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. 2024 Oct 12;48(1):96.
doi: 10.1007/s10916-024-02111-w.

Doing Justice: Ethical Considerations Identifying and Researching Transgender and Gender Diverse People in Insurance Claims Data

Ash B Alpert #  1   2   3   4 , Gray Babbs #  5 , Rebecca Sanaeikia  6 , Jacqueline Ellison  6   7 , Landon Hughes  8   9 , Jonathan Herington  10 , Robin Dembroff  11
Affiliations

Doing Justice: Ethical Considerations Identifying and Researching Transgender and Gender Diverse People in Insurance Claims Data

Ash B Alpert et al. J Med Syst. .

Abstract

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.

Keywords: Administrative Data; Epistemic Injustice; Ethics; Insurance Claim Review; Transgender Persons.

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Conflict of interest statement

The authors have no competing interests directly or indirectly related to the work submitted for publication except as directly stated in the manuscript itself.

The authors declare no competing interests.

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