title: Methodological considerations in the study of genetic discrimination.
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.
authors.affiliation: School of Social Work and Applied Human Sciences, The University of Queensland, Brisbane, Australia. s.treloar@social.uq.edu.au
authors.forename: Susan
authors.initials: S
authors.lastname: Treloar
authors.forename: Sandra
authors.initials: S
authors.lastname: Taylor
authors.forename: Margaret
authors.initials: M
authors.lastname: Otlowski
authors.forename: Kristine
authors.initials: K
authors.lastname: Barlow-Stewart
authors.forename: Mark
authors.initials: M
authors.lastname: Stranger
authors.forename: Kellie
authors.initials: K
authors.lastname: Chenoweth
mesh_terms: D020022:Genetic Predisposition to Disease; D030661:Genetic Privacy; D005820:Genetic Testing; D005838:Genotype; D006801:Humans; D011287:Prejudice; D012107:Research Design