Children's participation in genetic prevalence research: Influences on enrollment and reports of parent satisfaction

The present studies were designed to evaluate methodological influences on the efficiency of genetic-screening studies, specifically when enrolling preschoolers in a prevalence study of the fragile X full mutation. The studies include replication of earlier findings with school-age children, which showed that (a) a higher enrollment rate occurred when the study was introduced to a parent by a physician (73.7%) versus by a research assistant (58.7%), and (b) parents initially undecided about participating were more likely to eventually enroll if they had completed enrollment forms at the time of recruitment. In-person recruitment led to higher enrollment rates (60%) than did recruitment by mail (36.8%). Feedback from parents indicated the importance of emphasizing the optional nature of participation in screening studies.