In the context of healthcare, moral distress has traditionally described the emotional and psychological distress healthcare providers experience when they are prevented from acting in the way they feel is most ethical or just. Their moral agency is typically constrained by institutional policies, pressures, or a lack of resources. NPR, for instance, recently reported on Public Health Service officers’ experiences of moral distress as they are being asked to carry out orders they morally object to. However, the encroachment of malicious federal intervention into all areas of public health necessitates that we consider expanding who we consider at risk for experiencing moral distress.
Specifically, I suggest expanding notions of moral distress in healthcare to explain the type of distress experienced by researchers who had their funding terminated and/or are conducting research in an area or with a population that has been de-prioritized by the NIH (e.g., racial health disparities, gender-affirming care, reproductive justice). For researchers with abruptly terminated grants, the cancellation of their funding meant termination of a participant intervention and/or termination of research conducted in collaboration with community members. This situation left them unsure of how to act most ethically when they could no longer continue a research partnership. NIH acknowledged the ethical challenges posed by funding terminations, but they offered minimal guidance on how researchers should proceed. Without a clear pathway for fulfilling their ethical duties to participants, researchers are likely to experience significant moral distress.
For many researchers, research is a form of care, particularly when they are working in partnership with members of marginalized communities. In the case of investigators conducting community-based participatory research, they have often spent years or decades building trusting relationships with community members who have justly mistrusted academic medical institutions. Part of building this trusting relationship typically involves the promise that the researcher is not coming in to engage community members for one project, or only until it becomes inconvenient to do so; part of building trust is the promise of sustained engagement to make meaningful changes.
Institutional pressures to bring in external funding and/or requirements to cover their salary in a soft-money position have left many researchers in an incredibly distressing position of abandoning the research, patients, and communities to which they have heretofore dedicated their careers. Here, I write from personal experience as someone who has spent years developing relationships with transgender and gender-diverse communities, as well as providers of gender-affirming care. A large part of this work has also been building trust with other researchers who are transgender to make sure that I am doing this research in partnership with those with lived experience. In both cases, it has been important for community and research collaborators to understand that I was committed to this work for the long haul; it was not a situation of academic tourism where I could come to learn about their experiences until I moved on to the next project.
I am currently a co-investigator on a community-based participatory research project where we are co-developing informed consent, participant recruitment, and participant retention materials with a community advisory board of transgender and gender-diverse patients. This project is currently funded by a (very) small pilot award with the intention that the research team would pursue external funding to conduct a cohort study utilizing the co-developed consent and recruitment materials. Community members have dedicated many hours of their time and expertise working with researchers, often sharing difficult personal experiences with the healthcare system. We are currently nearing the end of this study, and the community advisory board is excited to continue working together to conduct research that feels meaningful to them and their broader communities. It is morally distressing to know that we have not secured funding for this work, and it is unlikely we will do so in the future due to the federal abandonment of equity research and institutional pressures to pursue other work.
For me, the most ethical course of action is clear: We continue to conduct the study we had planned or find another means of continuing meaningful research engagement. However, institutional pressures to secure extramural funding have required the research team to focus on other projects and/or pursue more fundable areas of research. It is also unlikely that we would be able to find an external funder for the research with NIH banning research using gender identity markers, and many foundations not wanting to garner the public attention that might come with funding a study related to gender-affirming care. I cannot find a better framework to describe the lack of agency I feel in this situation—it is moral distress.
I know that I am not alone in these feelings. Confined agency and the inability to ethically serve research partners and participants are incredibly morally damaging for investigators with terminated or de-prioritized research agendas. Moral distress provides an apt framework in which to place these complex emotions and from which to advocate for broader institutional support.
Laura Stamm, PhD is an assistant professor of Medicine and Health Humanities and Bioethics at the University of Rochester School of Medicine and Dentistry