Objective: This investigation aimed to determine in a research setting why people in the general population consent to participate in genetic epidemiological studies.
Methods: The present study was conducted as a supplement to the baseline survey of an ongoing population-based cohort study in the Takashima and Makino areas in Shiga Prefecture, Japan. Division of the cohort study was into two main parts: a basic survey and a genetic analysis. Eligible participants included 2,195 attendees of a national health checkup in the abovementioned areas in 2003. All were asked at the checkup site whether or not they wished to participate in the cohort study. Subsequent to the informed consent process for the cohort study, they were given a multiple-choice questionnaire on reasons for their decision of whether or not to participate in the basic survey and/or genetic analysis parts. A total of 2,171 attendees responded to the questionnaire.
Results: No major differences in reasons for participation and non-participation were observed between the basic survey and genetic analysis. The most frequently cited reason for participation was expectation of some individual benefits from participation, followed by finding social value in the cohort study. Underlying trust in physicians and medical institutions in general was also an important factor. On the other hand, the main reasons for non-participation were lack of time and the time-consuming nature of the cohort study. Concerns regarding potential for invasion of privacy and breach of confidentiality were not prominent reasons for non-participation.
Conclusion: The study uncovered reasons why people in the general population might consent or dissent regarding participation in genetic epidemiological studies.