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Ethical aspects of undergoing a predictive genetic testing for Huntington’s disease
Lund University.
Karolinska Institute.
Lund University.
Karolinska Institute.
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2013 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 20, no 2, 189-199 p.Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to describe the experiences of undergoing a presymptomatic genetic test for the hereditary and fatal Huntington’s disease, using a case study approach. The study was based on 18 interviews with a young woman and her husband from the decision to undergo the test, to receiving the results and trying to adapt to them, which were analysed using a life history approach. The findings show that the process of undergoing a presymptomatic test involves several closely connected ethical and medical questions, such as the reason for the test, the consequences of the test results and how health-care services can be developed to support people in this situation.

Place, publisher, year, edition, pages
2013. Vol. 20, no 2, 189-199 p.
Keyword [en]
Case study, ethics, Huntington’s disease, life history, presymptomatic genetic test, support
National Category
Nursing
Identifiers
URN: urn:nbn:se:hkr:diva-9642DOI: 10.1177/0969733012452686ISI: 000317069800009PubMedID: 22918057OAI: oai:DiVA.org:hkr-9642DiVA: diva2:547442
Available from: 2012-08-28 Created: 2012-08-28 Last updated: 2015-01-02Bibliographically approved

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Edberg, Anna-Karin
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CiteExportLink to record
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