Children's assent and participation in a longitudinal cohort study of child health
Format
Research project in collaboration with the Centre for Applied Ethcis and representatives of the ABIS study at Linköping University, funded by the Swedish Research Council.
Time table
2009 - 2010
Aim
This project will investigate how 11-year-old children in a longitudinal type-1-diabetes study look upon their participation in research studies.
We have studied ethical and psychosocial issues within this context since 2000. The ABIS study (All Babies in Southeast Sweden) 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 children will now be invited back 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 will investigate how these 11-year olds perceive medical research, what kind of information they would like and if they would like to assume a more active role as research partners when they participate in research. From this empirical vantage point, we will 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 good way to show respect for children as persons.
- More information about the ABIS study >
- ABIS related research on ethical aspects of longitudinal studies involving children
More information
- Mats G. Hansson, Professor of Biomedical Ethics
Participants
Anders Nordgren, Professor of Bioethics, Director of the Centre for Applied Ethics, Linköping University (PI)
Johnny Ludvigsson, Professor and PI of the ABIS-study and Chairman for Diabetes Research Centre, Linköping University
Mats G. Hansson, Professor of Biomedical Ethics at Uppsala University and director of the Centre for Research Ethics & Bioethics
Ulrica Swartling, PhD, Senior researcher, Division of Paediatrics, Linköping University
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