Children's Participation in Genetic Prevalence Research: Influences on Enrollment and Reports of Parent Satisfaction¹

Abstract

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.