Reimagining Disability Research Ethics: Recognizing Rights, Valuing Insights

Summary

This project will produce open-access, evidence-based, and community-engaged innovations in research ethics policies and training for disability-related research. By aligning current practices with disability rights legislation and disability studies insights, these resources will enable researchers to create more ethical, inclusive, accessible, and trustworthy research when working with disability communities.

Collaborators

Danielle Peers - University of Alberta
Kristin Snoddon - Ryerson University
Lindsay Eales - University of Alberta
Katie Aubrecht - St. Francis Xavier University

Project Description

Overview: Disability is a broad human rights category that includes people who identify with physical and intellectual disability, chronic or mental illness, neurodivergence, and who are deaf. 15% of the world’s population and 22% of adults in Canada experience disability.1 Contemporary research ethics (RE) principles that are designed to protect this group inadvertently undermine community trust, self- determination, inclusion, and disability rights. This project will produce evidence-based and community- engaged innovations in RE policies and training that will enable researchers to engage more accessibly, ethically, inclusively and consensually with a wide range of disability communities.
Background: Arguably, one of the greatest innovations in research integrity and public trust has been the implementation of RE protocols. Research conducted in Nazi concentration camps—as well as on institutionalized, impoverished, racialized, and disabled populations globally—had demonstrated widespread disregard for human life and dignity, leading to international agreements such as the Nuremberg Code (1947) and the Declaration of Helsinki (1964).2 These early codes form the bedrock of contemporary RE policies, including those of the European Union, the United States, and Canada.3 Within contemporary RE codes, there are typically two primary disability-related considerations: (in)capacity for informed consent, and special precautions for protecting vulnerable populations from coercion and harm. These principles offer crucial protections, however RE amendments are needed that reflect massive legal and social changes around disability over the last 50 years.
For example, this period has ushered in a proliferation of self-governing, (inter)national organizations and movements around disability rights, deaf culture, mental health consumers, and intellectual disability self-advocacy. Each of these have demanded that all policies, research, and decisions about them involve deep consultation or decision makers from their group.4 This level of consultation is enshrined in contemporary Indigenous RE.5 However, this disability principle is not only absent from all Western national RE codes, provisions around vulnerable populations can serve to deter consultation and assent.6 Given the recent proliferation of researchers and community leaders from these groups, there is capacity to support more collaborative approaches if enabled through RE policy.
Further, the United Nations Declaration of the Rights of Persons with Disabilities (2006) enshrined disability rights in relation to “individual autonomy including the freedom to make one’s own choices... effective participation and inclusion,” as well as “equality of opportunity”.7 Further, it enshrined the right to “seek, receive and impact information and ideas on an equal basis”.8 In contrast, many contemporary RE codes tend to over-rely on legal consent and thus proxies, deterring researchers from using more autonomy-affirming forms of assent, even in low-risk research.9 In addition, no major RE policies require or substantively support all research protocols to be disability or deaf accessible and thus inclusive. Indeed “special considerations” around vulnerable populations arguably dis-incentivize “effective participation and inclusion...equality of opportunity” and the right to “impact information and ideas” in research that is not disability-focused, undermining not only international disability rights, but also the core RE principle of equitably “distributing the benefits and burdens of research participation.”10
Disability communities are not the first to raise concerns about how RE protections sometimes inadvertently get in the way of more rigorous, trustworthy, ethical, affirming, and self-determined research with historically mistreated communities. This project seeks both to learn from, and to be in conversation with, collaboratively-produced Indigenous amendments to national RE protocols.11 Disability RE policies must be deeply intersectional in their approach if they are to serve those most at risk of being both mistreated within, and excluded from, research.12


Purpose and Objectives: The purpose of this project is to develop amendments to existing RE policies and training programs in order to maintain or deepen protections against maltreatment and coercion, while enabling more accessible, inclusive, and collaborative research designs that comply with international disability rights treaties and the priorities of disability communities. Stated otherwise, we will research how RE policies can engage with disability not only as populations vulnerable to mistreatment, but also as a widely divergent class of citizens with accessibility and inclusion rights, individual and community-based knowledges, generative academic insights, and capacities around self-determination that far exceed ableistic assumptions of current RE frameworks. Our project consists of four research phases, each with its own objective. Of note, we expect to be able to use the Einstein Foundation Award to leverage additional funds for phases II and IV.
Phase I: Review of academic and grey literatures. Objective: identify existing best practices, constructive critiques, and promising suggestions around disability-related RE. Over the first year, team members will conduct a widespread international synthesis and analysis of major academic and organizational literatures on the topic, as well as a review of all existing (inter)national policies available in English or French. The review will be published in an open access journal, and a knowledge mobilization version will be posted publicly and shared with participants in phase II.
Phase II: Community Consultation. Objective: engage with community leaders and researchers to collaboratively identity additional RE issues, alternative protocols, and the most pressing training needs. Over the following year, we will host 3 online symposia, each centred on a specific research ethics principle. Symposia will include formal presentations, and more participatory knowledge co-creation that use transformative disability research methods.13 Symposia participants will include researchers who are well-connected to disability communities, research ethicists, as well as leaders and knowledge-holders from disability rights and self-advocacy organizations. Notes and learnings from the symposia will be synthesized and thematically organized by the research team and shared with all participants. Feedback will be solicited through online forms and alternative accessible methods.
Phase III: Drafting Resources. Objective: draft and disseminate creative-commons resources that can be adapted for a wide range of users. Over the following year, the research team will create three resources: a) A position statement outlining current disability-related RE issues and offering evidence-based and community-approved policy amendments and methodological guidelines; b) Training resources for researchers and assessors in relation to these amendments and guidelines; and c) A checklist and learning resource on applying universal access and inclusion principles to research design. We will offer exemplars for incorporating these resources for research teams, Universities, disciplinary associations, funding agencies, and policymakers.
Phase IV: Implementation. Objective: identify early adopters of the policies and resources, and both study and support implementation. Over the following two years we will present our findings at disciplinary gatherings and to funding agencies and policy makers. We will support a small number of interested organizations in adopting and adapting some of our developed resources. Of note, we are already in conversation with Canada’s three major funding agencies about disability-related amendments to their RE guidelines. We intend to use these findings to apply for a subsequent grant in order to assess, improve upon, and multiply both the uptake and impact of these RE changes globally.