Catherine Murphy (Kildare North, Social Democrats)
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906. To ask the Minister for Health the level of access a company has to Guthrie cards in the archives of Temple Street Hospital; if he has granted the company access and-or view and-or use of Guthrie cards for purposes in each of the years 2016 to 2018 and to date in 2019; if so, the name of the companies; and if he will make a statement on the matter. [35198/19]

Simon Harris (Wicklow, Fine Gael)
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The policy for the National Newborn Bloodspot Screening Programme requires parental consent for the primary use of screening (a baby) for 8 rare conditions. Any secondary use (including research) requires explicit parental consent for that secondary use.

Commercial companies are not given access to Guthrie cards.

Catherine Murphy (Kildare North, Social Democrats)
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907. To ask 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]

Simon Harris (Wicklow, Fine Gael)
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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.