PROJECT A: CONSUMER PROJECT

Consumers
“Consumers” are defined as individuals and/or their relatives who, on the basis of a family history and/or a genetic test, are assumed, or known, to have genetic risks or genetic predispositions to specific conditions, disorders or diseases.

Aims of Consumer Project:

• to explore and document the experiences of consumers with family histories and/or genetic risks or genetic predispositions in a range of social contexts
• to examine their understanding of the concept of genetic discrimination, whether they have had any experiences in regard to it and if so, the nature and extent of those experiences.

It is important in this research that individuals who believe they may have been unfairly treated because of their family history, genetic risk or genetic predisposition did not have symptoms of the genetic condition in question at the time of the alleged unfair treatment, as this may reflect discrimination on the basis of a disability, rather than a genetic risk or a genetic predisposition.

Methods:

• A large survey of individuals who had undertaken a predictive genetic test in the last 5 years was conducted.
• The consumer survey questionnaire was also available to members of the community and genetic support groups.
• Confidential interviews with the research team were arranged if required.

Verification: As well as administering the survey questionnaire, the GDP research team is very interested in analysing in detail, and/or verifying, specific account(s) of unfair treatment alleged by consumers. This may mean having a confidential interview with the researchers, sharing any documents or correspondence individuals may have with regard to their specific experiences or allowing further discussions of their case with the relevant third parties in question. These options are entirely voluntary. Individuals interested in considering these will be provided with extra information and will be required to give separate consent.

INTERESTED IN THE CONSUMER STUDY?
If you would like to make contact with the researcher responsible for conducting the Consumer Study, please contact Associate Professor Sandy Taylor, Chief Investigator:

• by emailing s.taylor@cqu.edu.au

• by writing to her at the School of Social Work & Welfare Studies, Central Queensland University, Rockhampton. QLD. 4702.

• July 2003
• May 2005