The Data Protection Commission (DPC) has launched a statutory inquiry following claims that the Department of Health secretly collected information on children with autism.
An RTÉ Investigates programme last week claimed the Department used information from private doctor consultations to create dossiers on children with autism who were involved in legal actions against the State without their parents’ knowledge.
On Tuesday, the DPC said it had launched an inquiry under Section 110 of the Data Protection Act, 2018 arising from the revelations concerning the processing of the personal data by the Department.
“The inquiry will examine whether or not the Department of Health has discharged its obligations in connection with the data processing concerned and it will determine whether or not any provisions of the Data Protection Acts and/or the GDPR have been contravened by the Department of Health in that context,” the DPC said in a statement.
A team has been appointed by the Commission to conduct the inquiry.
Inclusion Ireland has welcomed the DPC’s decision to open an inquiry, saying faith in the system had been “seriously damaged”.
Loraine Dempsey, interim chief executive of Inclusion Ireland, said: “We hope that the investigation is completed quickly to reassure families that their personal data is not being held for inappropriate purposes.
“The Department of Health must act quickly to restore trust, by contacting all families affected by this issue as soon as possible. They must also make supports available to the families affected by this, many of whom will be understandably upset.”
It comes as the Department of Health is also undertaking a review of all cases where dossiers on children with autism involved in legal actions against the State were kept.
Health Minister Stephen Donnelly said on Friday of last week that “some files were clearly kept” following the allegations.
Autistic people, and people with disabilities more broadly, are looking to the State to rebuild a trust which has been severely damaged
On Tuesday, the Irish Human Rights and Equality Commission called on the Department of Health to publish its independent review of the practice at the earliest possible opportunity.
It said the claims “raise significant human rights concerns about the State’s approach to the privacy rights of citizens, patient confidentiality when dealing with public health and social care services, and in particular, its fundamental approach to people with a disability and their families.”
Sinéad Gibney, chief commissioner said: “The Commission considers that the actions and motivations of the State in these matters need to be speedily and transparently set out.
“This coming Friday marks World Autism Day, this should be a day to celebrate the contributions of autistic people to our society. Instead autistic people, and people with disabilities more broadly, are looking to the State to rebuild a trust which has been severely damaged.”
The Commission, which is the independent monitor of Ireland’s compliance with the UN Convention on the Rights of People with Disabilities, noted a statement from the Department of Health which said that the practice of sharing the information was lawful.
The Commission called on the Department to publish this legal advice “promptly” to facilitate “the required analysis of the State’s legal defence of the practice.”