Behavioral Science Research Informs Bioethical Issues in the Conduct of Large-Scale Studies of Children's Disease Risk

Abstract

Background: Birth cohort studies of the natural history of pediatric common disease risk raise many bioethical issues, including reconsenting participants over time as children mature and cohort retention. Understanding participants’ study-specific knowledge, attitudes, beliefs, and behavior may offer insights into these issues from a psychological perspective. Methods: We conducted an analysis of factors associated with parent–child communication about minor children's participation in a population-based birth cohort; children's knowledge about their own participation; and parental willingness to be recontacted for future study among Swedish parents (N = 3,605) of children originally enrolled at birth in a prospective study of type 1 diabetes risk. Results: More open parent–child communication about disease risk screening research and greater knowledge among children about their own research participation facilitated greater parent willingness to participate in further study. Parents’ decisions about further study participation were most strongly favorable among those who communicated openly with their child and with high study-specific knowledge. Conclusions: Epidemiologists, bioethicists, and others involved in the design and conduct of large-scale, prospective birth cohorts may consider embedding periodic assessments of participants’ study-specific attitudes and behavior to address long-term retention and willingness to engage in future research.