Literature DB >> 2522360

The motivation of at-risk individuals and their partners in deciding for or against predictive testing for Huntington's disease.

G Evers-Kiebooms1, A Swerts, J J Cassiman, H Van den Berghe.   

Abstract

Sixty-six percent of the at-risk persons and 74% of the partners in a large survey in Belgium have the intention of making use of predictive testing for Huntington's disease. One third of them, however, have expressed the intention of postponing the final decision for various reasons. The intention to be tested is not at all related to sociodemographic characteristics. A thorough exploration of the reasons for being in favour of or against taking the test reveals that the motivation inspiring this very personal decision is very complex. In the group of at-risk persons, less than half of the variation in the intention to be tested is explained by the role of a series of specific reasons as predictor variables in a regression analysis. The proportion of explained variation is slightly higher in the group of partners. 'To have certainty about my own future' and 'to make arrangements for the future' play a major part in the decision of the total group. 'Making decisions concerning children' and to a larger extent 'informing children about their risk status' are important factors in deciding in favour of the test.

Entities:  

Mesh:

Year:  1989        PMID: 2522360     DOI: 10.1111/j.1399-0004.1989.tb02902.x

Source DB:  PubMed          Journal:  Clin Genet        ISSN: 0009-9163            Impact factor:   4.438


  15 in total

Review 1.  Psychological impact of genetic testing for Huntington's disease: an update of the literature.

Authors:  B Meiser; S Dunn
Journal:  J Neurol Neurosurg Psychiatry       Date:  2000-11       Impact factor: 10.154

Review 2.  Psychological effect of genetic testing for Huntington's disease: an update of the literature.

Authors:  B Meiser; S Dunn
Journal:  West J Med       Date:  2001-05

3.  Adverse psychological events occurring in the first year after predictive testing for Huntington's disease. The Canadian Collaborative Study Predictive Testing.

Authors:  K Lawson; S Wiggins; T Green; S Adam; M Bloch; M R Hayden
Journal:  J Med Genet       Date:  1996-10       Impact factor: 6.318

4.  The perceived advantages and disadvantages of presymptomatic testing for Machado-Joseph disease: development of a new self-response inventory.

Authors:  Luísa Rolim; José A Zagalo-Cardoso; Constança Paúl; Jorge Sequeiros; Manuela Fleming
Journal:  J Genet Couns       Date:  2006-09-27       Impact factor: 2.537

5.  Amyotrophic lateral sclerosis in a patient with a family history of huntington disease: genetic counseling challenges.

Authors:  Andrea L Smith; James W Teener; Brian C Callaghan; Jack Harrington; Wendy R Uhlmann
Journal:  J Genet Couns       Date:  2014-04-26       Impact factor: 2.537

Review 6.  Predictors of genetic testing decisions: a systematic review and critique of the literature.

Authors:  Kate Sweeny; Arezou Ghane; Angela M Legg; Ho Phi Huynh; Sara E Andrews
Journal:  J Genet Couns       Date:  2014-04-11       Impact factor: 2.537

7.  The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions.

Authors:  Lynn S Adams; Jeri L Miller; Patricia A Grady
Journal:  J Palliat Med       Date:  2016-06-01       Impact factor: 2.947

8.  Nonparticipation in Huntington's Disease Predictive Testing: Reasons for Caution in Interpreting Findings.

Authors:  J Binedell; J R Soldan
Journal:  J Genet Couns       Date:  1997-12       Impact factor: 2.537

9.  Attitudes towards bipolar disorder and predictive genetic testing among patients and providers.

Authors:  L B Smith; B Sapers; V I Reus; N B Freimer
Journal:  J Med Genet       Date:  1996-07       Impact factor: 6.318

Review 10.  Huntington's disease and the ethics of genetic prediction.

Authors:  G Terrenoire
Journal:  J Med Ethics       Date:  1992-06       Impact factor: 2.903

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