Split views among parents regarding children’s right to decide about participation in research: a questionnaire survey

• Published in: Journal of medical ethics Vol. 35; no. 7; pp. 450 - 455
• Main Authors: Swartling, U, Helgesson, G, Hansson, M G, Ludvigsson, J
• Format: Journal Article
• Language: English
• Published: England BMJ Publishing Group Ltd and Institute of Medical Ethics 01.07.2009; Institute of Medical Ethics and BMJ Publishing Group; BMJ Publishing Group Ltd; BMJ Publishing Group LTD
• Subjects: Adult; Aged; Aged, 80 and over; Bioethics; Child; Child Advocacy - psychology; Childrens rights; Decision Making; Diabetes; Ethical aspects; Human experimentation in medicine; Human medical experimentation; Human rights; Human subjects; Humans; Informed consent; Informed Consent - ethics; Informed Consent - psychology; Longitudinal Studies; Medical research; MEDICIN; Medicin och hälsovetenskap; MEDICINE; Middle Aged; Parent-Child Relations; Parents; Patient Selection - ethics; Pediatrics; Questionnaires; Refusal to Participate - ethics; Refusal to Participate - psychology; Research Ethics; Research Subjects - psychology; Self-experimentation in medicine; Studies; Surveys; Surveys and Questionnaires; Sweden; Type 1 diabetes mellitus; Young Adult; Sweden
• ISSN: 0306-6800; 1473-4257; 1473-4257
• DOI: 10.1136/jme.2008.027383

Based on extensive questionnaire data, this paper focuses on parents’ views about children’s right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at some point be allowed decisional authority when participating in research: 41.6% of the parents reported being against or unsure. Those who responded positively believed that children should be allowed to decide about blood-sampling procedures (70%), but to a less extent about participation (48.5%), analyses of samples (19.7%) and biological bank storage (15.4%). That as many as possible should remain in the study, and that children do not have the competence to understand the consequences for research was strongly stressed by respondents who do not think children should have a right to decide. When asked what interests they consider most important in paediatric research, child autonomy and decision-making was ranked lowest. We discuss the implications of these findings.