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"My parents decide if I can. I decide if I want to." Children’s views on participation in medical research
Linköping University, Department of Clinical and Experimental Medicine, Pediatrics. Linköping University, Faculty of Health Sciences.
Uppsala University.
Linköping University, Department of Clinical and Experimental Medicine, Pediatrics. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
Linköping University, Department of Culture and Communication, Centre for Applied Ethics. Linköping University, Faculty of Arts and Sciences.
2011 (English)In: Journal of Empirical Research on Human Research Ethics, ISSN 1556-2646, E-ISSN 1556-2654, Vol. 6, no 4, 68-74 p.Article in journal (Refereed) Published
Abstract [en]

The participation of children in medical research raises many ethical issues, in particular regarding assent. However, little is known about children's own views on participation. This study presents results from interviews with children 10–12 years old with and without experience in a large-scale longitudinal screening study. We identified five themes: (1) knowledge about research, (2) a sense of altruism, (3) shared decision-making and right to dissent, (4) notions of integrity, privacy, and access, and (5) understanding of disease risk and personal responsibilities. We conclude that the children feel positive towards medical research, and want to take an active part in decisions and have their integrity respected. However, the study also indicates that children who had participated in longitudinal screening had a limited understanding, suggesting the vital importance of providing information appropriate to their age and maturity. This information should be provided out of respect for the children as persons, but also to promote their willingness to continue participating in longitudinal studies.                 

Place, publisher, year, edition, pages
University of California Press, 2011. Vol. 6, no 4, 68-74 p.
Keyword [en]
children, research ethics, assent, screening
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-73287DOI: 10.1525/jer.2011.6.4.68ISI: 000299652300007PubMedID: 22228061OAI: oai:DiVA.org:liu-73287DiVA: diva2:471010
Note
funding agencies|Swedish Research Council||Available from: 2011-12-30 Created: 2011-12-30 Last updated: 2017-12-08Bibliographically approved

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Swartling, UlricaLudvigsson, JohnnyNordgren, Anders

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PediatricsFaculty of Health SciencesDepartment of Paediatrics in LinköpingCentre for Applied EthicsFaculty of Arts and Sciences
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Journal of Empirical Research on Human Research Ethics
Medical and Health Sciences

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