Q&A: Why did the Dept of Health keep dossiers on children with autism?
The dossiers include sensitive medical and educational information about the children who were involved in historic legal actions against the State.
The Department of Health has built dossiers on almost 50 children with autism who were involved in legal actions against the State, a whistleblower has claimed.
The dossiers include sensitive medical and educational information about the children who were involved in historic legal actions against the State.
The dossiers were built and maintained over a number of years without the knowledge or consent of their parents, with at least 48 families affected by the practice.
The information in the dossiers was shared and gathered with the goal of aiding the Department of Health with a background legal strategy, such as in determining when it would be a good time to approach parents to settle or withdraw cases.
The dossiers contained medical and educational information on children gathered from doctors.
In one instance, the department was furnished with a lengthy clinical evaluation from a doctor detailing the patient's struggles, the impact it was having on their siblings and the parents' fears for the future.
A senior civil servant at the Department of Health, went public with details of the secret dossiers after he made a protected disclosure last year and was told a review had "not raised matters of concern".
Speaking to RTÉ Investigates, Shane Corr said that after seeing the sensitive information and knowing that the parents and children did not know it was being stored, he could walk away with a clear conscience until "those parents and those children knew what I knew".
The Department of Health issued a statement saying that there was no breach of the Data Protection Acts identified.
However, children's rights lawyer Gareth Noble doesn't agree and said "we need to know the timelines" to understand if any laws were broken.
Mr Noble questioned whether it was the strengthening of laws by the Data Protection Act that caused the practice of information gathering to discontinue.
He said: "Was there a recognition that actually the law of GDPR and privacy which was strengthened in 2018, is the lead up to that what prompted the discontinuance of this?
"The timing of this is very important because obviously data protection law came in at a particular time and didn't apply retrospectively so before anyone could assess whether or not any laws were broken, and to what extent laws were broken, we need to know the timelines.
"But it would seem to me that irrespective, and outside of the data protection law, there are huge ethical issues around what was done by the medical practitioners themselves."
Mr Noble said that the legal ramifications really depends on the timeline of the events and the people who knew about them.
He said: "You're looking at potential actions around breach of privacy, breach of confidentiality.
"It's probably more geared at the practitioners themselves who actually did this. There was nobody compelling the doctors to force this information over or schools, about the handover of school reports.
"I imagine that the primary focus will be on them because they're the ones that did the breaching."
He said that it was "very clear" there were potential breaches of patient confidentiality in many of the cases.
He said: "There is a tort of what's called misfeasance, which is a breach of your public office obligations, there are lots of issues in relation to breach of privacy and consent issues and also then in terms of breach of potentially CORU guidelines around ethics and ethical policy.
"I was really alarmed to hear last night of one account of psychiatrists and I mean if that's true, that's a gross abuse of trust, no doubt about that."
Mr Noble added: "There are obviously huge questions then for the medical practitioners involved because I think that they're in a very serious situation legally in terms of without the consent of their patients, discussing their cases and their circumstances with Government departments in the context of litigation."
Mr Noble said that it shouldn't be up to families to go investigating themselves as to whether or not they were in this category.
He said: "If there's an acknowledgement by Government that this was wrong...they will have the knowledge themselves, it's going to be very easy for the Department of Health to establish which families are affected.
Mr Noble added that the statements that were given by the Departments of Health and Education last night stood over these policies so there should be no reason why they wouldn't hand over the information.
"That then can be tested legally as to whether or not this was right or wrong.
"The statements that were given to Prime Time last night by both Government departments said there was nothing wrong with this, this was standard practice.
Speaking ahead of the airing of the documentary, Tánaiste Leo Varadkar said compiling of the dossiers was 'worrying', but declined to comment further.
Sinn Féin’s health spokesperson David Cullinane has called for an independent inquiry into the actions of the Department of Health.
Mr Cullinane told RTÉ radio’s Morning Ireland that a non-statutory investigation similar to the Scally Inquiry into CervicalCheck in its scope and duration should be carried out into the Department’s actions.
It was alarming that very sensitive information was being kept because parents had taken legal action to get the services their children needed, he said.
Meanwhile, the deputy CEO of autism charity As I Am, Fiona Ferris has said that questions needed to be answered “internally and externally” about the actions of the Department of Health.
This was “yet another breach of trust” she said.
The actions of the Department of Health would raise concerns for families and would make them question their trust in the team working with their children.
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