Mark Daly (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I thank my county colleague for coming before the House to take this matter on behalf of the Minister. I raised it over six months ago and I raise it again today. Two weeks ago, I tabled the matter for a Commencement debate and then received a reply by email from the Minister. He was only able to come in on that occasion. In the reply to which I refer, he explained why it is not possible for his Department to share on driver licences held by people in this country information to the effect that they want to be organ donors. A person is asked this question as part of the application process, and the response is printed on the licence in the form of a code, 115, which indicates that the person wants to be an organ donor. The Minister stated that under EU rules on data protection, we would need the permission of applicants to share their data. He also indicated that the difficulty was that people had not been asked if they were willing to have this data shared with a third party such as the HSE and that it would not be possible to share it without their consent. He was obviously unaware that he had already allowed his Department to share data from the driver licence registry with private companies such as eFlow and people who clamp vehicles. The Department had also shared the data with the Garda and the Courts Service, as it should have done. However, he stated at the time that data protection rules would not allow him to share the data with the HSE. That was not true. I have with me a copy of the statutory instrument that would allow him to share the data with the HSE. He has signed similar instruments for all the other bodies, including the courts, clamping companies and private operators such as eFlow to which I referred.

We have discovered from the Irish Kidney Association that sharing these data with healthcare professionals is important because of their ability to share the data with the families of loved ones who are potential donors. Only approximately 300 families find themselves in this situation in any given year. If specialist nurses are not involved in talking to families, only 22% will offer their loved ones' organs to be donated. If, however, a specialist nurse who is a transplant co-ordinator asks a family, the figure increases to 52%. Furthermore, if the family is informed, and it is shown, that their loved one wanted to be an organ donor, this increases to 92%. We would therefore go from about 50-50 to 92% if the Minister would only sign the statutory instrument to allow the HSE access to this information. Since we have highlighted this issue in the media, the change in the Minister's response has been interesting. At first he stated that because of European rules, he cannot share the data. Then it was pointed out that actually he had shared the data already. He has now come back with a new reply stating it is up to the Department of Health to ask for the data.

Our request, and I hope the Cathaoirleach will allow it, is that during Organ Donor Awareness Week, which is next week, the Minister for Health come in and indicate why he has not requested the information from the Minister for Transport, Tourism and Sport. Perhaps the Minister of State might use his good offices to ask that this simple process whereby the Department of Transport, Tourism and Sport would share the data and the Department of Health would ask for the data be followed in order that when families are faced with the traumatic situation whereby they lose a loved one, they would have the information at hand to the effect that their loved one wanted to be an organ donor. The number of people who have indicated on their driver licences that they want to be organ donors is reaching 1 million. This information is available to everyone else - clampers, the courts and the Garda - but it is not available to the families of the loved ones facing a decision that is traumatic and extreme but that can transform and save the lives of many people.

Brendan Griffin (Kerry, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I thank Senator Mark Daly for raising this matter. In fairness, he has been pressing the issue of organ donation for a number of years and has been very passionate about it. I commend him on his work in respect of the matter. As we know, organ donation saves many lives and is critically important. Again, I convey the apologies of the Minister who cannot be here.

As the Senator stated, in replies given to him last May, the issue of the general data protection regulation, GDPR, and data protection in general were raised as being an impediment to progress being seen on this matter. One of the issues about which the Minister is concerned is that we need to be very careful about this. One of the suggestions is that it may be possible to add a question to the application form asking whether people consent to the sharing of the information. As a licence is valid for ten years, it would then take a decade to work through the system to cover everyone in this regard. As for the HSE and the Department of Health, there is a significant body of work to be done before it can be established whether the statutory instrument to which the Senator referred could be effective. If it is intended that the HSE could look up lists of potential organ donors, for example, where a patient died and the HSE wanted to know quickly if the patient had signed up to be a donor, there could well be benefits. However, the Minister still needs to hear the HSE's views on this, as well as those of the Road Safety Authority, RSA, before he can take action. There are at present many pressing issues within the Department, particularly in the context of Brexit. As acknowledged since last May, this matter has not received the priority or attention it needs in view of the other constraints currently affecting the Department. However, I will go back to the Minister on the specific question of the statutory instrument to which the Senator referred - perhaps he could give me a copy of it - and ask him to look particularly at the legal issues surrounding it.If it is the case that a simple statutory instrument, if signed, would address this issue, that would be a major step forward. I will commit to see if we can make progress on it. None of us knows who will be affected by this or whose life could be saved in the short term as a result. This is deserving of further scrutiny and attention, and if a quick solution can be found here, that would be major progress.

Denis O'Donovan (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I rarely comment on these matters. I am aware Brexit is a headache for the Government, for Westminster and for much of Europe, and it is an important issue of State, but comparing this matter, which is one of life and death, to Brexit is a difficult one to swallow having regard to the issue.

Mark Daly (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I am glad the Minister of State did not read out the full reply, which, I know, was not written by him. It is ridiculous to say that under current EU rules on data protection we need the permission of the applicant to share the data because the Minister has already shared the data with eFlow, the courts and the Garda. The Minister can do it, and has done it.

I refer to the Minister giving the reply he gave two weeks ago. It is different from the reply he gave last Friday, 22 March in which he stated he had not been asked for it, which I accept. We are making progress. The Minister is still unaware he is sharing the data already. It is unfortunate that the Minister is unaware that he has signed the statutory instrument for private companies to have access to that data.

People indicate they want to be organ donors because they want others to know. They do not want it to be a secret. That is why it is there to be shared.

The issue for next week - hopefully, the Cathaoirleach will allow the debate - is for the Minister for Health to come in and ask why we have not asked for the data. In essence, the Minister is acknowledging that he will share the data if he is requested to do so by the Department of Health. It is obviously of concern to the Minister that what the Department of Health does with it is appropriate. He outlined that it would be the national transplant unit of the HSE, if it makes a formal application, and how that information would be used and how it would be accessed by healthcare professionals.

To use data protection as an excuse when the Minister has already shared this data from the driver licence with others is not an acceptable answer as to why there is inaction. People die on our transplant waiting list because there are not enough organs. It is a systems failure. Countries such as Croatia and Spain have surplus organs because they have better systems. This will help. If it saves one life, it is worth doing.

Denis O'Donovan (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

One cannot shoot the messenger. The Minister of State has given a commitment that he will go back to the Senator.

Mark Daly (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I am not shooting the messenger.

Denis O'Donovan (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I am sure, too, he will be heading for Croke Park on Sunday.

Brendan Griffin (Kerry, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I may fire a few shots over the Senator's head, though.

Denis O'Donovan (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I am sure the Minister of State and the Senator will head for Croke Park on Sunday with linked arms. I would suggest the Minister of State has made a commitment that he would go back to the Senator.

Brendan Griffin (Kerry, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I commit to going back on that issue, specifically the statutory instrument.

Denis O'Donovan (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

As next week is Organ Donor Awareness Week, no doubt Senator Mark Daly will raise it. I do not have total discretion on what I can allow or not. It is something on which progress could be made for humane reasons.