This Is An Interesting Review Of Where Genomics Has Gone And Is Going In Australia.

This appeared last week:

Launched today: The big picture on genomic data in Australia

Dec 2, 2021

InGeNA today launched the whitepaper “Genomic Data in Australia” providing a big picture view of the present use of genomic data across Australia.

Industry, government, healthcare, research and health consumer groups were consulted about ways genomic data could be managed to meet community expectations around security and confidentiality.

“Genomic Data in Australia”, is the first industry-led report on data sharing and the challenges and opportunities facing governance around genomic data.

The public is becoming more knowledgeable about genomics – whether through their personal DNA and ancestry tracing, or for clinical benefit through screening, diagnosis and treatment.

InGeNA Chair David Bunker said as Australia battled the pandemic, there had been increased public visibility of genomic sequencing with daily media reports describing how public health officials use the technology to trace infection sources. He says genomics has entered the community and the public arena more prominently in the last 18 months due to the COVID-19 healthcare effort.

“Using a single system that transcends traditional state-based restrictions on data sharing while still maintaining privacy has been fundamental to the pandemic response in Australia,” he said. “It has also lifted the public awareness of genomics as a disease surveillance technique. With genomics integral to vaccine development and a vital tool for epidemiologists it has reflected positively on the science.”

Genetic Support Network of Victoria CEO Monica Ferrie said the organisation was in support of a mature discussion with all stakeholders – including health consumers – to improve the use of health data in Australia for the benefit of everyone.

“Data is the foundation on which all genomic advancement is based. The genetic, undiagnosed, rare disease and cancer community understands this,” she said. “We need to improve public trust because we want our data collected, stored, used and shared securely and in ways that protect us. We want that data used to learn more about rare diseases, to develop treatments, to create natural histories, to change the trajectory for children, adults and families, to save lives.”

David Bunker says there is a need for Australia to adopt a national approach to managing genomic data to benefit both clinical genomics and genomics research that meets community expectations confidentiality and security. “Finding a balance that meets the needs for all will require coordination across Commonwealth and state and territory governments, the community, research funders and institutions, commercial partners and private healthcare organisations,” he said.

The new report looks at the present state of genomic data in Australia by public and commercial organisations, privacy, consent and data sharing, compliance regimes, the implications of direct-to-consumer applications, and requirements for data governance and sovereignty.

Engagement with stakeholders from industry, healthcare, research and consumers indicates three consistent themes: A need for clarity in how the sector communicates, certainty about regulatory and compliance matters, and the importance of standards adoption to support the application of genomics to realise the value for people, the healthcare sector and the research community.

David Bunker said industry could collectively support best practice, public conversation and policy development through the InGeNA collaboration.

TAKE ME TO THE REPORT  (Registration is required to access the 50+ page report.)

More here:

https://digitalhealth.org.au/blog/the-big-picture-on-genomic-data-in-australia/

The report honestly makes it plain it is written from an industry perspective as is looking to grow that industry as is fair enough but I have to say I would have found it more useful if there were more regard and assessment made of the individual perspective surrounding genetic data.

That said it is an invaluable review of just where things are up-to, who is doing what with whom and who the major players are.

Clearly we are still a good way from incorporating genetic data in routing clinical practice and we are a good way from the Standards that will have is able to handle these data in a trusted and trustworthy fashion.

Privacy and security will also be major issues to be resolved to the satisfaction of all stakeholders.

We are at the beginning of a long and interesting journey with the collection, interpretation and use of these data.

What do others think?

David.