Non-inclusive language in human subjects questionnaires: addressing racial, ethnic, heteronormative, and gender bias
Year: 2025
Type: article
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.
Source: BMC Public Health
Authors: Isabella Hernandez, Velia Nuñez, Lorena Reynaga, Kennedy Stewart, Ixel Hernandez-Castro, Luis E. Maldonado, Karina Corona, Max Aung, Emily A. Knapp, Garrett Fuselier, Christian Douglas, Carmen Velez Vega, Elissa Faro, Rachel Morello Frosch, Johnnye Lewis, Lisa A. Croen, Anne Lang Dunlop, Jody Ganiban, Kate Keenan, Theresa Bastain, Environmental influences on Child Health Outcomes, Peterson, Parsons, Kannan, Fennell, Sumner, Du, Teitelbaum, Wright, Alshawabkeh, Aschner, Trasande, Camargo, Dabelea, Deoni, Duarte, Dunlop, Elliott, Ferrara, Gern, Breton, Hertz-Picciotto, Hipwell, Karagas, Karr, Lester, Leve, MacKenzie, Weiss, McEvoy, Lyall, O’Connor, Oken, O’Shea, Kerver, Herbstman, Schantz, Stanford, Trasande, Wright
Institutions: University of Southern California, California State University, Northridge, Johns Hopkins University, RTI International, University of Puerto Rico System, University of Iowa, University of California, Berkeley, University of New Mexico, Kaiser Permanente Northern California, Emory University, George Washington University, University of Chicago
Language: English
Topic: Gender Studies in Language
Subfield: Gender Studies
Field: Social Sciences
Domain: Social Sciences
SDG: Reduced inequalities
Open Access status: gold
Estimated APC paid: $3,290
Awards: G1535368911, G2727686337, G2746673140, G3178183669, Lifecourse Approach to Developmental Repercussions of Environmental Agents on Metabolic and Respiratory health (LA DREAMERs), Developmental Impact of NICU Exposures (DINE), G6255386742, G6433101129, G6732704575, G6803379129, G7592674662, G8782537771, G9000030369, G9000032645, G9000065193, The Early Growth and Development Study Cohort of the ECHO Program, Atlanta ECHO Pediatric Cohort, The Illinois Kids Development Study ECHO Pregnancy and Pediatric Cohort, Resilience to prenatal stress: Implications for offspring health and neurodevelopment, ECHO DAC (Environmental Influences on Child Health Outcomes Data Analysis Center), Understanding Risk Gradients from Environment on Native American Child Health Trajectories: Toxicants, Immunomodulation, Metabolic syndromes, & Metals Exposure
OpenAlex ID: W4415729795