In this national study of US-based adults, a majority of persons who had not previously designated their organ donation intentions on a driver’s license or organ donor card expressed interest in donating their organs after death. Most non-designators reported they more readily preferred to disclose their donation intentions through personal discussions, with greatest preference for discussions with family members and physicians. African Americans were statistically significantly more likely than Whites to prefer disclosure via personal discussions with religious representatives, and both African Americans and Hispanics were less likely than Whites to prefer public registration via mail, phone or computer, at workplace, or at a place of religious worship. Attitudes of medical mistrust were associated with potential donors’ lower preference for various methods of disclosure, especially among racial/ethnic minorities.
To our knowledge, this is the first US-based study with a national sample to assess racial/ethnic variation in preferences for disclosure of organ donation intentions among non-designators and to explore the influence of medical mistrust on preferences. In prior regional studies of disclosure preferences among racial/ethnic minorities, potential donors also demonstrated favorable attitudes toward personal discussion as a means for disclosing organ donation intentions. However these studies did not focus exclusively on non-designators and may have been influenced by strong opinions expressed by potential donors who had already disclosed their intentions through conventional methods [10
]. Our findings extend those of prior work by providing public organ donation programs seeking to increase disclosure rates guidance regarding disclosure methods deemed most acceptable to non-designators as well as factors that may be important to address when working to improve disclosure rates among racial/ethnic minorities.
To date, a majority of efforts to enhance disclosure of donation intentions have focused on improving public forms of disclosure, including disclosure on drivers’ licenses and donor cards [14
]. Recent programs have devoted significant resources to making public disclosure more convenient (e.g. through registration on the internet) [15
]. Our findings suggest that programs emphasizing personal discussion as a means to facilitate disclosure may be better received by non-designators (especially racial/ethnic minorities with medical mistrust) than programs encouraging disclosure via public registration. Our findings of multiple strong associations between potential donors’ medical mistrust and their willingness to disclose preferences in a variety of hypothetical settings emphasize the importance of programs’ consideration of ways to directly address potential donors’ medical mistrust during program implementation.
Encouragement of personal discussion of organ donation intentions could have several benefits. Potential donor-physician discussions about the need for organ donation may improve potential donors’ knowledge about donation procedures and the transplant recipient selection process. Lack of transparency regarding the donation and transplant process has been previously identified as a factor associated with less willingness to donate among the general public (with an even greater impact among racial/ethnic minorities) and may also influence their willingness to disclose donation preferences [16
]. Explicit discussions with physicians and other health care providers about how decisions to proceed with donation are approached by health care providers, and about the donation and allocation process could help allay potential donors’ mistrust of the donation process, including their concerns about receiving inadequate health care if their donation intentions are known. Regional variation in methods for determining cerebral death in the US likely enhances potential donors’ confusion and subsequent mistrust about this aspect of donation [19
]. Thus, health care providers’ efforts to explain cerebral death and to clarify differences in regional procedures could also help address donors’ mistrust. Our finding suggests efforts to directly address medical mistrust within the context of potential donor-physician discussions could be especially important for racial/ethnic minorities, for whom willingness to disclose was more consistently associated with disclosure preferences. Potential donor-family discussions about donation intentions may help potential donors solidify their desires to declare donation. As a result of discussions, family members may also be more receptive to learning about donation when faced with donation decisions and more likely to provide consent for donation. Previous research has demonstrated targeted educational interventions to improve knowledge about the donation process among families prior to organ donation requests may result in increased rates of family consent and deceased donation [1
]. Discussions between potential donors and religious representatives may provide a venue through which well-documented concerns, particularly among racial/ethnic minorities, about donation and its potential impact on spiritual well-being after death associated with donation can be addressed and demystified [5
]. Because OPOs play such prominent role in hosting electronic donor registries, their provision of education to potential donors could significantly help to increase the perceived transparency of the donation and allocation process and potentially influence potential donors’ mistrust. The value and feasibility of targeted outreach efforts by OPO professionals to identify potential donors and discuss donation and allocation on an in-person basis warrants greater exploration.
Limitations of our study deserve mention. First, we performed a 20-minute interview in which we attempted to ascertain some sensitive personal information (such as socioeconomic status) from participants in addition to their attitudes about disclosing their organ donation intentions. It is possible those willing to respond to a lengthy questionnaire with this type of content are systematically different from persons not willing to participate in the study. In addition, participant attitudes assessed at one point in time may not predict future behaviors. Second, our limited sample of non-designators may have more favorable attitudes toward organ donation than non-participating non-designators. Our study population was diverse in age, gender, income and education, potentially limiting the generalizability of our findings. We also oversampled African Americans and Hispanics and divided our population into smaller subgroups, which could have influenced study results. Further, we did not oversample from other racial/ethnic minority groups known to have disparate rates of organ donation, such as Asian immigrants. Nonetheless, we did draw oversampled minorities from all regions of the U.S. Third, although we assessed non-designators’ preferences regarding a variety of personal and public avenues for disclosure, we grouped some forms of public disclosure (e.g. presenting bank, post office, or store registration as one category), limiting our ability to determine whether specific subtypes of disclosure might be most preferable within groups. Further, we did not assess non-designators’ specific reasons for preferring certain specific disclosure methods or optimal mechanisms for implementing certain types of disclosure. For example, there might be multiple venues and mechanisms by which computer-based registries could be operationalized (e.g. online registries accessed at home versus computer-based registration at a state department of motor vehicles location. Findings among some subgroups of participants of a positive association between medical mistrust and participants’ greater willingness to disclose preferences (for instance, greater willingness to discuss donation intentions with religious representatives among Whites and Hispanics with medical mistrust) warrant further investigation. Some subgroups were small, which could have contributed to variability in estimation of attitudes.
In conclusion, a majority of US non-designators reported they more readily preferred to disclose their donation intentions through personal discussions, with greatest preference for discussions with family members and physicians. Compared to their White counterparts, racial/ethnic minorities were more likely to prefer personal disclosure with a religious representative and less likely to prefer public registration. Attitudes of medical mistrust were associated with non-designators’ lower preference for various methods of disclosure, especially among racial/ethnic minorities. Programs seeking to improve non-designators’ disclosure rates may consider encouraging personal forms of disclosure and emphasize the importance of addressing medical mistrust during disclosure opportunities. Further research is needed to elucidate the reasons for non-designators’ preferences and to further elucidate why the influence of medical mistrust on disclosure preferences may differ among racial/ethnic groups.