Anne Ferris (Wicklow, Labour) | Oireachtas source

I thank the Ceann Comhairle for selecting this topical issue as it is one that must be dealt with the greatest urgency. The Irish Heart Foundation has been running a campaign to safeguard Guthrie cards over ten years old which are scheduled to be destroyed by 31 March. These cards, which number nearly one million, are very important as they contain priceless genetic information, including the ability to identify those at risk of sudden cardiac death. I understand the decision to destroy them came about because they were in breach of data protection legislation. I certainly respect that a person's data is of the utmost importance and must be protected. However, I do not believe the correct balance has been struck on this matter. The arbitrary destruction of these cards is too extreme a response and I call for it to be suspended.

Recent polling illustrates that the HSE's information campaign has been ineffective with only 12% of the population aware that the cards are to be destroyed. It is clear that the crucial issue of genetic diagnosis was not addressed in the policy review.

The human tissue Bill could take account of both the data protection requirements and the need to protect the Guthrie cards by providing for an opt-out system. Other countries such as New Zealand, Sweden and Denmark, have legislated to protect these cards. This unique bio-bank of vital genetic data should not be destroyed. I urge the Minister of State not to allow this to happen.

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