Denis Naughten (Roscommon-South Leitrim, Independent)

Small blood spot samples are collected from all Irish children in infancy via the heel-prick test. These samples number 1.6 million since 1984. There has been controversy in the past few years because of the lack of a formal written consent process for the analysis and storage of residual samples. This has led the Data Protection Commissioner to call for the samples to be destroyed. The call for sample destruction has been prompted by the lack of consent for sample retention and concerns about protecting the privacy of the individual.

While there is little doubt that the taking and storing of samples without consent are no longer acceptable, it must be recognised that the destruction of older samples will result in the loss of a valuable national resource. The blood samples have the potential to be used to form a national DNA database, in respect of which one critically important aspect is sudden cardiac death. Up to 100 young people in Ireland die suddenly and unexpectedly each year and the cause is unidentifiable. Based on estimates of the prevalence of sudden cardiac death in Ireland and on foot of a New Zealand research study, it is estimated that up to 170 samples could provide vital information for individuals and families prone to sudden cardiac death. This would mean 170 families potentially could have access to preventive treatment to reduce the trauma faced by many on foot of an unexplained sudden death when, for example, a young person drops dead on a football pitch.

It would not only be helpful in the case of sudden cardiac deaths. It would also have the potential to help researchers to identify genetic conditions and develop treatments, even cures. This covers the full range of genetic diseases ranging from rare diseases, including cystic fibrosis, from which 17 Irish children under the age of five die every week, to more common diseases such as multiple sclerosis and cancer. Thousands of individuals and families could benefit in giving researchers access to this valuable bio-bank.

There would be non-medical benefits also. There would be massive benefits in using the bio-bank to confirm identities in the cases of missing persons, as Ireland is one of the few countries in the world which does not have a national identify card.

In September last year the New Zealand Government announced a new legislative process to protect and preserve indefinitely blood spot cards in New Zealand by way of a clear legislative framework that would include a formal written consent process, information packages for consenting parents and legal limitations on how the samples were to be used. The Data Protection Commissioner has taken the strictest possible interpretation, even when it is not benefiting society or the individuals in question. Surveys have shown that the public overwhelmingly supports medical data being used for this type of research. By all means, introduce an opt-out clause for individuals or parents who have concerns. Surely such a clause could be introduced to address the concerns raised by the Data Protection Commissioner, while, at the same time, protecting society and individuals in regard to the genetic diseases that can be identified and treated in order to save lives.

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