The Republic has the highest incidence of cystic fibrosis in the world, with one child in 1,500 affected and 30 new cases a year, a leading paediatrician told the all-party Oireachtas Committee on the Constitution yesterday.
Outside the State it was extremely rare to find two or more children in one family with cystic fibrosis, said Dr Brian Denham, who warned that one in 20 people in Ireland carried the gene - roughly the same proportion as in Scandinavia.
But whereas in Scandinavia abortion in such cases was the norm, many Irish families had two or three children who were victims of cystic fibrosis. "That's unique in the world and in Ireland we have more of the disease than other countries."
He was being questioned on his written submission to the hearing, in which he recommended a restricted liberal solution that would allow termination of pregnancy in such cases by "making the Offences Against the Person Act (1861) not applicable in regional hospitals, university hospitals and maternity hospitals".
A family with one child with cystic fibrosis had a one in four chance of having another child affected by the condition "for each and every pregnancy".
The effect on the families concerned was often devastating. "It is a sad fact that where two children in a family are affected by cystic fibrosis, both will do less well and their lives will be shorter than where a single child is so affected."
This was because of problems with cross-infection and contamination as well as parent exhaustion. "The amount of care that a second chronically ill child re quired inevitably detracted from the level of care given to the first."
Asked by Senator Denis O'Donovan (FF) whether he thought a "seismic shift" was occurring in Ireland "having regard to religious hang-ups", as indicated by previous witnesses, Dr Denham said he believed this was so.
When he had first come to specialise in this area, very few families with cystic fibrosis children had sought advice on antenatal diagnoses that would indicate the risk from further pregnancies. Now, half of his patients sought such ante-natal diagnosis. Rapid developments in medical science meant that neo-natal diagnostic facilities would become available within a year to 18 months that could diagnose the condition much earlier than at present. It would mean that families could plan their future from that time onwards.
Senator Kathleen O'Meara (Labour) pointed out that families in Ireland with more than one child suffering from cystic fibrosis had a tradition of caring for their disabled members.
The extended families were "wonderful", Dr Denham agreed, as was the support within the community in general. The schools were good, too, he added, but "the health board structure leaves much to be desired".
Parents were already making choices, said Senator O'Meara, who pressed the consultant on how he envisaged the restricted termination service he recommended would work.
What he envisaged, said Dr Denham, was that a decision would be taken by the parents on the advice of a medical consultant. The actual decision as to whether the procedure would ultimately take place would be determined by an ethics committee of the hospital.
"But medically, would it not mean the deliberate destruction of the foetus?" asked Senator O'Meara.
It would, he agreed.