Reactions to Research Participation: Risks and Benefits

Background: In a synthesis of studies on reactions to research Boothroyd (2000) found reports ranging from depression to feeling uncomfortable. Both direct and indirect benefits have been noted by participants reporting an opportunity to reflect and process previous events, as well as a sense of contribution for the benefit of others (Newman & Kaloupek, 2004).

Purpose: To examine the prevalence of adverse emotional reactions; persistence of distress over time; factors and questions associated with adverse reactions; and likelihood of future participation.

Methods: A mixed method four-year longitudinal study of 125 mother/daughter dyads in context of welfare reform. Protocols included health, mental health and substance abuse measures. Final questions addressed: participants understanding of the study, degree of discomfort and reactions, fears surrounding confidentiality, and interest in future study participation.

Findings: Mothers (11.1%) were more fearful of loss of confidentiality compared to 5.6% of daughters. Mothers were 3.5 times more likely than daughters to experience an adverse emotional response. Persistence in distress ranged from hours to a couple of weeks for daughters. Mothers reported distress lasting a few minutes to a couple of days. Of those reporting any adverse emotional reaction both daughters (89%) and mothers (94%) stated they would participate in future studies.

Discussion: This study offers empirical data of participant's experiences of adverse emotional reactions, yet continued willingness to participate in future studies. Findings suggest the importance of balancing risk with perceptions of benefit, the need to develop sensitive confidentiality policies, comprehensive consent forms, and responsive strategies for adverse reactions.