Tercyak Kenneth P, Swartling Ulrica, Mays Darren, Johnson Suzanne Bennett, Ludvigsson Johnny
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.
AJOB Prim Res. 2013 Jan 1;4(3):4-14. doi: 10.1080/21507716.2013.806968.
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.
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 ( = 3,605) of children originally enrolled at birth in a prospective study of type 1 diabetes risk.
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.
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.
儿科常见疾病风险自然史的出生队列研究引发了许多生物伦理问题，包括随着儿童成长对参与者进行重新同意以及队列保留。从心理学角度了解参与者特定于研究的知识、态度、信念和行为可能有助于洞察这些问题。
我们对与父母 - 子女就幼儿参与基于人群的出生队列进行沟通的相关因素；儿童对自身参与情况的了解；以及瑞典父母（n = 3605）中愿意在未来研究中被再次联系的情况进行了分析，这些儿童最初在一项1型糖尿病风险前瞻性研究中于出生时入组。
关于疾病风险筛查研究的亲子沟通越开放，儿童对自身研究参与情况的了解越多，父母参与进一步研究的意愿就越高。在那些与孩子进行了开放沟通且对研究有较高特定知识的父母中，他们关于进一步参与研究的决定最为积极。
参与大规模前瞻性出生队列设计和实施的流行病学家、生物伦理学家及其他人员，可能会考虑对参与者特定于研究的态度和行为进行定期评估，以解决长期保留问题以及参与未来研究的意愿。
