Dublin Chamber News

Irish Daily Mirror
4 April 2013

On Saturday Dublin Lord Mayor Naoise O’Muiri will hold the Lord Mayor’s Ball for three charities – the Alazheimer Society of Ireland, CRY (Cardiac Risk in the Young) and the Marie Keating Foundation. Reception for the event sponsored by Fire Restaurant at The mansion House is at 7pm, with dinner at 8pm. Tickets are €100 each. For more information contact This email address is being protected from spambots. You need JavaScript enabled to view it.


 

Newcastle West RFC

Weekly Observer
Wednesday 20 March 2013

Newcastle West RFC are encouraging its members to support a charity event in aid of C.R.Y. Cardiac Risk in the Young) which takes place on Saturday 4 May with an 80k cycle starting at 11am and a 10k walk/run starting at 12 noon from Monagea Community Centre. The parish of Monagea lost two young people, NIamh Herlihy and Darra O’Donovan, to Sudden Adult Death Syndrome in 2011 and funds are needed to raise awareness for this unexplained condition. All members are encouraged to take part or give a donation. For further information contact Clare O’Donovan 085 1458214, Liam Herlihy 087 2998461 or email This email address is being protected from spambots. You need JavaScript enabled to view it. or This email address is being protected from spambots. You need JavaScript enabled to view it. . You can also contact Newcastle West RFC on 069 62540.


 

Victory for tots’ tests

Irish Daily Mirror
Comment
27 March 2013


The decision not to destroy blood samples taken from babies born here is to be welcomed.

The 1.5 million newborn screening card blood samples is an invaluable database that could save lives and the Irish Heart Foundation is to be commended for its campaign to block the destruction.

Health Minister James Reilly also deserves praise for stopping what amounted to medical vandalism in the name of political correctness.

The IHF insisted the information in these cards could save the lives of relatives of more than 1,000 victims of sudden cardiac death.

Protection of life must always take precedence over ridiculous EU data protection legislation.


 

Saving blood samples a matter of life and death

The Irish Times
Saturday 23 March 2013

Dr Muiris Houston


Q Should we be worried about the HSE proposal to destroy newborn blood samples?

Easter Sunday is rapidly approaching, and with it a deadline after which the Health Service Executive will incinerate more than 1 million blood samples taken from newborn babies. The heel-prick test, also known as the Guthrie test, is carried out on newborns to screen for genetic disease and the blood sample is then stored on a piece of absorbent card.

In 1966 Ireland became one of the first countries to implement the Guthrie test, which is used to detect Phenylkentonuria – a genetic condition that can damage the brain and nervous system – and five other diseases.

The decision to destroy the cards came after it emerged that samples taken before July 1st, 2011 were being retained without consent and therefore in breach of national and EU data protection legislation. A subsequent policy review carried out by an expert group recommended that samples more than 10 years old be destroyed unless their owners or guardians requested their return. The HSE deadline for such requests has been set for March 31st, after which all other samples from children born between 1984 and 2002 will be incinerated.

However, a survey by the Irish Heart Foundation (IHF) has found that just 12 per cent of the population was aware of the impending deadline.

Priceless Archive

The main reason we should be concerned about plans to destroy these blood spot cards is that they represent a priceless genetic archive. The DNA of every baby born in Ireland since 1984 is present in this archive. In light of the recent explosion of medical research based on genetic material, it’s likely that these samples could in the future be used to detect individual risk of specific diseases. More immediately, cardiologist and the IHF say the samples could save the lives of family members of more than 1,0o00 young people who have died from sudden cardiac death. They believe vital genetic information on the blood spot could be used to identify the gene of underlying cardiac conditions that could prevent more deaths in families of victims of sudden cardiac death.

Issues of patient consent are important and are being given primacy by the Department of Health. But data protection must not be allowed take precedence over human life.

There is a legislative solution out there. But first Minister for Health James Reilly must stop the impending destruction of the bloodspot cards.


 

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