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First posted <time class="datePosted" datetime="2012-05-25">25 May 2012</time>. Content last reviewed <time pubdate class="lastReviewed" datetime="2023-10-10">10 October 2023</time> </p> </header> <section class="entry-content narrow cf" itemprop="articleBody"> <p><img data-recalc-dims="1" fetchpriority="high" decoding="async" data-attachment-id="33186" data-permalink="https://interaction.org.au/forms/surveys/" data-orig-file="https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/12/surveys.png?fit=1200%2C675&ssl=1" data-orig-size="1200,675" data-comments-opened="0" data-image-meta="{"aperture":"0","credit":"","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"0"}" data-image-title="surveys icon" data-image-description="" data-image-caption="<p>Including intersex people in surveys, studies and forms</p> " data-medium-file="https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/12/surveys.png?fit=300%2C169&ssl=1" data-large-file="https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/12/surveys.png?fit=740%2C416&ssl=1" src="https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/12/surveys.png?resize=300%2C169&ssl=1" alt="Intersex in surveys and forms" width="300" height="169" class="alignright size-medium wp-image-33186" srcset="https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/12/surveys.png?resize=300%2C169&ssl=1 300w, https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/12/surveys.png?resize=768%2C432&ssl=1 768w, https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/12/surveys.png?resize=1024%2C576&ssl=1 1024w, https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/12/surveys.png?resize=444%2C250&ssl=1 444w, https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/12/surveys.png?w=1200&ssl=1 1200w" sizes="(max-width: 300px) 100vw, 300px" /><br /> This page outlines our recommendations on respectfully including intersex on forms and documents whenever individuals are asked to state their demographic characteristics. We have more detailed advice for researchers on a separate page for institutions conducting <a href="/research/">research and surveys</a>.</p> <div id="attachment_32132" style="width: 970px" class="wp-caption alignnone"><img data-recalc-dims="1" decoding="async" aria-describedby="caption-attachment-32132" data-attachment-id="32132" data-permalink="https://interaction.org.au/forms/hid-panel-2018/" data-orig-file="https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/05/HiD-panel-2018.jpg?fit=960%2C720&ssl=1" data-orig-size="960,720" data-comments-opened="0" data-image-meta="{"aperture":"0","credit":"","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"0"}" data-image-title="HiD-panel-2018" data-image-description="" data-image-caption="<p>Intersex panel participants at the Health in Difference conference, 2018. </p> " data-medium-file="https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/05/HiD-panel-2018.jpg?fit=300%2C225&ssl=1" data-large-file="https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/05/HiD-panel-2018.jpg?fit=740%2C555&ssl=1" src="https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/05/HiD-panel-2018.jpg?resize=740%2C555&ssl=1" alt="Intersex panel participants at the Health in Difference conference, 2018" width="740" height="555" class="size-full wp-image-32132" srcset="https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/05/HiD-panel-2018.jpg?w=960&ssl=1 960w, https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/05/HiD-panel-2018.jpg?resize=300%2C225&ssl=1 300w, https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/05/HiD-panel-2018.jpg?resize=768%2C576&ssl=1 768w, https://i0.wp.com/interaction.org.au/wp-content/uploads/2018/05/HiD-panel-2018.jpg?resize=333%2C250&ssl=1 333w" sizes="(max-width: 740px) 100vw, 740px" /><p id="caption-attachment-32132" class="wp-caption-text">Intersex panel participants at the Health in Difference conference, 2018. We don’t share in common the same chromosomes, birth sex assignment, gender identity. Some of us are queer and some of us are not. Some identify with sex assigned at birth and some have changed sex marker.</p></div> <h3>Who are intersex people</h3> <div class="callout"> <ul> <li><a href="https://interaction.org.au/18106/what-is-intersex/">What is intersex?</a></li> <li><a href="/allies/">Intersex for allies</a></li> <li><a href="/inclusion/">Inclusive practice</a></li> <li><a href="https://interaction.org.au/39950/constructing-intersex-dsd-data/">Policy paper: Constructions of intersex and DSD in Australian data</a></li> </ul> </div> <p>We define intersex in line with a <a href="/18106/what-is-intersex/">standardised definition</a> shared by the United Nations Office of the High Commissioner for Human Rights: </p> <blockquote><p>Intersex people have innate sex characteristics that don’t fit medical and social norms for female or male bodies, and that create risks or experiences of stigma, discrimination and harm. </p></blockquote> <p>This definition does not presuppose any particular biological sex characteristics, sex, gender identity or sexual orientation. </p> <p>IHRA has contributed to the improvement of data quality in many different settings, and so the following questions are consistent with:</p> <ul> <li>the federal government’s <a href="https://www.stylemanual.gov.au/format-writing-and-structure/inclusive-language/gender-and-sexual-diversity">Style Manual</a></li> <li>the 2020 Australian Bureau of Statistics (ABS) <a href="https://www.abs.gov.au/statistics/standards/standard-sex-gender-variations-sex-characteristics-and-sexual-orientation-variables/latest-release">Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables</a></li> <li>the Royal Australian College of General Practitioners (RACGP) Standards for General Practices (5th edition) fact sheet on <a href="https://www.racgp.org.au/running-a-practice/practice-standards/standards-5th-edition/factsheets">Collecting and recording information about patient sex, gender, variations of sex characteristics and sexual orientation</a>, November 2021</li> </ul> <p>Misuses of this term, and uncertainty arising from this, mean that we are increasingly adopting the descriptive phrase “innate variations of sex characteristics” to describe intersex variations. Consistent language has now been adopted in the above national standards.</p> <h3>Asking about sex and gender</h3> <p>Consistent with our definition of intersex, the term intersex should <em>never</em> be inserted into questions asking people to record sex and/or gender. </p> <p>Like everyone else, people with innate variations of sex characteristics are assigned and recorded a sex, reflecting sex characteristics that are observed at birth. In some cases, clinicians will perform a range of tests to determine sex, typically presupposing that assignment to align with a future heterosexual, cisgender identity. Unless an individual determines otherwise for themselves, it is not ethical to disregard recorded sex. Our population respond to questions on gender with the same diverse responses as found in the general population.</p> <p>When/if you ask about sex or gender, such a question should support open or non-binary options. This will offer recognition to anyone with a non-binary or less common gender identity or recorded sex, irrespective of whether or not they have an innate variation of sex characteristics. For example:</p> <p>We strongly recommend supporting multiple choice answers for questions on sex or gender. </p> <blockquote><p> <strong>What was your sex recorded at birth?</strong><br /> Female (F)<br /> Male (M)<br /> Another term [a field to write in a preferred term] </p></blockquote> <blockquote><p> <strong>How do you describe your gender?</strong><br /> Female or woman (F)<br /> Male or man (M)<br /> Non-binary (X)<br /> A different term [a field to write in a preferred term] </p></blockquote> <p>These questions do not establish whether or not an individual has an innate variation of sex characteristics. A separate question is required for this purpose. </p> <h3>Add a separate question on innate variations of sex characteristics</h3> <p>Some of us <em>are</em> intersex, while other people might <em>have</em> an intersex variation or prefer any of an array of other terms. The words we choose reflect our experiences of stigma and misconceptions, and what we are taught by our parents, clinicians and communities. Sometimes people choose different words in different situations.</p> <p>Because of this diversity, questions on intersex should be separated from questions about sex or gender. Separating intersex from a question on sex and/or gender will avoid misgendering or mis-classifying people with intersex variations (describing our sex assignments, sex markers and gender identities inaccurately). It also avoids inadvertently includes false positives, people who mistake intersex for a non-binary gender identity. </p> <p>Adding a specific question will help to prevent false negatives, that is a failure of someone who fits a criterion to tick a survey box that is intended for them. By helping to demonstrate an understanding of intersex variations, it will also help ensure commencement or completion of a survey. This approach also correctly can enable the management of a person’s innate variation of sex characteristics as sensitive data, while this is not currently the case for sex or gender.</p> <h4>Recommended question on innate variations of sex characteristics</h4> <p>It is not possible to assume that survey respondents understand what is meant by the term “intersex”. We strongly recommend making the question descriptive:</p> <blockquote><p><strong>Were you born with a variation of sex characteristics (sometimes called intersex or differences of sex development)?</strong><br /> Yes<br /> No<br /> Don’t know<br /> Prefer not to say </p></blockquote> <p>It may be appropriate to include the responses “Don’t know” or “Prefer not to say”, as shown above.</p> <p>If you have the ability to provide supporting information to help respondents answer this question, we recommend the following language:</p> <blockquote><p>Refers to innate reproductive development, genetics or hormones that do not fit medical norms for female or male bodies. These may be noticed at birth, or they may develop in puberty.</p></blockquote> <p><strong>Important note:</strong> if language on being “<em>born with</em>” variations is removed, then the wording asks a different question because it thus includes people who have <em>acquired</em> variations in sex characteristics, for example, through medical gender transition, female genital mutilation or other trauma, or other health issues. Synonyms for ‘born with’ include ‘innate’. Please ensure that your language specifies innate or inborn traits, either in your question or in supporting information.</p> <h4>Recording the diversity and health needs of people with innate variations of sex characteristics</h4> <p>If you need to capture medical or health information on people with innate variations of sex characteristics, it is appropriate to ask for any available diagnoses, or a description. In doing so, it is important to be aware that some people may lack an accurate diagnosis, and some people mistake intersex for other concepts. Please be aware that this is sensitive information. We recommend consulting our guidance on <a href="/research/">including intersex people in research studies</a>. </p> <h3>More information</h3> <p>Australian Bureau of Statistics. 2021. ‘Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables, 2020’. <a href="https://www.abs.gov.au/statistics/standards/standard-sex-gender-variations-sex-characteristics-and-sexual-orientation-variables/latest-release">https://www.abs.gov.au/statistics/standards/standard-sex-gender-variations-sex-characteristics-and-sexual-orientation-variables/latest-release</a></p> <p>Australian Government. 2020. ‘Gender and Sexual Diversity | Style Manual’. <a href="https://www.stylemanual.gov.au/format-writing-and-structure/inclusive-language/gender-and-sexual-diversity">https://www.stylemanual.gov.au/format-writing-and-structure/inclusive-language/gender-and-sexual-diversity</a></p> <p>Carpenter, Morgan. 2019. ‘Researching Intersex Populations’. Intersex Human Rights Australia. July 23. <a href="https://interaction.org.au/research/">https://interaction.org.au/research/</a>.</p> <p>Carpenter, Morgan. 2022. ‘Ambivalent Attention and Indeterminate Outcomes: Constructing Intersex and DSD in Australian Data’. University of Huddersfield. <a href="https://morgancarpenter.com/intersex-dsd-australian-data/">https://morgancarpenter.com/intersex-dsd-australian-data/</a>.</p> <p>Office of the High Commissioner for Human Rights. 2019. ‘Background Note on Human Rights Violations against Intersex People’. <a href="https://www.ohchr.org/EN/Issues/Discrimination/Pages/BackgroundViolationsIntersexPeople.aspx">https://www.ohchr.org/EN/Issues/Discrimination/Pages/BackgroundViolationsIntersexPeople.aspx</a></p> <h4>Document history</h4> <p>In July 2019, information on researching intersex populations was split from this page. This information can now be found at <a href="https://interaction.org.au/research">https://interaction.org.au/research</a>. 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