uu.seUppsala University Publications
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • 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 Genetic Information: A Comparison of Attitudes among Patients and the General Population
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Genetics and Pathology.
Show others and affiliations
2010 (English)In: Public Health Genomics, ISSN 1662-8063, Vol. 13, no 7-8, 396-405 p.Article in journal (Refereed) Published
Abstract [en]

Background: So far there are no studies comparing the attitudes of patients with hereditary conditions to the attitudes of the general public on how to handle genetic risk information which mutation carriers refuse to disclose to relevant family members. The purpose of the present study was to investigate whether such patients and members of the general public want to be informed about the existence of hereditary conditions within their family, and under which conditions they want healthcare providers to breach confidentiality. Methods: It was hypothesized that the desire to be informed would be influenced by characteristics of both the disease and the individual. Systematically varying 3 disease characteristics (fatality, penetrance and treatment availability) yielded 8 versions of a questionnaire, which was administered to general population samples in Norway and Sweden (N = 3,207) and to patient samples in both countries (N = 822). Individual differences in uncertainty avoidance, coping style and consideration for future consequences were also assessed. Results and Conclusion: A majority of both patients and the general public want to be informed about the existence of hereditary conditions within their family. However, patients are more positive towards being informed, both with and without the relative's consent, than the general public. The main predictor of the desire to be informed was uncertainty avoidance in both samples.

Place, publisher, year, edition, pages
2010. Vol. 13, no 7-8, 396-405 p.
Keyword [en]
At-risk relatives, Confidentiality, Duty to warn, Genetic information
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-138839DOI: 10.1159/000313458ISI: 000285011900002PubMedID: 20606381OAI: oai:DiVA.org:uu-138839DiVA: diva2:380067
Available from: 2010-12-20 Created: 2010-12-20 Last updated: 2011-02-01Bibliographically approved

Open Access in DiVA

No full text

Other links

Publisher's full textPubMed

Authority records BETA

Nordin, Karin

Search in DiVA

By author/editor
Nordin, Karin
By organisation
Department of Genetics and PathologyCaring Sciences
Medical and Health Sciences

Search outside of DiVA

GoogleGoogle Scholar

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 395 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • 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