As explained in last month's blog on this topic (http://www.irelandip.com/2013/02/articles/privacy-1/balancing-act-data-protection-and-health-requirements/#more), the Office of the Data Protection Commissioner (ODPC) ordered the destruction of all "heel prick test" samples taken from babies born between 1984 and 2002. The decision to destroy the samples followed a single complaint to the ODPC that the samples were held without consent. People born between those dates had until 31 March 2013 to apply to the Health Service Executive (HSE) for the return of the card, which carries invaluable genetic material on it.
This week, Minister for Health James Reilly communicated his concern surrounding the proposed destruction of the samples and ordered the HSE not to take any action until an expert group can meet and consider how the cards can be maintained in a manner which satisfied the concerns of the ODPC. Minister Reilly says that the expert group will look at how these samples, known as "guthrie cards", have not been destroyed in other EU countries which are subject to the same data protection controls as Ireland.
This decision to endeavour to maintain the samples will be welcomed by many – the Irish Heart Foundation had expressed major concerns over the issue and launched a national campaign to halt the destruction of samples which could save the lives of extended family members of more than 1,000 young victims of Sudden Cardiac Death.