Chapter 2: Ethical and Legal Issues in The Collection, Use, and Dissemination of Data on Disability

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.