Investigating genetic discrimination in Australia: opportunities and challenges in the early stages.
Genetic discrimination, defined as the differential treatment of individuals or their relatives on the basis of actual or presumed genetic differences, is an emerging issue of interest in academic, clinical, social and legal contexts. While its potential significance has been discussed widely, verified empirical data are scarce. Genetic discrimination is a complex phenomenon to describe and investigate, as evidenced by the recent Australian Law Reform Commission inquiry in Australia. The authors research project, which commenced in 2002, aims to document the multiple perspectives and experiences regarding genetic discrimination in Australia and inform future policy development and law reform. Data are being collected from consumers, employers, insurers and the legal system. Attempted verification of alleged accounts of genetic discrimination will be a novel feature of the research. This paper overviews the early stages of the research, including conceptual challenges and their methodological implications.
Taylor
Sandra D
SD
School of Social Work & Applied Human Sciences, The University of Queensland, St. Lucia, Q. Australia 4072. s.taylor@social.uq.edu.au
Otlowski
Margaret F
MF
Barlow-Stewart
Kristine K
KK
Treloar
Susan A
SA
Stranger
Mark
M
Chenoweth
Kellie
K
D001315:Australia; D003256:Community Participation; D003625:Data Collection; D036262:Empirical Research; D004651:Employment; D030342:Genetic Diseases, Inborn; D020022:Genetic Predisposition to Disease; D030661:Genetic Privacy; D005820:Genetic Testing; D006801:Humans; D015273:Insurance Selection Bias; D007352:Insurance, Life / Q000706:statistics & numerical data; D011287:Prejudice; D012107:Research Design