Dr. Sally Ann Lynch:

I should first clarify that the majority of genetic testing in Ireland is not done by clinical geneticists. That is fine because there is a system called mainstreaming. When mainstreaming occurred in the NHS, major controls were put in place in terms of education and complex genetic test reports. That has not happened in Ireland. For example, when a new antenatal test was brought in by the NHS, it had approximately seven different subgroups and one major steering group before it was introduced across the NHS. That did not happen in Ireland, but the foetal medicine specialists were medically and legally obliged to offer these new tests. They were just offered without any support, or minimal support, from clinical geneticists because we do not have the capacity. There were no steering groups or subgroups, nothing. That is really where the issue is.

Many tests can be done by other specialists but they are better done in a safe, controlled environment with service level agreements with the laboratories that do them, which ends up offering cheaper tests anyway. There should also be proper consent because informed consent is meant to be taken from patients for these tests. There are significant concerns because whenever tests are brought in internationally, within Europe, all these controls will look at every single different aspect before they are offered to populations. This is so the safest test is offered in a good quality laboratory with supports when a result comes back that might be a little complex, so the patient is not left with an "Oh look, not sure what is going on here" response. Not every genetic test is clear-cut. They are not always black and white. They can be muddy shades of grey that can be very difficult to interpret.

Not everything has to be done in Ireland. Some conditions are very rare and we will probably always send some samples to a laboratory abroad that would have knowledge of a particular gene. Scientists working in laboratories also build up knowledge of their area. One very much depends on scientists in this area. Have I answered the Senator's question?