Edited volume call for abstracts - Research Involving Participants with Impaired Cognition: Ethics, Autonomy, Inclusion, and Innovation - Oxford University Press

*Request for abstracts & chapters*

Ariel Cascio & Eric Racine, editors

*Research Involving Participants with Impaired Cognition: Ethics, Autonomy,
Inclusion, and Innovation*,

Oxford University Press

*Abstract*:

Research participants with cognitive impairments may be considered a
vulnerable population, but at the same time should also be empowered to
participate in research. However, cognitive impairment may pose challenges
to ethical research, particularly with respect to the research ethics
principle of autonomy. National guidelines such as the US Belmont Report
and international guidelines such as the Declaration of Helsinki link the
principle of autonomy to key obligations, perhaps most notably informed
consent although several other obligations ensue from the principle of
autonomy. Exercising autonomy in the research process may be difficult for
people experiencing cognitive impairment for a variety of reasons. However,
several alternative or modified strategies, for example when obtaining
informed consent, have been used by researchers. The chapters in this
volume explore these strategies, drawing on both empirical and normative
research as well as personal experience to offer suggestions for research
design, research ethics, and best practices that empower people with
cognitive impairments to participate in clinical and social/behavioral
research while respecting and managing the potential vulnerability of
people in this population to coercion or undue influence. For research
participants with cognitive impairments, participating in research that
concerns them follows the Disability Rights Movement’s call “Nothing About
Us Without Us” and is a vital component of the bioethical principle of
justice. Accordingly, this book will provide an updated guide for
researchers working with populations experiencing impaired cognition, with
a particular focus on informed consent and decision-making in the context
of clinical and nonclinical research.

*Abstract and chapter submission*

In this volume, we hope to bring together chapters discussing conventional
scholarship (e.g. empirical and normative research) as well as more
experiential contributions (e.g., narratives) offering suggestions for
research design, research ethics, and best practices that empower people
with “cognitive impairments” (broadly defined) to participate in clinical
and social/behavioral research while respecting and managing potential
vulnerability to coercion or undue influence.

If you would be willing to contribute, please submit an abstract of around
350 words by October 13, 2017. Should your abstract be accepted, you would
write a chapter of approximately 20 pages (5,000 words), final manuscripts
would be due April 2018 for editorial review.

Submissions should fall into one of the following three categories (please
specify which):

*Section I: Conceptual Frameworks* will set the stage for future sections
by exploring the conceptual, ethical, and normative foundations for a
discussion of autonomy and research ethics pertinent to people with
impaired cognition. This section will include normative scholarship as well
as research into and commentaries on legal and regulatory aspects of the
topic.

*Section II: Challenges to Research Inclusion* will reflect on cases where
the research stopped short of initial goals of inclusion. It will include
case studies and other chapters on challenges (institutional,
methodological, or otherwise) of conducting research with participants with
impaired cognition, with the goal of identifying target areas for change,
intervention, and innovation.

*Section III: Successes in Research Inclusion* will respond to challenges
raised in the previous section by documenting success stories. It will
include chapters on surrogate decision-making, supported decision-making,
and other alternative forms of consent; working with families, professional
caregivers, and other significant others; innovative methods to access
experiences of people with cognitive impairment such as ethnographic and
archival research; and empirical research on and narratives written by or
with participants with impaired cognition.

Please note that at a later point we will also be soliciting commentaries
on the chapters included in this volume. If you would be interested in
writing a commentary, you are welcome to indicate your interest at this
time. However, these decisions will be made at a future date after the
first three sections of the volume have taken shape. A description of the
peer commentaries is below:

*Section IV: Open Peer Commentaries* will succinctly summarize and reflect
upon the major themes presented in this volume, providing key takeaways for
readers. Commentaries will be solicited from experts in in both clinical
and social/behavioral research, in order to speak directly and meaningfully
to these audiences and engage further discussion.

Questions can be directed to corresponding editor, Dr. Ariel Cascio at
ariel.cascio@ircm.qc.ca

Contact Info

Canadian Anthropology Society (CASCA)
c/o Karli Whitmore
125 rue Jean de la Londe, #301
Baie d'Urfe (Québec) H9X 3T8
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