Data Protection Act 2018 (Section 60(6)) and (Section 51(3)) Regulations 2026: Motion
Seanad Éireann — 2026-03-24
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Jennifer Murnane O'Connor (FF), Carlow-Kilkenny

I thank the Cathaoirleach. I welcome the opportunity to address the House on behalf of the Minister for Health on two important scoping exercises currently under way and to address the motion to approve four data protection regulations relating to these exercises. It is important that we put these updates in the context of the patients whose lives are at the heart of these issues.
I am very conscious that we are speaking in the context of the publication of details of the case of Chloe Maher. Chloe, who died recently, was formerly a patient of CHI's spinal services. As Members will appreciate, it would not be appropriate for me to comment on an individual case, but I do want to take this opportunity to offer my deepest condolences to Chloe's family and friends at this sad time. My heart goes out to them. It is the children, parents, families and survivors whose voices and experiences are at the centre of these processes and it is their lived experiences that will shape this work.
The first matter I wish to address is the CHI inquiry into spina bifida and complex scoliosis services scoping exercise. As a first step, the Government agreed that a facilitator will be appointed to consult with stakeholders on scoping the content of potential terms of reference for an inquiry. This process, the scoping exercise, is designed to ensure that when a public inquiry is established, it has structures that reflect the needs of children and families, are grounded in evidence and avoid duplication with existing statutory or clinical processes.
The Minister for Health appointed Mr. Remy Farrell SC as the independent facilitator to conduct this scoping exercise. The exercise will run for up to 16 weeks from his commencement date, which was 3 March. It was on the Attorney General’s recommendations that the Minister appointed Mr. Farrell due to his appropriate stature, experience and willingness to undertake this role. This marks a significant and much anticipated step forward. I and the Minister are very pleased that this work is now under way.
Mr. Farrell is a highly respected senior counsel with extensive experience in sensitive and complex matters. He will lead a structured programme of engagement designed to ensure that the voices of families are central to this process. While Mr. Farrell is known for his expertise in complex legal matters, what is also needed here is his ability to approach sensitive issues with humanity and respect. I hope families will feel able to engage meaningfully with this process and I strongly encourage full engagement with Mr. Farrell. The lived experiences of children and families are vital to shaping an inquiry that truly reflects the needs and realities of the children and families affected. Once this scoping exercise is complete, further Government approval will be sought for the final terms of reference to a statutory process. This inquiry will form part of the wider reflection on paediatric services in CHI.
I now want to turn to the scoping exercise in response to requests from Dignity4Patients on behalf of victims and survivors of Michael Shine. I would like to recognise the courage of the many individuals affected by Mr. Shine in continuing to seek justice for the very great wrongdoing that they suffered. On 26 November, the Government agreed that a timebound scoping exercise be undertaken by an independent person in response to requests from Dignity4Patients. The Minister appointed Mr. Lorcan Staines SC as the independent facilitator. Mr. Staines also commenced his work on 3 March and the exercise will run for up to 16 weeks. He has been finalising the terms of reference in direct consultation with Dignity4Patients.
Mr. Staines has two decades’ experience in criminal, regulatory and administrative law. He is widely recognised for his specialist work with victims and vulnerable witnesses, particularly in sensitive cases involving sexual violence and has advised both the Minister for justice and the Dublin Rape Crisis Centre on reforms to better protect people in the criminal process. Mr. Staines will fulfil his role as a facilitator through direct engagement with victims and survivors of Michael Shine, working alongside Dignity4Patients. Mr. Staines will receive all necessary supports to ensure that a victim-centred, trauma-informed and human rights-based approach underpins the scoping exercise and any subsequent statutory processes. The well-being of victims and survivors will be central throughout this process. The final report and recommendations will be submitted to the Government to guide the development of an appropriate and bespoke response to the issues raised and the needs identified by Dignity4Patients.
At the outset, I emphasised the paramount importance of the lived experiences of those affected to the work of both Mr. Farrell and Mr. Staines and that it is important that they get to engage with a number of patients, advocates and families and for them to have their voices heard. In order for this to happen, a lawful basis to process personal data for these exercises is required. This will allow the facilitators to conduct stakeholder engagement. It is intended to rely on Article 6(1)(e), Article 9(2)(1) and, in the case of the Dignity4Patients scoping exercise, Article 10 of the general data protection regulation. In accordance with these articles, the making of regulations under the Data Protection Act 2018, including sections 38(4)(b), 51(3) and 60(6), is necessary to give domestic legal effect to this basis, to ensure legal certainty and foreseeability, and to place appropriate safeguards on a statutory footing. No processing can commence until the necessary statutory framework is in place and any regulations have been made and commenced.
Officials in the Department of Health have been working with the Office of the Parliamentary Counsel to draft these regulations. Consultations have also occurred with the Data Protection Commission and the Department of justice. I thank these three offices for their work and advice in getting these regulations to this point. I would also like to focus on the work the Minister has undertaken to address challenges families have faced in relation to paediatric orthopaedic services and spinal services in particular. This includes strengthening governance and oversight, driving down waiting times, ensuring increased engagement and timely communications with families of patients with a view to building a better and more responsive service.
The Minister has held meetings with the HSE and the CHI board and executive and made it clear that everything possible must be done to reduce the amount of time children are waiting on procedures. Several initiatives are under way to help improve access to services including a ring-fenced theatre, additional outpatient clinics, outsourcing to maximise capacity and the enhancement of the transition pathways for patients from CHI to adult services. These initiatives have supported the completion of 534 paediatric spinal procedures in 2025, compared to 513 completed procedures in 2024, demonstrating an increase in activity and capacity. Over the same timeframe, a total of 524 procedures were added to the waiting list. Every effort is being made to reduce waiting times in the context of the rising demand.
To close, I want to again acknowledge the courage of the children, parents, families and survivors whose experiences have brought us to this point. Their voices must remain central as this work continues. I thank the House and all of those affected for their engagement and their strength.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/seanad/2026-03-24/debate/main
Retrieved: 2026-08-14T04:54:46+00:00
Sitting date: 2026-03-24