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.
References
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.
