Advances in Disability Research Ethics: Volume 11

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) aims to transform the lives of people with disabilities around the globe. Many challenges to achieving that goal still remain. The area of disability research ethics is one of those challenges and is the subject of this chapter. Systemic reform of disability research ethics is needed in order to ensure that the work of the UNCRPD rests on a bedrock of quality research and data collection. In that way, progress can be supported and any regression of disabled people’s human rights and equality can be recognised and reversed (Good, 2020). While much work has already been done, inconsistencies remain with regard to the fundamental challenge of removing all ableism from the UNCRPD knowledge base. The COVID-19 pandemic of 2020–2023 starkly revealed the level of remaining ableism across the world, and how this ableism meant that Covid negatively impacted the lives of disabled people more extremely than others. This was revealed, for example, in a recent study of Covid era policies in 14 countries (Shikako et al., 2023) and also in a study of disabled people’s experiences of the Covid pandemic in South Africa (Wickenden et al., 2023). Reformed ethics in research and data collection are needed to expose and understand the problems in policy and practice, during the pandemic, which in some cases reverted to eugenics, and to investigate how to address these. This chapter maps out some possible ways forward in the work to improve human rights and equality-based research as an ethical issue.

The goal of the Convention on the Rights of Persons with Disabilities (CRPD) is to secure the rights of persons with disabilities as full and equal members of society. Achieving these objectives requires appropriate and high-quality data for identifying disability gaps and areas of exclusion. Such data can be then used to develop policies and programmes to address that exclusion, and then to monitor and evaluate their effectiveness. However, researchers and policy makers face a number of challenges when collecting this data. This chapter reviews the various approaches to collecting data on disability, identifying potential sources of relevant data, including through surveys and repurposing of data collated for administrative means. It discusses at length the legal and ethical issues involved in their collection and use for alternative purposes, providing a comprehensive exploration of issues relating to participation, privacy, big data and rights of access. It concludes by suggesting ways forward for creating disability data systems that can fully support efforts to achieve a fully inclusive society.

Research is conducted to inform our understanding of broadly defined topics often described in terms that are used in common discourse. In order to carry out research, it is necessary to develop specific definitions which are also measurable. The way a concept is defined should be determined by the objectives of the research project, making it necessary for these objectives to be clearly stated. For example, if a research enterprise is undertaken to provide information to monitor whether policy commitments have been realised, the definitions used must be grounded in the frameworks that define those commitments. If this is not the case, the research findings cannot be used for their intended purpose. Transparency in how concepts are defined is also key to the ethical use of research findings. Given the complex and multidimensional nature of disability, definition is particularly important in disability research. This chapter will first review the need to clearly define disability when conducting disability research, and will discuss the need to identify the population or populations with disabilities in order to monitor full inclusion in society. The difference in the level of inclusion in society among those with, as compared to those without disability, is referred to as the ‘disability gap’. The Chapter will then address challenges in identifying the population with disabilities consistent with the social and human rights models of disability. Finally, this chapter will conclude with a presentation of the data collection tools developed by the Washington Group on Disability Statistics.

Ethical principles and practices frequently support the position that people with disability are vulnerable. Vulnerability in research traditionally infers a need for protection from harm and raises questions over the person’s capacity to consent and engage. In addition, vulnerability in ethics infers a state of permanency and one that is all-encompassing for everyone within the vulnerable groups. This construction of vulnerability in effect legitimises the exclusion of people with disability from research or monitors and restricts how people with disability can engage in research. This results in an implicitly ableist environment for research. In this chapter, which has been led by researchers with disability, we argue that there is a critical need to move beyond a popularised social construction of vulnerability which serves to perpetuate barriers to including people with disability in research. Like all terms, the traditional and popular construction of vulnerability is open to reclaiming and reframing. Under this reconstruction, what is traditionally viewed as a limiting vulnerability can be owned, openly disclosed and accommodated. Following a pandemic-inspired ‘new normal’ that supports flexible workplace practices, and in accordance with UNCRPD goals of inclusive employment and reducing disability inequity, we argue that the pathway for people with disability as career researchers needs an ethical review and overhaul. We provide readers with a practical roadmap to advance a more inclusive academy for researchers with disability.

The United Nation’s treaty from the Convention on the Rights of Persons with Disabilities (CRPD) speaks to the assurance of rights and access to justice. To assure the rights addressed in the treaty, disability scholars have argued for a collaborative approach between police officers, mental health, Intellectual and Developmental Disabilities, professionals, and disability rights organisations. Internationally, we have witnessed that rights are being trampled at the intersection of race/ethnicity, gender identity, disability, and sexual orientation. Interactions with the police and the various systems are sometimes experienced as sources of trauma, racism, disrespect, pain, and abuse by individuals living with disabilities. Allyship and organising with the community, particularly with BIPOC and other ‘minoritised’ communities, is essential for policy and other systemic change. Community conversations were done to learn how Black, Indigenous, and People of Color (BIPOC) and allies experience and address policing and disability and act at these intersections. The advocacy and activism of Surviving Race: The Intersection of Injustice, Disability, and Human Rights served as the impetus for this study. Surviving Race was created to unite psychiatric survivors, BIPOC impacted by the mental health and disability systems, White allies, and members of the LGBQTIA+ community to stand in solidarity with activists who were demanding systemic change after the deaths of far too many. This chapter explores intersectional and cross-disability allyship, allyship to BIPOC disability, and psychiatric survivor communities. It examines how people with disabilities and allies can more effectively work at the intersection of race, rights, equity, and justice.

This chapter explores the role of an ethics committee led by disabled academics, in supporting co-produced disability research beyond academia, in the context of a five-year research programme in the UK (2015–2020). This chapter includes reflections by the Ethics Committee members, alongside documentary research which analysed the communications between the Ethics Committee and the research projects it supported. This review of the role of the Ethics Committee showed that there were dilemmas in considering the boundaries between ethical review and providing pedagogic advice on research design, and in balancing its role in supporting and regulating research. Ethics review processes are sometimes seen as overly bureaucratic and as an obstacle course for researchers, and this was also sometimes the case for projects supported by the DRILL (Disability Research on Independent Living and Learning) Ethics Committee. Lessons to be learned from the process included that communication between ethics committees and researchers is key, and that ethics review can be a two-way process, recognising the expertise of both the researchers and the reviewers, thus mirroring the principles of co-production. We suggest that an alternative model for ethics review process could build on this generally positive experience of the DRILL Ethics Committee.

The ambition of human rights-based research is to generate an evidence base aligned to specific rights and rights holders. This chapter addresses the question ‘How does the ethical communication of research evidence support the achievement of this ambition?’ It outlines a Communication of Evidence For Impact (CEFI) approach that is focused on the realisation of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). CEFI proposes that human rights-based communication is: a public good; a legal imperative in States that have ratified CRPD, and a moral imperative in States yet to sign or ratify; a core research competency and ethical requirement; participatory; and grounded in a culture of inclusion, intersectionality, and allyship. This chapter explores how five actors – States, research ethics committees, researchers, funders, and publishers – can each contribute to ethical communication. Recommendations are made for including and futureproofing CEFI in a disability research ethics framework.