A few days ago, I received an Orwellian email about my National Institute of Health (NIH) biosketch from the director of an NIH-funded research center at my institution. We are submitting an application for renewal of our funding, and all mentions of health disparities, health inequities, low-income patients, and safety-net hospitals were highlighted on my biosketch with a request that I delete them.
I responded to my colleague’s e-mail, “Sure, I’ll do it (with some reluctance, horrible to have to do this).” I didn’t want to jeopardize my institution’s (and my) funding, so I edited out the undesirable language where I could. But I couldn’t change the titles of my publications dating back to 1995, such as “Health Disparities in the US and Canada: Results of a Cross-National Population-Based Survey.” I’m now feeling complicit, perhaps even compromised. Am I a coward for whitewashing my NIH biosketch?
I realized this wasn’t the first time I’ve changed the words I use professionally. In 2020, in the wake of George Floyd’s death, I started using the word “inequities” instead of “disparities.” This was both my institution’s preference and my own choice; I understood and agreed with the reasons for the change.
I’m writing this essay in a rented apartment in Florence, Italy. My husband and I had been overdue for sabbaticals, and we’d started planning a six-month family stay in Florence many months before we knew the results of the 2024 U.S. presidential election. Since moving here in late January, I’ve watched, from a distance, with horror, the dismantling of public health and science in the U.S. under the new administration. I’ve advised my mentees, who study health inequities, that perhaps they should pursue foundation funding and de-emphasize their focus on inequities if they apply for NIH funding. But somehow, altering my own NIH biosketch made the new reality really sink in. At breakfast, I told my 17-year-old daughter what I’d done. Her response was “That’s sad.” Is this how totalitarianism begins to erode our ethical expectations of our own conduct? If so, how best to resist?
As I traversed Florence en route to my Italian language school, I turned the question over and over in my head. In my Italian class, we’d learned the expression “la stessa zuppa,” which literally means “the same soup” but translates as “the same old thing.” My husband, a Jewish refugee in the 1980s from the former Soviet Union, had grown up in a totalitarian political climate, as had one of my Brazilian classmates during that country’s military dictatorship.
This morning, I listened to a podcast in which I’d interviewed an author who discussed how racial and ethnic differences in access to care result in inequities in prostate cancer outcomes in the U.S. Were I in the U.S., I’d proudly attend the Stand up for Science rally with my colleagues. Not the same old soup, but a new soup that tastes of resistance.
Karen E. Lasser
Florence, Italy