Publication Announcement – Book on Cognitive Disability & Research Ethics

Hello everyone,

I would like to announce a new publication somewhat related to the project on person-oriented research ethics. Ariel Cascio and Eric have an edited volume coming out, published by Oxford University Press. The book is called, Research Involving Participants with Cognitive Disability and Differences: Ethics, Autonomy, Inclusion, and Innovation. It focuses on ethical issues in research involving participants, community partners, and collaborators with cognitive disability and difference. Please see the description below. Not all chapters focus on autism, but for this website I highlight a few that do.

Full details at OUP’s website here.

TITLE: Research Involving Participants with Cognitive Disability and Differences: Ethics, Autonomy, Inclusion, and Innovation

EDITORS: Ariel Cascio, Eric Racine

DESCRIPTION:

Research participants who have cognitive disability and difference may be considered a vulnerable population. At the same time, they should also be empowered to participate in research in order to foster the growth of knowledge and the improvement of practices that concern them. Participating in such research follows the Disability Rights Movement's call - "nothing about us without us."

This volume provides timely, multidisciplinary insights into the ethical aspects of research that includes participants with cognitive disability and difference. These include conditions such as intellectual disability, autism, mild cognitive impairment (MCI), and psychiatric diagnoses. The chapters in this volume describe situations where difficulties arise, And explore strategies for empowerment and inclusion. They draw on both empirical and normative research to offer suggestions for research design, research ethics, and best practices that empower people with cognitive disabilities and differences to participate in research while respecting and managing potential coercion or undue influence.

This interdisciplinary volume includes contributions from scholars in anthropology, sociology, ethics, child studies, health and rehabilitation sciences, philosophy, and law who address these issues in both clinical and social/behavioral research. It will be valuable for anyone conducting research involving these populations in the clinical, humanistic, or social sciences.

SELECTED CHAPTER ABSTRACTS:

“Autism, Autonomy, and Research” by Kenneth A Richman

This chapter addresses ethical issues for informed consent when recruiting autistic participants for research. The process of informed consent for participation in research involves some abilities, such as dialogue and understanding the intentions of the researchers, that can be especially challenging when autistic individuals are being asked to participate. This chapter reviews these abilities, and suggests ways to provide meaningful support to promote autonomy and help researchers meet their responsibilities. Beyond these more general challenges, it explores Hans Jonas’s suggestion that true informed consent for research requires that participants identify with the goals of the researchers. Given the plurality of perspectives on how to respond to autism, Jonas’s ideas point to additional ethical concerns that can arise when autistic people are recruited for research on autism.

“REB/IRB Variability and Other Ethical Challenges in Multi-site Research Involving Participants on the Autism Spectrum” by Mackenzie Salt

Doing research at multiple sites can create ethical challenges for researchers, especially those working with vulnerable populations. During the ethical review process, different research ethics boards can disagree on interpretations of research ethics concepts such as capacity to consent, vulnerability, and autonomy. In this chapter, experience in conducting a multi-year, multicentre study involving studying the communication skills of adults with autism is discussed, and the ethical challenges that arose are addressed, focusing on ethical challenges of recruiting participants from multiple sites and detailing interactions with the various research ethics boards involved. Advice and suggestions are provided for other researchers on how to address some of the challenges in doing multicentre research involving participants from vulnerable populations.