Ash B Alpert, Gray Babbs, Rebecca Sanaeikia, Jacqueline Ellison, Landon Hughes, Jonathan Herington, Robin Dembroff
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Doing Justice: Ethical Considerations Identifying and Researching Transgender and Gender Diverse People in Insurance Claims Data.
Data on the health of transgender and gender diverse (TGD) people are scarce. Researchers are increasingly turning to insurance claims data to investigate disease burden among TGD people. Since claims do not include gender self-identification or modality (i.e., TGD or not), researchers have developed algorithms to attempt to identify TGD individuals using diagnosis, procedure, and prescription codes, sometimes also inferring sex assigned at birth and gender. Claims-based algorithms introduce epistemological and ethical complexities that have yet to be addressed in data informatics, epidemiology, or health services research. We discuss the implications of claims-based algorithms to identify and categorize TGD populations, including perpetuating cisnormative biases and dismissing TGD individuals' self-identification. Using the framework of epistemic injustice, we outline ethical considerations when undertaking claims-based TGD health research and provide suggestions to minimize harms and maximize benefits to TGD individuals and communities.
期刊介绍:
Journal of Medical Systems provides a forum for the presentation and discussion of the increasingly extensive applications of new systems techniques and methods in hospital clinic and physician''s office administration; pathology radiology and pharmaceutical delivery systems; medical records storage and retrieval; and ancillary patient-support systems. The journal publishes informative articles essays and studies across the entire scale of medical systems from large hospital programs to novel small-scale medical services. Education is an integral part of this amalgamation of sciences and selected articles are published in this area. Since existing medical systems are constantly being modified to fit particular circumstances and to solve specific problems the journal includes a special section devoted to status reports on current installations.