Inclusion Ireland, the national association for people with an intellectual disability, has described revelations by RTÉ Investigates today that the Department of Health compiled secret dossiers on autistic children and their families as a ‘gross breach of trust’, and called for the families affected to be notified.

The investigation, which will be broadcast on RTÉ Prime Time tonight, revealed that the Department of Health has been secretly using information from private doctor consultations to build and maintain dossiers on families who were involved in legal actions against the State.

Speaking today, Lorraine Dempsey, interim CEO of Inclusion Ireland, said: “While we await the full details to be broadcast tonight, the details we’ve seen so far this morning constitute a gross breach of trust for families and autistic children. It is highly disturbing to think that sensitive information is being collated in this manner – when families are at a low ebb and seeking help from the State, to be potentially weaponised later during legal disputes.

“How can families have confidence in a system that exploits their vulnerability in this way? How can they trust a system that shares confidential medical information without their consent or knowledge? The families affected must be notified – their personal data is their own.

“We need to know how widespread this practise is – does it extend further in the Department of Health? And the Department of Education? Is this standard practice in State bodies? We need a fully transparent investigation into this issue by the Data Protection Commissioner – not least for the families affected.”

The RTÉ story can be found here.

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