Including gender data in electronic health records to improve the care provided to transgender and non-binary...

In 2011, the Institute of Medicine (IOM) released the first report to comprehensively compile the state of knowledge on LGBTQIA+ health at different stages of life. This report highlighted the need to include data on gender identity in electronic health records (EHRs), in addition to birth-assigned sex, to improve care for transgender or non-binary (TNB) patients and reduce health disparities. Quebec has yet to implement this change. Given the significant discrimination, marginalization and violence TNB patients face in healthcare, carefully examining the risks and potential benefits of this proposal through an ethical analysis is essential. This study aims to determine whether systematically including gender data in Quebec EHRs is ethically advisable.

A critical interpretive literature review was conducted on three online databases (PubMed, ScienceDirect, and Google Scholar) to examine the proposition of gender data inclusion in EHRs. The findings were critically assessed through a queer bioethics lens.

We retrieved 24 articles that met our inclusion criteria. Four themes were identified and analyzed: 1) hierarchical binaries embedded in EHRs; 2) potential of increased stigmatization due to heightened visibility; 3) significance of gender-affirming clinical environments; and 4) clinical significance of documenting both birth-assigned sex and gender data.

This analysis identifies key ethical considerations that must be addressed and ultimately finds that the benefits of including gender data in Quebec EHRs outweigh the risks. This change would represent a meaningful step toward a system that better affirms diverse identities, supports self-determination, and challenges normative frameworks in place.