Parents’ Perspectives on Research Involving Children

Abstract

Children's participation in research is essential for the development of safe and ageappropriate treatments. However, children's participation is limited. The aim of this study was to determine (1) mothers' and fathers' views on which agencies/persons should evaluate the level of acceptable risk for children and (2) parents' willingness to allow children to participate in research. Medical factors, sociodemographics, and research attitudes were related to willingness. The study used a cross-sectional and longitudinal design with 863 expectant parents (435 women; 428 men) consecutively recruited at gestational week 19 during routine ultrasound examination at 2 hospitals in Uppsala County, Sweden. 123 women at gestational week 34 were followed-up.Parental ratings of agencies/persons' degree of involvement in risk-evaluation for child research participants and parents' willingness to allow children to participate in research were the main outcome measures.Most parents believed that more pediatric research was needed. Attitudes played a major role in willingness, indicating a potential for information that could modify willingness. Over 80% of mothers and fathers rated the attending physician as needing to be "fully involved" in risk evaluation for research participants. Parents' views contradict current trends in research ethics which place evaluation of risk in the hands of regional agencies. Instead, the majority of parents would like the decision to be individually based on the attending physicians advise.We conclude that children's participation in research could be improved by actively incorporating the attending physician and by educating the public so that research attitudes can be based on accurate information. 73

Views of Adolescents and Parents on Pediatric Research Without the Potential for Clinical Benefit

“…Previous surveys have evaluated children' s and their parent's views of pediatric research that offers the potential for clinical benefit. [15][16][17][18][19][20][21][22][23][24][25][26] A few studies have attempted to collect empirical data on pediatric research that does not offer the potential for clinical benefit. 27 Unfortunately, most of these studies failed to state explicitly that the research in question posed risks.…”

Ethical implications of including children in a large biobank for genetic‐epidemiologic research: A qualitative study of public opinion

“…A small number of studies have focused on parents' and children's opinions about the consent process [Brody et al, 2003; Broome et al, 2003; Geller et al, 2003; Tait et al, 2004; Stolt et al, 2005; Chappuy et al, 2006; Gattuso et al, 2006; Rodriguez et al, 2006; Eder et al, 2007; Sammons et al, 2007] and general participation [Bernhardt et al, 2003] in studies of genetic susceptibility. Some studies have looked at parents' reasons for participation or refusal, and their considerations of study risks and benefits [Tait et al, 2004; Gattuso et al, 2006; Rodriguez et al, 2006]. Other studies have examined parents' attitudes about whether to perform neonatal and early childhood genetic testing for conditions such as deafness and what to do with the results [Middleton et al, 1997; Burton et al, 2006].…”

Ethics takes time, but not that long

“…It is further clear that most patients want to be informed and that many also want to participate in medical decision-making [8-10]. Accordingly, there is a strong emphasis on patients' understanding of procedures, risks, benefits and alternative therapies whether participating in medical treatment or in clinical trials [11-13].…”