Preasráitis
Comhairliúchán Poiblí Córas Toilithe Optamaithe le haghaidh Deonú Orgán a thabhairt isteach
Foilsithe
An t-eolas is déanaí
Foilsithe
An t-eolas is déanaí
Public Consultation Introduction of an Opt-Out System of Consent for Organ Donation
Currently in Ireland, when a potential organ donor is identified, the deceased person’s next-of-kin is asked for their consent to allow organ donation to take place. This is known as express consent or an opt-in process to becoming an organ donor. In other words, the choice and the decision to become an organ donor rests with the next-of-kin of the deceased, including where the deceased person had an organ donor card or had indicated their wish to become an organ donor on their driving licence.
The government now intends to change this system of consent to one of opt-out consent. Consent will be deemed unless the person has, while alive, registered his/her wish not to become an organ donor after death. However, it is proposed that, even though consent is deemed, the next of kin will in practice always be consulted prior to removing any organ. If the next of kin objects to the organ donation, the donation will not proceed. This is known as a “soft” opt-out system.
The department placed an advertisement in the Irish Independent, the Irish Times, the Irish Examiner and the Star on July 19th inviting interested parties to submit their views on the practical aspects of introducing a system of opt-out consent for organ donation. Interested parties were invited to submit their general views and were also invited to consider specific issues which were set out in a consultation document (attached at Appendix A). The latest date for receipt of responses was Friday, September 20th 2013.
A total of 57 submissions were received. 40 submissions were received from individuals while 17 submissions were received from the following organisations / representative groups:
The following table summarises the views of the 17 organisations and representative bodies that made a submission to the consultation.
| Submission | Summary of Views Expressed |
| Bioethical Consultative Group of the Irish Catholic Bishops’ Conference | Welcomes any effort of the Irish Government to address ways in which the high levels of public support for organ transplantation may be channelled more effectively, while respecting human rights concerns, such as personal autonomy, the relationship between the state and citizen and respect for religious beliefs and family ties. |
| Department of Nephrology and Transplant Nephrology, National Kidney Transplant Centre, Beaumont Hospital | Wholeheartedly welcome these developments. The implementation of a presumed consent law combined with investment in infrastructure for donor co-ordinators and transplantation specialists can increase transplantation rates significantly. The Minister is to be congratulated for his proposal to introduce presumed consent in Ireland. |
| Forum on End of Life in Ireland | Welcomes the introduction of a soft opt-out system. |
| Health Information and Quality Authority | No explicit view |
| Houses of the Oireachtas Joint Committee on Health and Children | Strongly of the view that any transition to soft-opt out must be supported by increased investment in essential infrastructure, transplant surgeons and trained support staff. |
| Intensive Care Society of Ireland | Committed to supporting measures which can lead to increased organ donation for transplantation. Opinions within the Society differ on the likely effects of ‘Opt-Out’ consent |
| Irish Heart Foundation | Supports the introduction of soft opt-out but highlights the need to make progress across all the key components of an effective donation system. |
| Irish Hospice Foundation | Welcomes the introduction of a soft opt-out system. |
| Irish Kidney Association | Has serious concerns regarding the plan to alter the consent system for donating organs from the deceased. They failed to see any concrete rationale as to why this change should be made. |
| Irish Medical Organisation | Had previously advocated for the Hard Mandated Choice model but accepts that the government has chosen to go with the opt-out model. |
| Irish Medicines Board | Supportive of any practice or organisational change made to the current Irish transplant infrastructure that can improve the donation rates, while ensuring that a robust system of consent is put in place to ensure the quality and safety of the organ(s) donated. |
| Irish Nephrology Society | Supports the introduction of presumed consent with the soft opt out system and stresses the importance of investment in the infrastructure and organisation of transplant services to maximise organ donation rates. |
| Irish Thoracic Society | Supports the proposal to introduce legislation for presumed consent in ‘soft opt out’ form |
| Joint Submission from: Alpha One Foundation, Cystic Fibrosis Ireland, Irish Heart & Lung Transplant Assoc, Irish Lung Fibrosis Association | Welcomes the change to soft opt-out but emphasizes that this change needs to be part of a package of measures to address existing gaps and weaknesses in organ donation and transplant infrastructure in Ireland. |
In its consultation document, the department invited interested parties to submit their general views on the practical aspects of introducing a system of opt-out consent for organ donation and also posed a number of specific questions. An overview of the responses received is set out below. The authors have edited some of the comments.
The Joint Submission from Alpha One Foundation, Cystic Fibrosis Ireland, Irish Heart and Lung Transplant Association and the Irish Lung Fibrosis Association noted that countries with high organ donation rates had both a soft opt-out system and good transplant and organ donation infrastructure. This submission acknowledged that the effectiveness of opt-out is interdependent with the standard of donor and transplant infrastructure.
The submission from the Houses of the Oireachtas Joint Committee on Health and Children favoured the introduction of soft opt-out supported by increased investment in essential infrastructure, transplant surgeons and trained support staff as well as a significant public awareness campaign prior to such changes taking effect.
The Irish Thoracic Society believed that to successfully implement this policy and to protect the welfare and interests of donors and their families, it must be accompanied by the appropriate donation infrastructure. This submission suggested that this should include the employment of adequate medical and nursing professionals with a focus on organ donation and the establishment of an independent National Organ Procurement Office.
The Irish Heart Foundation was of the view that a soft opt-out system of consent would better reflect the wishes of the majority of the population who support organ donation. The IHF recognised that a number of other factors must be developed to strengthen the infrastructure for donations and to encourage a culture of organ donation within society. The IHF said that this change to consent provides the potential to further increase positive attitudes to donation and thereby to increase the number of organs available for transplantation. It advocated investment in training for healthcare professionals, particularly for transplant co-ordinators and staff working in A&E and intensive care and suggested that effective management pathways for donors must also be developed so that identification of donors and organ retrieval is a routine part of hospital practice.
While they supported the introduction of opt-out, the main concerns identified by the Irish Hospice Foundation’s and the National Council of the Forum on End of Life in Ireland’s submissions were:
The Irish Nephrology Society was of the view that infrastructure and legislation both need to be addressed as crucial components to improve the rate of organ donation and to address the imbalance between supply and demand in this area. It stated that a change to the legislation would not on its own be sufficient to achieve the numbers necessary but would need to be underpinned by investment in the organisation and infrastructure for transplantation particularly in the provision of full time transplant coordinators in the major medical centres. Enhanced public awareness and education would also be essential.
A selection of comments received from individuals is set out below:
The Irish Kidney Association was of the opinion that misinformation on the success of consent in improving deceased donor rates across Europe abounds. In its view, the organisational changes in the management of the organ donation process are completely the reason for higher organ donation rate countries.
The IKA would support the following infrastructural changes:
Below is a selection of comments submitted from individuals who did not support opt-out.
Prof John Fabre – Professor Emeritus at Kings College London and President of the British Transplantation Society from 1992 to 1995 stated that many observers have wrongly attributed Spain’s success since 1989 to its presumed consent legislation. He, as well as the Irish Kidney Association, referred to a paper co-authored by the Director of the Spanish Organ Donation Organisation, Dr Rafael Matesanz, which was published in the British Medical Journal in October 2010. In this paper, the authors stated that “Crucially, Spain does not have an opt-out register for those who do not wish to become organ donors. Not a penny is spent on recording objections to organ donation by Spanish citizens, nor on public awareness of the 1979 legislation. Clearly, the presumed consent law in Spain is dormant, and it pre-dates key policy changes made in 1989. In these circumstances, Spain’s outstanding deceased organ donor rate cannot reasonably be attributed to its presumed consent laws”. Prof Fabre was of the view that the high level of consent consistently achieved in Spain has been achieved by promoting better public understanding of transplantation, better public appreciation of its outstanding benefits, and optimal approaches to the family at the time of donation. He also referred to the UK Department of Health’s strategy to 2020 which has improved consent rates as one of its major objectives – but not by legislation. He was of the view that presumed consent is expensive, divisive and unnecessary. He described it as a simplistic idea that does nothing to help desperate patients waiting for a transplant.
Dr David Honan, Consultant Anaesthetist pointed to the fragile, altruistic transplant system here, and was of the view that introducing presumed consent would risk destroying it. He suggested that Irish people may choose to opt out in droves if an element of compulsion is introduced which negates their altruism.
Gary Rutherford founder of www.donorconsent.com was of the view that an opt-out system would be detrimental to our current organ procurement system which, in his view, works well but can be improved. He was concerned that this latest public consultation was constructed in such a way as to disregard the findings of the 2009 public consultation. He suggested that opt-out might raise legal/constitutional issues by implying or creating the perception that the State has certain rights over a citizen’s body and organs post mortem.
Other comments submitted by individuals included:
A number of general comments which were neither specifically in support or against opt-out consent were received. A selection of these comments are set out below.
The Department of Nephrology and Transplant Nephrology, National Kidney Transplant Centre, Beaumont Hospital stated that all potential organ donors are not being utilised and frequently in intensive care units across the country, families are not given the opportunity to consider offering their loved ones organs for transplantation. There are many reasons why this happens including a natural reluctance to potentially further upset a grieving family. In its view, presumed consent legislation is not used to retrieve organs against the wishes of the next of kin. Instead, it facilitates discussion about possible donation in difficult circumstances.
The Irish Medical Organisation stated that the impact of donor policies in Europe found no obvious correlation between consent systems and donor efficiency. They pointed to factors other than the consent system which seem to be responsible for increased rates of organ donation particularly measures undertaken in hospitals to optimise donor procurement and public awareness about the relevant aspects of organ donation. The IMO also suggested that the legislation introducing the opt-out model of consent should be clear and transparent. They suggested that a regular review process be put in place to ensure that there is accountability for the procurement and use of all organs. They also proposed that the donor’s next of kin be kept up-to-date with the process. The IMO acknowledged that this is an issue about choice and that information is paramount to enable citizens to make informed decisions and that individual choice needs to be respected and accounted for.
The Intensive Care Society of Ireland was of the view that great care would need to be taken with the implementation of opt-out. If there was a perception that the needs of transplant recipients were placed above critically ill patients in ICU this could undermine the relationship of trust between clinicians and family in ICU or it could reduce the existing strong public support for organ donation. The ICSI used the term ‘authorisation’ to indicate that the family have the authority or power to decide whether or not the organs of the deceased will be donated. The ICSI suggested that families must be able to prevent organ donation if they know this was not the wish of the potential donor or if it is contrary to their own wishes. The choice should be documented in writing and signed. This process should be formal and structured, easy to understand, allow time for discussion and for reflection unbiased towards a particular position, prompt the legal surrogate to consider the patient’s own views in reaching a decision and avoid undue delay to organ procurement or to funeral arrangements. The ISCI also made the following points in its submission:
The Bioethics Consultative Group of the Irish Catholic Bishops’ Conference stated that a decision-making process that respects freedom and trust (and so the logic of giving) is critical. Before death, the freedom of individuals to opt-out of the register must be in no way cumbersome or seemingly obstructive. Furthermore, such a register should protect the rights to confidentiality of each individual. After death, trust must be built into the legal framework and consultative process with the next-of-kin. On one hand, the legal framework itself must have built-in protections against abuses that may arise due to presuming consent. On the other hand, the consultative process requires real and substantial funding and resources in order that appropriate and trained health care professionals may engage with the next of kin in an inclusive manner that affords a real and respected opportunity to decline. If the proper consent of the donor or the donor’s next-of-kin is not respected and safeguarded by law, then poorly thought out arrangements could have the opposite effect of more people opting out or more next-of-kin refusing consent. This submission suggested that legal safeguards could include:
A submission from an individual was concerned that whereas in the current system, the public understands that if they wish to donate, they must carry a donor card and make their wishes known to their next-of-kin; under the proposed system, the public may feel that there is no longer the need to carry a card etc. because their consent is presumed. In such a situation, the next-of-kin is more likely to object. (James Daly)
Gary Rutherford founder of www.donorconsent.com advocated the following:
This submission proposed a donor consent model offer a unique online photographic donor card with documented individual and next of kin consents made accessible and retrievable in a matter of minutes. In his view, www.donorconsent.com offers a system of opt-in consent which is simple to use and internet based and would offer a de facto Organ Donor Registry.
Some suggestions put forward by individuals included:
Another submission stated that it was an individual’s choice and their choice alone to become an organ donor. The author resented the fact that the family have to be consulted when they all know my wishes. Donors wishes should be respected and adhered to.
The consultation document posed a number of specific questions and the submissions received in response to these questions are summarised below.
1. What in your view are the major ethical or moral issues associated with the introduction of an opt-out model of consent?
The major ethical issue would be to ensure that the necessary infrastructure is in place to support soft opt-out. Without these measures the impact of soft opt-out could be severely blunted. (Joint Submission from Alpha One Foundation, Cystic Fibrosis Ireland, Irish Heart and Lung Transplant Association and Irish Lung Fibrosis Association)
Clinicians have an ethical obligation to ensure donors’ rights and interests are respected as well as trying to save the lives of those on organ waiting lists and respecting the emotional wellbeing of the donor’s loved ones. (Irish Hospice Foundation and the National Council of the Forum on End of Life in Ireland)
We do not have any major ethical or moral concerns with the introduction of an opt-out model of consent. However, we stress the importance of information being made available in the public sphere to ensure that more public awareness about organ donation is generated. Additionally, legislation should be clear and transparent. It is also advisable that a regular review process be put in place to ensure that there is accountability for the procurement and use of all organs. It is important that the donor’s next of kin be kept up-to-date with the process. Regardless of the model of consent the IMO acknowledges that this is an issue about choice and that information is paramount to enable citizens to make informed decisions and that individual choice needs to be respected and accounted for. (Irish Medical Organisation)
The major ethical or moral issues are that organ donation can proceed without consent. If this is put into practice, the consequences of press publicity from family who are not available to object to organ donation will destroy the public confidence and support for organ donation. A legal challenge for compensation would probably not succeed but the moral ground and public sympathy will be in favour of the bereaved family. No person wants this potentially explosive situation but it is not difficult to imagine it happening or the public backlash that could ensue. The ethical dilemma will be imposed on the individuals who are expected to proceed to produce organs without available consent. As a consequence, no one in their right mind will proceed to procure organs without consent in practice. Making law does not remove the ethical and moral issues for the personnel involved in organ procurement. (Irish Kidney Association)
The concept of the State assuming ownership of body parts after death in a utilitarian manner is repugnant to many. The State or EU may be influenced by Pharmaco-Economic interests involved in transplantation (e.g., immunosuppressant drugs are a multi-billion euro industry). Individuals may feel coerced not to opt out, for fear of themselves or their relatives being put to the bottom of a transplant waiting list. It may trigger large-scale opting-out (e.g. Muslims as a Group in Singapore, a location where there has been civil unrest in 2007 when organs were forcibly taken in defiance of family refusal). If medical staff happen to share the growing scepticism about the validity of the concept of brainstem death, they must be ethically free not to be involved in organ procurement, should they so wish (as is currently the case with regard to ethics of involvement with abortion), irrespective of any new legal requirements. (Dr David Honan, Consultant Anaesthetist)
I feel there is a moral obligation to help where we can in this world. After my death I would love up have the opportunity to save lives. (Hazel Dunne)
The major ethical/moral issues associated with this model surround the lack of express positive consent. These are outweighed by the ethical and moral benefits. It is important that the next-of-kin do not feel that the taking of organs is morally or ethically questionable. (James Daly)
It is very important that older generations are made particularly aware that they need to opt out as they may not have next of kin who can object, they also may not find information on the internet as readily as a younger person. (Joe Panama)
It is unethical and unacceptable for organs to be harvested without express consent of deceased or next of kin of deceased. This consent is not an optional extra. Where no next-of-kin is known or found the deceased’s organs should not be harvested. This is a total violation. The State and/or its agencies have no right or entitlement to assume consent unless the deceased or their next of kin has expressed a desire to donate organs irrespective of organ donor shortage or organ need. (Anonymous)
2. What are the practical and operational issues to be examined in implementing this model?
Assignment of donor coordinators to major ICU hospitals; adequate public awareness programmes involving both the State and the patient groups and adequate resources for the National Organ Donation and Transplantation Office. (Joint Submission from Alpha One Foundation, Cystic Fibrosis Ireland, Irish Heart and Lung Transplant Association and Irish Lung Fibrosis Association)
There may be issues where relatives/ loved ones oppose a donation. It is vital that conversations with loved ones are conducted sensitively and respectfully and that information on organ donation is communicated effectively. Additional training may be required for healthcare staff (in addition to transplant coordinators) who may be having these conversations with people. Families who have refused to donate organs may experience regret and guilt following this decision. In a system of presumed consent, the burden of decision making is lifted from the family which may make the situation easier for them. In addition to any such change in the law, it is important that there would be further investment in transplantation programmes in Ireland including:
(Irish Hospice Foundation and the National Council of the Forum on End of Life in Ireland)
Any national database would require development of a system to accurately identify each member of the public through a unique health identification system. This system would need independent oversight to ensure integrity and protection of the data consistent with national legislation. Where organs are retrieved from someone who has opted out, there may be a need to report this to the appropriate oversight authority. An ongoing publicity campaign advocating the need for organ donation but maintaining the right to opt out would be required. Opt out mechanisms should be straightforward and clear for members of the public. (Irish Medicines Board)
A national database or register should ideally be established documenting the preferences of all potential organ donors. However, a system to record those who have opted out cannot safely and reliably be implemented in the absence of a national system of identifiers. In the opt-out system what arrangements will be in place to contact next of kin in time to facilitate decision making? (HIQA)
The practical and operational issues are wide and varied. To implement the procurement of organs without consent whilst giving the family an opportunity to object to donation is unchartered ground in the Irish health system. Establishing identity of the potential donor is paramount in establishing whether they have already opted out. Family cooperation is an important way of obtaining the medical and lifestyle history of the donor. Putting the family on the back foot and not seeking consent from them could and will antagonise them and reduce their willingness to cooperate with a process that they are being told is going to happen. Will they be informed that they have a right to object to the organ donation? If not, are the staff involved in the process going to be challenged for not informing the next-of-kin of the rights to object to the donation process. We will end up with a situation that informed consent is replaced by a necessity to inform the next-of-kin of the right to object. This regime will be bizarre and counter-productive in our view. (Irish Kidney Association)
Information regarding the potential donor and their consent status need to be collected in the most practical and time efficient manner as possible. The capturing of information on a large scale and maintaining confidentiality and information security is of the utmost importance. It should be automatic that non-residents should be excluded from organ donation. Other factors to be considered in implementing this model include appropriate resources to design, implement and maintain central registry for transplant coordinators, a sustained media campaign to generate public awareness, transplant coordinators – improved function and increased number and increased funding towards training and equipment for transplant operations. (Irish Medical Organisation)
Current Irish Medical Council guidelines on consent are not compatible with Opt Out systems and do not work in practice. (Gary Rutherford)
Access to an Opt-Out Register. (Dr David Honan, Consultant Anaesthetist)
Problems are likely to arise when family disagree with the wishes of the donor. Because of the immediacy of organ donation there should be a conflict resolution method in place that does not rely on going to the courts. (Gerard Menezes)
Presumably, there would need to be electronic consent for each citizen, perhaps with the use of the new social services card. (Joe Panama)
The need for a secure database for those who wish to opt-out of organ donation, protection for vulnerable people (such as the homeless, mentally incapacitated and those with poor literacy skills), those with no access to an on-line database, those who wish to change their minds or those who wish to specify which organs can be used all need to be addressed in a logical, robust, fair, open and honest manner. Furthermore, the needs of patients, potential organ donors and their next of kin need to be taken into account and protected. To facilitate the move to a soft-opt out model of organ donation, the introduction of key donation staff and transplant coordinators in ITU hospital departments, increased infrastructure, additional resources and a commitment to providing a strong and structured financial and governance framework are absolute requirements. (Nicola Cassidy)
The State has proved itself incapable of securing individual’s private data. I would have no faith that the State would correctly identify those deceased individuals who have opted out especially in cases where no next-of-kin are known. If those under 18 years are deemed to require special treatment what about those with disability, the elderly, those with cognitive and intellectual impairment? How will the homeless and substance dependent deceased be dealt with? Assume to have opted out? Or presumed to have opted in because of a need for more material for biomedical research? Men who have sex with men cannot donate blood. Does this mean that they can donate organs or are they off the list of suitable donors? (Anonymous)
One of the biggest stumbling blocks we will have is that no doctor is going to enter an Intensive Care Unit and actually proceed to take organs without consent from grieving relatives. (Brendan McLaughlin)
3. Under a new statutory system, how should people opt out?
We suggest that people should be able to register at a variety of locations, e.g., GP surgeries, pharmacies, hospitals or health centres. (Irish Medicines Board)
Written consent should be obtained from individuals while they have the mental capacity to give consent. It would be helpful if a copy of this written consent was held centrally on a national database / register. It could also be helpful if individuals who wish to opt-out were provided with an ID type card which explicitly documented their wish to opt-out. (HIQA)
It is vital that people are well informed about organ donation and can easily register an objection should they wish to do so. Ideally this would be done via a central electronic database but in advance of the development of such a system, it could be done by carrying an opt-out card similar to the opt-in cards currently available. Another method would be to link the opt-out to a person’s PPS number or driver’s license, social welfare card, or their name on the electoral register as this could make it easier to discover any such objection in the event of death, particularly if an electronic database were later developed to record the names of those who choose not to become donors. (Irish Hospice Foundation and the National Council of the Forum on End of Life in Ireland)
This is a legal question. Simply informing their next of kin is the current way, presuming the family remember to agree at the time. A secure online database is the obvious answer but opting out must be available in writing, also on an up-to-date database for all donation hospitals’ key donation staff to examine. In our view this is an expensive necessity to collect the opt-out database. We would favour an organ donor registry that collected both the positive and negative consent to organ donation. It would allow public awareness to be directed to the data collecting website complementing the organ donor card system and the positive response of the drivers licence application forms. Never should a person be forced to say yes or no to being an organ donor on a website. This experiment failed dramatically in Texas and 40% of people opted to say no because they were compelled to decide. (Irish Kidney Association)
Whilst it must be made easy to opt out and whilst it must be confidential, the information must be accessible to each Intensive Care Unit. It is unfair to require individuals to carry a document or card at all times, and not everyone possesses a driving licence. Also, IT systems are not always wholly reliable. (Dr David Honan, Consultant Anaesthetist)
We need to create a National Registry that allows this decision to be recorded regardless of their reasons (illness, belief, culture) and regardless of the consent system in place. (Gary Rutherford)
In theory the best place to opt out would be on a centralised computerised register but with no national patient identifier and no simple way of doctors being able to find the donor’s details without a unique identifier this will be problematic. A donor opt out card may be the simplest way around this until the unique identifier is bedded down. (Gerard Menezes)
Opt out should be by card and online only – not through conversation with next of kin. (Hazel Dunne)
Under the new system, opting out should be very easy. If it is in any way difficult, then many people will not get around to opting out. This will undermine the entire system because it will be unrealistic to presume that anyone who has not opted out does not have any problem with donation. (James Daly)
It would be worth distributing the relevant documents to local public health services, colleges and to GPs and to put infrastructure in place to enable people to register their choice through the post office or social welfare systems. It would be remiss not to allow people to opt out online. Perhaps, once a person makes their choice, they receive a phone call from the Department of Health to confirm that they indeed made that decision. (Joe Panama)
The burden should not be on those who wish to opt out but on those who avidly wish to opt in and make their wishes known. The process to opt out should be reliable and secure. (Anonymous)
4. Should specific vulnerable groups be excluded from deeming their consent e.g. incapacitated adults?
Normal protocols should apply to vulnerable groups such as those with an impaired ability to make a choice to opt out. (Joint Submission from Alpha One Foundation, Cystic Fibrosis Ireland, Irish Heart and Lung Transplant Association and Irish Lung Fibrosis Association)
Any exclusion of specific groups from consent should be clearly specified in any primary legislation. (Irish Medicines Board)
The legislation must apply only to adults considered to have the capacity to make this decision. (Irish Hospice Foundation and the National Council of the Forum on End of Life in Ireland)
Incapacitated persons should rely on their legal surrogate to make the decision for them (in the same way they provide assent for other procedures). We do not see a reason they should be excluded from opt-out provisions. (Intensive Care Society of Ireland)
The requirement for consent is recognised for all people in national, international and European human rights law and under the Irish Constitution. Therefore, this will have to be determined on a case by case basis. It is up to the system to facilitate vulnerable groups with capacity to consent to do so. It is also important to be cognisant of any relevant provisions made in the Assisted Decision Making Bill 2013 and other relevant legislation. (HIQA)
Legislation should allow for a process involving their legal guardians to facilitate children and incapacitated adults to make that decision. An age of consent should also be covered in legislation. (Irish Medical Organisation)
Without doubt, all vulnerable groups should be defined and excluded from the opt-out system if they do not have the capacity to object to organ donation the presumption of their consent fails. The informed family consent must be mandatory for these donations to proceed. It also begs the question, who will determine that the potential organ donor is in a vulnerable group or not, if the next-of-kin are not available for consultation. (Irish Kidney Association)
Yes, otherwise you de-humanise them. (Dr David Honan, Consultant Anaesthetist)
How or who would assess capacity and how would this be established in the time sensitive nature required for cadaveric organ donation. Why should it matter about the donor’s capacity when presumably what matters should only be that they are a viable organ donor? (Gary Rutherford)
Incapacitated adults should not routinely be excluded however there may be some special cases which need further medical supervision. (Gerard Menezes)
Yes, have a common sense approach. Are they able to make legal, and statutory decisions? If no then automatic opt out unless a card is carried. (Hazel Dunne)
I do not believe that specific vulnerable groups should be excluded, but I do believe that their next-of-kin should be consulted after death and before donation. (James Daly)
Absolutely, unless permission is expressly provided by next of kin. (Joe Panama)
The authors of this consultation document already deem under 18 year olds and those not ordinarily resident in the State to be excluded highlighting misgivings about ethics and morals of making automatic decisions on behalf of others in this important and very sensitive matter. It is wrong for the State to meddle in this area and for a decision to be made on behalf of anyone without that person in life consenting or their loved ones or in death their next-of-kin if expressed wishes of deceased are not known. Where known, the expressed wishes of the deceased should always be adhered to and where there is no next-of-kin no organs or tissues should be taken. (Anonymous)
5. How should groups with religious or cultural objections be accommodated?
Through consultation with the potential donor’s family or through the ability to opt-out. (Joint Submission from Alpha One Foundation, Cystic Fibrosis Ireland, Irish Heart and Lung Transplant Association and Irish Lung Fibrosis Association)
Any exclusion of specific groups from consent should be clearly specified in any primary legislation. (Irish Medicines Board)
The indications of groups with religious or cultural objections should be captured via the registration of a formal objection during their lifetime if they do not wish to become an organ donor after death. All information for members of the public on organ donation and the opt-out system should explicitly explain how to opt-out and also describe how a “soft” opt-out system would work in practice. Such information should be available in accessible / easy to read formats. This will facilitate members of the public to make fully informed decisions with regard to organ donation. (HIQA)
Freedom of religious and cultural preferences must be respected and accommodated while at the same time the same level of public education on organ donation should be available to all. (Irish Hospice Foundation and the National Council of the Forum on End of Life in Ireland)
If a person is known to be from a particular religious or cultural group, there is no reason to presume that they themselves object to being an organ donor. It simply highlights the label they choose to be known by. It should be up to these groups themselves to promote organ donation or not and object to organ donation if they want to as individuals on a register. The spiritual leaders can make their own minds up and proceed as they wish. No effort should be made to highlight the wishes pro or con by specific groups particularly if they object to organ donation. (Irish Kidney Association)
An individual must express their objection formally against organ donation through the national register. (Irish Medical Organisation)
Religious groups and cultural objections should not be considered any different from anyone else. If someone has a religious or cultural objection then they should follow the opt out method. (Gerard Menezes)
Easy access to opt out like everybody else. In order to help with implementation we should consult with all religious groups for their input into how to best roll this out sensitively (Hazel Dunne)
People with religious or cultural objections should be able to easily opt out. After death and before donation, the consultation with the next-of-kin should uncover any such objections. (James Daly)
There should be provision made to ensure that any groups with such objections be met and given the chance to opt out as a group. It would then fall to the groups to ensure that they keep their future members informed. (Joe Panama)
The onus should not be on this group but on those who wish to donate to make their wishes known and carry a donor card. (Anonymous)
6. Can an opt-out system of consent operate in the absence of a national register to record the wishes of those who wish to opt-out?
It does not seem possible to operate a system in the absence of a national register. (Irish Medicines Board)
A Register of those who do not wish their organs to be donated is necessary. This should include a provision for selective donation of particular organs. The process of entering one’s name in the Register should be made easy but appropriate safeguards to ensure privacy must also be ensured. Lack of inclusion of a person’s name on a Register will not establish their approval of organ donation and families must be consulted also. Other issues include validation of a person’s entry, mistaken identity issues, privacy and Data Protection issues, technical problems like difficulties with accessing the Register out of hours, a possible public perception that inclusion on the Register will hinder their own access to transplantation etc. (Intensive Care Society of Ireland)
An online, secure, central register is essential to enable individuals to register their decision to opt-out of organ donation. Individuals should be able to register to opt-out at any point during their lives. Sufficient funding will be required to establish and maintain the register. (Irish Heart Foundation)
A register that is easy to access by relevant professionals would be essential to the effective operation of an opt-out system. (Irish Hospice Foundation and the National Council of the Forum on End of Life in Ireland)
An opt-out system by definition requires a method whereby individuals can opt out. What other method other than a registry could satisfy the opt-out element in the consent is beyond us. (Irish Kidney Association)
No. A secure, central register is essential for recording if individuals are opting out. It should be run independently from those carrying out transplant operations to ensure its integrity. It is not feasible to expect every individual’s family to know their situation in relation to opting-out. As such, a national register is essential. (Irish Medical Organisation)
No. A system needs to be put in place to ensure the details of those who opt-out are known. However, a system to record those who have opted out cannot safely and reliably be implemented in the absence of a national system of identifiers. (HIQA)
Absolutely not. If we have a National Registry why not allow people to do something positive and opt in. People can also take the opportunity when registering to opt out or change from one to the other as they progress through their lives. (Gary Rutherford)
No (Dr David Honan, Consultant Anaesthetist)
An opt out system of consent could operate in the absence of a national register however carrying a card could be considered to be a backward step. (Gerard Menezes)
Yes, opt out cards and online. (Hazel Dunne)
The absence of a national register would probably undermine the opt-out system. (James Daly)
No, everyone and every choice must be recorded and constantly monitored and changed as necessary. People will change their minds, as it their right. (Joe Panama)
The onus should not be on those not wishing to be a donor or a subject of biomedical research. The onus should be on those who want to be involved. If a register is the way to go to register lack of consent, one has to have faith that it will be consulted, safely kept and updated and that all medical staff know the register exists and to consult it before procedure and to engage with the family. It will also require a huge information campaign to inform the public of the issue and of the register and details of the register and how to sign up etc. must be available on all relevant websites dealing with organ donation and transplant issues. (Anonymous)
7. If a register is required who should hold this information?
A National Register on Withholding Consent to Organ Donation should be established which would be automatically accessible to organ procurement services and managed by health departments. (Houses of the Oireachtas Joint Committee on Health and Children)
This information would most readily reside in a National Organ Procurement Service or any future organ transplant authority. (Irish Medicines Board)
To ensure its integrity, the register should be run independently of those conducting transplantations and should only be accessible to transplant co-ordinators who are independent of transplant teams. (Irish Heart Foundation)
A register is required and is should be a positive and negative register to assist promotion of organ donation generally. The register should be the property of the HSE and all willing organisations can drive the public via awareness campaigns to the registry. The registry will have to be secure. The UK use a central hub in NHSBT in Bristol and all potential donors wishes are checked by donation hospital staff by phone to a 24 hour call centre. This is a positive registry. A negative registry would have to have the same capacity 24/7. So why not include the positive responses as well as the negative ones? Clear statistics are available as to the usefulness of a positive register’s ability to inform family who, when they are informed, are much more likely to donate their next-of-kin’s organs. This should not be forgotten even if the soft opt-out system is tried in Ireland. (Irish Kidney Association)
A specific body or unit should be assigned overall responsibility and accountability for the register. The register should ideally be accessible on a 24 hour basis. Access controls should be established to ensure that the appropriate staff have access to the register. (HIQA)
The information should be recorded in a national database that is a secure record only to be accessed by transplant co-ordinators, and not medical staff that are part of a transplant team. Its security and protection is paramount to ensure individual choice and the inability to manipulate records from people outside the transplant coordination process. Information provided to people administering the database should be absolutely confidential. The easiest way to ensure identification would be by photo-identification or by an individual’s PPS number. Consumer friendly processes should be applied to ensure that individuals are not intimidated by the procedure of registering their preference. (Irish Medical Organisation)
A Register should be held by a statutory body which does not have a vested interest in organ donation. The Irish Medicines Board as the regulatory body is an option but they do not operate outside office hours. (Intensive Care Society of Ireland)
It would be unsafe to entrust this information only to a single National Transplant Office, as they would be perceived as a biased vested interest. A new neutral Legal Entity would need to be established. (Dr David Honan, Consultant Anaesthetist)
Not the HSE. (Hazel Dunne)
The Transplant Authority should maintain this National Registry. A network of hospital based Transplant Coordinators should have access to this system. (Gary Rutherford)
I would think that the Department of Health or HSE should hold the opt-out register, since it is going to be a HSE employee who takes the organs and who will have to find out the deceased’s wishes. (James Daly)
The Department of Health and the Ombudsman on request. I see no problem in making that information accessible to anybody who can access census results. (Joe Panama)
A reliable institution regretfully in this country our State, our leaders and its institutions have a poor record in being fit for purpose and reliable. It should not be an NGO or quango. (Anonymous)
8. Should an opt-out system only cover the procurement of organs or should it also cover tissues that may be removed along with an organ e.g. heart valves?
There should be a mechanism to obtain consent for donation of organs and tissues at the same time and this could be best facilitated by being specified in primary legislation.(Irish Medicines Board)
There seems no reason to treat tissues like heart valves any differently to organs in regard to opt-out consent. (Intensive Care Society of Ireland)
Information on organ donation and what exactly this entails, including the issue of whether organs only or organs and tissues are to be removed should be clearly explained in the organ donation and opt-out system information provided to members of the public. Such information should be available in accessible / easy to read formats. This will facilitate members of the public to make fully informed decisions with regard to organ donation. (HIQA)
It should also cover tissues that may be removed along with organs. (Irish Hospice Foundation and the National Council of the Forum on End of Life in Ireland)
Organ donation consent should be for organs and tissue but it should be explained that some tissue will be procured later than the organs at the subsequent post-mortem process. The difference between organs and tissue should be clearly explained in more detail. Organs will have to be used immediately – less than 24 hours – but tissue can be stored for weeks before its subsequent use. (Irish Kidney Association)
This question is clinically meaningless (or badly phrased), as valves form part of a heart. (Dr David Honan, Consultant Anaesthetist)
No, but once again this is something that should not be taken for granted. It is a decision that should and could be taken and recorded in advance if the correct systems were in place. (Gary Rutherford)
Organs and associated tissues should be considered the same if you opt out you opt out of everything. Keep it simple. (Gerard Menezes)
All above. Not just organs, everything. (Hazel Dunne)
I would think that the system should cover whatever tissue is ordinarily necessary for organ transplantation. No more should be removed than what is necessary. (James Daly)
It should cover any and all tissues and/or organs health service professionals require to help benefit or save a living person’s life. (Joe Panama)
The opt-out system should cover tissues that may be removed along with an organ. However, this ought to be made clear through legislation and through a public education and information programme. An individual must be able to opt-out and register objections should he/she wish. The deceased person’s family must be consulted prior to removing any tissue. The Human Tissue Bill should set out a detailed consent framework in relation to donation of organs and tissues by living people for transplantation and research. (Irish Medical Organisation)
It must cover all. (Anonymous)
9. Should a person be able to register an objection to donating specific organs?
Any provision for ‘partial’ consent should be clearly specified in legislation and the process itself should be simple enough to complete. (Irish Medicines Board)
People should be able to register an objection to donating specific organs on the opt-out register. The register should also enable people to raise partial objections on the register, i.e. to opt not to donate certain organs. (Irish Heart Foundation)
Yes a person should be able to register an objection to donating specific organs. A national register should have the capacity to accommodate the specific wishes of an individual. (Irish Medical Organisation)
Yes. In the respect of each person’s right to self-determination and autonomy, all individuals should be facilitated to agree or object to donating specific organs. (HIQA)
No we do not think that a register should go into such detail. The donor cards in the past had sections for this detail and few used it and we moved to multi-organ donor cards without any difficulty. If one goes down this route, tissue will have to be listed also. This will soon over-burden a registry and make mistakes much more of a reality. (Irish Kidney Association)
Yes. (Irish Hospice Foundation and the National Council of the Forum on End of Life in Ireland)
Nobody should be able to register an objection to donating a specific organ. (Gerard Menezes)
No I think it should be all or nothing. (Hazel Dunne)
A person should be able to object to donating specific organs. (James Daly)
Yes (Dr David Honan, Consultant Anaesthetist)
Yes (Gary Rutherford)
Yes. (Joe Panama)
Of course. (Anonymous)
10. Pending the development of a national system for individual health identifiers in this country, how can the record of those who have opted- out be best accessed in an accurate and timely fashion?
Teastaíonn uimhreacha aitheantais uathúla (UIN) inár gcóras sláinte le go n-oibreoidh clárlann i gceart. Chuirfeadh sé seo go mór leis an gcumas daoine a aithint go slán. Táimid go léir ag fáil Cárta Seirbhíse Poiblí go luath agus ba chóir go mbeadh siad réidh i bhfad sula rithfear an tAcht Fíocháin Daonna. Ba cheart go mbeadh UIN sa chárta seo freisin agus ba cheart é a úsáid chun na daoine aonair a aithint. Cuideoidh tabhairt isteach na gcód poist leis an bpróiseas freisin. Ar ndóigh ba chóir an dáta breithe a úsáid freisin. Níor cheart an deis an Cárta Seirbhíse Poiblí a úsáid mar aitheantóir le haghaidh deonú orgán dearfach a mheas faoina luach. Is acmhainn tearcfhorbartha é cód ceadúnais tiomána 115 freisin. (Cumann Duán na hÉireann)
Ní féidir córas chun iad siúd a roghnaigh an rogha a thaifeadadh a chur i bhfeidhm go sábháilte agus go hiontaofa mura bhfuil córas náisiúnta aitheantóirí ann. (HIQA)
Trí an fhaisnéis seo a aistriú go héifeachtach ó na foinsí éagsúla is féidir (ceadúnas tiomána, clár toghcháin, cártaí leasa). (Fondúireacht Ospís na hÉireann agus Comhairle Náisiúnta an Fhóraim um Dheireadh Saoil in Éirinn)
B’fhéidir go bhféadfaí rogha an diúltaithe a thaifeadadh ar chomhad míochaine nó d’fhéadfadh go mbeadh rud éigin ann a iompraíonn duine leo (cosúil leis an smaoineamh ar chárta deontóra). Cinnte ba chóir do dhuine atá ag iarraidh rogha an diúltaithe a neasghaol a chur ar an eolas. Go dtí go bhforbrófar córas náisiúnta, ba cheart go mbeadh drogall mór ar lia-chleachtóirí toiliú a thoimhdiú má tá aon éiginnteacht ann. Tá sé an-tábhachtach muinín an phobail a choinneáil. (James Daly)
Is léir nach féidir leat dul ar aghaidh mura bhfuil Clár agat. (An Dr David Honan, Ainéistéisí Comhairleach)
Trí leas a bhaint as córas mar www.donorconsent.com ar córas simplí é atá furasta le húsáid agus a forbraíodh in Éirinn. Cuireann sé toiliú uathúil grianghrafadóireachta ar líne agus toiliú neasghaolta ar fáil. Sa tsamhail seo, bailítear an fhaisnéis bhunúsach ar líne, ach coimeádtar toiliú cóip chrua go sábháilte as líne lena aisghabháil tapa. Is féidir iad seo a chur i láthair an neasghaolta ansin chun an cinneadh a chur i gcuimhne dóibh. Rinne na foirmeacha Next of Kin foráil freisin do spás chun nóta lámhscríofa a thaifeadadh do neasghaol an deontóra. (Gary Rutherford)
Trí bhunachar sonraí leictreonach, atá inrochtana go huilíoch ag dochtúirí agus cláraitheoirí in ospidéil na hÉireann (Joe Panama)
Is iad luas agus cruinneas an dá phríomhfhachtóir. Cruthaíonn brú ama agus an poitéinseal d’earráid dhaonna go háirithe nuair nach bhfuil aon neasghaol ag an duine éagtha agus chun toiliú a fháil uaidh - cruthaítear cé chomh iascach is atá an beart beartaithe seo toisc nach leigheasfaidh aon chúiteamh airgeadais ná leithscéal earráid shéadchomhartha orgán fómhair i gcoinne mianta sainráite an éagtha. (Gan ainm)
11. Má aimsítear go bhfuil orgáin a sholáthraítear faoin gcóras rogha an diúltaithe mí-oiriúnach le haghaidh trasphlandaithe, ar cheart go mbeadh na horgáin seo incháilithe le húsáid i dtaighde (a mbíonn toiliú sainráite de ghnáth ag teastáil uathu)
Ba cheart go n-áireofaí in aon phríomhreachtaíocht maidir le toiliú tagairt don fhéidearthacht toiliú le haghaidh taighde agus scriosadh ionas go bhféadfaí, nuair a fhaightear toiliú le haghaidh deonú orgán nó fíocháin, an úsáid fhéideartha le haghaidh taighde agus an fhéidearthacht aischuir a thoiliú ag an am céanna. (Bord Leigheasra na hÉireann)
I láthair na huaire, úsáidtear orgáin a fhaightear le haghaidh trasphlandúcháin a fhaightear mí-oiriúnach le haghaidh trasphlandaithe le haghaidh taighde nó déantar iad a dhiúscairt. Ba chóir a rá leis an teaghlach deontóra cé na horgáin a fuarthas agus nár úsáideadh. Sea is é freagra na ceiste iomláine. Ba cheart orgáin a sholáthraíonn aon chóras toilithe a úsáid le haghaidh taighde ach ba cheart an neasghaol a chur ar an eolas freisin mura ndearnadh orgáin a thrasphlandú sa deireadh. D’fhéadfadh sé go mbeadh sé níos deacra a n-úsáid a shuíomh nó nach bhfuil. (Cumann Duán na hÉireann)
Is saincheist ar leithligh é toiliú le taighde agus theastódh córas cuimsitheach uaidh chun toiliú a fháil ó dheontóirí agus neasghaolta, seachas an eisiúint reatha maidir le toiliú le haghaidh deonú orgán. (Fondúireacht Chroí na hÉireann)
Ba cheart go mbeadh toiliú sonrach roghnach ag teastáil chun orgáin a úsáid le haghaidh taighde. Má tá tuiscint ann go bhfuil toiliú an diúltaithe á úsáid chun orgáin a fháil le haghaidh taighde d’fhéadfadh sé an bonn a bhaint de thacaíocht an phobail do dheonú orgán. Ní tarrtháil díreach atá i dtaighde cosúil le deonú orgán agus tá riachtanas eiticiúil agus morálta difriúil sa chás seo. (Cumann Dianchúraim na hÉireann)
Ba cheart go leanfadh toiliú chun críocha taighde le reachtaíocht, treoirlínte náisiúnta agus idirnáisiúnta agus an fhianaise is fearr atá ar fáil. Níor mhór faisnéis maidir le deonú orgán agus a bhfuil i gceist leis seo go díreach, lena n-áirítear an cheist faoi cad a tharlaíonn d’orgáin a mheastar a bheith mí-oiriúnach chun críocha trasphlandaithe a mhíniú go sainráite mar chuid den fhaisnéis a chuirtear ar fáil do bhaill an phobail maidir le deonú orgán agus an rogha an diúltaithe. córas. Ba cheart go mbeadh faisnéis den sórt sin ar fáil i bhformáidí inrochtana / éasca le léamh. Éascóidh sé seo do bhaill an phobail cinntí lán-eolasacha a dhéanamh maidir le deonú orgán. (HIQA)
Níor cheart go mbeadh orgáin a mheastar a bheith mí-oiriúnach le haghaidh trasphlandúcháin incháilithe le húsáid i dtaighde ach má fuarthas toiliú sainráite. (Eagraíocht Leighis na hÉireann)
Ní dhéanfadh sé seo ach amhras an phobail a dhearbhú gur spreag leasanna Cógas-Eacnamaíocha agus taighde agus forbartha an AE an t-athrú beartaithe seo, agus gur thug brústocairí íoctha dlí agus míochaine é seo. (An Dr David Honan, Ainéistéisí Comhairleach)
Níl, ba cheart go mbeadh toiliú sainráite, taifeadta agus rian iniúchta ar fáil chun mí-úsáid agus scannail choinneála orgán a chosc. (Gary Rutherford)
Ba cheart toiliú sainráite a choinneáil do gach cineál taighde. (Gerard Menezes)
Ba cheart go mbeadh sé sin mar chuid den toiliú. D’fhonn gach rud a dhéanamh 100% soiléir. (Hazel Dunne)
Ní chreidim gur cheart go mbeadh orgáin atá mí-oiriúnach le haghaidh trasphlandúcháin incháilithe go huathoibríoch le húsáid i dtaighde gan toiliú an duine éagtha nó neasghaolta. (James Daly)
Sea. (Joe Panama)
Ní féidir agus níor cheart toiliú a dhiúscairt in imthosca ar bith. Má tá toiliú blaincéad á thabhairt ní mór dó a bheith iomlán agus eolasach le tuiscint ar na himthosca go léir ar féidir orgáin a úsáid lena n-áirítear le haghaidh taighde / tráchtála nó eile. Sa chás go bhfuil sé le húsáid le haghaidh taighde ba chóir go mbeadh sé ar fad faoi thuiscint ar ghalair agus faoi chúram othar agus ní trua mar atá sé inniu, gach eolas faoin PI agus a c (h) uid foirne agus an rás le bheith mar an chéad údar ar an bpáipéar. Ba chóir go mbeadh a fhios ag daoine a roghnaíonn an córas nua beartaithe seo go bhfuil siad ag roghnú úsáid a bhaint as trasphlandú agus mura bhfuil orgán / fíochán oiriúnach ansin aontú le húsáid le haghaidh taighde míochaine. Mura bhfuil daoine compordach le húsáid fhéideartha amháin nó eile ba chóir dóibh a neamhthoiliú a chlárú maidir le cibé úsáid - níl le taighde míochaine, níl má tá trasphlandú ann nó má tá trasphlandú ann agus níl le taighde míochaine, srl. (Gan ainm)
12. Cén fhaisnéis atá riachtanach a áireamh i bhfeachtas feasachta poiblí faoin gcóras rogha an diúltaithe maidir le deonú orgán?
Ba cheart go ndíreodh feachtas feasachta poiblí ar an ngá le deonú orgán agus na buntáistí tarrthála a sholáthraíonn sé. Ba cheart dó míniú iomlán a thabhairt ar bhrí an diúltaithe agus, b’fhéidir, d’fhéadfaí roinnt cásanna féideartha a úsáid mar léiriú. Ba cheart don fheachtas aird a tharraingt freisin ar na modhanna chun rogha an diúltaithe, agus chun tú féin a bhaint den chlár ag am ar bith amach anseo. Ba cheart aon chosaintí a mholtar, amhail ceart bhaill an teaghlaigh síntiús a chrosadh fiú mura bhfuil an deontóir liostaithe ar an gclár rogha an diúltaithe, a leagan amach go soiléir freisin. (Bord Leigheasra na hÉireann)
I dtosach beidh gá le feachtais sna meáin chun a chinntiú go bhfuil gach ball den tsochaí ar an eolas faoin athrú ar an gcóras toilithe. Tar éis na tréimhse tosaigh seo, tá cumarsáid leanúnach riachtanach chun a chinntiú go gcuirtear gach duine ar an eolas i gceart faoin gcóras, go háirithe daoine a shroicheann aois aibíochta agus daoine atá ag dul i mbun cónaitheachta in Éirinn. Ba cheart an córas oideachais a úsáid chun feasacht ar thairbhí síntiús do dhaoine aonair agus don tsochaí a chur chun cinn. Ba cheart don stát príomhghníomhaíochtaí le saoránaigh a úsáid chun feasacht ar an gcóras rogha an diúltaithe agus na buntáistí a bhaineann le deonú orgán a chur chun cinn, ie lena n-áirítear faisnéis faoin bhféidearthacht rogha an diúltaithe a dhéanamh le torthaí an Ardteistiméireachta, nuair a bhíonn daoine ag fáil / ag athnuachan a gceadúnas tiomána, nuair a chláraíonn daoine le dochtúir teaghlaigh, chomh maith le cumarsáid níos ginearálta a sholáthar faoi dheonú orgán ag foirgnimh phoiblí a bhfuil an-chos orthu agus i stáisiúin vótála. Ba chóir go mbeadh sé mar chuid thábhachtach den fheachtas feasachta teaghlaigh a spreagadh chun labhairt faoina mianta sula bhfaigheann siad bás. Caithfear gach feachtas feasachta a mheas chun a chinntiú go bhfuil leibhéal ard treá á bhaint amach acu i measc an daonra, chomh maith le bheith éifeachtach maidir le sonraí an chórais toilithe agus luach deonú orgán don tsochaí a chur in iúl. (Fondúireacht Chroí na hÉireann)
Tá sé i bhfad níos deacra feachtas feasachta poiblí don chóras rogha an diúltaithe a dhíol leis an bpobal ná an córas toilithe feasach. Iarradh ar 49 bliana daoine orgáin a bhronnadh agus anois tá sé beartaithe a rá leo gur féidir leo cur i gcoinne deonú orgán. Ba ghá an coincheap seo a mheas go cúramach mar tá an pobal níos amhrasaí faoi thoimhde i gcoitinne i gcomparáid le hiarraidh. Is é ár dtuairim gurb é seo an bhunchloch ar cén fáth nár cheart dúinn rogha an diúltaithe bog a úsáid mura bhfuil an córas i bhfad níos trédhearcaí agus go ndéanann údarás neamhspleách a bhfuil maoirseacht aige ar dheonú orgán bainistíocht ar imoibriú ó na hailt preasa a mbeidh scéalta diúltacha dosheachanta aige. Athróidh freagairt an phobail ar dheonú orgán go ceann amháin níos mó amhrais. (Cumann Duán na hÉireann)
Ba cheart go mbeadh faisnéis a chuirtear ar fáil maidir le deonú orgán agus an córas rogha an diúltaithe ar fáil i bhformáidí inrochtana / éasca le léamh do bhaill an phobail. Cé go mbeadh feachtas tosaigh faisnéise poiblí an-tairbheach b’fhéidir go gcaithfear nuashonruithe rialta a dhéanamh ar an bhfeachtas faisnéise poiblí tosaigh seo gach cúpla bliain chun an leibhéal feasachta agus tuisceana poiblí a choinneáil a bheidh ag teastáil chun go n-oibreoidh an córas rogha an diúltaithe. I measc na faisnéise a chuirfear in iúl mar chuid d’fheachtas faisnéise poiblí d’fhéadfadh:
Caithfidh croí-eilimintí an fheachtais feasachta poiblí díriú ar na príomhtheachtaireachtaí lárnacha le go n-éireoidh leo agus dá bhrí sin, ní féidir leo an fhaisnéis uile a sholáthar agus mar sin ba cheart dó gníomhú mar chomhartha chun daoine a threorú chuig an áit ar féidir leo tuilleadh faisnéise a fháil. Ba cheart d’fheachtas faisnéise poiblí an oiread bealaí cumarsáide agus is féidir a úsáid agus faisnéis a sholáthar i oiread formáidí inrochtana agus is féidir chun a chinntiú go gcuirtear baill an phobail ar an eolas faoi cad é go díreach atá i gceist le deonú orgán, na cinntí a chaithfidh siad a dhéanamh maidir leis an gcéanna agus conas rogha an diúltaithe más mian leo. D’fhéadfadh fógraí teilifíse, raidió agus nuachtáin a bheith san áireamh anseo, feachtas caidrimh leis na meáin lena mbaineann na meáin náisiúnta agus réigiúnacha, póstaeir agus bileoga a sholáthar i lialanna dochtúirí teaghlaigh, ospidéil, cógaslanna pobail, leabharlanna, Ionaid Comhairle Saoránach, i measc áiteanna eile agus chuig abhcóideacht agus cumainn othar chomh maith le grúpaí ábhartha eile. Comhpháirtíocht le grúpaí pobail ábhartha chun na teachtaireachtaí a chur in iúl don phobal, seastáin faisnéise a sholáthar ag mórimeachtaí ábhartha, agus mar sin de. Ba cheart faisnéis iomlán a thabhairt do gach gníomhaireacht ábhartha rialtais agus earnála poiblí freisin ionas go mbeadh a fhios acu cá háit ar chóir aon fhiosrúcháin a fhaigheann siad a threorú. (HIQA)
Caithfidh feachtas leanúnach sna meáin d’fhonn feasacht an phobail a ardú sáithiú a dhéanamh ar gach réimse den tsochaí, agus iad a chur ar an eolas faoi na fíricí agus na próisis a bhaineann le deonú orgán, mar aon le dearbhuithe go rachfar i gcomhairle lena dteaghlach agus conas a n-agóid a chlárú. Ina theannta sin, ba cheart feasacht ar dheonú orgán a thabhairt isteach sa timpeallacht oideachais, chun a chinntiú go bhfuil déagóirí a shroicheann aibíocht ar an eolas faoin bpróiseas, agus chun a chumasú dóibh rogha eolasach a dhéanamh nuair a bheidh siad níos sine. (Eagraíocht Leighis na hÉireann)
Cumas deonú orgán chun beatha a shábháil; an tábhacht a bhaineann le daoine a mianta a chur in iúl agus a chlárú go soiléir agus a ngaolta a chur ar an eolas lena chinntiú go bhfuil siad ar an eolas faoina gcuid roghanna. Tá leibhéil ísle feasachta ann maidir le deonú orgán agus conas a tharlaíonn sé. Taispeánann staidéir gur luaigh daoine a roghnaigh orgáin a bhronnadh a dtuairimí faoi theaghlaigh agus faoi chairde mar na tionchair is tábhachtaí ar a gcinneadh. Dá bhrí sin, ba cheart d’aon fheachtas feasachta poiblí iarracht comhrá poiblí a thosú faoi dheonú orgán agus na buntáistí a bhaineann leis. Foráiltear le hAcht Laoch New Jersey (2008) do thionscnaimh oideachais mar chuid éigeantach de churaclam meánscoile. Ba cheart go gcuirfí níos mó faisnéise ar fáil don phobal freisin faoi conas teacht ar thacaíocht méala. (Fondúireacht Ospís na hÉireann agus Comhairle Náisiúnta an Fhóraim um Dheireadh Saoil in Éirinn)
Conas rogha an diúltaithe; Cé chomh furasta is atá sé rogha an diúltaithe a dhéanamh; Athdhearbhú nach bhfuil aon dochar, pionós ná smachtbhanna ag baint le diúltú; Sonraí maidir le cúnamh le diúltú; Líne Chabhrach rogha an diúltaithe. (An Dr David Honan, Ainéistéisí Comhairleach)
Na rátaí síntiús, scéalta an tsaoil. Is é an rud is corraithí ná grá duine a fheiceáil beo mar dúirt duine maith éigin go bhfuil grá acu a n-orgán a bhronnadh. (Hazel Dunne)
Tá sé riachtanach go mbeadh a fhios ag an bpobal conas is féidir leo rogha an diúltaithe a dhéanamh go héasca. Tá sé riachtanach freisin síntiús a chur i láthair mar an “rud gnáth agus ceart le déanamh”. Ba cheart aird a tharraingt ar na buntáistí a bhaineann le síntiús agus ba cheart a chur ar a suaimhneas don phobal gur féidir leo muinín iomlán a bheith acu as an gcóras. Ba cheart go gcruthódh an feachtas feasachta poiblí gur féidir leis an bpobal muinín a bheith acu as an gcóras trí aird a tharraingt ar na nósanna imeachta a bhaineann le toiliú. (James Daly)
Go mbaineann sé le duine ar bith os cionn 18; Nuair is féidir leat rogha an diúltaithe a dhéanamh; Go díreach cad iad na horgáin / fíocháin is féidir a thógáil; Go díreach cad a d’fhéadfaí a úsáid dóibh; Cé a mbeidh rochtain aige ar an bhfaisnéis sin (Joe Panama)
Cúis le riachtanas orgán lena n-áirítear teip gach duine atá i bhfabhar glacadh leis go gníomhach go bhfuil cárta deontóra acu agus go gcuireann siad teaghlaigh, cairde agus daoine eile ar an eolas gur mian leo a bheith ina ndeontóir orgáin. Deir go leor go bhfuil siad i bhfabhar ach nach bac leo cárta deontóra orgáin a fháil. Poiblíocht a dhéanamh ar an bhfíric go bhfuil áis ann chun aitheantas a thabhairt don deontóir agus an gá atá le buíochas a ghabháil le teaghlaigh méala. Is comhartha simplí é a chiallaíonn an oiread sin. Sonraigh mura bhfuil sé oiriúnach le haghaidh trasphlandúcháin cad iad na húsáidí is féidir a bhaint as orgáin agus fíocháin taighde míochaine. Dá gcomhoibreodh taighdeoirí níos mó agus go roinnfeadh siad torthaí agus go n-áiríonn sé cógaisíocht, thiocfadh níos lú dúbailt dá bharr agus d’fhéadfaí úsáid níos fearr a bhaint as orgáin agus fíocháin. Ba cheart go dtabharfadh feachtas faisnéise aitheantas do ghnéithe tráchtála an taighde. Déan soiléir mura bhfuil aon neasghaol ar eolas agus mura bhfuil tuairimí an duine éagtha ar eolas, ní bhainfear aon orgán ná fíochán. (Gan ainm)
Aonad Beartais Ailse, Fola agus Orgáin
An Roinn Sláinte
Samhain, 2013
Córas Toilithe Optamaithe le haghaidh Deonú Orgán a thabhairt isteach
Baineann an doiciméad comhairliúcháin seo le tograí nua maidir le deonú orgán ag daoine nach maireann.
Cuireann trasphlandú orgán blianta saoil chomh maith le cáilíocht na beatha d’fhaighteoirí orgán. Go híorónta, áfach, mar gheall ar a rath, tá ganntanas orgán in Éirinn agus ar fud na hEorpa, agus mar sin méadaíonn sé an gá le tabhairt faoi níos mó síntiús agus nósanna imeachta trasphlandaithe.
In 2012, fuarthas 78 deontóir marbh san iomlán agus fuarthas 244 orgán dá bharr. Is ionann é seo agus ráta deontóra de 17.03 in aghaidh an mhilliúin daonra (pmp). I gcomparáid leis sin, bhí ráta 35.3 pmp ag an Spáinn (in 2011) agus bhí ráta 17.4 sa Ríocht Aontaithe in 2012. Tá thart ar 650 duine ar liostaí feithimh trasphlandaithe orgán.
I bhfianaise ganntanas na n-orgán atá ar fáil in Éirinn lena dtrasphlandú, tá sé tábhachtach go ndéanfaimis mar shochaí gach is féidir linn chun líon na n-orgán atá ar fáil le trasphlandú a mhéadú. Cuid ríthábhachtach de seo is ea tógáil ar an dearcadh dearfach reatha i leith deonú orgán. Sa chomhthéacs seo, tá an Clár Rialtais tiomanta do chóras rogha an diúltaithe a thabhairt isteach maidir le deonú orgán, d’fhonn infhaighteacht orgán a fheabhsú d’othair a bhfuil trasphlandú de dhíth orthu.
In Éirinn faoi láthair, nuair a shainaithnítear deontóir orgáin ionchasach, iarrtar ar theaghlach an duine a dtoiliú chun go bhféadfar deonú orgán a dhéanamh. Tugtar toiliú “sainráite” air seo nó próiseas “rogha an diúltaithe” chun a bheith i do dheontóir orgáin. Is é sin le rá, is faoi theaghlach an duine nach maireann an rogha agus an cinneadh a bheith i do dheontóir orgáin.
Tá sé i gceist ag an rialtas anois an córas toilithe seo a athrú go ceann de thoiliú diúltaithe. Is é a bheidh i gceist leis seo go praiticiúil ná nach mbeidh ar na gairmithe sláinte lena mbaineann toiliú sainráite theaghlach an duine nach maireann a lorg go gníomhach le haghaidh deonú orgán. Ina áit sin, measfar toiliú mura rud é go bhfuil an duine cláraithe, más mian leis, gan a bheith ina dheontóir orgáin tar éis bháis. Tugtar “rogha an diúltaithe” air seo. Mar sin féin, moltar, cé go meastar toiliú, go rachfar i gcomhairle leis an teaghlach i gcónaí sula mbaintear aon orgán amach agus má dhéanann an teaghlach agóid i gcoinne an deonaithe orgán, ní rachaidh an síntiús ar aghaidh. Is é seo an córas rogha an diúltaithe “bog”.
Tá an roinn ag ullmhú tograí reachtacha faoi láthair maidir le Bille Fíocháin Daonna a dhéanfaidh reachtaíocht chun toiliú a thabhairt chun orgáin agus fíocháin a bhaint, a choinneáil, a stóráil, a úsáid agus a dhiúscairt ó dhaoine nach maireann i gcomhthéacs iarbháis, trasphlandú, taighde nó scrúdú anatamaíoch. Leagfar amach sa Bhille Fíocháin Daonna creat toilithe mionsonraithe freisin maidir le deonú orgán agus fíochán ag daoine beo le haghaidh trasphlandaithe agus taighde.
Tionóladh comhairliúchán poiblí in 2009 ag lorg tuairimí ar an gceist maidir le cén córas toilithe le haghaidh deonú orgán ba chóir d’Éirinn a ghlacadh maidir le deonú orgán ag daoine nach maireann. Lorgaíodh tuairimí páirtithe leasmhara ar thrí chóras - rogha an diúltaithe (an córas reatha), rogha an diúltaithe agus an rogha sainordaithe / an iarraidh riachtanach.
Cé gur shocraigh an rialtas ag an am dul ar aghaidh leis an mBille Fíocháin Daonna ar bhonn an chórais reatha toilithe a choinneáil i.e. rogha an diúltaithe, tá an Clár Rialtais tiomanta do chóras toilithe diúltaithe a thabhairt isteach.
De ghnáth bíonn rátaí deonaithe orgán níos airde ag tíortha a oibríonn córas rogha an diúltaithe. Tá Éire i measc mionlach de Bhallstáit an AE, lena n-áirítear an Ríocht Aontaithe, an Ísiltír agus an Ghearmáin nach n-oibríonn córas rogha an diúltaithe.
Tá a fhios ag an roinn nach bhfuil i athrú an chórais toilithe ach gné amháin i bpacáiste beart a theastóidh chun rátaí deonaithe orgán a mhéadú. Maidir leis seo, tá an roinn, i gcomhar le hOifig Náisiúnta um Dheonú agus Trasphlandú Orgán FSS, ag smaoineamh ar na cleachtais agus na hathruithe eagraíochtúla, mar aon le hathrú ar an gcóras toilithe, a d’fhéadfadh rátaí síntiús sa tír seo a fheabhsú tuilleadh.
Mura mian le duine a bheith ina dheontóir orgáin tar éis bháis, beidh orthu agóid fhoirmiúil a chlárú le linn a shaoil - próiseas ar a dtugtar rogha an diúltaithe. Os a choinne sin, más mian le duine a bheith ina dheontóir orgáin tar éis bháis, ní gá dóibh beart a dhéanamh le linn a shaoil.
Beidh ról tábhachtach fós ag teaghlach an duine nach maireann nó neasghaol sa phróiseas deonaithe orgán. Cé nach gceanglófar ar an neasghaol a dtoiliú a thabhairt don síntiús féin, rachfar i gcomhairle leo agus iarrfar orthu an oiread faisnéise agus is féidir a sholáthar ar stair mhíochaine agus shóisialta an duine. Mar a dúradh cheana, tá sé beartaithe, i ndáiríre, nach mbeadh aon chás ann ina leanfaí le deonú orgán i gcoinne mhianta neasghaolta an duine nach maireann. Tá sé beartaithe freisin go n-áireofar cosaintí sa reachtaíocht chun grúpaí leochaileacha sa tsochaí a chosaint.
Mar sin d’fhéadfaí cur síos ar an gcóras atá le tabhairt isteach mar chóras “rogha an diúltaithe bog”.
Tar éis an reachtaíocht a achtú, measfar gach duine os cionn 18 mbliana d’aois a chónaíonn agus a fhaigheann bás in Éirinn mar dheontóirí orgán ionchasacha mura roghnaíonn siad amach ar feadh a saoil. Beidh ar dhuine a bheith “ina chónaí go hiondúil” in Éirinn ar feadh 12 mhí nó níos mó chun go mbeidh feidhm ag an dlí nua toilithe diúltaithe. Tar éis na tréimhse seo, measfar gur thug daoine a dtoiliú le síntiús, mura ndúirt siad cheana nár theastaigh uathu a bheith ina ndeontóir.
Ní mheasfar gur thoiligh gach duine a fhaigheann bás in Éirinn deonú orgán. Ní bheidh feidhm ag na socruithe rogha an diúltaithe atá beartaithe maidir le leanaí (i.e. daoine faoi 18 mbliana d’aois) nó maidir le daoine a bhí ina gcónaí in Éirinn tráth a mbáis ach nach mbíonn ina gcónaí de ghnáth sa tír seo. Leagfaidh an Bille Fíocháin Daonna forálacha toilithe ar leithligh amach do dhaoine den sórt sin. Ina theannta sin, b’fhéidir go mbeidh gá le socruithe oibríochta chun tacú le roinnt grúpaí cinneadh a dhéanamh.
Is mian leis an roinn cuireadh a thabhairt do pháirtithe leasmhara a dtuairimí a chur isteach ar na gnéithe praiticiúla a bhaineann le córas toilithe diúltaithe a thabhairt isteach maidir le deonú orgán.
Ba mhaith leis an roinn do thuairimí ginearálta a chloisteáil ach ba mhaith léi go háirithe do thuairimí ar na ceisteanna seo a leanas:
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