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 was important that individuals who believed 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 have reflected 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 was very interested in analysing in detail, and/or verifying, specific account(s) of unfair treatment alleged by consumers. This may have involved having a confidential interview with the researchers, sharing any documents or correspondence individuals may have with regard to their specific experiences and/or allowing further discussions of their case with the relevant third parties in question. These options were entirely voluntary. Individuals interested in considering these were provided with extra information and were required to give additional consent.

INTERESTED IN THE CONSUMER STUDY?

If you would like to make contact with the researcher responsible for the Consumer Project, please contact:

Professor Sandy Taylor
School of Sociology and Social Work
Locked Bag 1340
University of Tasmania
Launceston. Tas. 7250.
S.D.Taylor@utas.edu.au
03 6324 3528

• July 2003
• May 2005