SIMINOFF AND STURM • ORGAN DONATIONS AND IMPLICATIONS FOR POLICY

This paper reviews current and suggested policies designed to increase organ donation in the United States and indicates the problems inherent to these approaches for increasing organ donation by African Americans. Data from a population-based study assessing attitudes and beliefs about organ donation among white and African-American respondents are presented and discussed. We pose the question of whether it is reasonable to maintain the existing system or whether we should institute a system that uses policies based on the attitudes and beliefs of a minority group that is in greater need than the majority. In light of the discussion, we suggest that the current policies guiding the organ procurement system are not adequate to address existing concerns within the AfricanAmerican community and that a different set of assumptions may be needed to drive organ procurement policy. THE ISSUE OF ORGAN DONATION for therapeutic transplantation garners public attention and controversy. Recently, national debate has focused on the issue of geographic disparities in the allocation of organs. Only intermittent attention has been paid to disparities in the distribution of organs among ethnic groups, despite the fact that transplant waiting times for African Americans have continued to increase more rapidly than for whites (OIG 1998). A 1998 report from the Office of the Inspector General of the United States documented this disparity but failed to provide suggestions to help alleviate the longer waiting times for African Americans (OIG 1998). The focus of the report is on achieving greater equity in the distribution of organs that are already being procured. Nevertheless, it fails to address the problem of disparities in organ availability—there are simply not enough “matchKENNEDY INSTITUTE OF ETHICS JOURNAL • MARCH 2000 [ 60 ] able” organs being procured for donation to African Americans. This scarcity is especially problematic for kidney donations. The shortage of available organs is particularly acute within the African-American community although shortages exist for all people awaiting transplantation. Overall, fewer than half of all families of organeligible “brain-dead” patients consent to a request for donation (Siminoff et al. 1995). This, coupled with the yearly growth in the number of people placed on the waiting list, has resulted in increasing waiting times for all ethnic groups. TRANSPLANTATION WAIT TIMES FOR AFRICAN AMERICANS Thirty percent of U.S. patients with end stage renal disease (ESRD) (Davidson and Devney 1991) and 35.6 percent of people on the transplant waiting list are African-American (DHHS 1999). However, only 21.4 percent of kidney transplant recipients are African-American (DHHS 1999). African-American patients who receive kidney transplants must wait, on average, 1,185 days compared to 605 days for white Americans (DHHS 1999). This disparity is seen among patients waiting for heart transplants as well. African Americans wait an average of 225 days for heart transplants while white Americans wait an average of 209 days (DHHS 1999). A recent study found that there are barriers for African Americans, women, and the poor at each of the multiple steps taken to access kidney transplantation, although specific barriers were not identified (Alexander and Sehgal 1998). One important barrier may be a scarcity of African-American donors (Callender et al. 1995; Roberts 1998). The most recent data indicate that 11.5 percent of all kidney donors are African-American (DHHS 1999; Perez et al. 1988), a number that closely reflects the percentage of African Americans within the general population. However, as indicated above, African Americans are overrepresented on the kidney transplant waiting list by a ratio of three to one. Due to the use of HLA matching requirements and the large white donor pool, fewer of the kidneys available for transplant will match persons of African descent. To date, general public education policies have not specifically targeted African Americans. The only group to do so, the Minority Organ Tissue Transplant Education Program (MOTTEP), conducts it work in 15 cities nationally. Although this group’s efforts have shown an increase in positive attitudes toward transplantation and donation, a concomitant consistent increase in actual African-American donors has yet to materialize (Kappel et al. 1993; Callender 1989; Hall et al. 1991). SIMINOFF AND STURM • ORGAN DONATIONS AND IMPLICATIONS FOR POLICY [ 61 ] Each year, there are a finite number of organ donors. Current national and state-wide organ procurement policies have failed to increase the rate of African-American donors to a level on par with white Americans— African Americans agree to donate at about half the rate at which white Americans agree to donate (Siminoff 1997)—let alone to a level sufficient to meet the actual demand for organs. In fact, the supply of organs meets neither the demand for any type of transplantable organ nor that for organs within any ethnic group. Clearly, higher rates of donation across the U.S. population would be ideal. However, because the need for transplants is so much greater in the African-American community, we need to reconsider the policies that govern our organ procurement system in order to maximize donation levels in this group and, consequently, we must reconsider the moral system that guides these policies. ROLE OF PUBLIC POLICY TO INCREASE MINORITY DONATION This paper discusses the role that policy should play in helping to alleviate the organ shortage: Should organ policies be targeted to a minority community even if their attitudes and beliefs would lead to policies that the majority might not favor? What should be our ethical obligations to design policies to enhance organ donation from minority communities that are in greater need of organ transplantation than the majority? We present data from a telephone survey conducted in a population-based sample that provide evidence about the degree to which organ donation is supported by the African-American community, illustrate subtle differences in attitudes and beliefs about organ donation between African Americans and white Americans, and illuminate some of the subtleties of the context of these beliefs and attitudes (Appendix A provides a detailed description of the research methods and study sample). The findings suggest that the policies currently used to guide the organ procurement system are not adequate to address existing concerns within the AfricanAmerican community and that a different set of assumptions may be needed to drive organ procurement policy. WILLINGNESS TO DONATE AMONG AFRICAN AMERICANS Considering the urgent need for organs among African Americans, the question of willingness to donate within the African-American community is of vital importance. Without willing donors, it is unlikely that the pool of available organs will increase. It is unknown whether the 11.5 percent of African-American kidney donors reflect the number of eligible KENNEDY INSTITUTE OF ETHICS JOURNAL • MARCH 2000 [ 62 ] donors. Some small studies report that African Americans refuse organ donation two to three times more often than white Americans. In a study of consent to in-hospital requests for organ donation, Siminoff et al. (1995) found that 47.9 percent of white families consented to organ donation, compared to 33.3 percent of African American families.1 However, the sample of African-American families was small, only 24 families. Consistent with this higher refusal rate are attitudinal surveys that report African Americans consistently express less willingness to donate their own or a family member’s organs (Davidson and Devney 1991; Creecy and Wright 1990; Callender et al. 1991; Reitz and Callender 1993). For a number of years, organ procurement policy has focused on increasing awareness of organ transplantation and the need for organ donors, particularly in the African-American community. Callender has had success with the educational programming he spearheaded, targeting urban populations especially (Hall et al. 1991; Callender 1989). We believe that the 98 percent awareness of organ transplantation reported by our subjects in the present study reflects the success of these programs. Our study found that African Americans and white Americans held very similar beliefs about the importance and benefits of organ donation. Similar numbers of individuals in the two groups of respondents felt that transplantation is one of the most important things the health care system does; that having a chance to donate a loved one’s organs helps families to grieve; and that the decision to donate should be left up to the patient or the patient’s family if the patient cannot decide for him/herself (see Table 1). Differences between the two groups were found, however. African Americans were less likely than whites to be aware of the organ shortage (88.0% vs. 96.1%, p<0.01) and more likely to believe that money spent on transplants could be better used for other health care needs (30.9% vs. 21.4%, p<0.01). Moreover, increased awareness has not necessarily translated into increased willingness to donate. Fewer African Americans were willing to donate their own organs (52.9% of African Americans vs. 62.4% of whites, p<0.05). Similarly, 32.4 percent of African Americans said they were willing to donate a family member’s organs compared to 43.5 percent of white Americans (p<0.05) (many respondents would only be willing to donate with prior authorization from the patient). Differences between whites and African Americans in willingness to donate may be rooted in different attitudes toward the medical community, the importance or extent of intra-familial communication about organ donation, SIMINOFF AND STURM • ORGAN DONATIONS AND IMPLICATIONS FOR POLICY