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Outcome Statement - First Meeting of the Genetics Working Party, 14 December 2011

A statement of outcomes from the first meeting of the Genetics Working Party

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The first meeting of the Genetics Working Party was held on Wednesday, 14 December 2011 in Sydney. The meeting was attended by representatives of the Royal College of Pathologists of Australasia, the National Coalition of Public Pathologists, and the Australian Association of Pathology Practices as signatories to the Pathology Funding Agreement, as well as representatives of the Human Genetics Society of Australasia, The Consumers’ Health Forum, and NSW, Victoria and the ACT. See below for a full list of members and participants.

Terms of Reference

Members discussed the draft Terms of Reference, and agreed that as the scope of issues to be considered by the GWP has not yet been finalised, further consideration of the ToR will be deferred until the next meeting. Similarly, the workplan and project scope for the GWP will be redrafted for consideration at the next meeting.

Members endorsed the out-of-session protocol, noting that some out-of-session work will be required due to the short reporting timeframe for this committee.

Members discussed a draft Stakeholder Engagement Strategy, which was generally agreed as an appropriate way forward, with some changes suggested. The draft includes a list of stakeholders, not already represented on the GWP, who will be consulted as work on the new national approach to genetic testing services progresses, in the interests of an open and inclusive consultation process. The Stakeholder Engagement Strategy will be made publicly available on the Department’s website once it has been endorsed by the GWP.

Information to date

Members discussed a number of position papers which formed part of the meeting agenda. Papers were included from the RCPA and the AAPP, as well as work previously undertaken by the Medical Benefits Review Task Group. Members also considered the issues of preimplantation genetic diagnosis, and the definition of a person for the purposes of Medicare.

Brainstorming

Members participated in a brainstorming session during the afternoon, with small groups considering particular test groupings (high volume; high complexity; pharmacogenetic etc.) against the issues of: current positives/enablers/systems that work well; current problems/systems that don’t work; barriers to change; what a future framework might look like; and what a future framework needs to consider. This session helped to further defined those issues which need to be considered further, and will help inform the project scope and workplan of the GWP (as noted above).

One key issue which was discussed in detail was that of the importance of obtaining data to inform the current situation in Australia. The Secretariat has been tasked with engaging further with key stakeholders on this issue, noting that the RCPA had previously completed a survey on genetic testing in 2006.

Consultancy

Members were provided with an update on the consultancy for the development and implementation of a national framework for genetic testing, noting that the tender for this consultancy closed one week prior to the meeting. Members will be informed of the outcome of the tender process out-of-session.

Next meeting

The next meeting of the Genetics Working Party will be held on Thursday 15 March 2012, in Sydney.

Attendees and Apologies

Dr Richard Bartlett (Chair), Medical Benefits Division, Dept Health and Ageing
Professor Katherine McGrath, Australian Association of Pathology Practices
Dr Stephen Fairy (proxy for Dr Keith Byron), Australian Association of Pathology Practices
Dr Cynthia Roberts, Australian Association of Pathology Practices
Dr Graeme Suthers, Royal College of Pathologists of Australasia
Mr Mike Ralston, Royal College of Pathologists of Australasia
Dr Bronwen Ross, Royal College of Pathologists of Australasia
Dr Melody Caramins, National Coalition of Public Pathology
Prof Rodney Scott, National Coalition of Public Pathology
Prof David Ravine, National Coalition of Public Pathology
Prof Leslie Burnett, National Coalition of Public Pathology
Dr Glenn Francis, National Coalition of Public Pathology
Dr Cliff Meldrum, National Coalition of Public Pathology
Dr Elizabeth Algar, National Coalition of Public Pathology
Ms Sharon Van der Laan, Consumers’ Health Forum
A/Prof Julie McGaughran, Human Genetics Society of Australasia
Dr Kevin Carpenter, Human Genetics Society of Australasia
Prof Julia Potter, ACT Pathology and ANU Medical School
Dr Paul Fennessy, Health Technology Program, Department of Health, Victoria
A/Prof Roger Wilson, NSW Health
Ms Fifine Cahill, Diagnostic Services Branch, MBD, Dept Health and Ageing
Ms Kim Williams, Pathology Outlays Section, MBD, Dept Health and Ageing
Ms Nadine Porter, Secretariat

Apologies:
Dr Keith Byron, Australian Association of Pathology Practices.
Dr James Harraway, Australian Association of Pathology Practices.
Dr Lynda Campbell, Catholic Health Australia.
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