SLIDE 7 6/11/2020 7
Aims: a) articulate the ethical, social and legal issues of genomics for people with disabilities and their families, and, b) implement a collaborative, co-design model to inform the design and conduct of human genetic research as well as genomics policy, research, education and practices.
“I am a man with Down syndrome and my life is worth living” – Frank Stephens Editing the gene code will make us happier, but less human – Jamie Walker, The Australian, 31/12/16
Pr Proje ject Stages and nd Ac Activities
Stage 1: Discovery and Engagement
- Development of a green paper
- Large scale survey across stakeholder groups
Stage 2: Collaboration and Design
- Generation of shared knowledge (Delphi method)
- National roundtables
Stage 3: Capability Development
- Development of “white” paper
- Guidelines, tools and other resources, including best practice
standards
k.Nankervis@uq.edu.au
Education Guidelines for DSi
Associate Professor Rhonda Faragher
r.faragher@uq.edu.au
How the guidelines were developed
- DSi invited established experts in
the field to co-author the guidelines.
- The writing team met to establish
a process and locate the guidelines within the Policy <-> Research <-> Practice triangle.
- DSi invited international
stakeholders to provide feedback
- n this process work in order to
make the information the guidelines contain as globally useful and relevant as possible
- The result is documented in the
Background section.
r.faragher@uq.edu.au
How the guidelines were developed
- Draft Guidelines were presented to a
senior representative of UNICEF at the World Down Syndrome Day conference at the UN in 2019.
- Stakeholder feedback sought
- Approximately 200 DSi Representative
and Affiliate Organisations from approximately 120 countries.
- Other international and national
disability or education establishments, education professionals, experts and researchers
- 35 DSi registered stakeholders
provided feedback, including a representative from each of UNICEF, UNESCO and Inclusion International.
r.faragher@uq.edu.au
Feedback
The guide is very complete and covers the main themes of inclusion. It's clear, straightforward and mostly purposeful. The basis for the UNCRPD is fundamental. Situating all topics in scientific research conveys security and expands the possibility of deepening the
- subject. Anyone who reads it and puts it into
practice can learn, make changes, and qualify its inclusive process. The guidelines are accessible and provide references to research that can be further
across a document that is as concise and thorough at the same time.
As a UN Organization, the
guidelines will be very useful. They could be used within countries to review/develop their national education policies in a more inclusive way. The up to date referencing will be particularly useful. The guidelines document should be used in teacher training; we should aim for this, targeting Universities and training networks.
The guidelines will help 'guide' at all levels, from top level (policy, national training) to implementation at the classroom level.
r.faragher@uq.edu.au
