Seanad debates

Wednesday, 22 November 2023

Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Bill 2022: Second Stage

 

10:30 am

Photo of Paul GavanPaul Gavan (Sinn Fein) | Oireachtas source

I appreciate the opportunity to address this Bill today, which Sinn Féin will be supporting. It is crucial to recognise the origin of this Bill, which is a reactive response to revelations in England, specifically Bristol and two other hospitals, where more than 30,000 bodies or organs were retained.

The Dunne inquiry, which was initiated in 2000 but was marred by delays and costs, did not provide the anticipated redress or accountability for parents whose babies' organs were sold without their knowledge. Subsequent reports, such as the Willis report in 2009 and "RTÉ Investigates" in 2021, exposed ongoing issues in post mortem practices and organ disposal, emphasising the persistent need for legislative intervention.

A human tissue Bill was enacted in Britain in 2004. It has taken 20 years for the Government of this State to do the same. That has not been without its costs and consequences. Sadly, this legislation is reactive and comes too late for many families. The Bill addresses some of the recommendations made by Professor Deirdre Madden in the wake of the Dunne inquiry. However, it is essential to ascertain whether all 50 recommendations were ever implemented, a question that remains unanswered.Despite these efforts, the journey to this legislation highlights a systemic failure to proactively address issues in medical practices and paternalism, with external factors forcing corrective action.

While the Minister expressed confidence that the Bill would enhance the donor pool, citing Spain as an example, it is crucial to note a differing perspective. Reviewing the committee discussion of the general scheme gave me some pause for thought regarding presumed consent, which this Bill is adopting.

Mr. Mark Murphy of the Irish Kidney Association cited a Spanish study indicating that evidence does not support the notion that shifting towards presumed consent will alleviate organ shortages. The study suggested that the prevailing belief that low deceased donation rates result solely from a negative public attitude is not substantiated. The authors stressed we should never blame the public. Rather, the study emphasises the need for a comprehensive infrastructure, a sentiment echoed during committee hearings. While there were differences regarding an opt-in versus an opt-out system from different stakeholders, there was unanimous agreement on the critical need for infrastructure, dedicated staff teams, and nursing support – elements notably absent from the Bill.

In my area of Limerick, our hospital has more than its share of challenges as the Minister will be aware. Everything good that happens in there hinges on the hard work of the staff. It is perplexing that the Bill lacks any mention of or costing or strategy for addressing the staffing requirements vital for the effective implementation of its provisions.

Part 2 of the Bill addresses transplantation and introduces the concept of deemed consent, purportedly common in most European countries. Part 3 focuses on pathology practice and post mortems, emphasising the necessity of consent from either the family or the individual before death. Part 4 establishes a legislative structure for anatomical examination, a long-overdue update from the 1832 Act. Part 5 covers the public display of bodies and related requirements.

Notably, a section deals with providing tissues or cells to pharmaceutical companies, where the decision-making process involves the hospital manager and subsequent consultation with the family. Given the patchy history of the pharmaceutical industry on consent, like when the British pharma giant GlaxoSmithKline conducted vaccine trials on victims of the mother and baby homes without their prior informed consent, it is important that we get this right. The complexity of these aspects underscores the need for careful scrutiny and analysis, which pre-legislative scrutiny could have facilitated but unfortunately that was not carried out.

While welcoming the Bill's intentions, it is vital to emphasise the importance of infrastructure, staff and comprehensive planning for effective implementation. The historical context leading to this legislation underscores the need for ongoing vigilance and a commitment to addressing systemic failures in the healthcare system.

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