HSE Forum votes to retain Guthrie Cards

Motion: “To call on the Minister for Health & the Department of Health not to proceed with their plans to destroy upwards of 1 million Guthrie cards, after 31st March, 2013, that are used to store samples taken under the National New-born Bloodspot Screening Programme (Heel Prick Test), which screen for inherited disorders and help modern medical research in identifying genetic components in many diseases.”

Cllr. Bill Tormey

Response:

The HSE and the Department of Health announced in January that an archive of newborn bloodspot screening cards dating from 1984-c.2002 is to be disposed of to meet Data Protection regulations. The screening cards relate to the National Newborn Bloodspot Screening Programme, which tests all newborn infants for a range of conditions.

The test, commonly known as the Heal Prick Test, is usually carried out 3-5 days after birth, and takes a small blood sample via a prick to the baby’s heel. This sample is collected on a screening card and tested for the following conditions: Phenylketonuria, Cystic Fibrosis, Congenital Hypothyroidism, Classical Galactosaemia, Homocystinuria and Maple Syrup Urine Disease.

Newborn screening cards are then stored, primarily to allow for follow up tests that may be requested by the child’s family doctor or their medical team during childhood. The screening programme was updated in July 2011, and since that date all parents now give consent for the newborn screening cards to be stored and then disposed of during the child’s 11th year, when the need for follow up tests for that child has reduced significantly. Archived sample cards that are more than ten years old and date from the 1980’s to 2002 will be disposed of in 2013 to meet Data Protection requirements.

Any person who prefers that their newborn screening card is not disposed of can have their card returned to them.

A simple application form can be downloaded from the website www.newbornscreening.ie and posted to the screening programme along with the relevant identification.

The newborn screening card will be retrieved from the screening card storage as soon as possible and returned. The timeframe for returning cards will depend on the volume of requests, but we anticipate that this process will be ongoing until mid 2013. Cards can be requested by the parent of the infant screened.

If the infant screened is now over 18, the card can be requested by themselves, or by their next-of-kin if they are deceased. Screening Card return requests must be received by 31st March, 2013.

A parent with privacy concerns about he continued storage of a card collected from 2002 – July 2011 can request that their card is disposed of at anytime using the same contact details.

The disposal of remaining cards will take place after all card return requests have been fulfilled. Forms to request a newborn screening card return or disposal are available on www.newbornscreening.ie or by calling 1850 24 1850.

Some Irish health research and patient organisations have in the past expressed an interest in accessing and storing newborn screening cards to further their research into health conditions. The HSE and Department of Health have no objection to this, but within Data Protection regulations cannot continue to act as a repository for screening cards. The HSE has invited a range of health organisations to submit details of governance arrangements for such storage or research uses for screening cards. Where parents provide the HSE with explicit written consent, and where appropriate storage and governance arrangements are in place, cards can be forwarded to such organisations. More details on this option will be posted on www.newbornscreening.ie as the HSE receives proposals from research organisations.