Sir, – While the Irish Kidney Association in principle wholeheartedly welcomes the upcoming legislation to replace the current 1832 Anatomy Act with the Human Tissue Bill 2019, it does have certain issues with aspects of the proposed legislation in relation to organ donation.
The “urgent” need to replace the Anatomy Act became necessary following Ireland’s examination of its own postmortem practices following the UK revelations unearthing retention of children’s organs in Alder Hey and Bristol in the late 1990s.
As a consequence, in 2004 the UK replaced its legislation on postmortem practices and created the Human Tissue Authority.
The then-minister for health Mary Harney received an Irish report from Dr Deirdre Madden on the same subject in December 2005. That report highlighted that “presumed consent” was a major part of the postmortem problems in retaining children’s organs in Ireland’s past.
Some 14 years later, ironically, recommendations are being made to legislate for a “soft opt-out system” – or presumption of consent system for organ donation for transplantation – in Ireland because almost every other European country is doing so. However, the health services in all European countries do not practise presumption of consent, of either the hard or soft variety. Without next of kin consent they do not proceed to donation – no matter how protected they are by legislation. Presumption of consent is proven not to be a practical organ donation consent system at the coal-face.
Because of our various statements in connection with this debate, many of which are totally misunderstood, one often hears the Irish Kidney Association portrayed as being somehow “against organ donation”. Nothing could be further from the truth.
Indeed, in the proposed legislation Ireland does not intend to practice soft or hard opt-out or presumption of consent either. If you pass the headlines of the legislation and read through the actual provisions you will see how this is so. The Irish Kidney Association is very happy about this. Its only difficulty with the legislation is the setting up of an organ donor registry for those that do not want to donate their organs without the registry having a positive section where people would be able to record their positive wish to donate organs in the same registry. We strongly believe this is a huge lost opportunity to improve the positive chances of the next of kin’s consent to organ donation. If the wishes of the deceased potential donor are known via a positive registry, the next of kin are far more likely to carry out the donor’s recorded wises. The facts speak for themselves as has been found in the UK experience.
The most recent UK National Potential Donor Audit showed that the rate of consent was 68.6 per cent when a specialist nurse for organ donation was involved in the approach to the family. This dropped to 27.5 per cent when they were not involved. When the specialist nurse was involved in the approach and the patient was known to be on the organ donor registry as positively consenting at the time of potential donation, the consent rate of the family was 92.6 per cent.
Ireland does not have a potential donor audit or the specialist nurses that the UK has, nor does it have a public donor registry. We need all of the above if we are serious about improving the Irish deceased organ donor rates.
Following the EU directive on organ donation and transplantation in 2012, we now have a new organ procurement service called Organ Donation Transplant Ireland (ODTI). We now have a valuable addition of six specialist nurse champions for organ donation, one in each of the six areas of the HSE. The ODTI staff are doing a tremendous service but with very limited resources.
We are advocating for an adjustment to a very small part of this legislation – it does have financial implications as do the other essential elements mentioned above.
All concerned want to maximise potential organ donor identification in Ireland and its subsequent conversion into actual organ donors, but the cheap option that successive Governments have recommended, will be, I am afraid, a complete waste of valuable time. The fear is that the public will react to soft opt-out legislation if they think that their consent is going to be presumed, and they will simply say no to organ donation in the proposed register, because they object to the presumption of their consent. This reaction has been shown to be evident in parts of the UK and in the Dutch registries. – Yours, etc,
MARK MURPHY,
Chief Executive,
Irish Kidney Association,
Donor House,
Block 43A,
Park West,
Dublin 12.
Sir, – Dr Angelo Bottone opposes the proposed new opt-out organ transplant regime (Letters, January 21st)).
I thought the Iona Institute was pro-life?
Although it’s nice to see it supporting bodily autonomy. – Yours, etc,
Dr BRENDAN
McDONNELL,
Dublin 8.