Rare Voices Australia (RVA) is pleased to share a survey from one of our research partners seeking to understand consumer experiences with life insurance and genetic testing.
Led by experts at Monash University, this research aligns with the following actions in the National Strategic Action Plan for Rare Diseases:
Action 2.2.2: Develop policy that supports the implementation of diagnostic tools and tests.
Action 2.3.1: Ensure individuals and families known to have an increased chance of being carriers of genetic variants for rare diseases have equitable access to peri‑conception genetic testing and counselling, which can provide them with information about becoming pregnant and pregnancy.
Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER)
Many people are concerned about the use of genetic information by life insurers. Researchers from Monash University are keen to understand the views and experiences of consumers. This includes people who have had genetic testing, as well as those who are eligible but choose not to have genetic testing. The findings of this research will contribute to a report to the Australian Government regarding the current regulation of life insurers, and your participation will assist with gathering critical data on the views and experience of consumers.
Please consider completing this important survey, whatever the experience you have had with life insurance and genetic testing. You can remain anonymous if you wish.
Feel free to forward this survey link to your family members who may have had or considered having a genetic test.
If you have any issues with accessing the links, copy and paste this link into your web
At the beginning of the survey, you will find more information about the study and an explanatory statement.
For any queries regarding this research, please contact Jane Tiller, the research coordinator, on firstname.lastname@example.org