The survey of people who have had a predictive genetic test for various inherited conditions aims to investigate the advantages and disadvantages of genetic test information on people’s lives and to examine cases of alleged discrimination.
Dr Sandy Taylor from UQ’s School of Social Work and Applied Human Sciences said the survey was being conducted with the help of clinical genetics services.
It is part of a larger project, funded by the Australian Research Council, investigating genetic discrimination in Australia.
“As yet, we do not have large-scale information in Australia on what people’s experiences have been after they have undertaken a predictive genetic test,” Dr Taylor said.
“The more people who fill out the questionnaire, the greater our understanding will be of the positive and negative implications of genetic testing for people in the community.
“We are hoping for a great response as this will be unique and important information for Australia.”
The overall project is being jointly undertaken by Dr Taylor, Professor Margaret Otlowski, from the University of Tasmania and Dr Kristine Barlow-Stewart from the Centre for Genetics Education in Sydney.
Increasing numbers of genetic tests have become available due to the enormous scientific advances that have been occurring in genetics. New technology can now give people precise information about whether they are at risk or not.
“Some of the positive benefits of gaining genetic information can include being able to plan for the future and to take preventive action to avoid or minimise symptoms of the condition,” Dr Taylor said.
“Disadvantages, however, can include feeling burdened by the genetic information, having problems with employment or not being able to buy insurance.”
Dr Taylor said there were many potential ethical considerations surrounding genetic testing.
“Issues have been raised about the rights to privacy of individuals regarding genetic test information, as well as their obligations to disclose this information to others,” she said.
“There are also questions about the rights of others, such as employers or insurers, to access genetic test information and the uses to which such information should be put.”
The results of the survey will be known later this year. Dr Taylor said the findings from the joint projects would be used to inform policy and law reform.