Reilly File – I am in total opposition to the destruction of the archived blood spots in Temple Street. Minister Reilly should legislate to form a qnago to oversee their storage and future use including issues of confidentiality. Cultures change

GENEVIEVE CARBERY

MINISTER FOR Health Dr James Reilly has decided to have more than a
million archived blood samples taken from newborns destroyed within
the next four to six months.

Cardiologists have called on the Minister to reverse the decision,
describing it as “appalling”. They say the samples could be
particularly valuable in genetic tests for diagnosing sudden adult
death syndrome.

Dr Reilly is to follow the recommendations of a Health Service
Executive review group to destroy heel-prick screening cards that are
more than 10 years old.

The department plans to give individuals and their families the chance
to access the cards or have them returned. Most of those affected
would now be aged between 10 and 28.

The National Newborn Bloodspot Screening Programme, using a heel-
prick (or Guthrie) test, has been used in the State since 1966 to
screen for rare genetic disease.

The bloodspot samples are stored on a card at the Children’s
University Hospital Temple Street with the child’s and mother’s
details. Most samples before 1984 were destroyed by water
contamination.

Until recently parents were not asked for consent to keep the samples.
Parents have had the right to opt out of the test since a 2001 Supreme
Court judgment.

Since July 2011 parents have been asked for consent to take the
samples, with agreement to allow storage for 10 years with use only
for tests to which they agree.

Action on the issue came about after the Data Protection Commissioner
found in 2009 that the retention of the cards breached the law,
following a complaint from a member of the public. The commissioner
proposed that the retained samples be destroyed.

The HSE review group report seen by The Irish Times said that
retaining samples without consent “clearly contravenes both EU and
national data-protection legislation”. It is “extremely important”
that the screening programme was “not undermined or compromised in any
way”, it said.

Using the samples for research or another purpose “compounds only
further that initial wrong”, it said.

The destruction of the old samples “serves to respect the autonomy of
the individual”, the report concludes.

However, cardiologist Dr Joe Galvin of the family heart-screening
clinic at the Mater hospital, Dublin, wants samples retained
indefinitely and has called for public consultation.

He argued the cards were a potentially valuable medical resource for
individual use and wider research.

Recently developed genetic tests to identify death from sudden adult
death syndrome, Dr Galvin said, could help living family members to be
treated. “This is an extraordinary repository of information and to
destroy it with no consultation is outrageous,” he said.
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