Understanding the decision to take the predictive test for Huntington disease

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dc.contributor Wichita State University. Department of Psychology en_US
dc.contributor.author Meissen, Gregory J. en_US
dc.contributor.author Mastromauro, C. A. en_US
dc.contributor.author Kiely, D. K. en_US
dc.contributor.author McNamara, D. S. en_US
dc.contributor.author Myers, R. H. en_US
dc.date.accessioned 2012-02-29T16:34:04Z
dc.date.available 2012-02-29T16:34:04Z
dc.date.issued 1991-06 en_US
dc.identifier 1678928 en_US
dc.identifier 7708900 en_US
dc.identifier NS16367 en_US
dc.identifier.citation American journal of medical genetics. 1991 Jun 15; 39(4): 404-10. en_US
dc.identifier.issn 0148-7299 en_US
dc.identifier.uri http://dx.doi.org/10.1002/ajmg.1320390408 en_US
dc.identifier.uri http://hdl.handle.net/10057/4618
dc.description Click on the DOI link below to access the article (may not be free). en_US
dc.description.abstract The predictive test for Huntington disease (HD) has allowed those at risk to determine gene status prior to symptoms. The purpose of this research was to understand the motivation and the anticipated reactions of those requesting the test. Forty persons at 50% risk for HD and 31 companions participated in a structured personal interview as part of the predictive test protocol. Reasons for taking the test centered on the reduction of anxiety and uncertainty associated with being at risk and enhanced planning and decision making. Participants also believed that taking the test would produce more positive than negative outcomes. With a favorable result, most anticipated a reduction of anxiety, a more normal future, and relief knowing their children would be at a very low risk. Most also cited benefits as more likely than consequences with an unfavorable result. Making the most of life, easier planning, and reduced uncertainty were rated as more likely than any of the adverse impacts, including short-term depression and becoming frightened. Almost all participants (95%) said they would rather learn that they have the HD gene than remain at 50% risk. The uncertainty, anxiety, and chronic stress associated with being at risk appears to underlie the motivation of many seeking the predictive test for HD. en_US
dc.description.sponsorship NINDS NIH HHS en_US
dc.format.extent 404-10 en_US
dc.language.iso eng en_US
dc.publisher John Wiley & Sons en_US
dc.relation.ispartofseries American Journal of Medical Genetics en_US
dc.relation.ispartofseries Am. J. Med. Genet. en_US
dc.source NLM en_US
dc.subject Research Support, Non-U.S. Gov't en_US
dc.subject Research Support, U.S. Gov't, P.H.S. en_US
dc.subject.mesh Adult en_US
dc.subject.mesh Female en_US
dc.subject.mesh Genetic Linkage en_US
dc.subject.mesh Genetic Techniques/psychology en_US
dc.subject.mesh Humans en_US
dc.subject.mesh Huntington Disease/diagnosis en_US
dc.subject.mesh Interviews as Topic en_US
dc.subject.mesh Likelihood Functions en_US
dc.subject.mesh Male en_US
dc.subject.mesh Middle Aged en_US
dc.subject.mesh Motivation en_US
dc.subject.mesh Polymorphism, Restriction Fragment Length en_US
dc.subject.mesh Predictive Value of Tests en_US
dc.subject.mesh Risk en_US
dc.subject.mesh Huntington Disease/genetics en_US
dc.subject.mesh Huntington Disease/psychology en_US
dc.title Understanding the decision to take the predictive test for Huntington disease en_US
dc.type Article en_US
dc.coverage.spacial United States en_US
dc.description.version peer reviewed en_US
dc.rights.holder Copyright © 1991 John Wiley & Sons en_US

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