Attitudes towards “disorders of sex development” nomenclature among affected individuals

Johnson, Emilie K.; Rosoklija, Ilina; Finlayson, Courtney; Chen, Diane; Yerkes, Elizabeth B.; Madonna, Mary Beth; Holl, Jane L.; Baratz, Arlene B.; Davis, Georgiann; Cheng, Earl Y.

doi:10.1016/j.jpurol.2017.03.035

Cited by 41 publications

(29 citation statements)

References 16 publications

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“…Many acknowledge that any suggested term might fail to address the diverse concerns raised by different parties (Davis, 2014;Liao & Roen, 2014). The results of this study accord with others (Johnson et al, 2017) that a medically centred wish to make scientific sense of biological processes and provide health care; and a person-centred wish to assist individuals to make sense of diverse sexed embodiment in everyday life, can lead to very different approaches to terminology. As anticipated by Davis (2015), people in this study highlight advantages and disadvantages with both 'Intersex' and 'DSD'.…”

Section: Discussionsupporting

confidence: 58%

“…A third study found that only 10% of people with congenital adrenal hyperplasia (CAH; classified as a DSD when the person has 46,XX chromosomes) and their family members supported the term 'DSD' (Lin-Su, Lekarev, Poppas, & Vogiatzi, 2015). A fourth study surveying the attitudes towards terminology among support group members in the US also concluded that only 24% used 'DSD' to describe their child or themselves (Johnson et al, 2017). These participants preferred 'Intersex', 'differences' or 'variations' of sex development over 'DSD'.…”

mentioning

confidence: 99%

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Making sense of ‘Intersex’ and ‘DSD’: how laypeople understand and use terminology

Lundberg

Hegarty

Roen

2018

Psychology & Sexuality

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Various umbrella terms refer to sex characteristics that do not fit typical binary notions of somatic sex. Key terms include Intersex, reclaimed by 1990s activists, and Disorders of Sex Development (DSD) used in medicine since 2006. Professionals across diverse disciplines express strong preferences for specific terms, making assumptions about what those terms do. Here, we draw on 10 focus group-interviews (41 participants without particular knowledge of Intersex/DSD), and semi-structured face-to-face interviews with 33 parents and 22 young people with personal experience of Intersex/DSD to examine how diverse laypeople understand and use these two umbrella terms and their alternatives. Most participants agreed that 'DSD' was problematic. Most young people and parents used 'descriptive explanations' of how the body looked or worked. Many parents and young people also found 'Intersex' problematic, whilst a majority of focus group participants did not. We conclude that as 'experts by experience', young people and their parents use language pragmatically and flexibly in everyday life to a degree that people unfamiliar with their experiences can easily underestimate. We further conclude that prescriptive discussions on terminology in this area may be needlessly constraining for people with such personal experience.

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Section: Discussionsupporting

confidence: 58%

mentioning

confidence: 99%

Making sense of ‘Intersex’ and ‘DSD’: how laypeople understand and use terminology

Lundberg

Hegarty

Roen

2018

Psychology & Sexuality

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“…Recently, the participation of patients and associations has become of critical importance, and a need discuss this subject has made the current terminology for DSDs undergo scrutiny. 3 The Colombian population is unique in a way because there are specific legislations for the intervention of patients with such conditions, and also because our results clearly show significant limiting factors to a proper comprehensive and transdisciplinary management.…”

mentioning

confidence: 74%

Commentary to: “Transdisciplinary Management of Patients with Disorders of Sex Development in Colombia. Limiting Factors for an Appropriate Management”

Fernández

2018

Urol Colomb

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Comentario a: "Manejo transdisciplinario de pacientes con desórdenes del desarrollo sexual en Colombia. Limitantes para un manejo oportuno e integral" As the first author of the manuscript 1 commented here, it is my responsibility to open to discussion a critical topic that has gained more awareness and will continue to evolve over time, given the participation of patients in this debate. Since the Chicago Consensus in 2005, the terminology for "disorders of sex development" (DSDs) was established.2 Ever since that moment, the academic interest was to universalize the terminology to reduce confusion and to improve the academic utilization of a unified language. It also looked to reduce the stigmatization suffered by individuals with the use of the previous terminology. Recently, the participation of patients and associations has become of critical importance, and a need discuss this subject has made the current terminology for DSDs undergo scrutiny. 3The Colombian population is unique in a way because there are specific legislations for the intervention of patients with such conditions, and also because our results clearly show significant limiting factors to a proper comprehensive and transdisciplinary management.It is critical to implement the new terminology, for it results less confusing and stigmatizing to patients and their families. Other centers with great experience in this field have proposed the use of the term: "atypical genital development" (AGD). 4Along with the use of this new terminology, I invite all caregivers treating patients with AGD to stress the importance of the transdisciplinary management and of promoting management in referral centers for these patients.

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“…Однако позже проведенные исследования показали, что многие больные, их семьи и, соответственно, поддерживающие группы не приняли новую номенклатуру [7,8,9]. Так, большинству больных с врожденной гиперплазией надпочечников (ВГН) при 46,ХХ кариотипе и их родителям термин DSD не нравился, и абсолютное большинство из них не поддерживали его использование [7].…”

Section: терминология/номенклатураunclassified

Disorders of sex differentiation: state of the problem 15 years after the Chicago consensus

Shiryaev

Kagantsov

Сизонов

2020

Probl Endokrinol (Mosk)

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It is well known that the nomenclature and classification were changed in 2005 at the international consensus conference on intersex disorders, held in Chicago, where, among others, the following recommendations were proposed: (1) all children should be assigned a gender identity, and this should be done as quickly as possible, taking into account the time required for the examination. (2) all infants with congenital adrenal hyperplasia and 46,XX karyotype, including those with pronounced masculinization, must be raised as women. (3) Surgical treatment should be performed early and in cases of feminizing genitoplasty, clitoral reduction should be performed simultaneously with reconstruction of the urogenital sinus (separation of the vagina and urethra). An analysis of contemporary literature shows that all these theories, proposed 15 years ago at the Chicago meeting, failed to stand the test of time. New nomenclature and classification are constantly being revised. Currently, many groups of patients want to abolish the term sexual maturity disorders. Recommendations regarding gender reassignment and appropriate early surgical treatment have been completely ignored in some countries. All this was largely facilitated by the confrontational activities of a number of support groups.

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Attitudes towards “disorders of sex development” nomenclature among affected individuals

Cited by 41 publications

References 16 publications

Making sense of ‘Intersex’ and ‘DSD’: how laypeople understand and use terminology

Making sense of ‘Intersex’ and ‘DSD’: how laypeople understand and use terminology

Commentary to: “Transdisciplinary Management of Patients with Disorders of Sex Development in Colombia. Limiting Factors for an Appropriate Management”

Disorders of sex differentiation: state of the problem 15 years after the Chicago consensus

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