liu.seSearch for publications in DiVA
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • oxford
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
How to handle informed consent in longitudinal studies when participants have a limited understanding of the study
Centre for Bioethics Uppsala Universitet.
Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Pediatrics. Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Pediatrics.
2005 (English)In: Journal of Medical Ethics, ISSN 0306-6800, Vol. 31, no 11, 670-673 p.Article in journal (Refereed) Published
Abstract [en]

Empirical findings from a Swedish longitudinal screening study show that many of the research subjects had a limited understanding of the study. Nevertheless they were satisfied with the understanding they had and found it sufficient for informed continued participation. Were they wrong? In this paper, it is argued that the kind of understanding that is morally required depends partly on the kind of understanding on which the research subjects want to base their decisions, and partly on what kind of knowledge they lack. Researchers must ensure that the information process is not flawed and that participants receive the information they want. To achieve this, new information efforts may be needed. Researchers must also ensure that research subjects have knowledge about aspects of importance to them. Lack of understanding may, however, be the result of conscious choices by research subjects to disregard some of the information because it is not important to them. Such choices should normally be respected.

Place, publisher, year, edition, pages
2005. Vol. 31, no 11, 670-673 p.
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-30860DOI: 10.1136/jme.2004.009274Local ID: 16520OAI: oai:DiVA.org:liu-30860DiVA: diva2:251683
Available from: 2009-10-09 Created: 2009-10-09 Last updated: 2011-01-12

Open Access in DiVA

No full text

Other links

Publisher's full text

Authority records BETA

Ludvigsson, JohnnySwartling, Ulrica

Search in DiVA

By author/editor
Ludvigsson, JohnnySwartling, Ulrica
By organisation
Faculty of Health SciencesPediatricsDepartment of Paediatrics in Linköping
In the same journal
Journal of Medical Ethics
Medical and Health Sciences

Search outside of DiVA

GoogleGoogle Scholar

doi
urn-nbn

Altmetric score

doi
urn-nbn
Total: 128 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • oxford
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf