Senator Daly calls on the Minister for Health to allow information sharing to help Organ Donation

Needless to say, I am disappointed that the Minister of Health is not here to discuss the issues of organ donation and organ donor awareness. The Minister for Transport, Tourism and Sport, Deputy Ross, was also unable to come to take this matter. It is a matter of life and death for some. The specific issue I raised last year has not been advanced by either Minister. I thank Mr. Mark Murphy of the Irish Kidney Association for coming to listen to the response that will be given by the Department of Health, if not the Minister.

On 13 March I asked for the Minister for Transport, Tourism and Sport to come to the House in order that we could find out why he had not signed the statutory instrument to allow the HSE access to the driving licence registry to see the names of people who had indicated on their driving licence that they would like to be an organ donor. He cited two reasons on that occasion, one of which was related to the issue of data protection under EU law, while the other was Brexit. He was too busy in dealing with it. In May 2018 we informed him that, according to research conducted by the Oireachtas Library and Research Service, he was able to share the data. The Schedule to the legislation could be amended to allow the Minister for Transport, Tourism and Sport, under section 63 of the Finance Act, to make a regulation to make the database available. When the Minister, Deputy Ross, told us that he was not able to share the information because of EU data protection law, he was not aware that the previous Minister, Deputy Donohoe, had shared data in the driving licence registry with everybody, from car manufacturers to the Health and Safety Authority, the Motor Insurance Bureau of Ireland, eFlow, a private company, the Road Safety Authority, the National Transport Authority, the National Consumer Agency and the local authorities. People approved by the Department of Transport, Tourism and Sport, commercial services and the office of the provost marshal of the military police have access to it. Tribunals of inquiry also have access to it, as do the Office of Official Assignees in Bankruptcy and the Courts Service, yet the HSE and the national transplant authority do not.

We asked the Minister to come in again and he has not shown up today but he replied on 22 March that it is not a data protection issue and the issue is the Department of Health has not requested that the national organ transplantation unit have access to information from the driver’s licence registry. A year ago, the Minister for Transport, Tourism and Sport, said that he would ask the HSE to give me its views and see if progress can be made in a constructive way. Has the Minister for Transport, Tourism and Sport engaged with the HSE on this issue and when will he be asked to sign the statutory instrument that will allow the HSE to have access to the drivers licence registry so that people will know if their loved ones want to be an organ donor?

It should be borne in mind that figures supplied by the Irish Kidney Association to me show that when asked by a professional in organ co-ordination and transplantation if they would consider donating their loved one’s organs, the figure internationally is approximately 52%. When supplied with information that their loved one wanted to be an organ donor, the organ donor rate in families increases to 92%. The only place we currently have a registry is in National Driver Licence Service. I have outlined all of the other organisations that have access to this registry. The Minister for Transport, Tourism and Sport is clearly blaming the Minister for Health and his Department by saying that they quite simply have not asked for this information.

Will the Department of Health ask the Minister for Transport, Tourism and Sport for this information in order that it will be available to healthcare professionals, organ donor co-ordinators and the families of the donors so that they can make an informed decision when considering to donate organs?

I thank the Senator for raising this issue and for the opportunity to speak on it in the Seanad on behalf of my colleague, Minister for Health.

It is appropriate that we are debating this issue during Organ Donor Awareness Week.

Organ donation is among the most selfless acts we can bestow on one another. The improvement in the quality of life for organ recipients and their families cannot be overstated. We have a duty to do everything we can to ensure that as many people as possible benefit from organ donation. Work is continuing to finalise the general scheme of a Human Tissue Bill and to deliver on the commitment in the programme for Government to provide for a soft opt-out system of consent for organ donation and an associated register.

The aim is to make organ donation the norm in Ireland in situations where the opportunity arises. Under the soft opt-out system, consent will be deemed, unless the person has, while alive, registered their wish not to become an organ donor after death. However, it is proposed that even though consent is deemed, the next-of-kin will always be consulted prior to removing any organ. If the next-of-kin objects to the organ donation, the donation will not proceed. The best way to ensure that a person’s wish to become an organ donor is realised is to have a conversation with one’s family and to make one’s wishes clearly known to them.

The proposed opt-out register for organ donation will create a clear and easily communicable choice to individuals to either opt-out of deceased organ donation entirely, or to allow deemed consent to apply. Signing up to the opt-out register will be a definitive expression of the person’s wish not to become an organ donor after death.

The Senator’s proposal to share code 115 on a driver’s licence in respect of organ donation with the HSE’s Organ Donation and Transplant Ireland would not guarantee that the person’s wish to become an organ donor would be carried out. This is also the situation in regard to organ donor cards. The decision to donate organs in the case of a deceased person rests with the next of kin. Health service personnel will not proceed to transplant organs without the permission of family members, irrespective of whether the deceased person carried an organ donor card or had ticked code 115 on their driving licence.

Furthermore, due to the need for medical practitioners to be informed about the medical history of the potential donor to ensure the safety of the recipient, the co-operation of the family will always be required as part of a safe organ donation process. An opt-out register will make organ donation the clear default option, and signal to citizens the move towards organ donation being the norm. The general scheme of a human tissue Bill is being finalised at present and will be submitted to Government shortly.

I do not want the Minister of State to take this personally, if that is not the worst answer I have heard to a question put in the Seanad, it is fairly close.

Some 1 million people in this country have registered that they would like to be to be organ donors. That information is available in the Government system. This will increase organ donor rates from 52% to 92% if the family are informed that their loved one wants to be an organ donor. The Government is saying it will not do this and make this information available to families, the health services or doctors and nurses so that families can be assisted in making one of the most traumatic decisions that anyone can ever make. When people sign up for a driver’s licence and indicate that they want to be an organ donor, they want to share that information.

The Minister for Transport, Tourism and Sport is saying that it is available to the HSE if it asks. What the HSE, the Department of Health, the Minister for Health and the Minister of State are saying is that they do not want this information to be available to the doctors, nurses and the families.

As I stated earlier, this is not the worst reply I have ever heard in this House but it is pretty close. People are dying as they await organ transplants. It is costing the State hundreds of millions of euro in dialysis and so on with people waiting in the system and taking up beds. That is not the reason we should do it; the reason we should do it is it would save lives. If making that information available saved one life, would it not be worth doing? Yet the Department of Health is saying that it does not want this.

Has the Senator a question?

This is not the worst reply but it is pretty close.

I have no interest in engaging with the Senator in the politics that he wants to engage in on this issue. I want to distance myself from his interpretation of what I have said in suggesting that the Minister, the Department or I do not want this to proceed. He knows this is only playing politics with the issue and if he wants to do that, that is fine.

Let me be clear, I am not playing politics. This is not party politics or political—–

The Senator had an opportunity to put a supplementary question and he is being disorderly now.

—–but is about people who are waiting for organs. The Minister of State is just reading a reply—–

The Senator knows that he is not allowed to interrupt and he will have to find another way of pursuing this further. He is out of order.

—–that is prepared by the Department and I am just saying it is a terrible reply. Is that going to help somebody waiting on the transplant list?

I ask the Senator to please resume his seat and not to abuse this House.

I am not abusing this House. That reply is one of the worst I have ever heard.

I ask the Senator to resume his seat and obey the Chair. That is his opinion and he is entitled to it. I call the Minister of State again, without interruption.

The Government is totally committed to increasing organ donation and transplantation rates to the benefit the patients and their families. We welcome the Senator’s support for our efforts to increase the rate of deceased organ donation. Deceased organ donation, however, cannot proceed without the support of next of kin, as I outlined in my previous contribution, even in circumstances where the deceased person had an organ donor card or had indicated his or her wish to be an organ donor on his or her driver’s licence. The Minister’s proposals to introduce a soft opt-out system of consent for deceased organ donation are one of a number of measures being taken to increase transplant rates. The Department continues to work with HSE’s Organ Donation and Transplant Ireland, intensive care units, ICUs, and the transplant hotels, which are Beaumont, the Mater and St. Vincent’s hospitals, in building upon the achievements of recent years.

Improvements to our organ procurement service will continue to be achieved through improved infrastructure in ICUs, a more robust organ retrieval service, and through transplant centres achieving high conversion rates from opportunities that are presented. The legislation will be accompanied by a publicity campaign which will aim to ensure that individuals understand the opt-out system and to encourage individuals to have the conversation and make their wishes on organ donation known to their next of kin and to other family members.

Finally, I encourage everybody to consider becoming an organ donor and to make their loved ones aware of their intention in this regard.

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