Genetic Alliance wants your thoughts

Posted - May 2016 in Living with HSP - Management & Treatment News

Survey on gene testing

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Dear HSP community members,

Genetic Alliance Australia (GA) invites you to take a survey that is the first of its kind in Australia.

The project launched by GA is called “Australian patients and families’ perspectives on genome sequencing”. The aim of the project is to produce an “Australian Patient Charter on Genome Sequencing”. This will outline the views and opinions of patients and families regarding genome sequencing in the healthcare system. This will become an important reference guideline for policy and decision-makers when incorporating genome sequencing into the Australian healthcare system.

The project will involve an anonymous online survey for individuals and families affected by genetic conditions, and aims to gather their views and opinions on the use of genome sequencing in a clinical setting. The online survey was launched on 6th May 2016 and will run for approximately two months. By participating in the survey you will have access to a video “Whole Genome Sequencing & You” which will serve as an education resource. There are various ways to access the survey:

The input from families and individuals will be highly valued and appreciated, and will ensure that GA has surveyed the many diverse genetic and rare patient groups across Australia.

The project will also involve a focus group towards the end of the June 2016 to further explore the answers provided in the survey and to gather more robust views. GA welcomes your input to provide any questions pertinent for us to ask the focus group participants.

If you have any questions contact the Genetic Alliance on 02 9295 8359 or email [email protected].

I would personally like to take this opportunity to thank you for your support in this Australia-wide project.

Kind regards,

Dianne Petrie OAM 

Executive Director

Genetic Alliance Australia

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