Little is known about how individuals with and without mood disorders perceive the inherent risks and helpfulness of participating in innovative psychiatric research, or about the factors that influence their willingness to participate. We conducted an online survey with 80 individuals (self-reported mood disorder [n = 25], self-reported good health [n = 55]) recruited via MTurk. We assessed respondents' perceptions of risk and helpfulness in study vignettes associated with two innovative research projects (intravenous ketamine therapy and wearable devices), as well as their willingness to participate in these projects. Respondents with and without mood disorders perceived risk similarly across projects. Respondents with no mood disorders viewed both projects as more helpful to society than to research volunteers, while respondents with mood disorders viewed the projects as equally helpful to volunteers and society. Individuals with mood disorders perceived ketamine research, and the two projects on average, as more helpful to research volunteers than did individuals without mood disorders. Our findings add to a limited empirical literature on the perspectives of volunteers in innovative psychiatric research.
Data from digital technologies are increasingly integrated in public health research. In April of 2020, we interviewed a subset of participants (N=25) who completed a survey approximately one month earlier (just prior to the declaration of the COVID-19 pandemic in the United States). Using the survey, we contacted and interviewed participants who had expressed their willingness or unwillingness to share digital data (e.g., from contact tracing apps) for use in public health. We followed a directed content analysis approach for the analysis of the interview data. Among participants who had reported being unwilling to share data, concerns about privacy, confidentiality, and the purpose of the research were cited. During the interviews, 76.9% of the participants who had previously indicated that they were unwilling to share their data, expressed willingness to share data in order to assist with COVID-19 prevention. Our results contribute to our understanding of people's perspectives on sharing personal data and of the way their perspectives can vary as a function of potential uses of their personal information (e.g., prevention of COVID-19).