title: 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 re-consenting 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 re-contacted 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.
authors: Associate Professor, Director of Behavioral Prevention Research, Division of Population Sciences, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, 3300 Whitehaven Street, NW, Suite 4100 Washington, DC 20007, USA.
authors: Kenneth P
authors: KP
authors: Tercyak
authors: Ulrica
authors: U
authors: Swartling
authors: Darren
authors: D
authors: Mays
authors: Suzanne Bennett
authors: SB
authors: Johnson
authors: Johnny
authors: J
authors: Ludvigsson
keywords: behavioral science; bioethics; children; disease risk screening; parents
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