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Legal advice sought on potential inaccessibility of opt-out organ register

By Catherine Reilly - 20th Oct 2024

organ donor

Organ transplant activities should not proceed if the opt-out register (OOR) is inaccessible, according to legal advice discussed at a meeting of senior clinicians in the summer.

The legal advice was discussed by the national organ donation and transplantation advisory group (NODTAG) in June. A HSE spokesperson said this advice is the current position. However, they also stated that an independent legal opinion is being sought.

Under the Human Tissue Act 2024, which has yet to be commenced, an adult is deemed to consent to organ donation after death unless they had registered to opt out. Family members will continue to be consulted in circumstances where the individual had not opted out and donation would not proceed in cases of objection.

In June, the NODTAG heard that the “engineering and architecture” of the OOR was “well advanced”. According to meeting minutes: “Significant focus on downtime contingency and disaster recovery … noting that legal advice on Act is if the register cannot be accessed, transplantation activities do not go ahead.”

HSE Organ Donation and Transplant Ireland would be following up with Acute Operations in regard to “supplementary advice where [the] register is not available”, stated the minutes.

According to the HSE, the register is a bespoke product developed within its technology and transformation division. The approximate cost of development to date is €300,000. The register is currently in “pre-go-live stage”.

Asked about the supplementary advice referenced at the NODTAG meeting, and if there was any recourse available to staff if the register became inaccessible, the spokesperson said: “An independent legal opinion is being sought. [The] focus is on ensuring access to the register at all times.”

They also commented: “The disaster recovery plan in place aims to mitigate against cyberattacks and other network outages. A business continuity plan is in place to provide access to the register in the rare occurrence of the OOR being unavailable due to network or other technical issues.”

Meanwhile, the HSE confirmed new funding of €2 million for organ donation and transplant services was provided in Budget 2025.

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