Irish Independent Broadsheet
Wednesday 14 March 2012
Blood history
The Health Minister has agreed to the destruction of the nation’s 1.6 million Newborn Screening Card (NSC) blood samples as recommended by the Data Protection Commissioner.S
uch an action would be a serious mistake. The proposed destruction is the consequence of the lack of a legal frame work to protect the blood samples, which were collected without written consent on newborn children in Ireland from 1964 until July 2011 as part of the National Metabolic Screening Programme.
Some 80 young people die suddenly and unexpectedly each year in Ireland, almost half of them with no obvious cause.
These deaths referred to as Sudden Arrhythmic Death Syndrome (SADS) are usually due to genetic abnormalities in the heart’s electrical system. Genetic analysis of the deceased’s blood or tissue provide a unique opportunity to identify the underlying genetic mutation responsible for the death and permits identification of at risk family members.
However in many cases no blood or tissue samples were retained at teh time of death so that the only remaining blood sample is the NSC one.
Unfortunately, the blood samples of more than a thousand young Irish people who have died of Sudden Cardiac Death (SCD) in the last 27 years wil be destroyed if the minister’s decision is implemented.
This means that up to a thousand extended families may be left without a genetic diagnosis when we know that post mortem bloodspot analysis for gene mutations for one of the conditions that causes SADS, Long QT Syndrome, alone will provide a diagnosis in up to a third of cases.
The original decision and the subsequent report were made with minimal consultation and certainly no public debate on an issue that has the potential affect the lives of many Irish Citizens.
The NSC blood samples form a de facto national bio-bank.
Their destruction was agreed without consultation with or input from potential major stakeholders in a national bio-bank such as the Irish Heart Foundation, the Irish Cancer Society, the Cystic Fibrosis Association of Ireland and other patient advocacy groups, cardiologists, geneticists, oncologists or pulmonologists, Molecular Medicine Ireland, the National University of Ireland or Science Foundation Ireland.
Until recently these groups were unaware of the impending destruction of the samples despite the potential for identification of genetic mutations prevalent in the Irish population, which may impact the nation’s health.
We ask that the minister reverse his decision, and that a wide public debate be held on the possible destruction of the NSC samples, before any irreversible steps are taken.
Dr Joseph Galvin
Cardiologist, Chairman, SCD Council, Irish Heart Foundation
Prof Andrew Green
National Centre for Medical Genetics, Crumlin
Dr Ruth Barrington
Molecular Medicine Ireland
Prof David Keane
Chair EP Subgroup, Irish Cardiac Society
Dr Catherine McGorrian
Family Heart Screening Clinic, Mater Heart House
Prof Tim O’Brien
Dept of Medicine, NUI Galway
Dr Deirdre Ward
Cardiologist, CRYP Clinic, AMNCH, Dublin
Prof Tom O’Dowd
Professor of Primary Care, TCD
Mary Vasseghi
SADS Ireland and Patients for Patient Safety, WHO
Dr David Gallagher
Oncologist & Geneticist, Mater Private Hospital
Prof Richard Costello
Pulmonary Medicine, Beaumont Hospital
Dr Barry Kelleher
Gastroenterologist, Mater Misericordiae Hospital
Maureen Kelly
SADS Ireland
Dr Pat Nash
Cardiologist, UCHG, Galway
Dr Jim O’Neill
Cardiologist, Connolly Hospital.
Dr Niall Mahon
Cardiologist, Mater Misericordiae Hosptial.