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.


 

Heart charity in CRY for help

Southside People
Wednesday 13 March 2013


Southside People Mayor Photo

CRY FOR HELP
Lord Mayor of Dublin, Cllr Naoise O’Muiri welcomed RTE sports presenter Jacqui Hurley and model Daniella Moyles to
The Mansion House to encourage women from all over Dublin to run this year’s
Dublin Mini Marathon in aid of CRY
Photo; Robbie Reynolds/CPR


RTE sports presenter, Jacqui Hurley along with model and TV presenter Daniella Moyles joined the Lord Mayor of Dublin, Naoise O’Muiri, at the Mansion House recently to encourage women to sign up to take part in this year’s Flora Women’s Mini Marathon in aid of CRY (Cadiac Risk in the Young).

The charity hopes to double its numbers this year and raise €250,000 to support the free screening service the charity provides to diagnose heart conditions that can lead to Sudden Cardiac Death (SCD).

This year CRY has launched a new Facebook page called CRY Dublin Mini Marathon which will support and encourage all those undertaking the marathon in aid of CRY.

Fitlinks Fitness will supply fitness tips, advice, articles and couch to 10k fitness plans regularly on the Facebook page.

Jacqui Hurley has been a strong supporter and patron of CRY for a number of years. Last year she undertook Sean’s Bucket List in memory of her brother Sean, raising huge funds for CRY and the Young Rider Development Fund.

During the year she ran a number of marathons held a charity “Who Wants to be a Thousandaire” with her RTE colleagues, ran a shop and took over a pub among other things in order to fulfil Sean’s list.

“As a patron of CRY I would like to encourage women all over the country to get involved in supporting CRY at this year’s Mini Marathon,” said Jacqui.

“Working in sport I have seen the results of cardiac risk in young people that has gone undiagnosed and unfortunately resulted in untimely deaths.

“CRY is an excellent charity that works hard to ensure that these deaths are avoided by providing free cardiac screening for anyone with worrying symptoms as well as support for family members who have lost someone to Sudden Cardiac Death.”

Jacqui added: This is the charity’s biggest annual fundraiser and without any Government funding they rely on the public’s support to keep the service going in the CRYP Centre in Tallaght Hospital.”

Daniella Moyles has come on board for the 2013 marathon as an ambassador for CRY and has committed to running in this year’s mini marathon for the charity.

“I’m really excited about getting involved with CRY,” she said.

“I’ve just started my training programme this week and hope to run the marathon in a decent time.

“I will be logging onto the Facebook page for tips on how to build up my routine to reach 10k. “Hopefully I can encourage more people to get involved and run with me as it is such a worthy cause.”

Lord Mayor Naoise O’Muiri chose CRY as one of his nominated charities for his term in office pledging to assist in fundraising. He is lending his support to their cause but unfortunately cannot participate in the all female marathon in June!

The entries for this year’s Flora Women’s Mini Marathon are now open. CRY hopes to attract up to 1,200 women of all ages to run or walk the 10K.

All participants must enter on the official entry form.

Those who have already entered and would like to run for CRY can call Lucia on 01 4525482 or email This email address is being protected from spambots. You need JavaScript enabled to view it. to receive their sponsorship pack.


 

Destroying samples

The Irish Times
Thursday 14 March 2013


The planned destruction in some three weeks of more than one million blood samples from newborn babies is causing concern among medical specialists and to the patient advocacy group, the Irish Heart Foundation (IHF). The heel prick test, also known as the Guthrie or blood spot test, is carried out on newborns to screen for six genetic diseases and the blood sample is then stored on a card.

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

Cardiologists and the IHF argue the samples could save the lives of family members of more than 1,000 young people who have died from sudden cardiac death. Experts believe vital genetic information on the blood spot could be used in the future to identify the gene of underlying cardiac conditions that could prevent more deaths in families of victims of sudden cardiac death.

While issues of patient consent are important, and are being given primacy by the Department of Health in this case, the medical director of the IHF, Dr Angie Brown has said data protection must not take precedence over human life. In addition, the IHF claims the issue of genetic diagnosis in cardiac conditions was not addressed by the policy review carried out by the Health Service Executive.

The forthcoming Human Tissue Bill represents an opportunity to resolve the impasse. In the meantime, Minister for Health James Reilly should instruct the HSE to halt the irreversible destruction of the blood spot cards so that a legislative solution to the problem can be found.


 

10KM Walk/Run and 80KM Cycle in aid of CRY

Weekly Observer
Wednesday 6 March 2013


Monagea GAA, in association with the Herlihy and O’Donovan/Scanlan families invites you and all clubs in Co Limerick to participate in this charity event.

In the space of 8 months in the parish of Monagea, Co Limerick, we lost two beautiful, young people to Sudden Adult Death Syndrome. Niamh Herlihy (20) and Darra O’Donovan (15) were so cruelly and suddenly taken from their families and friends, that we feel the need to raise awareness of this unexplained condition.

Funds are needed to allow research into the possible causes of such sudden deaths as well as to facilitate further screening.

Date: Saturday 4th May 2013. Cycle – 11am, Walk/Run – 12 noon, Starting from Monagea Community Centre.

All participants are welcome to wear their club colours on the day. Light refreshments afterwards at Monagea Community Centre.

For further information contact Clare O’Donovan (085 1458414), 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. .


 

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