Ethical considerations for conducting research with transgender and gender-diverse patient registries: Balancing our need for evidence with patient vulnerability

Most, if not all, medical centers have patient registries for quality improvement/quality assurance projects and patient outcome data, which can also be used to conduct population health studies through secondary research. Such registries offer significant public health benefits, such as facilitating better care, guiding resource allocation, and improving patient outcomes. Because patient registries promise possibilities for collecting patient outcome and longitudinal cohort data, researchers in transgender and gender-diverse (TGD) health have advocated for the creation of patient registries to increase the evidence base for the efficacy of gender-affirming care and population health outcomes. However, there is an absence in the literature on the ethical dimensions of creating and using these registries for research. Existing TGD patient registries were likely developed during the Biden administration, a period of expanding legally protections and social acceptance before the current wave of widespread political attacks on TGD healthcare. Using the same patient registries for research now presents different ethical challenges than when they were initially developed. This discussion provides recommendations for conducting ethical research, ultimately advocating for the creation of TGD patient registries in which participants are fully aware of how their data will be used and stored with robust mechanisms in place to ensure confidentiality and security.