Dinny McGinley (Donegal South West, Fine Gael) | Oireachtas source

I thank the Senator for raising the matter on the Adjournment. I am taking the Adjournment matter on behalf of the Minister for Health, Deputy James Reilly. He would also like to thank the Senator for raising the matter as it provides me with an opportunity to update the House.

In late 2009 the Data Protection Commissioner received a complaint from a member of the public on the retention of newborn screening cards. The basis of the complaint, which was upheld by the Data Protection Commissioner, was that newborn screening cards should not be retained indefinitely without consent as this breached the Data Protection Acts 1998 and 2003. As the Data Protection Commissioner said "it is important to make clear that the position that developed was unlawful and could not be allowed to continue". There followed a series of meetings between the Deputy Data Protection Commissioner, representatives from the Department, the HSE and the Children's University Hospital, Temple Street. This resulted in a number of changes to the national newborn blood spot screening programme. These changes included obtaining written consent from the mother to have her newborn child screened, retention of the newborn screening card for ten years and retention of information on the result for 25 years. During those ten years the card can only be used for checking the results or for other tests recommended by the child's doctor and for which the parent's or parents' permission will be sought, and quality assurance to develop and improve the screening programme and the health of babies and families in Ireland.

It was also decided to destroy existing cards that are older than ten years. It must be remembered that there is no written consent from parents for the retention or use of these newborn screening cards taken between 1984 and 2002 for research, or other, purposes.

Following representations from a number of people and organisations, who pointed out their potential value for research my colleague, the Minister for Health, Deputy James Reilly, requested the HSE to conduct a review of the decision to destroy these cards. The review examined both the legal and ethical basis for retention of newborn screening cards and the potential use of the existing cards for research purposes. The report and recommendations of the review group were submitted to the Minister in January 2012. The review group supported the decision to destroy cards more than ten years old. Following careful consideration this recommendation was accepted. I must emphasise that this decision was taken to ensure that the HSE and the children's university hospital meet their ethical and legal obligations under the Data Protection Acts.

However, the review group explored how the cards could be made available to the research community in a way which is compatible with ethical and legal obligations. In line with its recommendations, the HSE has begun an information campaign offering people the opportunity to have their screening card returned to them, prior to any cards being destroyed. This will ensure that anyone who wishes to donate newborn screening cards for research will be afforded the opportunity to do so. We must ensure continued public trust and support for the national newborn screening programme, a vital public health measure for children and their families.