Skip to main content

Currently Skimming:

7 Measuring Intersex/DSD Populations
Pages 139-150

The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.


From page 139...
... Often, they are not identified as having an intersex variation until later in life, at times in adolescence or adulthood, if at all. EVALUATION OF MEASURES Background: History and Care Unlike sexual identity and gender identity, which have been studied extensively for more than a decade and for which measures have been used, research on intersex people and people with differences in sex development is in its infancy.
From page 140...
... . At the same time that standards of care began to shift, a new system of nomenclature was proposed, using an umbrella term of "disorders of sex development" rather than specific intersex variations and replacing a more confusing system referring to different forms of hermaphroditism (Lee et al., 2006)
From page 141...
... , it is not known how many people have chosen to do so or how many families of intersex infants have chosen this designation at birth. Additionally, some people have cautioned against reflexively identifying intersex infants as an indeterminate or third gender, arguing that this reinforces the "otherness" of intersex children as well as the gender binary (Asia Pacific Forum of National Human Rights Institutions, 2016; Council of Europe Commissioner of Human Rights, 2015)
From page 142...
... A 2018 online, anonymous survey of a convenience sample of 111 adults who self-identified as being intersex or having a diagnosis of a DSD involved cognitive testing of the first single-item measure recommended by the Gender Identity in the U.S. Surveillance Group (GenIUSS)
From page 143...
... Moreover, because the study population was comprised of only those who identified as intersex or had been diagnosed with a DSD, it could not assess the degree to which this measure generates "false positives" -- people who are not intersex but respond that they are. A 2020 community-based participatory survey of 179 respondents that was also conducted online and recruited from intersex support and advocacy groups used a similar question to confirm that participants had intersex variations, as well as another question regarding specific intersex variation (Rosenwohl-Mack et al., 2020, S2 p.
From page 144...
... . The result of the 4.9 percent figure is far higher than usual estimates of intersex prevalence, but it was not possible to determine whether this was due to the overrepresentation of LGBT respondents or misreporting because there was no follow-up question to assess specific intersex variations or the rate of false positives.
From page 145...
... The panel also valued an intersex status question as one that accurately assesses a person's naturally developed sex variation rather than gender identity, while acknowledging that people with sex variations may also assert intersex as a gender identity (Rosenwohl-Mack et al., 2020)
From page 146...
... Both options 2 and 3 are modified versions of GenIUSS group recommendations and effectively divide into two parts the questions that were tested in intersex communities. A version of each bifurcation was tested in population-based surveys of the Center for American Progress and Pennsylvania LGBT Health Needs Assessment: while positive responses rates varied substantially in ways that were difficult to assess given differences among the survey populations, nonresponse rates for both questions were low.
From page 147...
... • The effects of including definitions and examples of terms used in intersex status questions, such as "intersex," "DSD," and specific intersex variations. • The prevalence of "intersex" as a gender identity both among people with known intersex variations and people without intersex variations.
From page 148...
... genitals, reproductive organs, and/or chromosomal patterns that do not fit standard definitions of male or female? Were you born with a variation in ● No The Fenway Institute/ your physical sex characteristics?
From page 149...
... ● No physical differences in sex anatomy, reproductive organs, chromosomes, and/ ● I don't know or hormone function that do not fit typical expectations. These differences are known as variations in sex characteristics, differences in sex development, intersex traits, or sometimes by specific medical terms (like Congenital Adrenal Hyperplasia or Androgen Insensitivity Syndrome)
From page 150...
... Hypospadias Jacobs/XYY Syndrome Kallmann Syndrome Klinefelter Syndrome Late Onset Congenital Adrenal Hyperplasia (late onset CAH) Leydig Cell Hypoplasia Micropenis Mosaicism involving ‘sex' chromosomes MRKH (Mullerian agenesis; vaginal agenesis; congenital absence of vagina)


This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More information on Chapter Skim is available.