By Pooja Patel
“A renewed trust in inherent racial differences provides a convenient but false explanation for persistent inequities despite the end of de jure discrimination.” - Dorothy Roberts
African Americans comprise 34% of the kidney transplant waiting list yet they are recipients of only 25% of cadaveric renal transplants and experience a wait time double that of their white counterparts (1;2). The most popular explanation for this problem is a race-based human leukocyte antigen (HLA) differential. HLA match is among the criteria used by the United Network for Organ Sharing to assign priority to kidney waiting list members (2). Race-based HLA studies suggest that African American patients have distinct HLA patterns and are therefore best matched with African American donors (1). Clinicians thereby mistakenly conclude that the issue of African American access to cadaveric kidneys is intimately tied up with their reluctance to become organ donors.
Using race-based HLA studies to explain the issue of African American access to cadaveric kidneys is problematic. Race, a social construct, cannot be used to explain biological phenomenon like immunological difference (1). The use of race in medicine stems from the common understanding that race accurately categorizes people who share distinct physical features. The idea is that since physical features are genetically inherited, racial categories represent genetically distinct groups of people, thereby giving race a natural place in medicine. In reality, however, racial boundaries are drawn along historical and sociopolitical lines. In fact, studies have shown that the genetic difference between members of the same racial groups is comparable to the genetic difference between members of different racial groups (3). This alone disqualifies linkage between race and genetics.
Race-based HLA studies operate under the same problematic assumptions of race-based medicine in general. The fact that the researchers determine the race of the participants based on phenotype introduces social and cultural biases into the studies. There is no scientific mechanism for determining whether an individual is black, white, or a member of any other racial group. Therefore, clinicians rely only on socially prescribed ideas of what it means to be a member of a particular race phenotypically (1). For example, conventionally, individuals who are identified as black typically have darker skin than individuals who are identified as white. A clinician conducting a race-based HLA study must rely on this loose distinction alone when categorizing individuals in a study. A lack of stringent criteria for differentiating between racial groups invites great potential for error. Further, the use of researchers’ beliefs to assign patient categories is a far cry from the principles of evidence-based medicine in which the scientific community takes immense pride.
The results of these flawed studies incorrectly demonstrate that the HLA patterns found on the kidneys of white and black patients are significantly different (4). This implies that a kidney coming from a white donor is unlikely to be a match for a black patient in need of a renal transplant. Reliance on these studies provides a false but convenient explanation for the high wait times experienced by African American patients on transplant wait lists: because most donors in the registry are white, black ESRD patients are at a disadvantage in terms of organ access because there are not enough donors that are a good immunological match for them (1). The solution that follows from this logic, then, is to put time and energy into convincing African Americans, who typically have a low organ donation rate, to become organ donors (5).
However, the fact that African Americans are less likely to donate their organs has little to do with the kidney access problem in the community, demonstrated by long wait times. This solution will not adequately address the kidney access problem, which likely has roots in social issues. It potentially exacerbates mistrust in the healthcare system based on a history of misinformation, which makes African Americans reluctant to donate in the first place. It is an attempt to solve a problem deeply rooted in social issues without engaging social problems and relies instead on flawed data to effectively mislead African Americans into serving the needs of organ procurement agencies in the name of directly improving problems in their own communities. This solution is problematic not because more African American organ donors would be a bad thing, but because it is being touted as a solution for a problem that it may not fix.
Using race-based HLA studies as evidence for the assertion that increased African American organ donation rates will shorten wait times for African Americans will slow the process of achieving transplant equity. The appeal to race-based HLA differences also places the burden on African American communities, instead of a potentially unjust healthcare system, for solving the problem of equity in transplant access. Because race-based HLA studies are flawed, they cannot be used to explain the delays that African Americans experience in receiving cadaveric kidneys once on the wait list. Thus, it is not certain that increased African American donors will decrease wait list times for African Americans, and it will take time before African American donor levels increase to appreciable levels that demonstrate whether they help with wait times or not.
Organ procurement agencies use what is essentially propaganda to encourage minority organ donation, asserting that “all individuals waiting for an organ transplant will have a better chance of receiving one if there are large numbers of donors from their racial/ethnic background (6).” It is unfair and ineffective to attempt to change the attitudes of a community that has strong reservations about donating due to a historical mistrust in the healthcare system by ignoring this mistrust and using convenient but misinformed explanations instead. Today, about thirty-eight percent of African Americans refuse to donate their organs (7). The most alarming reason for this lack of enthusiasm that regularly appears in the literature is a mistrust of the medical community.
The results of HLA studies are being used to make it seem as though increasing African American organ donation rates is the key to solving the kidney access problem. However, like the reluctance of African Americans to become organ donors, the kidney access problem likely has deep social roots and is more complex than a simple case of supply and demand. Although their intentions may be noble, organ procurement agencies are exploiting African American communities by using the results of race-based HLA studies in this way. Efforts should be made, instead, to use well designed studies that investigate and address the social issues at the heart of both the kidney access problem and reluctance to donate in the African American community.
Pooja is a recent graduate of Northwestern University, where she received a B.A. in English Literature. Her research interests include the causes of health disparities among ethnic and racial groups and health issues pertaining to medically underserved populations.
1. Gordon, EJ. (2002). What “race” cannot tell us about access to kidney transplantation. Cambridge Quarterly of Healthcare Ethics, 11.02, 134-41.
2. Organ Procurement and Transplantation Network. (2014). OPTN Policies. Retrieved from http://optn.transplant.hrsa.gov/ContentDocuments/OPTN_Policies.pdf#nameddest=Policy_08.
3. Krieger, N., Basset, M. (1986). The health of black folk: disease, class, ideology, in science. Monthly Review, 38.3, 74-85.
4. Mori, M., Beatty, PG., Graves, M., Boucher, KM., Milford, EL. (1997). Hla gene and haplotype frequencies in the North American population: the national marrow donor program donor registry. Transplantation, 64.7, 1017-027.
5. Kasiske, BL., Neylan, JF., Riggio, RR., Danovitch, GM., Kahana, L., et al. (1991). The effect of race on access and outcome in transplantation. New England Journal of Medicine, 324.5, 302-07.
6. U.S Department of Health and Human Services. (2014). Why Minority Donors are Needed. Retrieved from http://www.organdonor.gov/whydonate/minorities.html
7. Minniefield, WJ., Yang, J., Muti, P. (2001). Differences in attitudes toward organ donation among African Americans and whites in the United Sates. Journal of the National Medical Association. 93.10. 372-79.