Judy Brewer is Chair of the Autism CRC. She is a regular speaker and writer on issues relating to families caring for family members with special needs. As a parent of a young adult with autism spectrum disorder, she has been actively involved in a number of autism and carer organisations and is a life member of Autism Spectrum Australia, convenor of the Autism Future Leaders program and founder of Autism Aspergers' Advocacy Australia. In 2013 she was a recipient of the Asia Pacific Autism Award. Alongside these organisational roles, Judy has also been appointed to a range of Federal and State Government Committees, including as Chair of the National Family Carers Voice, panel member for the 2004 Review of the Disability Carer Allowance, the 2005 Ministerial Advisory Group on the reforms to Disability Trusts, the Victorian Government Autism State Plan Working Party 2007/08 and the DEEWR Advisory Committee for the Positive Partnerships program. Before autism became such a key part of Judy's life, she worked for many years in tertiary education and political research with both State and Federal Parliamentarians. She has been a Board member or Chair of numerous organisations, including philanthropic foundations. Judy lives on a farm in north east Victoria and is the owner/manager of Grossotto Poll Herefords.

Judy will present on Day 1 in the Symposium 1 Autism CRC Panel on the Autism CRC Australian Autism Biobank.

Overview of Presentation: Autism CRC Ltd has invested in the development and management of the first Australian Autism Biobank. This Biobank will be an important research asset for the national and international community of Autism researchers. Currently there are four sites recruiting families where the child with Autism, and their parents, are invited to provide biological material (eg blood samples), as well as undergo a range of behavioural and clinical assessments. The Biobank will acquire and hold a range of data, providing a unique resource for Autism research. Blood samples, for example, allow the extraction of DNA and RNA for genetic sequencing (genotypic data), while other assessments provide detailed phenotypic data. The collection sites are in Perth (Telethon Kids Institute), Melbourne (Olga Tennison Autism Research Centre), Sydney (University of New South Wales) and Brisbane (Queensland Children's Hospital). Autism CRC has set up both a Biobank Operations Committee and Biobank Access Committee to oversight the daily operations as well as internal and external applications for access to Biobank samples and data. The samples are held at the Ventyx Wesley-St Andrews Research Institute Tissue Bank at the Wesley Hospital in Auchenflower, Brisbane. These committees have expertise from an internationally recognised biobanking expert and adult on the autism spectrum. This presentation will outline the reasons for developing such a Biobank, provide information on how researchers can apply for access to data and or samples in the Biobank and the ethical considerations undertaken to ensure donor privacy, confidentiality and appropriate custodianship of these valuable samples.

Also presenting in this panel:
Prof Cheryl Dissanayake
Dr Josephine Barbaro