intellectual disabilities and autism: ethics and practice

This book meaningfully reflects upon difficult, timely, and debated ethics questions relating to people with intellectual disabilities (IDs) and autistic people. The book challenges now dated perceptions and introduces innovative ideas by leading scholars regarding some of the most complex, controversial, and relevant ethical dilemmas involving these neurodiverse populations. People with IDs and/or those on the autism spectrum continue to experience various forms of oppression and unjust treatment across the globe, despite the UN Convention on the Rights of Persons with Disabilities (CRPD).

The collection explores questions such as: Can people with IDs make informed decisions about their medical treatment, living circumstances, and overall life? What are the ethical implications of selective termination of pregnancy based on a gene linked to a condition conferring intellectual impairment? How can we ensure that people with IDs and autistic people are meaningfully included in research? Can people with IDs successfully parent? How can we support the capabilities of neurodiverse populations such that they enjoy the rights afforded by the CRPD? Each contributor critically examines how we can move forward to create a world that understands and respects the rights of every person with ID and/or autism. An indispensable read for bioethicists, ethics students, social justice scholars, and others interested in and working with people with IDs and autistic people.

Andria Bianchi works as a Clinical Ethicist at the Centre for Clinical Ethics at Unity Health Toronto. As part of her role, Andria provides clinical, organizational, and research ethics support to Surrey Place. Surrey Place is the lead agency for Developmental Services Ontario Toronto Region, providing support to people of all ages, including autistic people, and those with developmental and sensory-related concerns. Andria was introduced to Surrey Place ten years ago during her ethics training, and has had the pleasure being their consulting ethicist for the past 5 years. Given her experiences in the developmental sector, Andria is often consulted at local acute and post-acute care hospitals when ethical dilemmas arise regarding the provision of care for people with intellectual disabilities and those on the autism spectrum. In addition to her role as an ethicist, Andria is an Assistant Professor at the University of Toronto in the Dalla Lana School of Public Health, where she has taught Clinical Bioethics to fourth year undergraduate students, supervised Master of Health Sciences in Bioethics students, and offered countless guest lectures. Andria focuses her teaching and research on ethical complexities related to persons with cognitive impairments. Prior to commencing her career in bioethics, she completed her Ph.D. in Philosophy where she focused her doctoral research on sexual decision-making and people with cognitive impairments, specifically those with dementia. Andria has published several individual and co-authored peer-reviewed publications, non-peer reviewed publications, and book chapters, many of which relate to people with cognitive impairments and/or disabilities. She has presented her work at local, national, and international conferences. Andria is also a primary ethics columnist for Hospital News (Canada’s largest healthcare newspaper) and serves as an editor of the Canadian Journal of Bioethics.

Janet Vogt is Senior Research Associate and Manager in the Research, Evaluation & Education Department at Surrey Place. She completed her Ph.D. in Nutritional Sciences and her M.H.Sc. in Bioethics at the University of Toronto, having completed her undergraduate degrees at the University of British Columbia. At Surrey Place, she has been a member of the Research Ethics Board, co-chair of the Clinical Ethics Committee, and currently leads the Ethics Education working group. As the Surrey Place ethics lead with Toronto’s Community Ethics Network, she led the development of an organizational ethics framework and toolkit for community agencies. Each year, she mentors medical students from the University of Toronto, engaging them in projects designed to raise their awareness of bioethics issues arising in the delivery of health care and other services for people with developmental disabilities. She has presented on ethics, developmental disabilities, and nutrition at local, national, and international conferences and has taught university courses in nutrition and research methods as well as giving guest lectures in the Master of Health Sciences (Bioethics) program. Her publications include co-authored peer-reviewed publications, book chapters, and tools to support healthcare access for people with developmental disabilities. Her education in developmental disabilities began in childhood as the sister to an older sibling with a severe developmental disability.