Literature DB >> 15692189

Methodological considerations in the study of genetic discrimination.

Susan Treloar1, Sandra Taylor, Margaret Otlowski, Kristine Barlow-Stewart, Mark Stranger, Kellie Chenoweth.   

Abstract

The potential significance and dimensions of genetic discrimination have been described extensively in published literature, but epidemiological and verified case data are limited. Obtaining unbiased data from individuals about discrimination which has been based on erroneous or unjustifiable assumptions about their genetic predispositions poses unique challenges. Through review and discussion of research literature, we identify methodological considerations for collecting valid epidemiological data on genetic discrimination from individuals in the community; in particular, we consider issues which relate to sampling, selection and response. We identify issues to promote sound study design, with particular attention to verification of genetic discrimination, and highlight the importance of clinical and genetic knowledge of complex genotype-phenotype relationships.

Keywords:  Empirical Approach; Genetics and Reproduction

Mesh:

Year:  2004        PMID: 15692189     DOI: 10.1159/000082254

Source DB:  PubMed          Journal:  Community Genet        ISSN: 1422-2795


  9 in total

1.  Exploring the concept of genetic discrimination.

Authors:  Margaret Otlowski
Journal:  J Bioeth Inq       Date:  2005       Impact factor: 1.352

2.  In their own words: reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study.

Authors:  Janet K Williams; Cheryl Erwin; Andrew R Juhl; Michelle Mengeling; Yvonne Bombard; Michael R Hayden; Kimberly Quaid; Ira Shoulson; Sandra Taylor; Jane S Paulsen
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2010-09       Impact factor: 3.568

3.  Perception, experience, and response to genetic discrimination in Huntington disease: the international RESPOND-HD study.

Authors:  Cheryl Erwin; Janet K Williams; Andrew R Juhl; Michelle Mengeling; James A Mills; Yvonne Bombard; Michael R Hayden; Kimberly Quaid; Ira Shoulson; Sandra Taylor; Jane S Paulsen
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2010-07       Impact factor: 3.568

4.  Views of discrimination among individuals confronting genetic disease.

Authors:  Robert Klitzman
Journal:  J Genet Couns       Date:  2010-02       Impact factor: 2.537

5.  Perception, experience, and response to genetic discrimination in Huntington's disease: the Australian results of The International RESPOND-HD study.

Authors:  Anita M Y Goh; Edmond Chiu; Olga Yastrubetskaya; Cheryl Erwin; Janet K Williams; Andrew R Juhl; Jane S Paulsen
Journal:  Genet Test Mol Biomarkers       Date:  2013-01-04

6.  Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease.

Authors:  Elizabeth Penziner; Janet K Williams; Cheryl Erwin; Yvonne Bombard; Anne Wallis; Leigh J Beglinger; Michael R Hayden; Jane S Paulsen
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2008-04-05       Impact factor: 3.568

7.  Study protocol: the Australian genetics and life insurance moratorium-monitoring the effectiveness and response (A-GLIMMER) project.

Authors:  Louise Keogh; Paul Lacaze; Jane Tiller; Aideen McInerney-Leo; Andrea Belcher; Tiffany Boughtwood; Penny Gleeson; Martin Delatycki; Kristine Barlow-Stewart; Ingrid Winship; Margaret Otlowski
Journal:  BMC Med Ethics       Date:  2021-05-21       Impact factor: 2.652

8.  Should Australia Ban the Use of Genetic Test Results in Life Insurance?

Authors:  Jane Tiller; Margaret Otlowski; Paul Lacaze
Journal:  Front Public Health       Date:  2017-12-13

Review 9.  Genetic discrimination and life insurance: a systematic review of the evidence.

Authors:  Yann Joly; Ida Ngueng Feze; Jacques Simard
Journal:  BMC Med       Date:  2013-01-31       Impact factor: 8.775

  9 in total

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