INTRODUCTION

This research brief details the main ethical challenges and corresponding mitigation strategies identified in the literature with regard to the ethical involvement of children with disabilities in evidence generation activities. Evidence generation activities are defined as per the UNICEF Procedure for Ethical Standards in Research, Evaluation, Data Collection and Analysis (2015), as research, evaluation, data collection and analysis.

The United Nations Convention on the Rights of the Child (art. 12) states that children have the right to form and express views freely in all matters affecting them and that the views of the child must be given due weight in accordance with her/his age and maturity. The United Nations Convention on the Rights of Persons with Disabilities (art. 7) states that children with disabilities must enjoy human rights and freedoms on an equal basis with other children, and that they have a right to express their views freely and should be provided with assistance where necessary to realize that right. The two conventions in general, and these two articles specifically, frame this research brief, which aims to encourage practitioners to explicitly consider ethical ways to involve children with disabilities in evidence generation.

The findings detailed in this summary brief are based on a rapid review of 57 relevant papers identified through an online search using a systematic approach and consultation with experts. There was a paucity of evidence focusing specifically on the ethical challenges of involving children with disabilities in evidence generation activities. The evidence that did exist in this area was found to focus disproportionately on high- income countries, with low- and middle-income countries markedly under-represented.

More evidence generation activities involving children with disabilities in low- and middle-income countries are urgently needed. This requires recognition and commitment from research institutions and funding bodies. As set out in the Convention on the Rights of Persons with Disabilities (art. 31), States parties have a responsibility to ensure that appropriate data and information are available to enable them to formulate and implement policies to give effect to the Convention. Governments must undertake, fund, promote, facilitate and encourage more disability- inclusive research that involves children with disabilities and which is ethical. Researchers and institutes involved in evidence generation activities also have a responsibility to address this evidence gap. While pursuing this research agenda, existing (conventional) research practices must be concurrently developed and evolved to be disability-inclusive.