Gender Assignment, Reassignment and Outcome in Disorders of Sex Development: Update of the 2005 Consensus Conference

Meyer‐Bahlburg, Heino F. L.; Dalke, Katharine B.; Berenbaum, Sheri A.; Cohen‐Kettenis, Peggy T.; Hines, Melissa; Schober, Justine M.

doi:10.1159/000442386

Cited by 42 publications

(34 citation statements)

References 57 publications

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“…This is presumably mediated through organizational effects on the developing brain as well as the psychosocial effects of somatic virilization. Virilization may impact self-image and lead to negative social reactions, as seen in poorly controlled 46,XX CAH patients, untreated 46,XY 5α-reductase deficiency patients and 17β-HSD3 deficiency patients [78]. …”

Section: Evolving Perceptions: Male or Female Assignment Reassignmenmentioning

confidence: 99%

Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care

et al. 2016

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The goal of this update regarding the diagnosis and care of persons with disorders of sex development (DSDs) is to address changes in the clinical approach since the 2005 Consensus Conference, since knowledge and viewpoints change. An effort was made to include representatives from a broad perspective including support and advocacy groups. The goal of patient care is focused upon the best possible quality of life (QoL). The field of DSD is continuously developing. An update on the clinical evaluation of infants and older individuals with ambiguous genitalia including perceptions regarding male or female assignment is discussed. Topics include biochemical and genetic assessment, the risk of germ cell tumor development, approaches to psychosocial and psychosexual well-being and an update on support groups. Open and on-going communication with patients and parents must involve full disclosure, with the recognition that, while DSD conditions are life-long, enhancement of the best possible outcome improves QoL. The evolution of diagnosis and care continues, while it is still impossible to predict gender development in an individual case with certainty. Such decisions and decisions regarding surgery during infancy that alters external genital anatomy or removes germ cells continue to carry risk.

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Section: Evolving Perceptions: Male or Female Assignment Reassignmenmentioning

confidence: 99%

Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care

et al. 2016

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“…Rather, the study shows that people’s propensity to stigmatize predicted both perceived medical benefits and openness to the video’s different messages about possible medical harms. Increasingly both psychologists (e.g., Hyde, Bigler, Joel, Tate, & van Anders, ), and clinical experts in DSD note that people live lives unbounded by the kinds of gender beliefs that we measured here (Meyer‐Bahlburg et al, ). Stigma reduction in this area might require unlearning these taken‐for‐granted assumptions about gender categories (Garfinkel, ).…”

Section: Discussionmentioning

confidence: 99%

“…Indeed, the U.K. National Health Service may offer less to individuals than is suggested by its medical video that we studied here. For example, contemporary medical consensus asserts that for some individuals with XY genotype and androgen insensitivity who were assigned to a wrong gender category at birth, such as Lexy, “still missing are evidence‐based recommendations for the various genital staging variables available, above or below which cut‐off points an assignment to one gender is more successful than to the other, when considering both gender identity and quality of life outcomes” (Meyer‐Bahlburg et al, , p 116). Such uncertainty is not highlighted by the video, but many intersex‐identified people in the United Kingdom do experience their healthcare experiences as discriminatory, and many avoid healthcare settings for that reason (Government Equalities Office, ).…”

Section: Discussionmentioning

confidence: 99%

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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“…It is interesting to note that whereas communication training is routine for specialties like oncology, there is no requirement for practitioners and researchers in DSD to receive such support [17]. Based on recent guidelines [4-6], we provide a practical tool to assess how information is shared with patients with DSD and their families. This model may also be applicable to other chronic medical conditions.…”

Section: Resultsmentioning

confidence: 99%

“…Information sharing in DSD conditions is particularly challenging since not only is the management of individuals with DSD continually evolving, it is also taking place within the context of changing perceptions of sex and gender, with questioning or rejection of the binary nature of both constructs in parallel with corresponding changes in societal regulations [5, 6]. Communicating DSD information requires navigating difficult subjects, such as the stigma anticipated by the parents or patient, sensitive matters including potential future sexual activity or fertility, and perhaps most challenging, awareness of one’s own tendencies to perpetuate cultural norms that might oppress or limit an individual with a DSD and negatively affect their developing identity.…”

Section: Introductionmentioning

confidence: 99%

Global Application of the Assessment of Communication Skills of Paediatric Endocrinology Fellows in the Management of Differences in Sex Development Using the ESPE E-Learning.Org Portal

et al. 2017

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Background: Information sharing in chronic conditions such as disorders of/differences in sex development (DSD) is essential for a comprehensive understanding by parents and patients. We report on a qualitative analysis of communication skills of fellows undergoing training in paediatric endocrinology. Guidelines are created for the assessment of communication between health professionals and individuals with DSD and their parents. Methods: Paediatric endocrinology fellows worldwide were invited to study two interactive online cases (www.espe-elearning.org) and to describe a best practice communication with (i) the parents of a newborn with congenital adrenal hyperplasia and (ii) a young woman with 46,XY gonadal dysgenesis. The replies were analysed regarding completeness, quality, and evidence of empathy. Guidelines for structured assessment of responses were developed by 22 senior paediatric endocrinologists worldwide who assessed 10 selected replies. Consensus of assessors was established and the evaluation guidelines were created. Results: The replies of the fellows showed considerable variation in completeness, quality of wording, and evidence of empathy. Many relevant aspects of competent clinical communication were not mentioned; 15% (case 1) and 17% (case 2) of the replies were considered poor/insufficient. There was also marked variation between 17 senior experts in the application of the guidelines to assess communication skills. The guidelines were then adjusted to a 3-level assessment with empathy as a separate key item to better reflect the qualitative differences in the replies and for simplicity of use by evaluators. Conclusions: E-learning can play an important role in assessing communication skills. A practical tool is provided to assess how information is shared with patients with DSD and their families and should be refined by all stakeholders, notably interdisciplinary health professionals and patient representatives.

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Gender Assignment, Reassignment and Outcome in Disorders of Sex Development: Update of the 2005 Consensus Conference

Cited by 42 publications

References 57 publications

Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care

Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care

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

Global Application of the Assessment of Communication Skills of Paediatric Endocrinology Fellows in the Management of Differences in Sex Development Using the ESPE E-Learning.Org Portal

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