Does default organ donation registration compromise autonomous choice? Public responses to a new donor registration system

Abstract

Objective: Defaults have been shown to substantially increase the number of organ donor registrations. However, it is unclear whether defaults violate personal autonomy of the people being registered. The implementation of a new Donor Act in the Netherlands, providing people with the opportunity for active registration before being defaulted, allowed for examining to what extent default registration affects personal autonomy and associated concepts.Methods: In an online survey among a representative sample (N = 1259), four groups were compared regarding autonomy, decision making competence, decision satisfaction, and being pressured to register as a donor: people (1) who had registered their status prior to the Donor Act, (2) who had not yet received an invitation for default registration, (3) who had received an invitation and then registered their choice, and (4) who had received an invitation but took no action and were defaulted into being registered as a donor.Results: We find that groups did not differ on measures of autonomy, decision making competence or decision satisfaction, except for people who had received an invitation but took no action and reported significantly lower levels of autonomy, decision making competence, and decision satisfaction as compared to the other three groups. Participants who received a letter of invitation reported to experience more pressure than participants who had already registered themselves prior to the introduction of the new Donor Act.Conclusion: We conclude that default organ registration does not compromise autonomy except for a minority of people who pass the opportunity to register themselves.