Director's Letter - October 2022

Jackie Leach Scully | 31 Oct 2022

Every month when the time rolls round for me to write my introduction to the Newsletter, it’s often hard to remember what has happened in the preceding four weeks. Even at the quieter times of the year the UNSW Disability Innovation Institute team seems to be constantly active, and this October has been no exception. 

As you’ll see later on, we have two pieces of major grant news to announce. First, the Institute is part of a successful application to the National Health and Medical Research Council (NHMRC). The GeneEQUAL project will receive $1.6 million to develop resources for people with intellectual disabilities and their families, and genomic health professionals, that will help them make more informed choices about genetic testing and how to benefit from obtaining a genetic diagnosis. The project is co-led by Dr Elizabeth Emma Palmer from UNSW Medicine & Health, with whom the Institute has worked for some time. Importantly, GeneEQUAL will make use of the Institute’s expertise in disability-inclusive research.

In a second success, I am part of another NHMRC-funded project LINEAGE that aims to examine the ethical, legal and social issues in the development and use of genomic datasets, and ultimately contributing to a national governance framework for genomic data. This project has been awarded almost $5 million over 5 years and involves a large number of researchers across Australia. As always, my focus will be on the impact of these new technological capabilities on people with disabilities.

With these and other projects, the Institute is consolidating its position as a leader in ensuring the ethical, disability-inclusive use of genomic medicine.

Because of the summer break the Institute generally issues a larger than usual, combined end-of-the-year Newsletter before picking up the threads in February. So look out for our next bumper edition in mid-December!