Research Involving Participants with Cognitive Disability and Differences

By Ariel Cascio and Eric Racine

Image courtesy of Oxford University Press

As human beings, we are all different yet part of one humanity. How we deal with differences between ourselves, however, is complex and is embedded in cultural and historical context including such as varying recognition of the value of diversity. Accordingly, cognitive disability and difference are of fundamental importance for the field of ethics.

This topic is sometimes discussed using the concept of neurodiversity. Neurodiversity has strong ties to autistic self-advocacy, but is not (indeed, never has been) limited only to autism. Neurodiversity refers to the many ways that people may be different from one other by virtue of something to do with “the neuro” – neurodevelopmental conditions, neurogenerative conditions, brain injury, mental health, and so on. One important area of scholarship regards research ethics for studies involving individuals with cognitive disability and difference, which may impact informed consent among other components. A neurodiversity-informed perspective raises the core question: how does, can, or should the social context of research address the needs of people with cognitive disability and difference – both participants and researchers – in ways that are ethical and meaningful? Our new book, Research Involving Participants with Cognitive Disability and Differences: Ethics, Autonomy, Inclusion, and Innovation, addresses this question from a variety of angles.

As an anthropologist (Cascio) and a bioethicist (Racine), we undertook this edited volume in order to present cutting-edge research and perspectives on research ethics issues for studies involving individuals with cognitive disability and difference. Such studies have been fraught with challenges. On the one hand, participants with cognitive disability and difference may be particularly vulnerable in research, as seen in dramatic scandals such as the Willowbrook State School hepatitis study scandal as well as every day negative research experiences (e.g., lack of communication and engagement, especially with children). On the other hand, as with many populations considered vulnerable in research, there has been a tendency to address this vulnerability by excluding people with certain diagnoses or characteristics from participating at all (Martino and Schormans 2018).

Our new book focuses especially on innovations for inclusion, highlighting exciting new research that includes diverse participants in studies on a range of topics. It includes contributions from scholars in neuroethics, anthropology, philosophy, and more. They write about research involving participants with conditions such as intellectual disability, autism, mild cognitive impairment, psychiatric diagnoses, Down syndrome, fetal alcohol spectrum disorder, and more. The book’s coverage spans a large portion of the life cycle, from children to older people.

Image courtesy of Wikimedia Commons

The volume is organized into four sections. Section I presents conceptual frameworks addressing concepts of cognitive vulnerability, legal perspectives on decision-making for participants with impaired cognition, differing understandings of informed consent, “errors” in consent made by participants with and without cognitive disability, and perspectives on autism, autonomy, and research. Section II presents chapters addressing challenges to including participants with cognitive disability and difference in research – both as participants and as researchers. Many, though not all, of the chapters in this section focus on negotiations with research ethics committees and related authoritative bodies. Section III builds on these challenges but focuses on stories of successful inclusion. Researchers detail their studies involving diverse participants, engaging participant/stakeholder groups in reflections about research and research ethics itself, and working with research assistants who share a diagnosis with the target participant group. The book ends with several commentaries from these and other scholars, putting some chapters in conversation, extending the dialogue to other cases, and proposing directions for the future.

Research Involving Participants with Cognitive Disability and Differences, with its broad range of topics and their exploration in both clinical and social/behavioral research, will be of interest to anyone conducting research involving participants, collaborators, or stakeholders with cognitive disability and difference. This research need not be about cognitive disability or the specific conditions or diagnoses of participants – this book may also inspire innovations aimed at inclusion in research in general. We also hope the book will be useful to potential research participants or research participation decision-makers, as it provides insight into researchers’ engagement with day to day ethical issues.

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Ariel Cascio, PhD, is currently Assistant Professor in the Art of Medicine at Central Michigan University College of Medicine. From 2016-2019, Dr. Cascio was a postdoctoral researcher at the Pragmatic Health Ethics Research Unit of the Institut de recherches cliniques de Montréal, and from 2018-2019 an SSHRC Banting Postdoctoral Fellow. Dr. Cascio’s research focuses on autism spectrum conditions, identity, subjectivity, and biopolitics. More information on this research can be found at www.autismresearchethics.net (in English and French) and arielcascio.wordpress.com (in English, Italian, French, and German).

Eric Racine, PhD, is Full Research Professor and Director of the Pragmatic Health Ethics Research Unit  at the Institut de recherches cliniques de Montréal (IRCM) with cross-appointments at Université de Montréal and McGill University. He is a leading researcher in neuroethics and the co-editor with John Aspler of Debates About Neuroethics: Perspectives on Its Development, Focus, and Future. Inspired by philosophical pragmatism, his research aims to understand and bring to the forefront the experience of ethically problematic situations by patients and stakeholders and then to resolve them collaboratively through deliberative and evidenced-informed processes.

Want to cite this post?

Cascio, A. & Racine, E. (2019). Research Involving Participants with Cognitive Disability and Differences. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2019/10/research-involving-participants-with.html