A/HRC/33/22 use of disaggregated data be consistent with the protection of the right to privacy. A participatory approach and the principle of self-identification can help improve response rates among “hard-to-count” or marginalized populations, and is particularly relevant for those who are discriminated against or excluded from traditional household surveys or administrative records (e.g. homeless persons or migrants). In some contexts, civil society organizations and service providers are best placed to reach these populations and collect data. Decisions concerning collection of data on particularly vulnerable or marginalized groups, including, “legally” invisible groups, for instance, should be made in close partnership or consultation with the group concerned to mitigate associated risks. The registration of children immediately after birth has an impact on the statistical system’s capacity to disaggregate data, and is instrumental for the accuracy of vital statistics and the sampling design of surveys; (c) Self-identification is an essential principle in relation to the identity of an individual or population group, relevant to data collection and the categorization of populations in statistics. Respect for and protection of personal identity is central to human dignity and human rights, and the overriding principle of doing no harm must be respected. Whether it is necessary to include personal identity issues in data collection exercises should be carefully assessed. Data collection exercises should not create or reinforce discrimination, bias or stereotypes against population groups, and any objections by these populations must be taken seriously by data producers. When a survey includes questions on personal identity, those conducting interviews should receive gender and cultural awareness training, including on possible issues of historical legacy; (d) Transparency, or the “right to information”, is central to realization of freedom of expression as specified in international human rights treaties, and plays a key role in a democratic society and in the population’s entitlement to public information.25 Access to information on inequality among population groups is also important for civil society and other stakeholder groups to monitor the realization of human rights more generally. Fulfilment of the right to information in the production of statistics means that civil society organizations should be able to publish and analyse statistics without fear of reprisal, and should also seek to comply with international human rights and statistical standards for their own data collection, storage and dissemination of statistical information; (e) The right to privacy and data protection should be balanced with that of access to information. Increased use of big data and demand for data disaggregation present a challenge to the protection of these rights, as acknowledged in the call for a data revolution.26 Personal data, including but not limited to data on ethnicity, sexual orientation, gender identity or health status, should be handled only with the express consent of the individual concerned. Data collected to produce statistical information must be strictly confidential, used exclusively for statistical purposes and regulated by law, in accordance with the International Covenant on Civil and Political Rights. Data should not be published or publicly accessible in a manner that permits identification of individual data subjects, either directly or indirectly, and should be secured against both natural and human dangers; (f) In the context of the human rights approach to data, accountability refers to data collection for accountability, as well as accountability in data collection. As State institutions, national statistical offices are human rights duty-bearers with an obligation to respect, protect and fulfil human rights in their daily exercise of statistical activities. 25 26 12 As outlined in the Fundamental Principles of Official Statistics. See “A world that counts”, report prepared by the Independent Expert Advisory Group on a Data Revolution for Sustainable Development (2014). Available from www.undatarevolution.org/wpcontent/uploads/2014/11/A-World-That-Counts.pdf.