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検査済みろ紙血の取り扱い(アイルランドの場合)

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2012年03月16日(Fri) 16:10 by drharasho

米国での検査済みろ紙血の取り扱いの議論に続き、
欧州のアイルランドで大きな問題となっているようです。

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7 March, 2012
Ireland to return NBS bloodspot cards to parents
http://www.isns-neoscreening.org/htm/news_detail.htm?id=157

Received from John Adams, Toronto, Canada

The Irish Times - Saturday, March 3, 2012;  
accessed at http://www.irishtimes.com/newspaper/frontpage/2012/0303/1224312717912.html
Reilly's plan to destroy million baby blood samples 'appalling'
Related

International standards for storing samples vary wildly | 03/03/2012
http://www.irishtimes.com/newspaper/ireland/2012/0303/1224312717237.html?via=rel

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.

 

Follow-up message:

The Health Service Executive is to launch an information campaign
about newborn screening cards, which have been kept since 1984
without parental consent.

A newborn screening card contains a blood spot taken during a heal
test at birth and a data bank of cards has been built up.

Speaking in the Dáil, Minister for Health James Reilly said the new
campaign will see the cards returned to people, allowing them to
donate their card to medical research, should they so wish.

Following a complaint to the Data Protection Commissioner in 2009,
a decision was made on legal and ethical grounds to destroy the cards.

Denis Naughten said the destruction of the cards would be a huge
loss to the State.

Mr Naughten said the cards could act as a national DNA database.

He said it could provide information to people whose families are
prone to sudden cardiac death or would be useful in the cases of
missing people.

Mr Reilly said there are plans to ask people for their consent.

He said he did not think it was ethical, moral or legal to collect
genetic information without consent.

He said that there is a legal obligation that biological information
that is gathered is used for the purpose it was gathered for,
unless there is express consent


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