Guidance for developing ethical research projects involving children

Abstract

The aim of this guidance paper, produced by a working group on behalf of the Department of Children and Youth Affairs (DCYA), is to advise on good practice principles for undertaking research with children (defined in Ireland as people below the age of 18).

The need to protect children when they are involved in research is self-evident, but it has taken a relatively long time to translate this notion into policy and practice. The history of research endeavour includes many unethical practices involving children from intrusive and invasive procedures, to the over-investigation of some populations. Organisations caring for children sometimes regarded them as a ready source of research data with little regard to the ethical issues involved. The voices of children were rarely heard in research and their potential to contribute to its development ignored.

The objective of this document is to provide ethical guidance for developing research projects involving children across a range of disciplines, from medicine to the social sciences. The impetus came firstly from a Department of Children and Youth Affairs commissioned report on ethical issues and children s research, which identified a lack of standardisation in this area (Felzmann et al, 2010). Another incentive was to use the knowledge developed from ethical deliberations relating to the Growing Up in Ireland study. Part of this project has been the development of rigorous ethical procedures to both protect children and facilitate their participation in the research process.

The Working Group was largely formed from the GUI Research Ethics Committee and, as with the latter, participants came from a variety of disciplinary backgrounds research, clinical, ethical/legal, as well as representatives from agencies serving children. It also included DCYA officials Dr. Sinéad Hanafin and Bairbre Meaney. Each committee member brought specific skills, but the success of the Working Group was due to the exceptional commitment they gave to the work, including the drafting of this guidance. The objective of the group, and this national guidance, is to safeguard children within research and to assist researchers to do better, more creative investigations with and for children.