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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
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