NDA Disability Research Conference 2003

"Ethical Guidance in Disability Research"

The second annual NDA Disability Research Conference took place in Dublin on the 2 December 2003. This year's conference focused on the issue of ethical guidance in disability research. During 2002 the NDA had been developing draft ethical guidelines for disability research. The draft ethical guidelines are based on respect for human rights, equality, diversity, and privacy and have a clear commitment to protecting the well being of all participants. A number of key speakers presented papers examining ethical issues in disability research.

Ethical Guidelines Project

Dr Anne Good, Senior Researcher with the National Disability Authority, and lead researcher on the ethical guidelines project, presented an overview of the development of the guidelines. Her paper argued that all disability research in Ireland should adhere to the core values and principles set out in the NDA drafts ethical guidelines. She further pointed out the role of the state in facilitating the data collection and research of people with disabilities as outlined in the UN Standard Rules of the Equalisation of Opportunities for Persons with Disabilities (1993).

Developing ethical guidelines for research with children with disabilities was another issue addressed in a paper delivered by Dr Jean Whyte, Director of the Children's Research Centre at Trinity College Dublin. Her presentation identified the challenges associated with this work and provided evidence of good practice in other countries.

Informing the Irish debate on ethical guidelines for disability research in Ireland, the conference heard from RESPECT, the EU initiative to develop professional and ethical guidelines for socio-economic research throughout the European Union. The RESPECT paper, Developing Ethical Guidelines for Socio-Economic Research in an EU Context, delivered by Dr Ron Iphofen and Dr Sally, discussed the development of ethical guidelines, in particular how generic ethical principals (for example, voluntary participation and informed consent) can be interpreted and applied when researching vulnerable groups, especially those with a range of physical and learning disabilities.

Ethical issues and how they impacted on research with people with dementia was the topic of a presentation by Dr Gillian McColgan of the University of Stirling, Scotland. Dr McColgan discussed some of the ethical dilemmas raised during research in a nursing home for people with dementia.

The afternoon session of the conference included interactive and consultative workshops to the NDA guidelines and a Q&A session chaired by Mary van Lieshout, Head of Research & Standards Development at the NDA.

The papers presented at this conference are available to download below.

Page last updated: 12/08/2010