In late 2009, the Data Protection Commissioner received a complaint from a member of the public regarding the retention of newborn screening cards. The basis of the complaint, which was upheld by the DPC was that newborn screening cards should not be retained indefinitely without consent as this breached the Data Protection Acts 1998 and 2003. As the Commissioner said ..."it is important to make clear that the position that developed was unlawful and could not be allowed to continue".
Following meetings between the Deputy Data Protection Commissioner, officials from my Department, the HSE and the Children's University Hospital, Temple Street a number of changes to the National Newborn Screening Programme were agreed including obtaining written consent from the mother to have her new born child screened, retention of the newborn screening card for ten years and the retention of information on those cards for twenty five years. It was also agreed 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 the potential value of the cards for research, I 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 including the potential use of the cards for research purposes. The Review Group supported the decision to destroy the cards and following careful consideration I accepted the Group's recommendation. 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 also explored how the cards could be made available to the research community in a way which is compatible with legal and ethical obligations.
In line with its recommendations, the HSE has been running an information campaign offering people the opportunity to have their screening card returned to them, prior to any cards being destroyed. This campaign is due to end on 31 March 2013, after which any remaining unclaimed cards are scheduled to be destroyed. This will ensure that anyone who wishes to donate newborn screening cards for research will be afforded the opportunity to do so. I am seeking information from the HSE as to the effectiveness of their campaign to ensure people have been adequately informed about their rights.