GREETINGS
Welcome to the inaugural newsletter of the IASSIDD Ethics SIRG. We hope that this and subsequent newsletters will support you and your work. As you know, every decision regarding practice, policy or research relates to goods that we think ought to be pursued or promoted and harms to be avoided or mitigated. These decisions involve ethical deliberation. Our newsletter aims to keep you informed of news, perspectives, recent publications and relevant professional development events on ethics and intellectual and developmental disabilities.
IASSIDD ETHICS SIRG EXECUTIVE – AN INVITATION TO JOIN US
The present members of the Executive are listed at: https://iassidd.org/sirgs/ethics-intellectual-disabilities/
If you have an interest in promoting ethics within IASSIDD by becoming a member of the Executive of the Ethics SIRG and contributing to its work, we would very much welcome your input and help! Please communicate with Petra Björne, Ethics SIRG Co-Chair: petra.bjorne@malmo.se.
UPCOMING EVENTS
Learning Sets
Join colleagues around the globe to exchange ideas on ethical issues arising in practice. Each Learning Set is organized on a theme with engaging online presentations and discussions.
- Marketization of care (Friday, September 8, 2023), further details to be provided next month.
IASSIDD SIRG ETHICS AGM
****SAVE THE DATE****
The IASSIDD Ethics subcommittee is holding their Annual General Meeting online on Monday, October 16 from 1300-1500 Central European Time. Please feel free to join us to listen to our feedback on our activities and our plans for the coming year. A Zoom link will be sent closer to the time.
Please contact David Treanor david.treanor@utas.edu.au for any further information.
PAST EVENTS
Learning Set on Restrictive Practices
Slides from the following presentations and discussions in this Learning Set are now available to view online at the website of the IASSIDD Ethics SIRG website: https://iassidd.org/sirgs/ethics-intellectual-disabilities/.
- Conceptual clarity towards (least) restrictive practices, by Ada Hui, University of Nottingham, UK.
- New legislation for involuntary care, by Brenda Frederiks, Amsterdam Universitair Medische Centra, Netherlands.
- Rhetoric and reality – staff training, belief change and restrictive practice’, Andrew Hider, Iris Care Group, UK.
- Developing and shaping staff practices, by Roy Deveau, Tizard Centre, University of Kent, Canterbury, UK.
Webinar on Future directions: research, ethics, and people with intellectual disabilities
Report by Dr. Ruth Northway, University of South Wales, UK.
Organized by the IASSIDD Ethics SIRG on February 28, 2023, this online event involved over 20 participants from various countries with differing academic and practice backgrounds. The session commenced with three presentations:
- People with profound intellectual disability as participants in research: Ethical and Method Considerations, by Anne-Marie Martin, University College Cork, Ireland.
- The capacity to consent – a functional social construct? Reflections on research ethics and end of life care for people with intellectual disabilities, by Sabine Schäper, Catholic University of Applied Sciences, Munster, Germany.
- Ethics in precarious times: Persons living with the experience of Intellectual and Developmental Disabilities in times of natural catastrophes, other crises, pandemics and war, by David Treanor, University of Tasmania, Hobart, Australia.
Discussion groups then focused on the following questions:
- What are the future ethical challenges and opportunities in relation to research with people with intellectual disabilities?
- What could the Ethics SIRG do to address these?
- What themes should be developed into presentations / round tables for the 2024 IASSIDD World Congress?
Some key themes emerged from these 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 and promoting the right of people with intellectual disabilities to be included, were identified as priorities. The Ethics SIRG now plans to work with colleagues from other SIRGs to bring forward these key ideas, including during planning for the 2024 IASSIDD World Congress.
RECENT PUBLICATIONS
Article: Björne, P., McGill, P., Deveau, R., & Hofvander, B. (2023). Organisational impact on the use of restrictive measures: The perspective of Swedish front-line managers. Journal of Applied Research in Intellectual Disabilities: JARID, 10.1111/jar.13112. https://doi.org/10.1111/jar.13112
In what context, what kind, and to what extent restrictive measures [RM] can ethically be used are questions that require adequate deliberation. The authors conclude that, “Front-line managers seem to lack the capacity to address the use of RM due to organisational drift; limited manager time and opportunity to allocate resources; inadequate environments; and lack of skilled staff, knowledge and relevant professional input.”
Article: Bredewold, F., & van der Weele, S. (2023). Social inclusion revisited: sheltered living institutions for people with intellectual disabilities as communities of difference. Medicine, Health Care, and Philosophy, 26(2), 201–213. https://doi.org/10.1007/s11019-022-10135-7.
The authors raise provocative questions regarding “what a good life for people with intellectual disabilities looks like and where and how it ought to be realised; questions not posed very often, as they get muzzled by the dominant rhetoric of normalisation and the emphasis on sameness.”
Article: Fisher, K., Desroches, M.L., Marsden, D., Rees, S., Northway, R., Horan, P., Stych, J., Ailey, S.H., Trip, H., Wilson, N., (September 30, 2022). International nursing actions to reduce health inequities faced by people with intellectual and developmental disability. OJIN: The Online Journal of Issues in Nursing Vol. 27, No. 3: https://ojin.nursingworld.org/table-of-contents/volume-27-2022/number-3-september-2022/international-nursing-actions-to-reduce-health-inequities/.
This article describes the creation of the Global IDD Nursing Collaboratory, which aims to share expertise to improve health outcomes and access to health services of people with intellectual and developmental disabilities around the world. The article includes information on helpful international resources.
Book Chapter: Northway, R. and Oloidi, E. (2023). Foundations of intellectual disability. In: Sheerin, F. and Doyle, C. (eds.), Intellectual Disabilities: Health and Social Care Across the Life Span. Chams, Switzerland: Springer, pp. 3-13.
The aim of this chapter is to provide a foundation and context for the other chapters in this book. It will first explore definitions of intellectual disability, and then move to examine how intellectual disability has been understood historically in diverse ways, and how it continues to be understood differently across cultures. Patterns of service provision, care, and support will then be discussed before drawing conclusions.
Article: Ribenfors, F., & Blood, L. (2023). To report or not to report: The ethical complexity facing researchers when responding to disclosures of harm or illegal activities during fieldwork with adults with intellectual disabilities, Ethics and Social Welfare, 17:2, 175-190, DOI: 10.1080/17496535.2022.2149831
Disclosures of harm by participants with intellectual disabilities who are being interviewed for research raise ethical issues that these authors discuss, such as, “Is it right to break confidentiality in the case of every incident of harm? Does breaking confidentiality when faced with a safeguarding concern always protect the participant from harm or is it possible more harm could be caused? Are participants with intellectual disabilities always vulnerable and in need of special consideration? What does it say about the position of the researcher and the power they wield if they override the autonomy of the participant to report a disclosure against their will?”
Article: Strickler, J. G., & Havercamp, S. M. (2023). Evaluating an informed consent process designed to improve inclusion of adults with intellectual disability in research. Research in Developmental Disabilities, 134, 104413. https://doi.org/10.1016/j.ridd.2022.104413.
The authors describe an iterative process which can teach adults with intellectual disabilities about informed consent to participate in research and assess their understanding.
Article: Tuffrey-Wijne, I., Curfs, L., Hollins, S., & Finlay, I. (2023). Euthanasia and physician-assisted suicide in people with intellectual disabilities and/or autism spectrum disorders: investigation of 39 Dutch case reports (2012-2021). British Journal of Psychiatry Open, 9(3), e87. https://doi.org/10.1192/bjo.2023.69
The authors examined cases of people with intellectual disabilities who received euthanasia in the Netherlands. They discuss six cases in detail. Based on this analysis, they urge debate on whether regulations in countries in which euthanasia and assisted suicide are legal, which necessarily must be broad to cover the general population, could offer sufficient protection for people with lifelong, complex psychological and social needs.
OTHER RESOURCES
Case discussion:
https://www.thehastingscenter.org/should-he-have-brain-surgery/
The first in a series of clinical ethics case studies for the Hastings Bioethics Forum (November 2022), based on real cases, discusses the situation of a 21-year-old male with cerebral palsy, quadriplegia, and intellectual disability who required emergency brain surgery. This case raises many ethical issues, including identifying and avoiding ableism in treatment decisions, and recognizing the importance of relational decision-making.