I would explain to our visitors that I have been talking about stillbirths. We are to have a stillbirth register which the Minister is introducing, and which I welcome. I hope for a miscarriage register in the not too distant future. I am sorry to load the Minister with more work.
This would not just be a help to the parents but would be extremely important in planning to try to help with future pregnancies. We must not only look at pregnancies in a quantitative manner but in a qualitative manner also. We must value each one; we must not only focus on the outcome of the full-term pregnancy but also look at what has gone astray earlier in a pregnancy.
Funding permitting, the department of obstetrics in Trinity College Dublin is about to undertake a survey of the psychological, psychiatric, psychosocial and familial sequelae of miscarriages from the parents' point of view. Women are to be encouraged to ask questions and demand information. I hope the Department of Health will be able to become involved in this study.
We often have to return to the beginning of pregnancy. We must urgently improve the position regarding genetic counselling. Ireland is the only advanced country without medical genetic resources. They have been delayed for far too long because we have had a loss of confidence in how we would handle them.
Some years ago there was a genetic counselling service in the Rotunda Hospital but lack of finance for the laboratory work caused the consultant involved to resign. Now at last a new genetic counselling service is being set up between Our Lady's Hospital for Sick Children, Crumlin and Temple Street Children's Hospital. One consultant has been appointed but rationally we should have between five and ten consultants in Ireland to deal with the number of cases.
I have some queries about the establishment of this service. Why have two of the children's hospitals in this city been selected and the third left out? Why is the National Children's Hospital not involved? That hospital is being transferred to Tallaght and surely it deserves sessions.
I would also query the lack of involvement of the genetics department in Trinity College which has a worldwide reputation. Retinitis pigmentosa is a serious eye condition which causes blindness in children. The Trinity genetics department has been in the forefront of research in this and many other areas. We should be very proud of them.
No services have been planned for adults, who comprise 50 per cent of the cases needing genetic counselling. There is no provision for advice on multi-factorial diseases, where a genetic predisposition would be made worse by circumstances. Illnesses which involve environmental as well as genetic factors include forms of cancer, psychiatric disorders such as schizophrenia and autoimmune conditions such as asthma. Where are all these people to go for advice? I presume we do not expect them to go to the children's hospitals. The Department of Health will say this will happen in time but the time involved can be quite long. This is an urgent matter because our population is entitled to the best of information and the best help in these serious circumstances.
It appears no training has been set up for general practitioners, who will have to deal with the families at the forefront of any genetic problems which may have led to stillbirths or miscarriages. Many general practitioners may have qualified long before these advances were made and would warmly welcome training in the area.
Another problem with establishing counselling in Crumlin and Temple Street is the involvement of the Catholic Archbishop of Dublin and the religious orders. There are huge moral and ethical questions to be faced in genetics. It is essential that religious views be taken into account but I wonder how wise it is to put either the Archbishop or the religious in a position where they feel they must impose their ethics on the consultant or patient involved.
Obviously there would be an immediate difficulty in prenatal diagnosis. The maternity hospitals, where many of the stillbirths and miscarriages will happen, are not involved in the scheme and will urgently require a genetic counselling service.
There is also the major issue of gene therapy. Quite rightly the churches stress their moral and ethical role in genetics. Gene therapy, which is the treatment of cells of the body by introducing other genes, may be acceptable to the churches in somatic disease, where an ordinary cell in the liver, pancreas or lung is treated.
However I think there will be grave reservations about accepting gene therapy for germ cells. This is where a gene in sperm or an egg cell is affected by a serious disease and may be treated if and when genetic therapy becomes available. I would understand if the Archbishop did not allow any genetic service in his hospital which did not comply with the rules of the church and I would not like to see him embarrassed by having to refuse. Therefore it is important that the Department of Health urgently examines the possibility of changing the circumstances so this embarrassment could not occur.
We are now about to register the stillbirths in Ireland and I hope the numbers will get smaller. We should direct research towards this area. Moral and ethical guidelines will also be needed. We have people with expertise in medicine, genetics, theology and philosophy. Any contribution this country could make on the international stage could only be of the greatest value in the ongoing debate.