Literature DB >> 21264501

Ethical dilemmas in genetic testing: examples from the Cuban program for predictive diagnosis of hereditary ataxias.

Tania Cruz Mariño1, Rubén Reynaldo Armiñán, Humberto Jorge Cedeño, José Miguel Laffita Mesa, Yanetza González Zaldivar, Raúl Aguilera Rodríguez, Miguel Velázquez Santos, Luis Enrique Almaguer Mederos, Milena Paneque Herrera, Luis Velázquez Pérez.   

Abstract

Predictive testing protocols are intended to help patients affected with hereditary conditions understand their condition and make informed reproductive choices. However, predictive protocols may expose clinicians and patients to ethical dilemmas that interfere with genetic counseling and the decision making process. This paper describes ethical dilemmas in a series of five cases involving predictive testing for hereditary ataxias in Cuba. The examples herein present evidence of the deeply controversial situations faced by both individuals at risk and professionals in charge of these predictive studies, suggesting a need for expanded guidelines to address such complexities.

Entities:  

Mesh:

Substances:

Year:  2011        PMID: 21264501     DOI: 10.1007/s10897-010-9347-4

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


  28 in total

1.  Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information.

Authors:  N Hallowell; C Foster; R Eeles; A Ardern-Jones; V Murday; M Watson
Journal:  J Med Ethics       Date:  2003-04       Impact factor: 2.903

Review 2.  Psychological aspects of pre-symptomatic testing for Machado-Joseph disease and familial amyloid polyneuropathy type I.

Authors:  L Rolim; A Leite; S Lêdo; M Paneque; J Sequeiros; M Fleming
Journal:  Clin Genet       Date:  2006-04       Impact factor: 4.438

3.  The incidental discovery of nonpaternity through genetic carrier screening: an exploration of lay attitudes.

Authors:  Lyn Turney
Journal:  Qual Health Res       Date:  2005-05

4.  Genetic counseling: legal issues surrounding nondisclosure of paternity.

Authors:  Kelly Brown
Journal:  J Leg Med       Date:  2008 Jul-Sep

5.  Incidental discovery of nonpaternity during prenatal testing of genetic disease.

Authors:  Dongzhi Li; Can Liao
Journal:  Fetal Diagn Ther       Date:  2008-05-27       Impact factor: 2.587

6.  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

7.  Paternity testing requested by private parties in Italy: some ethical considerations.

Authors:  L Caenazzo; A Comacchio; P Tozzo; D Rodriguez; P Benciolini
Journal:  J Med Ethics       Date:  2008-10       Impact factor: 2.903

Review 8.  Friedreich ataxia: the clinical picture.

Authors:  Massimo Pandolfo
Journal:  J Neurol       Date:  2009-03       Impact factor: 4.849

9.  Role of the disease in the psychological impact of pre-symptomatic testing for SCA2 and FAP ATTRV30M: Experience with the disease, kinship and gender of the transmitting parent.

Authors:  Milena Paneque; Carolina Lemos; Alda Sousa; Luis Velázquez; Manuela Fleming; Jorge Sequeiros
Journal:  J Genet Couns       Date:  2009-10       Impact factor: 2.537

10.  Ethical and social issues in presymptomatic testing for Huntington's disease: a European Community collaborative study. European Community Huntington's Disease Collaborative Study Group.

Authors: 
Journal:  J Med Genet       Date:  1993-12       Impact factor: 6.318

View more
  5 in total

1.  Genetics Health Professionals' Views on Quality of Genetic Counseling Service Provision for Presymptomatic Testing in Late-Onset Neurological Diseases in Portugal: Core Components, Specific Challenges and the Need for Assessment Tools.

Authors:  M Paneque; Á Mendes; L Guimarães; J Sequeiros; H Skirton
Journal:  J Genet Couns       Date:  2014-11-04       Impact factor: 2.537

2.  What counts as effective genetic counselling for presymptomatic testing in late-onset disorders? A study of the consultand's perspective.

Authors:  Lídia Guimarães; Jorge Sequeiros; Heather Skirton; Milena Paneque
Journal:  J Genet Couns       Date:  2013-01-07       Impact factor: 2.537

Review 3.  A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases.

Authors:  Jane S Paulsen; Martha Nance; Ji-In Kim; Noelle E Carlozzi; Peter K Panegyres; Cheryl Erwin; Anita Goh; Elizabeth McCusker; Janet K Williams
Journal:  Prog Neurobiol       Date:  2013-09-11       Impact factor: 11.685

4.  Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: a systematic review.

Authors:  Adrina Zhong; Benedict Darren; Bethina Loiseau; Li Qun Betty He; Trillium Chang; Jessica Hill; Helen Dimaras
Journal:  Genet Med       Date:  2018-08-03       Impact factor: 8.822

5.  Bioethical issues of preventing hereditary diseases with late onset in the Sakha Republic (Yakutia).

Authors:  Sardana K Kononova; Oksana G Sidorova; Sardana A Fedorova; Fedor A Platonov; Vera L Izhevskaya; Elza K Khusnutdinova
Journal:  Int J Circumpolar Health       Date:  2014-07-24       Impact factor: 1.228

  5 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.