liu.seSearch for publications in DiVA
Endre søk
RefereraExporteraLink to record
Permanent link

Direct link
Referera
Referensformat
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • oxford
  • Annet format
Fler format
Språk
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Annet språk
Fler språk
Utmatningsformat
  • html
  • text
  • asciidoc
  • rtf
"My parents decide if I can. I decide if I want to." Children’s views on participation in medical research
Linköpings universitet, Institutionen för klinisk och experimentell medicin, Pediatrik. Linköpings universitet, Hälsouniversitetet.
Uppsala University.
Linköpings universitet, Institutionen för klinisk och experimentell medicin, Pediatrik. Linköpings universitet, Hälsouniversitetet. Östergötlands Läns Landsting, Barn- och kvinnocentrum, Barn- och ungdomskliniken i Linköping.
Linköpings universitet, Institutionen för kultur och kommunikation, Centrum för tillämpad etik. Linköpings universitet, Filosofiska fakulteten.
2011 (engelsk)Inngår i: Journal of Empirical Research on Human Research Ethics, ISSN 1556-2646, E-ISSN 1556-2654, Vol. 6, nr 4, s. 68-74Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

The participation of children in medical research raises many ethical issues, in particular regarding assent. However, little is known about children's own views on participation. This study presents results from interviews with children 10–12 years old with and without experience in a large-scale longitudinal screening study. We identified five themes: (1) knowledge about research, (2) a sense of altruism, (3) shared decision-making and right to dissent, (4) notions of integrity, privacy, and access, and (5) understanding of disease risk and personal responsibilities. We conclude that the children feel positive towards medical research, and want to take an active part in decisions and have their integrity respected. However, the study also indicates that children who had participated in longitudinal screening had a limited understanding, suggesting the vital importance of providing information appropriate to their age and maturity. This information should be provided out of respect for the children as persons, but also to promote their willingness to continue participating in longitudinal studies.                 

sted, utgiver, år, opplag, sider
University of California Press, 2011. Vol. 6, nr 4, s. 68-74
Emneord [en]
children, research ethics, assent, screening
HSV kategori
Identifikatorer
URN: urn:nbn:se:liu:diva-73287DOI: 10.1525/jer.2011.6.4.68ISI: 000299652300007PubMedID: 22228061OAI: oai:DiVA.org:liu-73287DiVA, id: diva2:471010
Merknad
funding agencies|Swedish Research Council||Tilgjengelig fra: 2011-12-30 Laget: 2011-12-30 Sist oppdatert: 2017-12-08bibliografisk kontrollert

Open Access i DiVA

Fulltekst mangler i DiVA

Andre lenker

Forlagets fulltekstPubMed

Person

Swartling, UlricaLudvigsson, JohnnyNordgren, Anders

Søk i DiVA

Av forfatter/redaktør
Swartling, UlricaLudvigsson, JohnnyNordgren, Anders
Av organisasjonen
I samme tidsskrift
Journal of Empirical Research on Human Research Ethics

Søk utenfor DiVA

GoogleGoogle Scholar

doi
pubmed
urn-nbn

Altmetric

doi
pubmed
urn-nbn
Totalt: 266 treff
RefereraExporteraLink to record
Permanent link

Direct link
Referera
Referensformat
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • oxford
  • Annet format
Fler format
Språk
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Annet språk
Fler språk
Utmatningsformat
  • html
  • text
  • asciidoc
  • rtf