Damage Control: Assessing and Responding to Harm In Transgender Health Research

Background and purpose: Transgender people have long been the subjects of medical and scientific curiosity and experimentation, a history marked by exploitation in research context. Yet, transgender people have also sought visibility and recognition through research, some joining the ranks of academic scientific communities. Over the past decade, new federal funding for health equity research invited cautious optimism about the potential for a newly constituted research paradigm centrally led by transgender people. However, many concerns have persisted in transgender communities, foreshadowing the risks of a rapidly accelerating research environment heavily structured by state interests. In the context of federal mandates foreclosing and reshaping possibilities for transgender health research, we sought to characterize the positions taken within transgender communities regarding health research undertaken in academic contexts.

Methods: The study was situated in a broader interdisciplinary participatory research program and archival initiative that seeks to protect and preserve transgender health knowledge systems and research justice practices. We mobilized situational analysis (SA) to analyze data from interviews and community conversations with people engaged in transgender, gender variant, and intersex (TGI) community organizations in California, which included a focus on university-based research partnerships. SA draws on grounded theory methodologies and uses cartographic analytic techniques, including situational and positional maps, which we used to identify and interpret an empirically grounded theory of TGI participants’ symbolic interactions with academic research institutions.

Results: We identify “damage control” as a primary analytic to explain various positions taken (and not taken) within this contested field of practice. Participants appreciated and shared concerns about the risks of medical, health, and social scientific research focused on TGI communities, including harms to research subjects and to community interests more broadly. These understandings shaped actions to avoid, prevent, and mitigate potential damage. Participants took varying positions in relation to the academic research enterprise, ranging from rejecting results to confrontation and from meaningful partnership to efforts toward research independence.

Conclusion and Implications: Transgender communities have developed strategies to mitigate harmful forms of health research and produce alternative epistemologies of health. A grounded theory of damage control offers an interpretative framework for enduring and prescient practices of community protection, with renewed urgency for community controlled research infrastructures.