Aengus Ó Snodaigh (Dublin South Central, Sinn Fein) | Oireachtas source

The petitioner has raised quite a number of issues on data protection. HIQA has published its own draft report entitled, Draft National Standard Demographic Dataset and Guidance for use in health and social care settings in Ireland, which is open for public consultation at the moment. It is a very tight timeframe because 12 April is the deadline for consideration and feedback. I suggest that, as we will not achieve that deadline in this instance, we should write to HIQA making it aware that we are beginning deliberations on this petition. We should ask that prior to HIQA finalising its report, as well as the White Paper or whatever comes from this report, HIQA should take into consideration the points we are raising. We should contact HIQA on an ongoing basis as we progress with this.

It is frightening what can be done with data that is stored electronically. It can be circulated quite quickly. If people have the computer programmes to interrogate data when it comes back, one can then undo some of the anonymising of data that is supposed to occur. We need to protect against that, especially where the consent of the person involved has not been given, as is the case with most of the health data in this country.