Statement on State Collection of Information on Children with Autism

In the wake of the RTÉ Investigates programme detailing the collection of information on children with autism involved in legal challenges to the State for access to basic services, the Irish Human Rights and Equality Commission calls today on the Department of Health to publish its independent review of the practice at the earliest possible opportunity.

The Commission, which is the independent monitor of Ireland’s compliance with the UN Convention on the Rights of People with Disabilities (UNCRPD), has noted the statement from the Department of Health that the practice of sharing this information was lawful.  The Commission calls on the Department to publish this legal advice promptly. This will facilitate the required analysis of the State’s legal defence of the practice.

The Commission considers the reported practices of the Department of Health 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.

Respect for the dignity and privacy of individuals is at the heart of the UNCRPD ratified by Ireland in 2018. Article 22 sets out the State responsibility to protect the privacy of personal and health information of people with disabilities on an equal basis.

Sinéad Gibney, Chief Commissioner of the Irish Human Rights and Equality Commission stated:

“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.

 “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.”


For further information, please contact:

Brian Dawson, IHREC Communications Manager,

01 8589601 / (087) 0697095

Follow us on twitter @_IHREC

 Editor’s Note

Article 22 – Respect for Privacy of the UNCRPD ratified by Ireland in 2018 sets out that:

  1. No person with disabilities, regardless of place of residence or living arrangements, shall be subjected to arbitrary or unlawful interference with his or her privacy, family, home or correspondence or other types of communication or to unlawful attacks on his or her honour and reputation. Persons with disabilities have the right to the protection of the law against such interference or attacks.
  2. States Parties shall protect the privacy of personal, health and rehabilitation information of persons with disabilities on an equal basis with others.”

 Irish Human Rights and Equality Commission

The Irish Human Rights and Equality Commission is an independent public body, appointed by the President and directly accountable to the Oireachtas. The Commission has a statutory remit set out under the Irish Human Rights and Equality Commission Act (2014) to protect and promote human rights and equality in Ireland, and build a culture of respect for human rights, equality and intercultural understanding in the State.

The Irish Human Rights and Equality Commission is Ireland’s national human rights institution and is recognised as such by the United Nations. The Commission is also Ireland’s national equality body for the purpose of a range of EU anti-discrimination measures.