Yesterday, the Health Service Executive was instructed to reverse its decision to destroy blood samples taken from newborn babies, which are known as heel-prick tests. The heel-prick tests are tests which are carried out on all babies shortly after birth to screen for genetic diseases. Unclaimed samples taken from children between 1984 and 2002 had been set to be destroyed prior to the reversal of the decision. This announcement comes after numerous weeks of pressure on Minister for Health James Reilly by the Irish Heart Foundation and other health professionals stating that the DNA database was priceless.
The origin of the decision to destroy the database was based upon a complaint made by an individual to the Data Protection Commissioner, that his/her personal data was being retained by the state without the requisite consent. In 2009 the office of the Data Protection Commissioner commenced a statutory investigation, under the provisions of the Data Protection Act, in respect of the data and its compliance with the law. It was noted that the creation of such a database without consent was a clear breach of Data Protection law. Thus, in order to comply with EU Data Protection law it was initially held that cards from all babies born between 1984 and 2002 should be disposed of in 2013.
These cards were due to be destroyed unless claimed by the person screened or their parent / guardian/next of kin. Samples taken before 1 July 2011 were deemed to be in breach of this EU law, as since this date, all parents are now required to give consent for their newborns screening cards to be stored and then disposed of during the child's 11th year when the need for follow up tests is significantly reduced.
Over the last few months many lobbying groups and health practitioners have canvassed seeking to retain the database. The Irish Heart Foundation said the cards could save the lives of extended family members of more than 1,000 young victims of Sudden Cardiac Death. Furthermore the Royal College of Physicians of Ireland argued that the destruction would result in the permanent loss of a genetic database of the Irish Population, which is a unique bio-historical archive of pre-immigration Ireland that would be of interest to scientific investigators for generations to come and that should be used to carry out life saving medical research. Furthermore Taoiseach Enda Kenny has also noted that the samples could have real value in the future as a result of changes in technology and medical science.
The Minister has now instructed that an expert group discuss the matter and consider how the older samples may be archived. Ultimately, the aim of the aim of the group appointed will be to attempt to find a means of justifying the retention of the samples through public safety or national interest requirements. The Data Protection Acts do not explicity include a “national or public interest” exemption from the reach of the Acts and so legislative intervention may be necessary to clarify this issue.