North American Genetic Counselors' Perceptions of Identifiability From Demographic Questions on Surveys

Demographic data are routinely collected in surveys to assess participant diversity, analyze subgroup trends, and promote ethical, representative research. However, in small professional fields like genetic counseling, the combination of multiple demographic variables can raise concerns about identifiability. This study aimed to examine whether the design of demographic questions affects the willingness of genetic counselors (GCs) in the United States and Canada to participate in surveys and to respond accurately, particularly those who identify as part of an underrepresented minority (URM) group. A total of 153 GCs completed a 13-item online survey between August and September 2023. The survey included questions assessing whether participants identified as part of an URM within the profession, their level of participation in research and professional surveys, and concerns with demographic questions and the potential to be identified. Quantitative data were analyzed using descriptive statistics in Microsoft Excel, and qualitative free-text responses were examined using inductive thematic analysis to identify common concerns and recommendations. Respondents who identified as part of an URM were more likely to feel that they could be identified based on their responses to demographic responses compared to their non-URM peers. Although all participants reported active participation in research and professional surveys, several indicated they skipped certain demographic questions or modified their responses to increase anonymity. In open-ended responses, participants emphasized the importance of limiting unnecessary demographic questions and using flexible formats to minimize identifiability. Our study highlights the need for greater reflection on the design of demographic questions as they can affect how willing GCs are to take part in surveys, especially those from URM backgrounds, and overall data quality and representation. We encourage researchers to be transparent about why demographic information is collected, offer flexible and inclusive response options, and assess ways to protect anonymity as it may help build trust and encourage fuller participation in research.