Kenneth P Tercyak1, Ulrica Swartling, Darren Mays, Suzanne Bennett Johnson, Johnny Ludvigsson. 1. 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.
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.
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: Angela D Liese; Ralph B D'Agostino; Richard F Hamman; Patrick D Kilgo; Jean M Lawrence; Lenna L Liu; Beth Loots; Barbara Linder; Santica Marcovina; Beatriz Rodriguez; Debra Standiford; Desmond E Williams Journal: Pediatrics Date: 2006-10 Impact factor: 7.124
Authors: Philip J Landrigan; Leonardo Trasande; Lorna E Thorpe; Charon Gwynn; Paul J Lioy; Mary E D'Alton; Heather S Lipkind; James Swanson; Pathik D Wadhwa; Edward B Clark; Virginia A Rauh; Frederica P Perera; Ezra Susser Journal: Pediatrics Date: 2006-11 Impact factor: 7.124
Authors: David Ogilvie; Peter Craig; Simon Griffin; Sally Macintyre; Nicholas J Wareham Journal: BMC Public Health Date: 2009-04-28 Impact factor: 3.295