Ethical aspects of longitudinal studies involving children

The ABIS study (All Babies in South-East Sweden) is a longitudinal predictive screening for type 1 diabetes (T1DM) that has followed a large birth cohort since 1997 (n=17, 055). ABIS I followed children 0-7 years of age. Clinical data have been collected through diary, extensive questionnaires (at birth, 1 year, 2,5-3 years, and 5-6 years), and biological samples (cord-and capillary blood, hair, stool, saliva, urine).

ABIS II will follow the same children at ages 9-14. Tied to the ABIS biomedical research is a multi-disciplinary project aiming to analyse and suggest criteria for information, consent, and disclosure issues in Swedish longitudinal medical research involving children.

This project was a collaboration between researchers at the Centre for Research Ethics & Bioethics, the ABIS group at the Department of Molecular and Clinical Medicine, Linköping University and the Department of Learning, Management and Ethics, Karolinska Institutet.

More ABIS related research on children's assent and participation in a longitudinal cohort study of child health

Visit the ABIS study website

Publications

Swartling, U, Helgesson, G, Hansson, MG, Ludvigsson, J, Split views among parents regarding children’s right to decide about participation in research: a questionnaire survey, Journal of Medical Ethics 2009;35(7):450-455.

Helgesson G, Hansson MG, Ludvigsson J, Swartling U, Practical matters, rather than lack of trust, motivate non-participation in a long-term cohort trial, Pediatric Diabetes, 2009;10(6):408-412. 35

Swartling U, Helgesson G, Hansson MG, Ludvigsson J, Parental authority, research interests and children’s right to decide in medical research – an uneasy tension?, Clin Ethics 2008;3:69-74

Helgesson G, Eriksson S, Swartling U, Limited Relevance of the Right Not to Know—Reflections on a Screening Study, Accountability in Research: Policies and Quality Assurance, 2007;14(3)197-209. 38

Swartling U, Eriksson S, Ludvigsson J, Helgesson G, Concern, pressure and lack of knowledge affect choice of not wanting to know high-risk status, European Journal of Human Genetics 2007;15:556–562. 39

Helgesson G, Children, longitudinal studies, and informed consent, Medicine, Health Care and Philosophy 2005;8:307-313. 42

Contact

  • Mats G. Hansson, Professor of Biomedical Ethics
  • Stefan Eriksson, Associate Professor of Research Ethics
  • Johnny Ludvigsson, Professor (Linköping University)
  • Gert Helgesson, Professor (Karolinska Institutet)

Funding

The Swedish Research Council (Vetenskapsrådet) and Swedish Council for Working Life and Social Research (FAS).

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.

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Biobank and registry ethics & law, report