Five per cent of the population is affected by genetic disorders and may require testing or counselling in relation to conditions that may be passed on in the family. These may involve cancer, cystic fibrosis, Huntington’s disease or even learning disabilities.
In Ireland, this service is provided by the National Centre for Medical Genetics, which has seen 160,000 patients and their families since it was set up in 1994. These patients have benefited from the huge strides made in genetics research, which have enabled the earlier detection of inherited disorders for a widening range of conditions. Preventive medicine of this kind saves millions of euros for the health service down the line.
The centre's budget has been cut in recent years and waiting times for patients can be up to two years. Ireland has the lowest level of genetic staff in Europe, international figures show, and management at the centre has been campaigning for extra resources for years, to no avail.
While attempting to provide a national service for children and adults alike, the centre is under the governance of Our Lady’s Children’s Hospital in Crumlin, which now wants to bring it in a tighter embrace. This raises the question of what will happen to the centre’s adult patients and those from outside the Dublin region.
"It's absurd this service is under the governance of one hospital when it should be operating independently," says Philip Watt, chairman of the Medical Research Charities Group, an umbrella group for 36 patient groups. Or, as one member of staff put it: "We're a square peg in a round hole".
The Health Service Executive insisted last night there had been no change in the governance structure of the centre. “A decision has been made by the hospital to discontinue the separate identification of the service as the National Centre for Medical Genetics in order to be clear that it has no separate governance or responsibility outside of the hospital.”
The last year has been particularly turbulent for the centre. An external report found relationships between senior staff were “dysfunctional”, described governance as an area of concern and suggested a new director be appointed. It also said the centre was understaffed and under-resourced in international terms.The HSE envisages the service as a network of counsellors in different hospitals linking with colleagues in Crumlin.
There is talk of establishing a national genetics and genomic medicine network within the HSE but as yet, there is no national lead for genetics as there is for many medical conditions. Nor is there any prospect of shorter waiting lists.
In the meantime, genetics, an area where sensitive ethical issues often arise, will become a department in Crumlin, a hospital with a Catholic ethos and whose chairman is the Archbishop of Dublin.
