The report Ethnic Origin and Disability Data Collection in Europe: Measuring Inequality—Combating Discrimination is published within the framework of the Equality Data Initiative, a project launched by the Open Society Foundations in collaboration with the Migration Policy Group and the European Network Against Racism to increase awareness within the European Union for the need to collect reliable data for groups at risk of discrimination.
The report challenges the commonly held view in Europe that the collection of disability and ethnic data is categorically prohibited. It voices the necessity to involve the affected communities in the process of defining best practices and to respect binding core principles of data collection such as self-identification of the data subject and consent-based, voluntary, and anonymized data collection.
The focus of the research is on Bulgaria, Germany, Hungary, Ireland, Romania, and Sweden in the field of public education and on France in the field of public employment. Most of these EU member states collect data about their citizens in one or other way. However—as the report suggests—their methods lead to results that are either inaccurate or unreliable. The report makes recommendations for action at both the national and EU levels in order to achieve effective change in the field of equality data and to use data to promote equal treatment.
Advocacy and strategic litigation are needed to steer national debates away from taboos, and question unlawful, harmful, or simply unsuitable data collection practices, and to call for the inclusion of disability and ethnic minority communities in the process. The European Commission and other EU institutions can provide guidance in this process by issuing recommendations and guidelines on equality data collection.