IVF test for deformities raises legal concerns

MANY Irish women having babies by IVF are not being told they can have a test to identify if the embryo has a fatal deformity, according to a European-wide report.

Preimplantation Genetic Diagnosis is banned in Ireland but doctors in IVF clinics say they are not sure it is legal to give information about the service to their patients and do not do so for fear of prosecution.

The study found several hundred couples a year have the test carried out abroad, mainly in Belgium, usually after researching clinics on the internet. But since public funding was withdrawn two years ago, only those who can afford to travel and pay for it are able to have the test. It is carried out on a cell taken from the embryo three days after the egg is fertilised and before it is implanted in the womb.

“Some patients who might benefit from PGD are not being offered this option because of unfamiliarity with the procedure on the part of some practitioners and/or because of the difficulty of gaining access to the service,” said the study carried out by European Commission scientists.

“One clinician suggested the service is made available to patients ‘who have persisted in requesting it’.”

Women at high risk include those over 35-40 who have a 50% chance of having a deformed foetus, which in most cases will not continue to term, forcing her to undergo a new IVF process or to give up on having a child. When referrals are made it is usually to a clinic in Brussels and sometimes to London.

A total of 20 have been made through the country’s only genetic centre, the National Centre for Medical Genetics in Our Lady’s Children’s Hospital in Dublin. But there is a long waiting list for testing. Tests sent to Britain sometimes return sooner than those sent to the genetics centre in Ireland.

The majority of tests, several hundred a year, are carried out by couples going privately to labs abroad. However, this process is forcing Irish doctors into a bizarre referral process, said the report.

One of the report’s authors James Lawford Davies, who works with Newcastle University’s human genetics research team in Britain, said: “In Ireland, doctors’ fears about potential prosecution has led to a peculiar ‘inverted referral’ process whereby patients must contact PGD clinics in other countries themselves and these clinics then approach the Irish clinic for the relevant patient information.

“In situations where patients are left to identify clinics themselves, via the internet or other means, they are deprived of the benefit of medical advice, counselling and support at a vulnerable time.”

Down’s syndrome, cystic fibrosis and potential diseases such as cancers can be identified by the test.

The Commission on Assisted Human Reproduction two years ago recommended PGD be allowed in Ireland and Health Minister Mary Harney asked her department to begin work on legislation. A statement from the department said it is waiting for the report of the Joint Oireachtas Committee on Health and Children and on the Supreme Court decision on the Roche vs Roche case where the father was allowed veto his ex-wife’s wish to have a baby using their frozen embryo.

PGD is also banned in Germany and Switzerland. The report said guidelines for counselling of patients who opt to screen their embryos created by IVF is urgently needed.