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Children's Assent and Participation in a Longitudinal Cohort Study of Child Health

Anders Nordgren

The ABIS study is a population-based prospective cohort study in which newborn infants have been followed from birth and onwards with regular biological samples and questionnaires. The parents of all 21 700 babies born in Southeast Sweden from Oct 1, 1997, to Oct 1, 1999, were asked to participate in the ABIS study, which aimed at screening for Type 1 Diabetes (T1D) associated autoimmunity and identifying environmental factors related to the risk of T1D. During the fall of 2009, the ABIS study group will invite the original group of 17 055 children for the 11-year control. From a developmental perspective, this age group is of great interest, standing on the threshold of adolescence and having reached a significant level of maturity, both cognitively and morally. In this project we investigate how they look upon medical research, what kind of information they would like and if they would like to assume a more active participatory role as "research partners". From this empirical vantage point, we critically examine the tradition of designing children's assent to research on the elements of informed consent and explore the possibility of a more participatory approach. Methodologically the design includes focus groups and postal questionnaires. We believe that a participatory model of the kind proposed is worth exploring as a better way to show respect for children as persons.

Participants:

Professor Anders Nordgren
Professor Mats G. Hansson, Centre for Research Ethics and Bioethics, Uppsala University
Professor Johnny Ludvigsson, Department of Clinical and Experimental Medicine, Linköping University
Dr. Ulrica Swartling, Department of Clinical and Experimental Medicine, Linköping University

Funding:

The Swedish Research Council 2009-2010

Publication:

Swartling U, Hansson MG, Ludvigsson J, Nordgren A, 2011. "My parents decide if I can. I decide if I want." Children’s views on participation in medical research. Journal of Empirical Research on Human Research Ethics 6(4), pp. 68-75.


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Last updated: Tue Oct 02 17:03:36 CEST 2012