April-17-2013 in Healthcare Law
In a significant policy U-turn, the Minister for Health, James Reilly, this week ordered the HSE not to destroy blood samples taken from new-born babies during the course of their heel prick test.
The heel-prick test is usually carried out three to five days after a baby's birth and involves taking a blood sample to screen for genetic disorders. The results of these tests are then stored on Guthrie cards which are kept in the archives at the Children's University Hospital in Temple Street.
The origin of the initial decision to destroy the samples was based on a single complaint by an individual to the Office of the Data Protection Commissioner that his/her personal data was being retained by the State without the requisite consent. While the samples are now stored with parental consent, historically explicit consent was not obtained. In 2009 the Office of the Data Protection Commissioner commenced a statutory investigation in respect of this data and found that the creation of such a heel prick results database without the explicit consent of the persons involved was a clear breach of Data Protection law.
In order to comply with Data Protection legislation, the Office of the Data Commissioner found that samples from all babies born between 1984 and 2002 required to be destroyed. The samples obtained from persons born between those dates were due to be destroyed (unless claimed by the person screened or their parent) by 31 March 2013.
This week the Minister for Health ordered the HSE not to take any action until an expert group has had an opportunity consider how the heel prick database can be maintained in a manner which satisfies the concerns of the Office of the Data Protection Commissioner. Minister Reilly has advised that the expert group will look at how the samples have not been destroyed in other EU countries which are subject to the same data controls as Ireland. Ultimately the aim of the group appointed will be to attempt to find a means of justifying the retention of the samples.
The Minister’s decision to endeavour to retain the samples will be welcomed by many interested parties. Over the last few months several healthcare practitioners and bodies have put forward arguments for the retention of the heel prick samples on the basis that their destruction would result in the permanent loss of a genetic database of the Irish population which could potentially prove invaluable for medical research into the future.
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