Who is Willing to Participate in Genetic Research? Exploring Barriers and Predictors
Shannon M O'Connor1, S Mason Garrison2
1Department of Psychology, University of Toledo, 5040C University Hall, 2801 W. Bancroft St., Toledo, OH, 43606-3390, USA. shannon.oconnor@utoledo.edu.
Behavior Genetics
|November 29, 2025
Summary
Willingness to participate in genetic research varies by race, income, and trust. Increasing transparency and equitable compensation can boost engagement, especially for underrepresented groups.
Area of Science:
- Human Genetics
- Population Health
- Bioethics
Background:
- Racial and ethnic diversity in human genetics research samples is lacking.
- Factors influencing participation disparities remain under-explored.
Purpose of the Study:
- Investigate willingness to participate in genetic research based on race, ethnicity, demographics, and psychological factors.
- Identify barriers and facilitators to participation in genetic research.
Main Methods:
- Surveyed two diverse samples (N=2264) on willingness to provide biological samples for genetic research.
- Assessed demographic, psychological, and individual factors influencing participation.
- Explored reasons for reluctance, including compensation and feedback.
Main Results:
- Approximately one-third willing to provide saliva, one-quarter for blood samples.
- Non-white race/ethnicity and lower income associated with lower willingness.
- Mistrust reduced participation; health anxiety, altruism, and health conditions increased it.
Conclusions:
- Mistrust and socioeconomic factors hinder participation in genetic research.
- Transparency, community engagement, and equitable compensation are key to increasing diversity.
- Addressing these factors can improve representation in human genetics research.
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