Table 4.
Overlapping motivations and concerns across surveys and interviews
| Participation Survey | Incompletion Survey | Interviews | |
|---|---|---|---|
| Motivations | |||
| Personal and family health (e.g., future cancer risk; information for family; impact on diet, exercise, and/or healthcare; encouraged by family to join) | X | X | |
| Altruism and desire to contribute to research (e.g., advance research) | X | X | |
| Curiosity and interest (e.g., using the most up-to-date technology) | X | X | |
| Trust and role of doctor or institution (e.g., encouraged by doctor to join) | X | X | |
| Encouraged by family to join | X | ||
| Convenience and affordability | X | X | |
| Improving representation of underrepresented groups | X | X | |
| Incentives | X | ||
| Concerns/ Reasons for declining | |||
| No concerns | X | X | |
| Information access and use | X | X | |
| Privacy protections | X | X | X |
| Coping with genetic information | X | X | |
| Participation may be burdensome | X | X | |
| Receiving high-risk results | X | ||
| Accuracy, reliability, and/or legitimacy of the study, test, and/or results | X | ||
| Downstream effects of the study results on healthcare | X | ||
| Not interested in participating in research | X | ||
| Focusing on current health condition | X | ||
| Did not want genetic results from the study | X | ||
| Other priorities/timing | X |