Wednesday, 10 July 2019
Genetic Testing: Motion
I thank the Acting Chairman for facilitating me. I wanted to make a short contribution. I thank and commend Senator Norris on raising this urgent matter on newborn screening and genetic testing. Earlier, I was talking to Les and Lynda Martin. I saw Cathal, Ciaran and Holly. I met them previously. I was talking to Senator Norris before the debate and said that when one meets them, one would be impressed with their dignity and sincerity when facing a very difficult situation as young parents. To have the courage, vision and tenacity to seek this debate and change is amazing. I thank them for their bravery and integrity. They have my support as Minister of State and I will work with Senator Norris and other Senators and Deputies on this matter.
I have a particular interest in this in my own portfolio, as Senator Dolan mentioned, with regard to disability. In the broader health field, I am also very involved in the issue of cystic fibrosis. Looking at member states of the European Union and around the world, the number of conditions screened by European states varies. For example, there are five in France, 19 in the Netherlands, 24 in Portugal, four in Greece, 13 in Switzerland, five in Luxembourg, two in Malta, 17 in Denmark, nine in the United Kingdom, eight in Ireland at present, 18 in the Czech Republic, 26 in Hungary, 13 in Slovakia, four in Lithuania, Italy is at the top with 42, and 12 are screened in Russia. That is the international experience of this. The Minister, Deputy Harris, said that he has written to his Italian counterpart and that he met with the head of the Italian delegation at the recent Employment, Social Policy, Health and Consumer Affairs, EPSCO, Council meeting to learn more about this initiative to test for 40 rare diseases. Officials are liaising with Italian colleagues to visit Italy and study the Italian approach and policies regarding newborn screening.
In response to Senator Mullen, departmental officials are working closely on this to study all its aspects. I met them after I met Les. They are seeking information from other European Union states about the current policy approach. Senator Mullen raises legitimate questions which have to be answered and it will be part of the debate and work that Senator Norris is involved in. Senator Mullen raised an individual case. He and the family are entitled to an answer. I will follow up on that after today's debate, having listened to Senator Mullen's concerns.
I thank Senators for the broad support for this matter and for their contributions. While I know they are not here at present, I think Les and Lynda Martin for their bravery, courage and integrity. Our hearts went out to them as a young couple with three beautiful kids who found themselves in that situation. The least that we can do is support them. I thank Senator Norris for bringing this to the Seanad.