The Problems of Justice and Kidney Donation
Wherein I delve into one of those third rails in bioethics: Race and organ shortages.
If only kidneys were as plentiful as kidney beans. Also now I’m hungry. Photo by Volodymyr Hryshchenko on Unsplash
One of those third rails of bioethics I mentioned in my last post could be heating up: racial disparities in organ transplant decisions. Chapter 6 of Practical Bioethics: Ethics for Patients and Providers deals with dilemmas in scarce medical resources. One of the biggest scarce resources are kidneys. Law professor and blogger Ilya Somin sums up the controversy:
The United States has a severe shortage of kidneys available for transplant. As a result, many thousands of people die every year, and thousands more are condemned to years of painful and costly kidney dialysis until they are finally able to get off the waiting list for organs. Recently, organ transplant organizations have been attempting to alleviate perceived racial disparities in access to organ transplants through policies that in some ways increase the role of racial considerations in deciding who gets priority in the transplant queue, and in other ways reduce it.
You might not like what Somin has to say in the link to his post with the click-baity title of Race, Wokeness, and Kidney Transplant shortages. You may give the side eye to Libertarian leaning blog The Volokh Conspiracy, but everything in that paragraph above is true.
There is a shortage of kidneys. Many do die each year waiting for a kidney enduring exhausting and costly dialysis. It is also true that when it comes to one of the major factors for getting a kidney quickly, time-on-list, there is statistical data that Black kidney patients are less likely to get on a transplant list as soon as the general population. It is also true that organ transplant org, specifically the United Network for Organ Sharing (UNOS) and the Organ Procurement and Transplant Network (OPTN) have passed policy changes to address this disparity.
[Aside: What is the difference between UNOS and OPTN? The difference between UNOS and the OPTN is COMPLICATED. Or as UNOS describes it: “It’s a unique public-private partnership that links all professionals involved in the U.S. donation and transplantation system.” Try explaining that to students! If you can help me explain it, please comment]
So why do Black patients end up having less time on the organ transplant list and thus sometimes wait longer for a kidney or not get one at all? Something called eGFR which stands for estimated Glomerular filtration rate. We do love a good acronym in medical culture. Don’t we?
GFR is a major indicator of kidney function or disfunction as it were, but the test is expensive and can’t be done in a doctor’s office. So labs report estimated GFR based on a variety of factors to measure levels of Creatinine which in turn measures kidney function. With me so far? Okay here’s where we grab the third rail. I’ll let the NKF (National Kidney Foundation) explain:
Race was originally included in eGFR calculations because clinical trials demonstrated that people who self-identify as Black/African American can have, on average, higher levels of creatinine in their blood. It was thought the reason why was due to differences in muscle mass, diet, and the way the kidneys eliminate creatinine. Since a patient’s race is not always used when laboratory tests are ordered, laboratories used different eGFR calculations for African American and non-African American and included both numbers in their lab results.
Okay. So we have this estimated calculation that affects Black people specifically. Is it racist? Is it necessary? On one side you have the NKF and UNOS others saying NO.
. . . many researchers and medical societies have found this can inaccurately estimate a higher level of kidney function for Black individuals than for non-Black individuals having otherwise the same patient-specific variables. This has caused some Black patients to be identified with and treated for kidney failure at a much later stage of their disease, and delayed their access to transplantation.
On the other side you have critics like Stanley Goldfarb, physician an former associate dean of curriculum at Pennsylvania’s Perelman School of Medicine calling this policy change “medical reparations.”
[the eGFR] was necessary to produce an accurate value for kidney function in black patients. Without it, the measure would be highly inaccurate, dramatically underestimating kidney function . . . OPTN isn’t just using this new assessment going forward. It is retroactively applying the new formula—potentially tracing back decades—to previous assessments of kidney function in black patients. Many black patients previously regarded as ineligible for the transplantation waitlist will now be listed, and some will even be moved ahead of others already on the waiting list.
I have no idea if Dr. Goldfarb is right about how strong an effect the new policy will create. Notably, he thinks the effect will be very strong. Calling it “wokeness” in healthcare. Suppose it’s true that the effect will be significant, is that immoral?
In chapter 6 of Practical Bioethics I make the distinction between two concepts: equality and fairness. I point out that much bad thinking comes from equating the two. Something can be fair without being equal and something can be equal without being fair.
Often the principle of equality conflicts with fairness in political issues such as race. Addressing racial injustice may involve treating some kidney patients unequally in order to make up for past injustices. Goldfarb laments that this would be medical reparation with the implied premise that such reparations are wrong.
[Aside: This case is weird since Goldfarb argues for a race specific policy which as Somin points out in the first link, is an unusual position for a political and social conservative like Goldfarb. There are rare instances where ethnic descent does result in medical differences. (Chapter Seven of Practical Bioethics addresses the prevalence of Tay-Sachs disease in Ashkenazi Jews for example) but I agree with Ilya Somin that Goldfarb hasn’t made a compelling case that requiring eGFR is really one of those rare instances.]
So we have few ethical questions for students:
Is the new policy intentionally favoring the principle of justice (people should be treated fairly even if that means treating people unequally) over egalitarian principles such as need determined by race neutral criteria?
If UNOS etc. are favoring racial justice over distributive equality, is that unethical? One reason it might be: historically OPTN has favored racially neutral distributive principles like the MELD criteria for liver function. Should medicine stick to medical criteria that is ostensibly race neutral (principle of equality) or should it try to correct past and present disparities in the name of the principle of fairness?
And I can’t forget one last call back to chapter 6 of PB, could all of this be mitigated by an increase in organs by making it legal for organ recipients to pay donors which is Ilya Somin’s solution in the article linked above.
As Chapter 6 notes, when it comes to scarce resources like kidneys, you really have two choices, reduce demand by rationing as the OPTN does or increase supply by making organ sales legal or organ donation mandatory. Yikes! Talk about controversy!