PRISM: Human Rights issues relating to Sexual Orientation, Gender Identity and Expression, and Sex Characteristics (SOGIESC) in Aotearoa New Zealand - A report with recommendations Human rights cannot be monitored without data. While all groups have equal access to information in Aotearoa, the kind of information available is not equally collected among those groups. That is, there is an unmet need regarding measuring diversity in SOGIESC. When this diversity is under-reported, it has negative implications for generating an evidence base regarding the issues faced by these communities, and significantly impacts on funding and resourcing.95 A human rights-based approach to data collection requires data to be collected for each specific population.96 Such data should be managed in accordance with ethical, scientific, and human rights standards. It should be made available to the public in a disaggregated form to allow for an independent and deep analysis of inequalities. In this way, it can also help identify the extent of discrimination faced by different groups. The Office of the United Nations High Commissioner for Human Rights (OHCHR) states that a human rights-based approach to data collection is predicated on the principle of self-identification, allowing the populations of interest to be selfdefining. 97 Furthermore, “individuals should have the option to disclose, or withhold, information about their personal characteristics.” Privacy is an issue of particular importance for marginalised communities such as people with diverse sexual orientations, gender identities and expressions, and sex characteristics. Diversity in SOGIESC can be highly stigmatised in certain contexts.98 As such, it is important to collect data on an as-needed basis only, in a manner that is strictly confidential and used exclusively for statistical purposes.99 INTERNATIONAL COVENANT ON CIVIL AND POLITICAL RIGHTS (2) Everyone shall have the right to … seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of his choice. Access to official statistics is part of the public’s right to information.100 SOGIESC-diverse people have diverse needs and experience some different human rights challenges than the general population. As at December 2019 there are limited official data sets on sexual orientation, and none on the number of people with a diverse gender identity, gender expression, or sex characteristics.101 The lack of reliable data on the size and characteristics of SOGIESC-diverse populations limits the capacity of policymakers, administrators, and practitioners to address these needs.102 This means that “in most contexts policymakers are making decisions in the dark, left only with personal preconceptions and Victor Madrigal-Borloz Report to the Human Rights Council by the Independent Expert on protection against violence and discrimination based on sexual orientation and gender identity UN Doc A/HRC/38/43 (11 May 2018) at [64]; Moira Clunie and others Rainbow communities, mental health and addictions: A submission to the Government Inquiry into Mental Health and Addiction (2018). 96 United Nations Human Rights Office of the High Commissioner A human rights-based approach to data (Geneva, 2018). 97 Ibid. 98 Victor Madrigal-Borloz Report to the Human Rights Council by the Independent Expert on protection against violence and discrimination based on sexual orientation and gender identity UN Doc A/HRC/41/45 (14 May 2019) at [17] and [74]. In accordance with the principle of “do no harm,” there must be carefully considered reasoning behind the collection of any data, with rigorous adherence to risk assessments and consideration of data management when it must be collected. See Victor Madrigal-Borloz Report to the General Assembly by the Independent Expert on protection against violence and discrimination based on sexual orientation and gender identity UN Doc A/73/152 (12 July 2018) at [81(c)]. 99 Victor Madrigal-Borloz Report to the Human Rights Council by the Independent Expert on protection against violence and discrimination based on sexual orientation and gender identity UN Doc A/HRC/41/45 (14 May 2019) at [69]. 100 Statistics New Zealand Summary of Principles and Protocols for Producers of Tier 1 Statistics (28 September 2012). 101 As at December 2019, the sexual orientation data sets that do exist include four waves of the Ministry of Health’s NZ Health Survey, starting from the 2015/2016 survey; and Stats NZ’s 2018 General Social Survey. These data are from sample, rather than population, surveys. 102 Victor Madrigal-Borloz Report to the Human Rights Council by the Independent Expert on protection against violence and discrimination based on sexual orientation and gender identity UN Doc A/HRC/41/45 (14 May 2019) at [71]. 95 22 ARTICLE 19