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.
As per IASSIDD by-laws.
Documents & Publications
Read a Summary for the Proceedings of the IASSIDD Academy Workshop and Rountable on the Paper “The New Eugenics”
Chaired by Professor Emeritus Trevor Parmenter
The Quiet Progress of the New Eugenics
This is the original version of the paper The Quiet Progress Of The New Eugenics, of which a shorter version has been published in the special issue of JPPID on the same topic in May 2019. The original version had not been adjusted to APA style for referencing, and it has not been edited for publication. The original version of our paper has been made available to provide access of the extended argument to participants in the IASSIDD world congress in Glasgow 2019. For references and quotations please use the shorter version as published by JPPID.
Chair: Petra Björne, PhD cognitive science
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: Professor Ruth Northway OBE FRCN PFHEA
Ruth Northway is Professor of Learning Disability Nursing at the University of South Wales, UK where her role encompasses research, research leadership and teaching. Her areas of research interest include the health and well-being of people with learning disabilities, safeguarding people from abuse, and the use of participatory / inclusive research. Her interest in ethics arises from practice-based concerns both in the context of research and professional practice.
She is a member of the Welsh Government Learning Disability Ministerial Advisory Group and past Co-chair of the Welsh Government Learning Disability Advisory Group. She was also Chair of Royal College of Nursing Research Society from 2011 – 2019 and Editor of the Journal of Intellectual Disabilities from 2013 – 2019.
Secretary/Treasurer: Heather Church
Social Media Officer: 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 21 year old daughter, Daelle, who lives with severe and profound disabilities. Read more about her current work at the Transition to Aduthood Project.
Professor Emeritus Trevor R. Parmenter AM PhD FACE FAAIDD FIASSIDD FASID
I held the Foundation Chair of Developmental Disability Studies in the Sydney Medical School, University of Sydney (!997-2010). Currently, I am Honorary Professor in the Schools of Education and Social Work and Health Sciences at the University of Sydney, and Adjunct Professor in the School of Rural Medicine, University of New England. I also held the conjoint position of the Director of the Centre for Disability Studies at the Royal Rehabilitation Centre Sydney. Former positions include Professorial Fellow and Director of the Unit for Community Integration Studies at Macquarie University; prior to which I held teaching and administrative positions in the New South Wales Department of Education and Training. I am a Past President (1996-2000) of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD). In 2005 I was appointed a Member of the Order of Australia for my contributions to research, teaching and services to people with developmental disabilities.
My research and teaching interests have covered a wide variety of issues related to improving the quality of lives of people with disabilities. These have included: employment, transition planning, independent and community living, mental health, behaviours of concern, autistic spectrum disorders, support needs assessment, self-advocacy and the moral status of people with intellectual disabilities.
All of these efforts have been embedded in my keeping close relationships with people with disabilities, their families and disability support organisations. My greatest satisfaction as a teacher, emanates from the tens of students I have successfully supervised for higher research degrees,
In 1995, at an Extraordinary meeting of the IASSIDD General Assembly held in San Francisco, it was resolved to set up Special Interest Research Groups (SIRGs) within the Association. Following the International Congress held in Helsinki, in 1996, a number of SIRGs were established, including Ethics. Its first Roundtable meeting was held in Doorn, The Netherlands, in (date to be confirmed). A second Roundtable was held at the University of Cambridge, UK.
As President of IASSIDD at that time and a strong advocate of the philosophy of science, I took every opportunity to make the case that Ethics, from a philosophical perspective, must be foundational to all scientific endeavours relating to people with intellectual and developmental disabilities. Hence, there should be an active dialogue with other SIRGs. This is still work in progress.
More recently, together with Hans Reinders and Timothy Stainton, also foundational members, I have been exploring the ethical challenges presented when efforts are made to terminate or prevent the lives of people with intellectual disabilities on the basis that the quality of their lives are perceived of poor quality.
Another ethical issue I have raised in the context of COVID-19, is the possible discrimination being made against people with intellectual disabilities when health support resources are limited.
Professor Emeritus Hans S. Reinders PhD:
I started my career as a researcher/lecturer in ethics and disability in the field of bioethics, and joined the first two conferences of the International Association of Bioethics, founded in 1990 by Peter Singer and colleagues in Amsterdam. I left this field and joined IASSID in 1996 because I was done with arguing again and again that people with ID were not to be regarded only, not even primarily, as a medical problem to be solved. When I became professor in the Faculty of Theology, VU University Amsterdam in 1994, I held two chairs, one in ethics, and one in ethics and disability. This has been the case until my retirement in 2016.
The main characteristic of my work has been to dissolve the strong connection of ethics and law that existed in the field of bioethics and that focused on moral quandaries and ‘hot’ topics in the public domain (euthanasia, selective abortion, etc.). Instead I wanted to explore the connection between ethics and culture, mainly because I noticed these quandaries were not decided on the grounds of moral principles, but on the way the lives of persons with IDD and their families were described. This meant to switch the ethical agenda to questions of how disability is construed in the discourses on disability we have in our society, not only in bioethics but also in social policy and service delivery. Probably due to my background in theology I have always been interested in the meaning-making function of assumptions and perceptions that inform how people – as professionals, scientists, administrators, as ‘the public’ – respond to disability in the way they do.
Professor Jennifer Clegg PhD, University of Nottingham, La Trobe University
Professor Emeritus Hans S. Reinders PhD, VU University Amsterdam
Professor Jayne Clapton, Griffith University, Brisbane, Australia
Petra Björne (SIRG Chair): firstname.lastname@example.org
Ruth Northway (SIRG Chair): email@example.com
Michelle King (Social Media): firstname.lastname@example.org