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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.

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.

The rule of law has been tried in many countries under the state of exception during COVID-19. This chapter focusses on the case of Finland, the only Nordic country to declare a state of exception during the pandemic. Drawing from theoretical accounts on the state of exception, it analyses to what extent the Finnish democratic Rechtsstaat has coped in the state of exception.

The authors propose the concepts of a radical and restrained state of exception and argue that while the Finnish states of exception were rather restrained than radical, there are risks involved in the fact that powers granted by the Emergency Powers Act to be used during a state of exception are moved to normal legislation. Indeed, as Giorgio Agamben, among others, has warned, the state of exception may become permanent and undermine democracy and the rule of law. The chapter provides a dialogue between theory and empirics related to a state of exception, applying theoretical insights on the case of Finland during COVID-19.