Residents’ awareness and attitudes about an ongoing community-based genome cohort study in Nagahama,Japan

Abstract

This study’s objective was to examine residents’ attitudes toward and factors associated with an ongoing, real genome cohort study based on a community in Japan. After the genome cohort study’s launch in 2007, in November and December 2009, a self-administered questionnaire survey was conducted with 2500 randomly sampled residents aged 30–74 years, living in Nagahama, Japan. Responses were received from 1363 people (response rate = 54.5%), of whom 187 respondents had already participated in the study. Although the local government and researchers disseminated information through leaflets and citizen-information papers to every household, sent notices by personalized letter, and held symposia and other meetings, 65.7% of males and 47.2% of females first became aware of the study when they received our questionnaire. Among all respondents, 81.2% of those who knew that the genome cohort study had begun and 68.6% of those who did not know had a positive attitude toward the study. Their attitudes were significantly associated with high health consciousness and the desire for an extensive health check-up. Although for males there were no particular negative aspects of the genome study, for females, positive aspects were associated with participating in community activities and desiring an extensive health check-up. Although promoting a community-based genome cohort study requires huge effort, it is essential to popularize it. Actions are vital both for monitoring public awareness and attitudes at a community level and for keeping communication channels open.