4 | 5.8 | 0.9 |
It would be fair if donors or relatives received compensation for any potential expenses in relation to the donation. | 32.9 | 11 | 52.7 | 3.4 |
The health services must mediate the contact between the relatives of a deceased donor and the recipient of the organ, if both parties request it. | 16.9 | 18.5 | 60.3 | 4.3 |
There is too much being done to promote organ donation already. | 87.4 | 7.5 | 2.3 | 2.8 |
Another policy option considered to promote organ donation is the use of monetary incentives. To explore the acceptability of initiatives in organ donation, we included two questions focusing on money as motivation versus money as compensation. Very few (5.8 %) found it acceptable to use money as a motivation for donating organs, while a slight majority (52.7 %) agreed with the statement, ‘It would be fair if donors or relatives received compensation for any potential expenses in relation to the donation’. In both of these questions on financial initiatives, women tended to disagree more with the statements than men (p < 0.05).
Another policy issue, which has received substantial attention, relates to rules regulating contact between donor relatives and recipient. In contrast to current policies upholding strict anonymity, a majority of our respondents (60.3 %) found it acceptable to make it compulsory for the hospital to mediate this contact, if both parties want it.
Finally, we asked if there is already too much being done to promote organ donation, partly in an attempt to accommodate individuals who did not feel their attitude had been clearly expressed through previous questions and partly to triangulate and capture preferences for fewer rather than additional initiatives. A minority of 2.3 % of our respondents agreed with the statement.