Literature DB >> 12625340

Ethical dilemmas in testing for late onset conditions: reactions to testing and perceived impact on other family members.

Elizabeth Chapman1.   

Abstract

This paper examines some of the ethical dilemmas that arise when testing for the late onset, untreatable condition of Huntington disease (HD) specifically now that technology allows us to test younger generations of the family for the mutant gene. Drawing on interview data from families with Huntington disease, the reactions to testing and perceived impact on other family members are considered. These are discussed in the light of the possible lowering of the age of test applicants. This potentially raises problems for a younger generation as they are confronted with reproductive decisions that the older generation did not have to face. It also means that individuals have the prospect of living with knowledge of a future illness for much longer.

Entities:  

Keywords:  Empirical Approach; Genetics and Reproduction

Mesh:

Year:  2002        PMID: 12625340     DOI: 10.1023/a:1016840229609

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  22 in total

1.  Parental duties and untreatable genetic conditions.

Authors:  H Clarkeburn
Journal:  J Med Ethics       Date:  2000-10       Impact factor: 2.903

Review 2.  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

3.  Psychological studies in Huntington's disease: making up the balance.

Authors:  M Duisterhof; R W Trijsburg; M F Niermeijer; R A Roos; A Tibben
Journal:  J Med Genet       Date:  2001-12       Impact factor: 6.318

4.  The social and ethical implications of changing medical technologies: the views of people living with genetic conditions.

Authors:  Elizabeth Chapman
Journal:  J Health Psychol       Date:  2002-03

5.  Prediction of psychological functioning one year after the predictive test for Huntington's disease and impact of the test result on reproductive decision making.

Authors:  M Decruyenaere; G Evers-Kiebooms; A Boogaerts; J J Cassiman; T Cloostermans; K Demyttenaere; R Dom; J P Fryns; H Van den Berghe
Journal:  J Med Genet       Date:  1996-09       Impact factor: 6.318

Review 6.  Distress in individuals facing predictive DNA testing for autosomal dominant late-onset disorders: comparing questionnaire results with in-depth interviews. Rotterdam/Leiden Genetics Workgroup.

Authors:  A C DudokdeWit; A Tibben; H J Duivenvoorden; M F Niermeijer; J Passchier; R W Trijsburg
Journal:  Am J Med Genet       Date:  1998-01-06

7.  Ten years of presymptomatic testing for Huntington's disease: the experience of the UK Huntington's Disease Prediction Consortium.

Authors:  P S Harper; C Lim; D Craufurd
Journal:  J Med Genet       Date:  2000-08       Impact factor: 6.318

8.  Predictors of psychological adjustment to genetic testing for Huntington's disease.

Authors:  A M Codori; P R Slavney; C Young; D L Miglioretti; J Brandt
Journal:  Health Psychol       Date:  1997-01       Impact factor: 4.267

Review 9.  Psychological consequences of predictive genetic testing: a systematic review.

Authors:  M Broadstock; S Michie; T Marteau
Journal:  Eur J Hum Genet       Date:  2000-10       Impact factor: 4.246

10.  International Huntington Association and the World Federation of Neurology Research Group on Huntington's Chorea. Guidelines for the molecular genetics predictive test in Huntington's disease.

Authors: 
Journal:  J Med Genet       Date:  1994-07       Impact factor: 6.318

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  5 in total

1.  The psychological dimension of informed consent: dissonance processes in genetic testing.

Authors:  Sonja Grover
Journal:  J Genet Couns       Date:  2003-10       Impact factor: 2.537

2.  (Mis)alignments in counseling for Huntington's Disease predictive testing: clients' responses to reflective frames.

Authors:  Srikant Sarangi; Kristina Bennert; Lucy Howell; Angus Clarke; Peter Harper; Jonathon Gray
Journal:  J Genet Couns       Date:  2005-02       Impact factor: 2.537

3.  What do we tell the children? Contrasting the disclosure choices of two HD families regarding risk status and predictive genetic testing.

Authors:  Kathryn Holt
Journal:  J Genet Couns       Date:  2006-08       Impact factor: 2.537

4.  Nationwide survey on predictive genetic testing for late-onset, incurable neurological diseases in Japan.

Authors:  Kunihiro Yoshida; Takahito Wada; Akihiro Sakurai; Keiko Wakui; Shu-Ichi Ikeda; Yoshimitsu Fukushima
Journal:  J Hum Genet       Date:  2007-07-05       Impact factor: 3.172

5.  Analysis of the Reasons for Non-Uptake of Predictive Testing for Huntington's Disease in Spain: A Qualitative Study.

Authors:  Jesús Rivera-Navarro; Esther Cubo; Natividad Mariscal
Journal:  J Genet Couns       Date:  2015-04-30       Impact factor: 2.537

  5 in total

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