Wednesday, 2 October 2019
Department of Health
Health Screening Programmes
194. To ask the Minister for Health the steps he has taken to preserve the archive of blood spot screening cards retained without consent between 1984 and 2011 which could provide a lifesaving diagnosis for a large number of at risk family members of sudden cardiac death victims that died within this timeframe; and if he will make a statement on the matter. [40143/19]
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.
Specifically, this policy requires 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. Any secondary use (including research) requires explicit parental consent for that secondary use.
A decision in relation to the archive of blood spot screening cards retained without consent (1984-June 2011) is well advanced and I expect this to be finalised in the coming months.