Research Involving Participants with Cognitive Disability and Differences
By Ariel Cascio and Eric Racine
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Image courtesy of Oxford University Press |
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.
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Image courtesy of Wikimedia Commons |
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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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