Intersex/variations of sex characteristics and DSD citizenship in the UK, Italy and Switzerland

Monro, Surya; Crocetti, Daniela; Yeadon‐Lee, Tray

doi:10.1080/13621025.2019.1645813

Cited by 41 publications

(84 citation statements)

References 27 publications

(34 reference statements)

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“…“Intersex” refers to biological traits that, and to people who, do not fit typical definitions of male or female embodiment. Incidence estimates vary for intersex, in part due to continuing medical disagreement about the defining features of the category (Griffiths, ), and the United Nations estimates that 0.05%–1.7% of infants are born with some intersex trait (Munro, Crocetti, Yeadon‐Lee, Garland, & Travis, ). Diverse international agencies have recently issued statements that the human rights of such people are risked by existing medical protocols that prescribe irreversible medical interventions on intersex traits (Amnesty International, ; The Council of Europe Commissioner for Human Rights, ; European Union Agency for Fundamental Rights, ; Human Rights Watch, ; United Nations General Assembly, ).…”

Section: Introductionmentioning

confidence: 99%

“…Currently, evidence does not suggest that surgical interventions have slowed down in the UK (Michala, Liao, Wood, Conway, & Creighton, ), and intersex experts continue to disagree about the validity of the term DSD (Delimata, Simmonds, O’Brien, Davis, Auchus, & Lin‐Su, ), while few intersex people or their family members use the term (Davis, ; Jones, ; Lundberg, Hegarty, & Roen, ). The failure of the Consensus statement to bring about a wider consensus beyond biomedical circles has prompted the continuation, diversification, and globalization of intersex social movements and their increasing engagement with international human rights bodies (see Carpenter, ; Davis, ; Munro et al, , for further discussion). These events prompt a broader look at responses to the stigmatization that intersex characteristics can attract from others.…”

Section: Introductionmentioning

confidence: 99%

“…Intersex researchers have applied this stigma framework to make sense of intersex people’s experiences in the past (Preves, ). In the current context, these two approaches are best represented by the continuing medicalization of intersex traits, and the conceptualization of intersex as a social identity that is analogous to lesbian, gay, bisexual, and transgender (LGBT) identities (see Carpenter, ; Munro et al, ). In a recent U.K. survey of LGBT+ people, 1,980 individuals (i.e., 2% of all respondents) self‐identified as intersex (Government Equalities Office, ).…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Stigma as framed onYouTube: Effects of personal experiences videos on students’ beliefs about medicalizing intersex

Hegarty

Smith

Bogan‐Carey

2019

J Applied Social Pyschol

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People with physical intersex characteristics can be subject to medical interventions that risk human rights to bodily integrity and self‐determination. Proponents and opponents of medicalization use personal narrative videos on YouTube to frame intersex as a stigma best understood through a medical or social identity frame. Ninety‐nine psychology students watched one of two YouTube videos with either a medical or social identity frame, or participated in a comparison group who watched no video. Participants extracted the videos’ medical or social identity framing in their own words. The social identity video increased participants’ sense that medicine was more harmful and less beneficial, and the medical video decreased participants’ sense that medicine was harmful. Although the videos aimed at bringing about social understanding of intersex people, neither video impacted stigmatizing beliefs about intersex people as a group. Rather, effects of the videos on beliefs about harms of medicalization were moderated by two stigma measures; social distance and gender binary beliefs. Medical intervention on intersex has been justified, in part, on grounds that stigma is inevitable. While intersex stigma has rarely been empirically examined, the present study shows that people with less propensity to stigmatize see less benefit from medicalizing intersex traits and are more open to learning few framings from personal experience videos.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Stigma as framed onYouTube: Effects of personal experiences videos on students’ beliefs about medicalizing intersex

Hegarty

Smith

Bogan‐Carey

2019

J Applied Social Pyschol

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show abstract

“…While changes can be seen in certain arenas of intersex medical treatment (primarily regarding communication), key rights concerns such as unnecessary childhood medical procedures undoubtedly continued to be practiced across most of the globe (see Carpenter , Monro et al . ). Precisely this continued practice has led intersex activists to appeal directly to IHRMs to denounce IGM as a serious violation of non‐derogable human rights.…”

Section: Pushing For Human Rights Framingmentioning

confidence: 97%

“…Some intersex activists in fact expressed frustration that the 2006 and 2016 guidelines did not appear to have much impact on key rights aspects of medical practice such as childhood surgery rates (see Monro et al . ). The request for legislation also reflects a fear of appropriation (as discussed regarding mental health activism; see Penney and Prescott ) of the positive rhetoric promoted by patient associations into guidelines that do not concretely deliver on patient autonomy.…”

Section: Pushing For Human Rights Framingmentioning

confidence: 97%

‘You're basically calling doctors torturers’: stakeholder framing issues around naming intersex rights claims as human rights abuses

Crocetti

Arfini

Monro

et al. 2020

Sociology Health & Illness

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In this article we address activist, patient advocate and medic perspectives on framing intersex, variations of sex characteristics and disorders/differences in sex development medical treatment as human rights abuses. Problematic aspects of intersex medical treatment have increasingly been highlighted in national debates and international human rights bodies. Some intersex activists have framed aspects of intersex medical treatment as human rights abuses since the 1990s. Other stakeholders in shaping medical treatment, such as patient advocates and medical professionals, are not always content with human rights framing, or even the term intersex. In order to address the different perspectives in this arena we provide background on the primary rights claims that have arisen followed by key human rights framing of these claims. We provide a short discussion of activism styles, looking at pan-intersex social movements and variation-specific patient associations as different styles of health social movements. The analysis of stakeholder perspectives on the use of human rights strategy in health areas provides a useful case study for medical sociology and policy in general.

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Representation of Women Among Individuals With Mild Variants in ABCA4-Associated Retinopathy

Cornelis,

IntHout,

Runhart

et al. 2024

JAMA Ophthalmol

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ImportancePrevious studies indicated that female sex might be a modifier in Stargardt disease, which is an ABCA4-associated retinopathy.ObjectiveTo investigate whether women are overrepresented among individuals with ABCA4-associated retinopathy who are carrying at least 1 mild allele or carrying nonmild alleles.Data SourcesLiterature data, data from 2 European centers, and a new study. Data from a Radboudumc database and from the Rotterdam Eye Hospital were used for exploratory hypothesis testing.Study SelectionStudies investigating the sex ratio in individuals with ABCA4-AR and data from centers that collected ABCA4 variant and sex data. The literature search was performed on February 1, 2023; data from the centers were from before 2023.Data Extraction and SynthesisRandom-effects meta-analyses were conducted to test whether the proportions of women among individuals with ABCA4-associated retinopathy with mild and nonmild variants differed from 0.5, including subgroup analyses for mild alleles. Sensitivity analyses were performed excluding data with possibly incomplete variant identification. χ2 Tests were conducted to compare the proportions of women in adult-onset autosomal non–ABCA4-associated retinopathy and adult-onset ABCA4-associated retinopathy and to investigate if women with suspected ABCA4-associated retinopathy are more likely to obtain a genetic diagnosis. Data analyses were performed from March to October 2023.Main Outcomes and MeasuresProportion of women per ABCA4-associated retinopathy group. The exploratory testing included sex ratio comparisons for individuals with ABCA4-associated retinopathy vs those with other autosomal retinopathies and for individuals with ABCA4-associated retinopathy who underwent genetic testing vs those who did not.ResultsWomen were significantly overrepresented in the mild variant group (proportion, 0.59; 95% CI, 0.56-0.62; P &lt; .001) but not in the nonmild variant group (proportion, 0.50; 95% CI, 0.46-0.54; P = .89). Sensitivity analyses confirmed these results. Subgroup analyses on mild variants showed differences in the proportions of women. Furthermore, in the Radboudumc database, the proportion of adult women among individuals with ABCA4-associated retinopathy (652/1154 = 0.56) was 0.10 (95% CI, 0.05-0.15) higher than among individuals with other retinopathies (280/602 = 0.47).Conclusions and RelevanceThis meta-analysis supports the likelihood that sex is a modifier in developing ABCA4-associated retinopathy for individuals with a mild ABCA4 allele. This finding may be relevant for prognosis predictions and recurrence risks for individuals with ABCA4-associated retinopathy. Future studies should further investigate whether the overrepresentation of women is caused by differences in the disease mechanism, by differences in health care–seeking behavior, or by health care discrimination between women and men with ABCA4-AR.

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Intersex/variations of sex characteristics and DSD citizenship in the UK, Italy and Switzerland

Cited by 41 publications

References 27 publications

Stigma as framed onYouTube: Effects of personal experiences videos on students’ beliefs about medicalizing intersex

Stigma as framed onYouTube: Effects of personal experiences videos on students’ beliefs about medicalizing intersex

‘You're basically calling doctors torturers’: stakeholder framing issues around naming intersex rights claims as human rights abuses

Representation of Women Among Individuals With Mild Variants in ABCA4-Associated Retinopathy

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