Ethics & Intellectual Disabilities

Ethics SIRG: Mission Statement

The special interest research group on ethics and intellectual disability aims at an open exchange of views on ethical issues regarding health and social practices in support of persons with IDD and their families. ‘Ethics’ is taken is a broad sense in which it not only addresses moral quandaries as defined in the domain of public policy, but also looks at the cultural and institutional backgrounds that generate them. It stimulates research on ethics within the field of intellectual and developmental disability, and seeks to disseminate its results in the wider circle of the IASSIDD and the research community of which it is part.

In order to fulfill this mission the SIRG will foster communication between SIRG members and the broader IASSIDD community, seek to organize seminars and symposia at regular intervals on topics relevant to their mission. It will develop opportunities for and contributes to discussing ethical issues at IASSIDD world congresses and support the publication and dissemination of relevant material.

Bylaws: as per IASSIDD by-laws

Ethics SIRG on Twitter!

Come and follow us @IassiddE to get the latest on all things Ethics and Intellectual Disability from around the world!

Contact Social Media Officer Michelle King for enquiries

Past Events

September 18 2023

The effects of ongoing marketization in services for people with ID

Click here – Empowerment nursing home procurement documents
Click here – Prof. Dr. Sabine Schaper Presentation
Click here – Dr. David Treanor Presentation


May 10 – June 12 2023

Restrictive Practices

The IASSIDD Ethics SIRG invites you to a learning set on restrictive practices. We will meet three times, 1.5-2 hours each time. The learning set will cover ethical, legal and practical issues concerning restrictive practices. Presenters will give short introductions, leaving plenty of time for dialogue and sharing. The aim is to learn and collaborate around this topic, to discuss gaps in research, policy/legislation and practice knowledge, and to prepare a roundtable for the IASSIDD World Congress in Chicago, 2024.

The learning set will be moderated by Petra Björne, co-chair of the Ethics SIRG.

Please click on the below to view the presentations:

Click here – Conceptual clarity towards (least) restrictive practices
Click here – New legislation for involuntary care
Click here – Rhetoric and reality – staff training, belief change and restrictive practice
Click here – Developing and shaping staff practice
Click here – The Swedish National Association for people with intellectual disabilities
Click here – SIRG restrictive practices
Click here – On relationships with restraint and reduction


Future Directions: Research, Ethics and People with Intellectual Disability
28 February 2023

This event was held on the 28th February 2023 and involved over 20 participants from various countries with differing academic and practice backgrounds. Some key themes emerged from the discussions including the need for greater discussion regarding issues of capacity and consent – theoretical perspectives and application in practice (mechanisms and processes). The need to work with ethics committees to develop greater understanding of issues such as definitions of vulnerability, and strategies for reducing vulnerability in relation to people with intellectual disabilities, was also highlighted. Finally the need to ensure inclusion in all stages of the research process and the importance of supporting / promoting the right of people with intellectual disabilities to be included was identified as a priority.

The Ethics SIRG now plans to work with colleagues from other SIRGS to take forward these key areas including planning for the 2024 IASSIDD World Congress.

SIRG Executive

Co-Chair: Petra Björne

I work as a Research and Development Coordinator at the Department for Disability Support in Malmö, Sweden. The department employs about 2500 staff, managers and case officers supporting 2000 service users. People with autism and/or ID are supported through residential services, daily activities, personal assistance, etc. My task is to help staff and managers to develop high quality support within a strong rights-based legal framework.

My clinical work is mainly on challenging behavior and on implementing evidence based practice. Research in recent years has focused on aging with ID, and to some extent the legal framework in Sweden for intervening in challenging behavior. I don’t work exclusively as a researcher, or as researchers traditionally do. But I do know what it means to change, sometimes challenge, services, and put research results to use by involving those concerned.

Co-Chair: Ruth Northway OBE FRCN PFHEA

Ruth Northway is Professor of Learning (Intellectual) Disability Nursing at the University of South Wales, UK. She has co-chaired the Ethics SIRG since 2018. Her areas of research interest relate to the health and well being of people with intellectual disabilities and the use of participatory approaches to research. Both areas have important ethical considerations and hence her interest in ethics is very much linked to application in these contexts and to professional practice when working alongside people with intellectual disabilities.

Access her work HERE.

Secretary/Treasurer: Janet Vogt

Social Media & Communications: Michelle King

Michelle is completing a PhD in law at the Australian Health Law Research Centre at QUT. Her work is about legal and administrative decision-making as people who have severe and profound intellectual disabilities transition to adulthood in Australia. Michelle has worked for many years in the University teaching and research sector. She is a lawyer and a sociologist interested in how law works in people’s lives. She has three children, and is also an advocate and decision maker/supporter of her 24 year old daughter, Daelle, who lives with severe and profound disabilities. Read more about her current work at the Transition to Aduthood Project.

Members: 

Sabine Schäper

Sabine Schäper is Professor of Inclusive Education at the Catholic University of Applied Sciences North-Rhine Westphalia, Germany. In her dissertation, she analysed the manifestations and consequences of marketisation in the field of disability services from a theological and social-pedagogical perspective. Her lectures include ethical issues and a human rights based approach to professional practice in disability services. Her research activities focus on ageing and end-of-life care for people with IDD, organizational culture and professional practice around so-called challenging behaviour, and issues around moral distress and prevention of violence in professional practice.

Bill Sullivan                     

John Heng     

David Treanor

Contact Us

International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) 

The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is the first and only world-wide group dedicated to the scientific study of intellectual disability.

Founded in 1964 as the International Association for the Scientific Study of Mental Deficiency, IASSIDD is an international, interdisciplinary and scientific non-governmental organization which promotes worldwide research and exchange of information on intellectual disabilities.