Leo Varadkar (Dublin West, Fine Gael) | Oireachtas source

I thank the Deputy for raising this issue and for giving me an opportunity to address the House on the matter.

The National Centre for Medical Genetics is the service for medical genetics at Our Lady's Children's Hospital, Crumlin. It provides services for patients and families affected by or are at risk of a genetic disorder. It has three integrated units, namely a genetics service, a cytogenetic laboratory and a molecular genetics laboratory. The University College Dublin department of medical genetics is based in the centre too. Approximately half of the work done in the centre relates to children.

There have been two recent reviews of the service. One was a review commissioned by the HSE, undertaken by Professor Dian Donnai, professor of medical genetics at the University of Manchester, and Professor Bill Newman, professor of translational genomic medicine at the same university.

A separate internal review was also commissioned by Crumlin hospital. Following this internal review, Crumlin hospital made a decision to discontinue the separate identification of the service as the National Centre for Medical Genetics. This was done in the interest of clarity on governance arrangements. It is important we are clear the genetics service is and has always been under the governance of the hospital. It was never a separate entity in its own right. Staff are employees of the hospital and the service has always been accountable to the hospital’s chief executive officer and under the governance of the hospital's board in the same manner as other clinical departments. This change does not affect the service itself and the HSE confirms there has been no reduction in the scope of the service.

The Donnai report, submitted to the HSE in May 2014, made 20 recommendations. The majority of these focused on the internal team working and clinical governance issues. The HSE advises that staff at the centre have accepted these internal recommendations. The report also recommended that a steering group should be established to develop a national genetic and genomic medicine network that reflects best international practice. This group will meet for the first time on 3 March next. Its first focus is to develop a plan for the national network. When complete, the plan will be submitted to the HSE for approval and will be considered in the context of the Estimates process for next year.

Genetics and genomic medicine have developed rapidly over the past five years and continue to do so. We must ensure these services develop in a planned way with best international practice. The work now being embarked on by the steering group is the first step in achieving this.

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