uu.seUppsala University Publications
Change search
ReferencesLink to record
Permanent link

Direct link
Split views among parents regarding children's right to decide about participation in research: a questionnaire survey
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
2009 (English)In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 35, no 7, 450-455 p.Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2009. Vol. 35, no 7, 450-455 p.
National Category
Medical and Health Sciences
URN: urn:nbn:se:uu:diva-124726DOI: 10.1136/jme.2008.027383ISI: 000267590300014PubMedID: 19567697OAI: oai:DiVA.org:uu-124726DiVA: diva2:317914
Available from: 2010-05-05 Created: 2010-05-05 Last updated: 2010-12-28Bibliographically approved

Open Access in DiVA

No full text

Other links

Publisher's full textPubMed

Search in DiVA

By author/editor
Hansson, M. G.
By organisation
Centre for Research Ethics and Bioethics
In the same journal
Journal of Medical Ethics
Medical and Health Sciences

Search outside of DiVA

GoogleGoogle Scholar

Altmetric score

Total: 135 hits
ReferencesLink to record
Permanent link

Direct link