THE DATA PROTECTION Commission (DPC) has launched a statutory inquiry after last week’s RTÉ Investigates report on the Department of Health processing data of children with autism involved in cases against the State.

The programme revealed that the Department continued to gather information about children with special educational needs and their families who were involved in legal actions against the State, long after their cases were dormant.

The DPC said the inquiry will examine whether or not the Department of Health 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 Commission has appointed a team of authorised officers to conduct the inquiry.

In an open letter last week, Secretary-General of the Department of Health, Robert Watt insisted that the department has never unlawfully held sensitive medical and educational information of children involved in dormant court cases.

“The Minister for Health is regularly named in litigation, and one of the duties of the Department of Health is to manage cases effectively on behalf of the state, which sometimes includes review of sensitive information in order to settle or defend a case,” said Watt. 

On Friday, Taoiseach Micheál Martin ordered a policy review and the establishment of a multi-disciplinary team to consider the issues raised in the programme. 

DPC launches inquiry into processing of personal data by the Department of Health https://t.co/bn9aXdJ1Lu pic.twitter.com/v82XVIT8kX

— Data Protection Commission Ireland (@DPCIreland) March 30, 2021

Inclusion Ireland said it hopes the DPC’s investigation is completed quickly to reassure families that their personal data is not being held for inappropriate purposes.

“After the Prime Time exposé, every family who has interacted with State agencies or advocated on behalf of a child with a disability is wondering if their information has been retained, or collated. Faith in the system has been seriously damaged,” said Loraine Dempsey, interim CEO of the national rights-based advocacy organisation.

“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.”

The Irish Human Rights and Equality Commission called on the Department to promptly publish the legal advice it received stating the practice of sharing this information was lawful.

“These revelations could have significant negative consequences for public trust in the State’s protection of people’s fundamental rights. In light of this, the Commission considers that the actions and motivations of the State in these matters need to be speedily and transparently set out,” said Sinéad Gibney, chief commissioner of the IHREC.

“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 Irish Society for Autism said at least four dozen families were affected by this issue while seeking education and support services for their children, with many families left with significant legal costs as a result.

The Medical Council said Friday that it was greatly concerned in relation to some of the allegations raised in the report, particularly the allegation that confidential patient information was shared by doctors with officials in the Department of Health without patient consent.

“The Guide to Professional Conduct and Ethics for Registered Medical Practitioners sets out the principles of professional practice that all doctors registered with the Council are expected to follow and covers in detail issues pertaining to confidentiality, disclosure of patient information and disclosure without consent,” said Jantze Cotter, director of professional competence, ethics and research with the Medical Council.

The council said it will be closely monitoring developments on this issue and will be in contact with the Department of Health and the HSE.