Patient Perspectives and Demographic Factors Influencing Non-Participation in a Large Genomics Study

To describe reasons why patients declined to participate in the Tapestry whole exome sequencing study and examine demographic trends in responses.

The Tapestry study enrolled patients 18 years of age and over, beginning July 1, 2020, through May 31, 2024. This study includes 12,705 recruited subjects who declined to participate before February 14, 2022, but provided reasons for declination (RPs). RPs were selected from 5 discrete reasons for declination and had the opportunity to add a free-text comment. Comments were classified into 7 theme-based categories by the reviewers for analysis. Demographics of the subjects, including age, race, ethnicity, having a primary care provider, and rural-urban commuting area, were compared based on consent status and their reasons for declination.

RPs had a mean age of 61 years, were 90.1% White, and were 57.4% female. The most common reasons for declination were concerns about storing genetic data in electronic health records, the complexity of the process, and discomfort with genetic research. Significant differences in reasons for declination were found by sex, age, race, ethnicity, primary care provider status, and rural-urban commuting area.

Our study highlights demographic and structural factors influencing genomic study non-participation. Distinct barriers were identified among active decliners, including privacy concerns, logistical issues, and mistrust. These findings emphasize the need for targeted education and provider engagement to support informed decision-making, reduce post-genomic sequencing regret, and promote equity in participation in large-scale personalized medicine initiatives.