biased research

I am a woman of my word. At least I try to be. Ten years ago, when I said to Robert, my boyfriend at the time, “We should try to see if I can give you a kidney,” as we sat in a clinic exam room for his transplant evaluation appointment, I wasn’t just talking.

I said it because of what I heard in that room that day.

“Even after your insurance pays,” tap tap tap on the calculator, “you will still have to pay $215 every month for the medications.”

“Transplant isn’t for everybody.”

“For you,” glance at the chart, “it will be another year. We just don’t get that many,” glance at the chart again, “O type organs.”

“African Americans reject kidney transplants more often.”

It was these words that also prompted me to say, “I want to do research on racial disparities in access to kidney transplant.” Yet today my research is determining if bad gum disease can cause kidney function to decline.

I believe my current research is very important, but I didn’t abandon my original research focus lightly. I was pushed away.

I led a study in which I tested the health literacy, the ability to understand written health information, of dialysis patients and found that those with low health literacy were much less likely to be placed on the kidney transplant wait list.

“Oh so you really did interview those patients?” I was asked years later, right after being told, “I don’t like the way you approach research. It seems biased.”

The question was asked jokingly, but there is insinuation in humor.

So not so surprising when I proposed writing a five-year federal research grant to study the kidney transplant system, from analysis of the “who to transplant” conversations had behind closed doors to the reasons why access to kidney transplant varied so much depending upon where you lived, it was said about me:

“She wants to look for evidence that the kidney transplant system is racist.”

And to me:

“I will not support you if you continue in this line of research.”

 I recently learned that a young woman currently training in our nephrology fellowship is embarking upon a research program to investigate disparities in kidney transplant—with the support of the training program. While I am happy to hear that the work may move forward, I can’t help but wonder what is different between my research plan and hers—besides the race and experiences of the researcher.

Better be careful. I may be showing my biases again.