Ethical aspects of undergoing a predictive genetic testing for Huntington's disease.
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.
Division of Nursing, Department of Health Sciences, Lund University, P.O. Box 157, SE-221 00 Lund, Sweden. Petra.lilja_andersson@med.lu.se
Petra Lilja
PL
Andersson
Niklas
N
Juth
Åsa
Å
Petersén
Caroline
C
Graff
Anna-Karin
AK
Edberg
D004993:Ethics, Nursing; D005260:Female; D005820:Genetic Testing / Q000941:ethics*; D006801:Humans; D006816:Huntington Disease