Journal article
Non-inclusive language in human subjects questionnaires: addressing racial, ethnic, heteronormative, and gender bias
BMC public health, Vol.25(1), 3708
10/31/2025
DOI: 10.1186/s12889-025-25038-4
PMCID: PMC12577174
PMID: 41174740
Abstract
Background
Questionnaires for research that involve diverse populations require inclusive language. There are few guidelines to assist researchers in minimizing social and cultural biases in data collection materials; such biases can result in harm and negatively impact data integrity.
Methods
We describe an approach to evaluating language in data collection forms reflecting racial, ethnic, heteronormative, and gender bias using the Environmental influences on Child Health Outcomes (ECHO)-wide Cohort Study (EWC) as a case study. The 245 data collection forms were used by 69 cohorts in the first seven years of the (ECHO)-wide Cohort Study (EWC). A diverse panel of reviewers (n = 5) rated all forms; each form also was rated by a second student. Items identified as reflecting bias were coded as to the specificity of the bias using nine categories (e.g., racial bias, heteronormative assumptions) following whole panel discussion. We provide recommendations for conducting inclusive research to the scientific community.
Results
Thirty-six percent (n = 88) of the data collection forms were identified as containing biased language. In total, 137 instances of bias were recorded, eight instances of racial or ethnic bias, 56 instances of bias related to sex, gender identity and sexual orientation and 73 instances of bias related to universal assumptions. Seventy-three percent (n = 64) of forms with biased language are validated measures. The review culminated in recommended revisions to forms used by ECHO and the general scientific community.
Conclusion
Adverse health outcomes disproportionately affect marginalized populations. Utilizing culturally and socially conscious research materials that are inclusive of various identities and experiences is necessary to help remediate these disparities. Our review finds compelling evidence of bias in many widely used data collection instruments. Recommendations for conducting more inclusive science are discussed.
Details
- Title: Subtitle
- Non-inclusive language in human subjects questionnaires: addressing racial, ethnic, heteronormative, and gender bias
- Creators
- Isabella Hernandez - University of Southern CaliforniaVelia Nuñez - California State University, NorthridgeLorena Reynaga - California State University, NorthridgeKennedy Stewart - California State University, NorthridgeIxel Hernandez-Castro - University of Southern CaliforniaLuis E Maldonado - University of Southern CaliforniaKarina Corona - University of Southern CaliforniaMax Aung - University of Southern CaliforniaEmily A Knapp - Johns Hopkins UniversityGarrett Fuselier - Johns Hopkins UniversityChristian Douglas - RTI InternationalCarmen Velez Vega - University of Puerto Rico SystemElissa Faro - University of IowaRachel Morello Frosch - University of California, BerkeleyJohnnye Lewis - University of New MexicoLisa A Croen - Kaiser PermanenteAnne Lang Dunlop - Emory UniversityJody Ganiban - George Washington UniversityKate Keenan - University of ChicagoTheresa Bastain - University of Southern CaliforniaEnvironmental influences on Child Health Outcomes
- Resource Type
- Journal article
- Publication Details
- BMC public health, Vol.25(1), 3708
- DOI
- 10.1186/s12889-025-25038-4
- PMID
- 41174740
- PMCID
- PMC12577174
- NLM abbreviation
- BMC Public Health
- ISSN
- 1471-2458
- eISSN
- 1471-2458
- Publisher
- BioMed Central
- Grant note
- UH3OD023344 / NIH Office of the Director UH3OD023251 / NIH Office of the Director UH3OD023389 / NIH Office of the Director UH3OD023287 / NIH Office of the Director U24OD023382 / NIH Office of the Director UH3OD023289 / NIH Office of the Director UH3OD023244 / NIH Office of the Director UH3OD023318 / NIH Office of the Director UH3OD023320 / NIH Office of the Director UH3OD023272 / NIH Office of the Director
- Language
- English
- Date published
- 10/31/2025
- Academic Unit
- General Internal Medicine; Internal Medicine
- Record Identifier
- 9985024257102771
Metrics
7 Record Views