All research based on children with disabilities must be founded on ethical principles, according to the National Disability Authority (NDA), which was established on behalf of the State to promote the rights of people with disabilities.
The authority's chairwoman, Ms Angela Kerins, said the voices of children with disabilities were seldom heard in the limited research that is conducted. She expressed concern that "policies and services are being developed without crucial voices being heard".
Ethical guidelines for researching such children must "be based on respect for human rights, equality, diversity, privacy and have a clear commitment to protecting the well-being of all participants".
There were 26,000 children with disabilities living in Ireland but "little is known about their situation and experiences".
To ensure they were fully integrated into society, "we must truly understand their issues and needs", Ms Kerins said. The NDA and other organisations would work "in ways that protect and respect children with disabilities". She added that developing ethical guidelines for research would be a key focus of the NDA conference in Dublin on December 2nd, International Day of People with Disabilities.
Papers for discussion will include ethical dilemmas around research in a nursing home for people with dementia; NDA plans to develop the State's first ethical guidelines for disability research; and the EU initiative to develop professional and ethical guidelines for research.