Who is included in research, and who is excluded? What are the understandings of capacity and consent that undergird researchers' and research ethics boards' appraisals of who can consent to participate in research? How do histories of harm inform current protocols of informed consent, and how do measures to "protect" people with cognitive disability and differences perpetuate forms of exclusion? How to recognize autonomy and engage in ethical research, and how and where to build practices anew?
It is at this point, of ethics, autonomy, inclusion, and innovation that this edited volume launches.
Off the bat, questions of language and plurality enter. The 273 page volume – which can be read as both conversation starter and handbook – is focused on these themes in relation to "research involving participants considered to have 'impaired cognition' (as an experience, of long or short duration) or 'cognitive impairments' (as part of a diagnosis)" (xxii). "Considered" is the key word here: as editors M. Ariel Cascio and Eric Racine preface, such focus puts into question "common ways that research ethics deals with participation affected by cognitive impairment, or with cognitively different participants" (xiii). Describing their editorial choices, Cascio and Racine write: "We have deliberately chosen to include in the title of this volume both the terms cognitive disability and cognitive difference, to stress the plurality of experiences and perspectives to capture groups of participants often clustered together but who have wide-ranging conditions, support needs, and abilities. By these terms we mean people who may be considered vulnerable (by researchers, research ethics committees, or other gatekeepers) by virtue of something to do with the mind, brain, or nervous system. This collection of 'cognitive disability and cognitive difference' encompasses a range of people who face common research ethics issues, but sometimes radically different personal and social experiences" (xiii-xiv).
With thirty chapters spread over four sections – Conceptual Frameworks, Challenges, Successes, and Commentaries—this is a landmark volume. Its contributors come from a wide range of fields of study, including anthropology, sociology, health and rehabilitation sciences, and law. While not an explicit topic of discussion, contributors also yield from a wide range of institutional locations: some housed in disability studies programs, with others in ethics programs, or health science units. This range is part of the great generative potential of this volume, as contributors bring experiences from distinct scholarly orientations and institutional locations to their discussions of research ethics and promising practices in undertaking among, and with, people with cognitive disability and differences.
Section 1, Conceptual Frameworks, focuses mainly on examining existing normative models of capacity and consent. In Chapter One, for example, Lauren R. Sankary and Paul J. Ford discuss the perceived vulnerability of individuals with "fluctuating or impaired cognition" (5), and review four models of consent used in research: double consent, proxy consent with participant assent, advance consent, and process consent, ultimately arguing for relationship-based approaches to obtaining informed consent on an ongoing basis (13). Britteny M. Howell and Karrie A. Shogren examine precisely the "Differing Understandings of Informed Consent Held by Research Institutions, People with Intellectual Disability, and Guardians" (27-37). Across chapters in this first section it is clear: there is no uniform way that exists to determine capacity to consent, and models are conflicting.
Section 2, Challenges, and Section 3, Successes, home in on conducting research with people with cognitive disability and differences in light of and despite hegemonic ideas of consent and capacity, ultimately troubling normative constructs and offering new ways forward.
For instance, vulnerability is a word used loosely in conversations and protocols around research ethics: both powerful, and somehow powerfully vague. In their chapter "Disability, Vulnerability, and the Capacity to Consent" Stephanie Patterson and Pamela Block take on vulnerability, and trouble it (67-76). Recognizing the histories of abuse in research that have led to enforced restrictions to protect "vulnerable" human subjects, they yet ask: "But does having a disability automatically and categorically render a person vulnerable in such circumstances?", and argue that in fully accessible environments risks for abuse in participating in non-medical research may be no more than for non-disabled people (68). Calling out the infantilization part of "assuming that people with disability are easy prey for coercion and manipulation" (72), Patterson and Block insist that instead of dividing lines of disability or impairment categories a focus must be maintained on "ability to consent" and "power to resist manipulation" (73).
The dynamism and particularity of such a mode of engagement is one that runs up against the relatively static and categorical determinations of research ethics boards. Interactions with IRBs (Institutional Review Boards), and REB (Research Ethics Boards) are at the forefront of multiple contributions. While contributors agree on the normative power of such institutions, the concrete examples of navigating them are the greatest strength of these chapters. For instance, Mackenzie Salt discusses the issues they encountered in the multi-site ethics review process for doctoral research involving participants on the autism spectrum in Canada (77-86). This includes discussion of conflict between two different REBs in the study, and their effort to reconcile these. Virginie Cobigo and colleagues highlight accessible information and communication, free and informed consent, confidentiality, and risks associated with research participation as the themes that emerged as challenging in their conversations with REBS (185-196). Each subsection that follows includes a box with an example of the solutions they found, such as an example of accessible recruitment material (187), and a third-party confidentiality agreement (191).
Temporality and place are both threads that run through discussions, while the former is more emphasized. Contributors share ethical consensus around the ongoing nature of seeking consent and/or assent, and also focus on such pragmatic methodological issues as scheduling an interview when participants schedules and spaces are mediated and/or populated by others (Cox and colleagues 109-120). The focus on U.S. and Canadian IRBs and REBs across most pieces indicates these national foci; further clarity and discussion of the jurisdictional base of contributors would enhance the volume, while an examination of varying legal norms is a project in and of itself. The particular historical relations between researchers and communities prior to entering fields of studies (be this ethnographic fieldwork or a specific kind of drug trial), as well as differing local norms of autonomy and interdependence, is a critical part of ongoing conversations in this field. Thinking through the exclusions of research may also extend further into specific situations of institutionalized living, and inclusion of potential research participants with cognitive disabilities and differences.
Assuming capacity is a thread that runs through the volume, as contributors also make a clear case against the categorical denial of research participation on the basis of cognitive disability and difference. "Assuming capacity" is an orientation that Anne Kohler names specifically and offers. Drawing on the feminist care ethics of Eva Federer Kittay to emphasize the interdependence of human experience and surface the philosophical fictions of rationality and autonomy (199), Kohler describes processes of assisted interviewing in her ethnographic research among adolescents and adults with Down Syndrome, interviewing that acknowledges the interjections of typically developed parent, friends, support workers, or others involved in the interview yet works against a confirmatory lens that would render the words and through of participants with intellectual disabilities legible only when partnered with these others (200).
Yet, pathways beyond the categorical are not straightforward, and multiplicity and disagreement is a condition that the editors of this volume have not shied away from. This embrace culminates in Section 4, Commentaries. Section 4 opens up a lively discussion of key issues and ideas brought forth in the preceding chapters. These include troubling consent itself (Tramell 221-223), to the editors' reflections on cultures of research and research ethics (Racine 255-257) and "the importance of saying no" (Cascio 259-261). Cascio's piece concludes the volume on a critical note of recognition of the power of research and researchers, and the messiness of engagement: "While research ethics literature tells researchers to be mindful of participants' vulnerability and exhorts researchers to act with care, it provides few concrete details about everyday interactions. How do you tell if someone does not want to participate, especially if they communicate differently than you do? What tone and language can you use to be persuasive and supportive, but not coercive, in the face of participant discomfort or disinterest? … In short, how do you create a space to say no?" (261).
While governance of capacity and consent fall on certain protective institutions, these are not specialist issues, and conversations and concerted efforts towards meaningful and ethical inclusion in research cannot be the sole purview of research focused on so-called "vulnerable" populations alone. Indeed, while the contributors to this volume offer valuable precedents, tips, and grounding points for fellow researchers engaged in or considering engaging in research with people with cognitive disability and differences, its greatest potential for spark may be in the hands of people not already considering these issues. This volume book is one that would be helpful required reading for IRB and REB bodies, and for all researchers considering questions of inclusion and exclusion in their research. Starting from a point of assuming capacity and creating a space to say no, the volume invites a dynamic inversion from existing norms to creating new relations.
