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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
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Nursing Ethics
volume
20
issue
2
pages
189 - 199
publisher
SAGE Publications Inc.
external identifiers
  • wos:000317069800009
  • pmid:22918057
  • scopus:84874775589
ISSN
1477-0989
DOI
10.1177/0969733012452686
language
English
LU publication?
yes
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
2012-09-05 20:52:03
date last changed
2019-02-10 03:25:45
@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 Inc.},
  series       = {Nursing Ethics},
  title        = {Ethical aspects of undergoing a predictive genetic testing for Huntington's disease.},
  url          = {http://dx.doi.org/10.1177/0969733012452686},
  volume       = {20},
  year         = {2013},
}