Racial Disparities in Preferences and Perceptions Regarding Organ Donation

Abstract

OBJECTIVES:To identify reasons for lower organ donation rates by African Americans, we examined knowledge and attitudes about brain death, donation, and transplantation and trust in the health care system.METHODS: Data were collected from 1,283 subjects in Ohio using a random digit dial telephone survey. Items were developed based on focus group results. Willingness-to-donate indicators included a signed donor card and willingness to donate one's own and a loved one's organs. RESULTS:Compared with whites, African-Americans had lower rates of signing a donor card (39.1% vs 64.9%, Po.001), and willingness to donate their own organs (72.6% vs 88.3%, Po.001) or a loved one's organs (53.0% vs 66.2%, Po.001). African Americans had lower scores on the Trust in the Health Care System scale (mean scores AE SD, 9.43 AE 3.05 vs 9.93 AE 2.88, Po.01) and were more likely to agree that ''if doctors know I am an organ donor, they won't try to save my life'' (38.6% vs 25.9%, Po.001), the rich or famous are more likely to get a transplant (81.9% vs 75.7%, Po.05), and less likely to agree that doctors can be trusted to pronounce death (68.2% vs 82.9, Po.001). African Americans were also more likely to agree that families should receive money for donating organs (45.6% vs 28.0%, Po.001) and funeral expenses (63.1% vs 46.6%, Po.001).CONCLUSIONS: African Americans reported greater mistrust in the equity of the donation system and were more favorable about providing tangible benefits to donor families than white respondents.

Attitudes and beliefs about deceased organ donation in the Arabic-speaking community in Australia: a focus group study

“…It appears these suspicions and fears were transferred from their countries of origin, because they observed the lack of mechanisms to protect the needs and interests of vulnerable members of the community in the country from which they originated. Similar anxieties have been expressed in other ethnic minority populations including Chinese-Canadians; 31 Hispanics, African-Americans and Asian-Americans in the USA; [32][33][34][35] and black Caribbean and black Africans in the UK. 5 While these beliefs may be easily dismissed as misconceptions in the Western context, our study provides new insights as members of the Arabic-speaking community explained their origin of beliefs to be based on publicised healthcare practices reportedly occurring in the Middle East, for example, black market trading of organs, bribery for organs and removal of organs before being declared deceased.…”

Disparities in Kidney Transplant Outcomes: A Review

“…Health disparities can be defined as “potentially avoidable differences in health (or in health risks that policy can influence) between groups of people who are more or less advantaged socially; these differences systematically place socially disadvantaged groups at further disadvantage on health.”6 The elimination of health disparities is a national healthcare priority 7, 8. Disparities in transplant outcomes can threaten public trust in transplantation, and can thereby reduce the public’s willingness to donate organs, which leads to a reduced number of available organs for transplantation 9. The organ shortage exacerbates disparities in access to transplantation and outcomes 10.…”

Testing the utility of a modified organ donation model among African American adults

“…These two items were significantly correlated with each other, r (554)=.65, p <.001. Acknowledging apprehensions with formal communication of donation expression (Siminoff et al, 2006), these measures were specifically selected to allow participants to express philosophical support of donation without being confined to a specific mode of documentation (e.g. license, donor card, donor registry).…”

“…As of June 2011, there were more than 110,000 persons on the waiting list, with approximately 78% of patients specifically awaiting a kidney transplant (OPTN, 2010a). African Americans, in particular, have a disproportionately higher need than other ethnic/racial groups, due to predisposing health conditions such as diabetes and hypertension, which are important contributors to renal failure (Siminoff, Burant, & Ibrahim, 2006). They are over-represented on the transplant waiting list, yet under-represented amongst transplant recipients.…”