
Dr Paul Lacaze
PhD
CHAIR, U/Monash U/Alfred, Genomics, Cohort Studies, Biobanking, Rare Disease Registries
Dr Paul Lacaze is a geneticist and Head of Public Health Genomics at Monash University. He conducts research into the role of genetic data in public and population health, through large-scale cohort studies, biobanks, clinical trials and registries. He leads genomics for the ASPREE study, Australia’s largest clinical trial and study of healthy ageing in >15,000 Australians, and works with the Monash Registries Science Unit in the area of rare disease registries. He conducts research into the ethical, legal and social issues associated with use of genomic information in society. He founded the Australian Non-Genetic Discrimination Working Group, a national body advocating for regulatory change around the use of genetic test results in life insurance. He is passionate about developing a National Plan and Alliance for Rare Disease Registries in Australia.

Clin/Prof Gareth Baynam
MBBS, DCH, FRACP, PhD, AFAIDH
Western Australian Register of Developmental Anomalies, GSWA, WADoH, Centres of Expertise, Phenotyping, Digital Health (WA)
Professor Gareth Baynam is a Head of the Western Australian Register of Developmental Anomalies (birth defects and cerebral palsy registers); Clinical Geneticist and Program Director of the Undiagnosed Diseases Program WA; Board Member of the Undiagnosed Diseases Network International; and Adjunct Genomics Policy Officer in the Western Australian Health Department. He is affiliated with the University of Western Australia; Curtin University; Murdoch University; Notre Dame University; Melbourne University; and Telethon Kids Institute. He is the Founder of an integrated suite of cross-sector and community engaging initiatives to improve the lives of people living with rare diseases including Project Y, Cliniface and Lyfe Languages. He Chairs and/or is one of the Executive or Advisories of multiple international rare diseases initiatives and has personal connections to rare diseases.

Prof Alan Bittles
AM, PhD, ScD
ECU/Murdoch, Community Genetics, Consanguinity, Intellectual Disability (WA)
Prof. Alan Bittles received his PhD from Queen’s University, Belfast, ScD from Trinity College, University of Dublin, and is a Fellow of the Royal College of Pathologists. He is Emeritus Professor of Community Genetics in the School of Medical and Health Sciences, Edith Cowan University and Adjunct Professor in the Centre for Comparative Genomics, Murdoch University, Perth, Australia. His present research centres on the impact of consanguinity and genetic sub-structure on disease gene expression, haemoglobinopathies, and intellectual and developmental disability, with projects in Australia, India and the UK. Prof. Bittles was Inaugural Chair of RVA’s SMAC from 2015-2017 and in 2017 he was appointed a Member of the Order of Australia (AM) for services in Medical Genomics.