Australian Genomics

The National Consultation on the Genomics Health Futures Mission refreshed Roadmap and Implementation Plan closes tomorrow. Submit your response here: https://lnkd.in/d5DhmN3r

Great opportunity to work with the inimitable Greg Pratt progressing work on the Integrated Genetic HealthCare project to improve access to quality genetic services for Aboriginal and Torres Strait Islander people...

Be at the genomics conversation on Thursday 24 October at 9am (AEDT) for an exciting #DNAdialogue seminar! Dr Catalina Lopez-Correa, Chief Scientific Officer at Genome Canada will present “Making genomics equitable and accessible around the globe”. Genomics has transformed healthcare and science, offering groundbreaking solutions to some of the world’s toughest challenges. Yet, to unlock its full potential, we must address significant gaps in diversity and inclusion, ensuring equitable access and representation for all communities worldwide. Learn more & register here: https://lnkd.in/gMFYvtiP #seminarseries #genomics #genomicresearch

Registration is now open for the Australian Functional Genomics Network (AFGN) Symposium 2024! The Symposium will take place on the 28 & 29 November at the Brain Centre Auditorium, University of Melbourne. Over the two days, the symposium will bring together the clinical community involved in disease gene discovery and Australian research groups using a diverse array of disease model systems for the characterisation of genetic variants. Register now and learn more: https://lnkd.in/g2HiT8kE Tessa Mattiske Ebony Matotek #AFGN #functionalgenomics #genomics #symposium

🌟 Congratulations to everyone involved in the GA4GH 12th Plenary in Australia! It was wonderful hosting so many of our international partners down under. 🌏

Fascinating Global Alliance for Genomics and Health evening talk on AI in genomics and its boundless future, featuring Enrico Coiera, Daniel MacArthur, Jeannie Marie Paterson, curated by Bianca Nogrady. When it comes to First Nations data, Professor Daniel MacArthur argues that AI doesn’t fundamentally alter the need for robust governance and protections. While AI may promote sharing more data for better performance, existing safeguards—such as transparency, consent, and community control—remain essential. Researchers must be cautious about sharing First Nations data with AI systems, ensuring its ethical use and alignment with original consent. MacArthur underscores the importance of established ethical committees and governance frameworks, such as those referenced by ANU NCIG (National Centre for Indigenous Genomics) Director, Professor Alex Brown, to mitigate risks. These frameworks ensure First Nations genomic data is respected, with sovereignty maintained and no sharing without clear, informed consent. However, work remains in improving consent processes and data management, especially in the AI context. While the research community approaches these issues conservatively, ongoing efforts are needed to further strengthen protections for First Nations data.

Join the Genomics Education Network Australasia (#GENA) September meet-up on Wednesday 25 September 2024 at 11am (AEST). Hear about genomics education projects underway in Australasia, find out about new tools and resources supporting genomics education and meet others working in the field. A/Prof Aideen McInerney-Leo, PhD will present “Efficacy and impact of the different training modalities for dermatologists to offer melanoma genetic testing”. The Melbourne Genomics Health Alliance team (Amy Clarke, Dr Fran Maher, Amelia Rahardja and A/Prof Amy Nisselle) will present “Genomics resources for non-genetic health professionals: an interdisciplinary approach to co-design”. Learn more and register here: https://lnkd.in/gHqR-MDx Bronwyn Terrill #genomics #education #seminar

Today is Childhood Dementia Day: a day when we make childhood dementia impossible to ignore. Childhood dementia may be more common than you realise. It’s caused by over 100 genetic conditions that damage the brain and nervous system. One in every 2,900 babies is born with a childhood dementia condition. Half will die before the age of 10, most won’t live to adulthood, and all will die prematurely. There’s been so little attention, research or action directed to these kids, there’s been no improvement in survival. Ever. And the more evidence we gather, the more we’re learning that kids and families don’t have access to the care and support they need. It’s time for change. It’s time to make childhood dementia impossible to ignore. #ChildhoodDementia #ChildhoodDementiaDay #DementiaAwareness #AwarenessMatters

A complete ban on the use genetic test results in life insurance is now likely, with the Federal Government announcing it will introduce legislation to enact the ban. Australian Genomics welcomed the decision after calling for a total ban earlier this year to protect consumers, remove the fear of genetic discrimination and ensure government oversight of insurers’ compliance. In a joint submission with the Australian Alliance for Indigenous Genomics it also warned against compounding inequities around access to genomic healthcare and research. “This is a critical breakthrough and a hard-won fight to prevent genetic discrimination deterring people from having genetic testing that could save their lives and contribute to research,” Australian Genomics Managing Director Tiffany Boughtwood said. A Government review on the issue earlier this year received more than 1000 submissions, with 97 per cent of those supporting a total ban. Assistant Treasurer Stephen Jones said in a statement that no Australian should be discouraged from undertaking testing out of fear it may impact their ability to get life insurance. View the full statement here: https://lnkd.in/gUymx2FH Consumers will still be able to choose to disclose a favourable genetic test result to insurers. The ban will not be subject to financial limits, caps or exceptions, and will be reviewed after five years. In 2023 Monash University’s Dr Jane Tiller and Professor Paul Lacaze released a report from a three-year study into the existing life insurance moratorium. The report recommended replacing industry self-regulation with Federal Government regulation and oversight. The report can be accessed here: https://lnkd.in/gRYwbEWj

Great news that the Federal Government wants a complete ban on the use of genetic test results in life insurance underwriting. After a hard-fought campaign and more than 1000 submissions the Government will draft legislation for the ban. Congratulations to Monash University’s Jane Tiller (PhD) and Paul Lacaze for their outstanding research and drive on the issue. Read the media release here: https://lnkd.in/gUymx2FH