Denis Naughten (Roscommon-Galway, Independent) | Oireachtas source

Yesterday, the Minister for Public Expenditure, National Development Plan Delivery and Reform said education was one component in ensuring a thriving population, as is feeling supported in times of ill-health. As many Members know, I have been consistently raising questions about the planned relocation of the children's hospital in Crumlin to the national children's hospital site, bizarrely without the transfer of the genomics lab. The genomics service is vital for children with rare diseases, 30% of whom will never celebrate their fifth birthday. A diagnosis is vital for them if they are to source a treatment to prolong their far too short lives. Sadly, most of the genetic test samples taken here leave the country and go to the United States, the United Kingdom, France, Spain, Germany and Finland for genomic testing.

I have raised in the House a specific concern about how the genetic information gleaned from these samples is being handled and managed. We send the genetic sample away through Crumlin hospital or St. James's Hospital. Usually we get the results back and the genetic data remains in those jurisdictions, which are outside GDPR and the proposed European health data space. We have no idea how this data is being used for secondary purposes. The only way to overcome this is to establish a centralised laboratory for genetic testing in Ireland. There is private capacity available here to ensure the tests are at least carried out here. We have an opportunity to bring all of the samples back onto the island of Ireland and control the management of those samples.

On a couple of occasions when I highlighted this issue, I asked whether we had learned nothing from the cervical screening scandal. Unfortunately, I will now draw the attention of the House to one such example. Genetic tests are complex. They require specialised staff to determine the appropriate test selection, depending on the particular circumstances. In the Republic of Ireland there are numerous individual dispatch laboratories.

Right across the country, different laboratories in different hospitals send their tests abroad to commercially accredited laboratories in different parts of the world without any appropriate genetic training as to determine the specialised location or what specific tests should be carried out. The dispatch from these multiple laboratories creates an increased clinical risk. A risk assessment was submitted to the HSE in 2010 identifying risks, but no action has been taken. Specialised services are centralised in the north of Ireland with appropriate controls to optimise patient safety but, sadly, that does not happen here.

What is the impact of this? I will give the Minister of State the case of a family who suffered numerous antenatal losses. Their second pregnancy, a boy, died in 2020. He had a 22q11 genetic deletion identified after his passing by a particular laboratory. The parents' samples were sent to a different laboratory and the tests showed normal parental results, and the family were reassured that this was not a hereditary condition – it was just one of those things that had happened. The couple had a recurrence in 2023 in their ninth pregnancy and subsequent testing revealed that the same genetic deletion was in one of the parents, which had been missed in the first set of tests, and the young man who was born at the time was confirmed as having the 22q11 deletion syndrome. One of the parent parents told me:

On a personal level, our family has experienced profound loss – nine pregnancies with only one surviving child. We know a central lab would have made a difference in our situation. Our son Oisín, born in June 2023, had medical complexities similar to those of our son Ross Junior, who ... [was born with] 22q [deletion] and passed away due to complications secondary to ... [that deletion]. Despite reassurances from medical professions throughout the pregnancy, our fear of planning another funeral was very real.

[...]

So many avoidable losses [in this family] stemmed from that misdiagnosis. Work missed, relationships breaking down, physical decline, weakening mental health, emotional turmoil, social isolation and spiritual disconnect.

These are the consequences of not having the support of a central genomics laboratory in this country like they have north of the Border. It is impossible to summarise the devastation suffered by this family. This has consequences for the relatives who now have to go and have an analysis carried out. How can they trust the results they are going to get back when those samples are sent all over the world from different hospitals without any policy control standards whatsoever? Errors in genetic testing can take years to be recognised, as is the case in this situation, and require specialist knowledge due to the significant number of different stakeholders that are involved, leading to mistakes. The current system within the HSE poses a significant clinical risk as diagnostic stewardship is lacking centrally. Multiple hospitals are dispatching samples to multiple different foreign laboratories, some without the standards we should and would have here in Ireland. The audit trail is poor and familial sample tracing is limited. We do not even send the samples from the child along with the samples from the parents to the same laboratories. They can be on different continents where they are being tested at the moment and sadly, in this case, with a tragic and unfortunate outcome for this family, but also many more families around the country. We need a centralised genetic testing laboratory. That is urgently required in Ireland to deal with discrepancies and anomalies like the one I just outlined. It is not good enough that families are seeing their children's samples and their samples sent to different continents and laboratories, and that every laboratory in this country is sending them out of this jurisdiction without any standard protocol whatsoever when we could actually have them all processed in a single laboratory in Ireland, hopefully under the control of the State in the medium term. In the short term, however, there is a private laboratory that could carry that out. I urge the Government to deal with this as an issue of the utmost priority.

We all know that yesterday was "The Late Late Show" budget with something for everyone in the audience and everyone in the country. The big regret I have regarding what was announced yesterday was that there was no big vision. We have a huge opportunity in terms of unlocking the potential, which is the Ardnacrusha of the sea. When this State was founded, our forefathers took a big gamble at the time and established the power station at Ardnacrusha. They did not even know what they were going to do with all the electricity at the time. In fact, the criticism in this House at the time was that all this electricity would go to waste. We have the very same opportunity today with 220 million acres of maritime resource off our coast, particularly the west coast, with 70,000 MW of offshore renewable electricity to be tapped into. However, that requires a commitment and investment from the Government. Doing that in a strategic manner can deliver a constant, cheap, clean electricity supply to every single family in this country. It can provide reliable zero-carbon electricity at a fixed price to every single business and industry in this country. We could develop data centres that can secure not only the existing investment in this country but exploit the potential of both quantum computing and artificial intelligence.

I was at the United Nations at last week and at the science summit that runs alongside it. We had a presentation regarding the potential of artificial intelligence. We were told that the single biggest limiting factor and ceiling that would be created in the utilisation of artificial intelligence is the lack of basic infrastructure in terms of electricity and connectivity. Having the connectivity and electricity are vital to exploit the full potential of artificial intelligence and the emerging technology of quantum computing. We have the connectivity in this country within the island and off the island, both to North America and into continental Europe. Our big restricting factor at the moment is the issue of electricity and yet we have enough electricity off our coast not only to meet the existing needs of every single person and every single industry on this island, but to meet the needs of France and Austria as well. That is the scale of the capacity we have off our island.

On top of that, we have the opportunity to create a sovereign wealth fund based on royalties that can be equivalent to those of Norway, providing certainty for our pensions into the 2200s. There is huge opportunity, but it does require significant investment and upgrading of our infrastructure, including our ports. The announcement yesterday with regard to Port of Cork is very welcome with funding coming from the Ireland Strategic Investment Fund, ISIF, but this funding should be coming from the investment we are setting aside to invest in technology in other countries in the world instead of investing it in our offshore renewable potential here. I proposed previously that we should establish a renewable energy development authority similar to the Industrial Development Authority, IDA, which would unlock the full potential of the opportunity off our coasts and have responsibilities ranging from research and development right through to supply chain and commercial deployment of renewable energy, ensuring that Ireland becomes the global leader in clean energy and has the ability to export that.

To do that, we need to see investment in ports like Foynes on the Shannon Estuary and others elsewhere. We need to see our offshore areas, particularly off the west coast, fully mapped. A decision has been taken by the Minister, Deputy Ryan, to long-finger that mapping and instead prioritise the mapping of the south-east coast, which is to the detriment of the west coast. Significantly less mapping is required off the west coast because we are talking about floating turbines that are not fixed to the bottom. The analysis could be carried out in tandem if the Government were committed to doing so.

We need to see significant grid investment. We have an indigenous company, called SuperNode, that is willing to exploit the technology it is developing to not only bring renewable electricity from the west coast onshore, but also to export it directly into the European market.

To do all of this, we need to establish an offshore tsar, someone who is directly responsible to An Taoiseach and works full-time in Government Buildings to make it a reality. We only got the Maritime Area Planning Act over the line because I put pressure on at Cabinet to ensure that it fell under the direct responsibility of the Taoiseach rather than the five Departments that were dealing with it at the time. We now need to take the example of the highly successful broadband and mobile phone task force and appoint an offshore tsar who would lead all of the Government agencies and Departments and set them a clear direction and agenda. The difficulty is that there are too many Departments in charge, the result of which is that no one is in charge. We are not making this opportunity a priority. It is an opportunity that can lead to clean and cheap electricity for every home in the country and guaranteed electricity for every industry on this island.

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