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Ethical aspects of undergoing a predictive genetic testing for Huntington's disease.

Lilja Andersson, Petra LU ; Juth, Niklas ; Petersén, Åsa LU ; Graff, Caroline and Edberg, Anna-Karin LU (2013) In Nursing Ethics 20(2). p.189-199
Abstract
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.
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author
; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Nursing Ethics
volume
20
issue
2
pages
189 - 199
publisher
SAGE Publications
external identifiers
  • wos:000317069800009
  • pmid:22918057
  • scopus:84874775589
  • pmid:22918057
ISSN
1477-0989
DOI
10.1177/0969733012452686
language
English
LU publication?
yes
additional info
The information about affiliations in this record was updated in December 2015. The record was previously connected to the following departments: Division of Nursing (Closed 2012) (013065000), Translational Neuroendocrinology (013210010)
id
2b50e13e-47e5-45e6-bdfd-3d5553c8457d (old id 3047252)
alternative location
http://www.ncbi.nlm.nih.gov/pubmed/22918057?dopt=Abstract
date added to LUP
2016-04-01 11:05:01
date last changed
2022-02-25 08:21:29
@article{2b50e13e-47e5-45e6-bdfd-3d5553c8457d,
  abstract     = {{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.}},
  author       = {{Lilja Andersson, Petra and Juth, Niklas and Petersén, Åsa and Graff, Caroline and Edberg, Anna-Karin}},
  issn         = {{1477-0989}},
  language     = {{eng}},
  number       = {{2}},
  pages        = {{189--199}},
  publisher    = {{SAGE Publications}},
  series       = {{Nursing Ethics}},
  title        = {{Ethical aspects of undergoing a predictive genetic testing for Huntington's disease.}},
  url          = {{http://dx.doi.org/10.1177/0969733012452686}},
  doi          = {{10.1177/0969733012452686}},
  volume       = {{20}},
  year         = {{2013}},
}