Irish Donor Network supports consent Bill

The seven patient groups which are members of the Irish Donor Network (IDN) have strongly supported the Cabinet decision to introduce a Human Tissues Bill, including soft opt-out organ donation consent and altruistic kidney donation.

Philip Watt, Chairperson of the Irish Donor Network, and CEO of Cystic Fibrosis Ireland, said, “The proposed change in organ donor consent will optimise the availability of solid organs – kidney, heart, lungs, pancreas and liver – for transplantation. This means that more people will be given the gift of life of a transplant that has the potential to lengthen life and improve the quality of life.

“The legislation will also need to be accompanied by the necessary resources including funding for an online registry, an awareness programme to better inform the public about the proposed change, and resources to employ more specialised organ donation and transplant staff and to open pre- and post-transplant rooms.

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“We know from research that the vast majority of the Irish population are willing to donate organs but, unfortunately, many have not registered that wish or spoken to their next of kin about organ donation. The new system will help to bridge that gap between wishing to do something and actually taking the steps to implement that wish.”

Under the proposed new system, the presumption is that people want to donate their organs, unless they explicitly opt out through an online register, or their family declines (hence called “soft opt-out” as opposed to “hard opt-out” where next of kin are not involved). It is a system which is already in place in almost every other country in Europe.
The new Bill will:

  • Regulate the removal, retention, storage, use and disposal of human tissue from deceased persons
  • Provide general conditions for the removal, donation and use of organs and tissues from deceased and living persons for the purposes of transplantation
  • Provide for an opt-out system of consent for organ donation and for an associated register

The proposals will:

  • Provide a framework of informed consent for the following designated activities:
    • Hospital Post Mortem
    • Organ Donation and Transplantation
    • Anatomy
    • Public Display
    • Education & Training
    • Import/Export
  • Formalise practice and procedure e.g. Regulating codes of practice in anatomy and post mortem
  • Allow for the dignified disposal/return of by- products of these activities, or for their consent to be used in research
  • Provide for an opt-out system of consent for organ donation and for an associated register.

In 2018, there were 234 organ donations from 81 deceased donors, compared with 260 donations from 99 deceased donors in 2017.

There are 522 people on waiting lists for liver, kidney, heart, lungs or pancreas transplants. Last year 42 people died awaiting a transplant.

The seven patient groups represented by the Irish Donor Network are the Alpha One Foundation, Cystic Fibrosis Ireland, COPD Support Ireland, Cystinosis Ireland, the Irish Heart and Lung Transplant Association, the Irish Lung Fibrosis Association, and the Pulmonary Hypertension Association Ireland.