Submission to the Joint Oireachtas Committee on Health
From the Irish Donor Network
Chairperson: Philip Watt (also CEO of Cystic Fibrosis Ireland)
Position of the IDN on the proposed change in organ donation and related issues
The Irish Donor Network (IDN) is comprised of patient groups which have a direct interest
and concern on organ donation and transplant issues in Ireland. The role of the Irish Donor
Network (IDN) is to bring patient groups together to:
 Encourage and help facilitate organ donation
 Contribute to the shaping of health policy on donation and transplantation
 Raise public awareness on donation and transplantation
There is a division of opinion among patient groups in the IDN in respect of this submission.
Those patient groups in the IDN that favour the policy position set out is this submission are:
 The Alpha One Foundation
 Cystic Fibrosis Ireland (CFI)- formerly the Cystic Fibrosis Association of Ireland
 Irish Heart and Lung Transplant Association (IHLTA)
 Irish Lung Fibrosis Association (ILFA)
The patient group in the IDN that does not support the policy position set out in the paper
is:

The Irish Kidney Association
Background and Key Terms
The Programme for Government published in 2011 states:
‘We will legislate to change the organ donation to an opt-out system for organ
transplantation, rather than an opt-in system, so as to improve the availability of organs for
patients in desperate need’.1
Ireland presently has an opt-in position. If you wish to become an organ donor after your
death, potential donors are advised to inform their next of kin of their intentions and to
carry an organ donor card. In Ireland next of kin are always asked for consent in order for a
1
The Government for National Recovery 2011-2016, p58
donation to proceed. In Ireland, consent is never presumed, even if a donor card has been
signed.2
The Irish Government is committed to an opt-out approach as part of the forthcoming (and
long delayed) Human Tissue Bill.
We understand that the government will be proposing a ‘soft’ opt out approach, which
means that next of kin (NOK) must continue to give their consent to the organ donation of a
family member who is a potential organ donor. Under no circumstances would the IDN
support a ‘hard opt-out’ approach whereby NOK would not be consulted.
The IDN would further contend that, from reviewing the existing international evidence,
that those few countries that profess to operate a hard opt out system, that in fact that this
is not actually applied in practice and NOK continue to be consulted (for example in Austria).
The IDN acknowledges the excellent standard and dedication of our transplant coordinators,
surgeons and teams and the procurement team in Beaumont Hospital. We would contend
without their dedication and skill, and the support of patient groups especially in promoting
organ donation, the transplantation and donation rates would be considerably less than at
present.
The Position of the Irish Donor Network
The position of the groups represented on the Irish Donor Network (with the exception of
the Irish Kidney Association) is that:
1. We support the change to ‘soft opt out’, but only if it is part of package of
measures (detailed below) to improve organ donation and transplantation in
Ireland. It would be wrong for the Irish Government to present the movement to an
opt out system as a panacea for improving donor and transplant rates in Ireland
without addressing the existing gaps and weaknesses in the present donor and
transplant system.
2. The Irish government must develop a meaningful consultative awareness and
public awareness process in advance of a change to ‘soft opt out’ whereby key
stakeholders and the general public can be fully informed of the proposed change
and have an opportunity to express their views both for and against.
2
National Organ Procurement Service, Beaumont Hospital (accessed November 2012)
http://www.beaumont.ie/index.jsp?p=105&n=454
Package of Essential Measures
The package of essential measures that would need to accompany a change in the ‘donor
law’ should include the following (in summary).
1. Appointment of a Network of Donor Coordinators would be assigned to major ICU
hospitals in Ireland. These medical and nursing personnel will underpin the organ
donation process by protecting the interests and welfare of those families who chose
to donate organs in difficult circumstances.
2. The National Organ Donation and Transplantation Office (NODTO) The Office
would be given sufficient resources and status to undertake its functions. The level
of existing resources at present is completely inadequate
3. A national on-line organ donor registry would be established. This would provide
potential donors the opportunity to indicate if they wish to opt out of all or some
forms of organ donation. For example a person may want to donate one or more
organs but not others.
4. Specific measures to improve the rate of lung and heart transplantation in Ireland.
These measures include the replacement of the cardio thoracic surgeon in the Mater
hospital who retired in 2010 (Mr Freddie Wood) and adequate inpatient isolation
rooms for surgery preparation and recovery.
5. The National Organ Procurement Office (NOPO) would be established on an
independent from any one hospital basis to accommodate the standards required by
both the EU tissue directive and the EU directive 2010/53/EC.
6. Greater support must be provided by the government towards annual public
awareness campaigns for organ donation irrespective of the change to opt out. Such
campaigns must be undertaken in partnership with the patient groups.