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Updated: May 8, 2026
Assessment of Child Anthropometry in a Large Epidemiologic Study
Published on: February 2, 2017
Behavioral Science Research Informs Bioethical Issues in the Conduct of Large-Scale Studies of Children's Disease
Kenneth P Tercyak1, Ulrica Swartling, Darren Mays
1Associate 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.
Insights
Open parent-child communication and participant knowledge enhance willingness to continue in pediatric birth cohort studies. This improves long-term retention and engagement in vital disease risk research.
Area of Science:
- Pediatric Epidemiology
- Bioethics
- Psychological Science
Background:
- Longitudinal birth cohort studies face bioethical challenges like re-consenting and participant retention.
- Understanding participants' knowledge and attitudes is crucial for addressing these issues.
Purpose of the Study:
- To analyze factors influencing parent-child communication about pediatric research participation.
- To examine children's knowledge of their involvement in birth cohort studies.
- To assess parental willingness for future study engagement.
Main Methods:
- Analysis of data from 3,605 Swedish parents in a birth cohort study on type 1 diabetes risk.
- Investigated parent-child communication, child's study knowledge, and parental willingness for re-contact.
Main Results:
- Open communication between parents and children about research significantly increased parental willingness to continue participation.
- Children's higher knowledge of their own study involvement also positively correlated with parental willingness.
- Parents demonstrating open communication and high study-specific knowledge showed the most favorable decisions for continued participation.
Conclusions:
- Periodic assessments of participants' attitudes and behaviors are recommended for large-scale birth cohorts.
- This approach can help address challenges in long-term retention and engagement in prospective research.
- Improves ethical considerations and study continuity in pediatric disease risk 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.
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