Melbourne Law School, University of Melbourne.
This project is investigating what people think about how genetic test results are stored and shared, including through networked electronic medical records, and what the law says about this. It is funded by the University of Melbourne and has ethics approval (ID 21025).
We are now recruiting people to be interviewed. Whilst we recognise that not all deafness has a genetic basis, for the parents of those in whom it does, this research may be relevant.
We are keen to speak with healthcare professionals, patients, their family members, parents of children who’ve had genetic testing, and other organisations that advocate for or provide support to patients. We are interested in their views about how genetic test results are, and should be, stored in and shared through electronic medical records. We will ask questions about who ideally should have access, in what circumstances, and whether genetic information should have different legal protection. The interview will not focus on the specific details of a person’s health.
Becoming involved in the project would mean participating in an interview of up to 60 minutes via Zoom or phone, arranged at a convenient time. By way of thanks each participant will receive a $20 gift card after the interview is completed.
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07-May-2021 1:12 PM (AEST)