A 5-year Report of the National Center for Medical Genetics, Dublin

National Centre for Medical Genetics
Dublin, Ireland
Meeting with the Data protection office
Date Present Agenda
08/07/10 Deputy Data Commissioner
Gary Davis
Senior Compliance Officer
Ciara O'Sullivan
Andrew Green NCMG
Sally Ann Lynch NCMG
Debby Lambert NCMG
Damien Moyles NCMG
8 Engagement with HSE & DoH
Issues relating to trying to provide a safe service to the
Children’s University Hospital at Temple Street (& outreach
clinics in Cork, Galway & Limerick) & minimise risks
relating to data protection.
NCMG Management has been actively pursuing interaction with the HSE and the NHO to
address service difficulties and deliver a ‘vision’ for the provision and organisation of
Medical Genetic Services in Ireland. A meeting with the HSE in early 2011 resulted in the
creation of a ‘business plan’ to underpin this vision. This plan outlined the cost savings that
could be achieved by the HSE in undertaking genetic tests within the NCMG instead of
sending these tests abroad, plus the cost savings achievable by upgrading and implementing
efficient automation and laboratory management systems. The proposal requires a capital
investment to maximise efficiency and use of automation and an additional staff requirement.
This business plan was submitted to the HSE for consideration. A meeting was held with
HSE officials in November 2011 to discuss the possible staged implementation of this plan.
Unfortunately, the proposals are not included in the HSE’s Service Plan for 2012 and the
prospects for funding are slim.
The NCMG has concerns about HSE-funded units directly outsourcing genetic tests abroad,
both with respect to the quality of the tests provided and the lack of appropriate oversight of
such testing in Ireland.
The NCMG has submitted a series of documents to the HSE outlining proposals for the
development of genetic services and a framework in which these services can be delivered.
The NCMG also met with the HSE to clarify the role of the NCMG in the future proposed
National Paediatric Hospital. A list of those meetings, and of the documents submitted, is
outlined below.
Meetings with HSE Management
Clinical Authors: Sally Ann Lynch, Alana Ward, Rose Kelly, Andrew Green. Cytogenetics Authors: David Betts.
Molecular Authors: Christine Brady, Shirley McQuaid, David Barton, Caitrona King, Trudi McDevitt.
Admin Authors: Lisa Malone, Sally Ann Lynch, Damien Moyles.
Collated by: Christine Brady, Sally Ann Lynch, Alana Ward Authorised by: NCMG Mgt
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