Children's assent and participation in a longitudinal cohort study of child health
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.
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 in a project on ethical aspects of longitudinal studies involving children.
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.
Publications
Swartling U, Helgesson G, Ludvigsson J, Hansson MG, J, Nordgren A, Children's Views on Long-Term Screening for Type 1 Diabetes, J Empir Res Hum Res Ethics. 2014;9(4):1-9
Contact
This project is a collaboration with researchers at the Centre for Applied Ethics and representatives of the ABIS study at Linköping University (funded by the Swedish Research Council).
- Mats G. Hansson, Professor of Biomedical Ethics, CRB
- 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
Funding
The Swedish Research Council (Vetenskapsrådet) and Swedish Council for Working Life and Social Research (FAS), 2009-2010.
Biobanks and registries in research
We aim for a biobank and registry management that satisfies ethical and legal demands from the research community, the public and the individual.
PhD: Children in palliative care
Li Jalmsell's PhD-project focuses on palliative care and end-of-life care in pediatric oncology with a focus not only on the child, but also how different aspects in the end-of-life care affect bereaved family-members long-term.
Pretend play for children with cancer
We ran a pilot project to see if pretend play can hellp children with cancer and their families.
Biobank and registry ethics & law
For many years, researchers at CRB have provided constructive advise on how to deal with ethical and legal aspects of research using human tissue material and personal data. We have collaborated with biomedical scientists and published our findings in peer reviewed journals. As a summary of this research we have compiled a list of publications with abstracts. We have grouped them thematically to help you find the ones you might be interested in reading. Our publications deal with ethical frameworks and policy, regulatory aspects of biobank and registry research, informed consent, ethical review, integrity concerns, trust, genetic testing, indicental findings, commercialization, public and patient perceptions, rare diseases, children & biobanks & genetics, and biobank studies.
