Health Information Bill 2024: Committee Stage
Seanad Éireann — 2026-03-03
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Jennifer Carroll MacNeill (FG), Dún Laoghaire

I thank the Senator for his comments. I am enormously sympathetic to the case he raised that informs his comments, as well as the advocacy that Andrew McGinley has channelled on behalf of his family and the way in which he has used that so constructively. There is a place for an analysis of how that data is appropriately shared and how that might be considered. I will speak to the Minister of State, Deputy Butler, in that regard. This is quite technical legislation, however, with important safeguards that are linked to the broader European health data space and the way in which data is managed, protected and used in those different contexts. I am not able to accept the amendment in the context of this legislation but I do not wish for that to take away from the significance and importance of what the Senator has raised, nor the intent of his amendment, which is to enable a gentleman like Mr. McGinley to have broader access to issues that are directly of concern to him.
I have to say that in the context of this Bill and in order to ensure its compliance with the broader legislation within which it fits, including domestic and European legislation, the protection of patient privacy and upholding data protection principles are fundamental to patient confidence in the handling of their health information for the broader system. The Health Information Bill complements and builds on the rights of natural persons provided at European and domestic level with the GDPR in respect of their personal data. It has been necessary to have sustained and positive engagement with the Data Protection Commission throughout the drafting process of this Bill.
People accessing mental health services deserve the same rights as people accessing any other form of health service. I acknowledge the intent of the particular difficulty raised by the Senator. I support the involvement of family members and loved ones in any person's care and treatment across the HSE, including where somebody accesses mental health services, as those who have a better and stronger network and the involvement of their family tend to have better outcomes. It is my understanding that 90% of people accessing treatment involve their families in some form. This does not answer the question posed by the Senator where that was not so.
People are actively encouraged by their multidisciplinary teams to involve family members in their care and treatment. Conversations on consent and the involvement of family should be ongoing and reactive to the person's changing condition. Where a person does not consent to having his or her personal health information shared, that must be respected outside very limited circumstances, which is the place where better discussion may be had.
As the Senator will appreciate, not only for the technical legislative purposes and the way in which this Bill fits into a broader suite of domestic and European legislation, the confidentiality piece is integral to how we are going to develop this electronic health record from a systems protection perspective and a patient participation perspective and so, for the purposes of this Bill, I cannot accept the amendment. However, I will have a conversation with the Minister of State, Deputy Butler, about how we might address the substantive question in the Senator's amendment and how we might think better about that for the future. I hope that will be of some satisfaction to the Senator.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/seanad/2026-03-03/debate/main
Retrieved: 2026-08-14T04:54:42+00:00
Sitting date: 2026-03-03