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September 19, 2014

RCPI warns against destruction of unique DNA database used for medical research

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By Lloyd Mudiwa.


The RCPI has expressed “serious concern” at what it termed HSE plans to permanently destroy the DNA records of every baby born in Ireland between 1984 and 2002.

“This will result in the permanent loss of a genetic database of the Irish population, a unique bio-historical archive of pre-immigration Ireland that would be of interest to scientific investigators for generations to come and that should be used to carry out life-saving medical research,” the College stated last week. “We urge the HSE to reconsider its position.”

According to public notices placed by the HSE on January 17, some old screening cards for heel-prick tests for six rare conditions undertaken for all newborn babies will be disposed of during 2013 to comply with national and EU Data Protection law, unless they were requested by the person screened or their parent, guardian or next-of-kin.

The basis of this decision was a complaint by a single individual to the Data Protection Commissioner that his DNA data was retained by the State without his consent, said the College, adding that in its view, common sense and the good of society should take precedence over a narrow interpretation of the law.

“We do not agree that the State is obliged by European law to destroy this national archive. Destruction of this priceless national asset is the easy but wrong option.”

The RCPI added that while it was impractical to store all of these cards indefinitely, a representative and statistically valid sample from a short period in the 1980s could be retained and anonymised for future research.

Arrangements could “easily” be made to store these samples appropriately with a secure authority, define a governance structure and facilitate research access through an ethics review board. Permission to retain these cards would be obtained by advertising an invitation to individuals born between the defined dates to opt out if they so wished, with no response considered as consent, the College proposed.

“Access to (anonymised) screening cards would allow for research into patterns of genetic disease in the Irish population and susceptibility to other diseases. One such investigation in 1999, using 900 of these cards, showed the Irish population has the highest frequency of haemochromatosis in the world.”

Investigations could also, the College said, answer many questions for the families of children who have died of Sudden Infant Death, as extracted DNA could identify the likely cause of death.

The HSE is planning to either dispose of, or return to the parents, all cards that have been in storage for 10 years annually, starting this year.

Since the National Newborn Bloodspot Screening Prog-ramme was updated in June 2011, screening cards are stored with parental consent for 10 years. Cards from all prick tests carried out since 1984 in storage will have to be disposed of during this year, and annually for cards kept for more than 10 years.

A parent, guardian, person screened if they are now aged over 18 years, or their next-of-kin, who prefer to have their cards dating from 1984 to 2002 returned to them, should submit an application form obtainable via www.newbornscreening.ie or by calling 1850 24 1850, along with a copy of their identification, before March 31.

lloyd.mudiwa@imt.ie