Friday, 6 September 2019

Questions (907)

Catherine Murphy


907. Deputy Catherine Murphy asked the Minister for Health if he has considered the options paper supplied to him by his officials in the context of the newborn screening card archive forum 2016; the policy decision he has taken since 2017 in this regard based on the options paper; and if he will make a statement on the matter. [35199/19]

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Written answers (Question to Health)

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.