Following a complaint made to the Data Protection Commissioner in 2009, the State was found to be in breach of both EU and national data protection legislation in relation to the retention of newborn screening cards without consent.
A policy was developed to review and address the legal and ethical requirements arising for the National Newborn Bloodspot Screening Programme. This came into operation in July 2011.
This policy now incorporates parental consent for the primary use of screening (a baby) for 8 rare conditions. The policy also allows the card to be retained for a specific period of 10 years before disposal. Any secondary use (including research) requires additional and explicit parental consent for that specific secondary use.
A decision in relation to the archive of blood spot screening cards retained without consent (1984-June 2011) is well advanced. There are a number of component parts to be factored in when coming to a reasonable, fair and balanced decision. Firstly we must acknowledge the significant initiatives that have been completed including the public information campaign in 2013 offering individuals the opportunity to request and have their card returned to them and secondly the deliberations and report of the Forum held in 2016.
We have all learned a lot about the complexities of screening programmes over the last 18 months and the importance of public trust. That is now, for me, the most important influencing factor and as such the decision in relation to the archive must be one that protects the future uptake, integrity and confidence in the national newborn bloodspot screening programme, a screening programme with a 99.9% uptake. The decision must also balance the right to privacy with the principle of consent and ensure we seal the breach of national and EU Data Protection Regulations.