Speech- Senator Daly calls on Minister Ross to allow organ donation information sharing

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.

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