scholarly journals Management of ‘disorders of sex development’/intersex variations in children: Results from a freedom of information exercise

2021 ◽  
Vol 21 (2) ◽  
pp. 116-146
Author(s):  
Fae Garland ◽  
Michael Thomson ◽  
Mitchell Travis ◽  
Joshua Warburton
Keyword(s):  
Disorders Of Sex Development ◽  
International Standards ◽  
Freedom Of Information ◽  
Multidisciplinary Teams ◽  
Recent Criticism ◽  
Complex Needs ◽  
Medical Interventions ◽  
Sex Development ◽  
The United Kingdom ◽  
Critical Scrutiny

Non-therapeutic medical interventions on the bodies of children born with disorders of sex development (DSD)/intersex variations have been subject to increasing critical scrutiny. In response to recent criticism directed at the United Kingdom, and early moves to consider reform, we report on a freedom of information exercise that sought to evaluate whether National Health Service England is meeting international standards on optimal clinical management of DSD/intersex variations. The study explored what medical protocols are being followed to help inform potential reform, particularly with regard to non-therapeutic surgery. While the exercise revealed limited examples of promising practice, current protocols in the majority of Trusts appear unlikely to meet the complex needs of these children. We identify areas where significant improvement is needed, including data management, consistency in guideline use, composition of multidisciplinary teams and addressing disciplinary hierarchies within teams. These concerns sharpen criticisms of the lack of recognition of children’s rights in this context.

scholarly journals Drawing the Line Between Essential and Nonessential Interventions on Intersex Characteristics With European Health Care Professionals

2020 ◽  
pp. 108926802096362
Author(s):  
Peter Hegarty ◽  
Marta Prandelli ◽  
Tove Lundberg ◽  
Lih-Mei Liao ◽  
Sarah Creighton ◽  
...  
Keyword(s):  
Health Care ◽  
Human Rights ◽  
Health Care Professionals ◽  
Binary Classification ◽  
Anatomical Variation ◽  
Multidisciplinary Teams ◽  
Parental Distress ◽  
Medical Interventions ◽  
Sex Development ◽  
European Health

Human rights statements on intersex characteristics distinguish legitimate “medically necessary” interventions from illegitimate normalizing ones. Ironically, this binary classification seems partially grounded in knowledge of anatomy and medical interventions; the very expertise that human rights statements challenge. Here, 23 European health professionals from specialist “disorder of sex development” (DSD) multidisciplinary teams located medical interventions on a continuum ranging from “medically essential” to nonessential poles. They explained their answers. Participants mostly described interventions on penile/scrotal, clitoral/labial, vaginal, and gonadal anatomy whose essential character was only partially grounded in anatomical variation and diagnoses. To explain what was medically necessary, health care professionals drew on lay understandings of child development, parental distress, collective opposition to medicalization, patients “coping” abilities, and patients’ own choices. Concepts of “medical necessity” were grounded in a hybrid ontology of patients with intersex traits as both physical bodies and as phenomenological subjects. Challenges to medical expertise on human rights grounds are well warranted but presume a bounded and well-grounded category of “medically necessary” intervention that is discursively flexible. Psychologists’ long-standing neglect of people with intersex characteristics, and the marginalization of clinical psychologists in DSD teams, may contribute to the construction of some controversial interventions as medically necessary.

scholarly journals Developing a Multidisciplinary Team for Disorders of Sex Development: Planning, Implementation, and Operation Tools for Care Providers

2012 ◽  
Vol 2012 ◽  
pp. 1-12 ◽  
Author(s):  
Mary Elizabeth Moran ◽  
Katrina Karkazis
Keyword(s):  
Program Planning ◽  
Disorders Of Sex Development ◽  
Standard Of Care ◽  
Development Planning ◽  
Multidisciplinary Teams ◽  
Care Providers ◽  
Sex Development ◽  
Or Team ◽  
Specialized Team ◽  
Sample Set

In the treatment of patients with disorders of sex development (DSD), multidisciplinary teams (MDTs) represent a new standard of care. While DSDs are too complex for care to be delivered effectively without specialized team management, these conditions are often considered to be too rare for their medical management to be a hospital priority. Many specialists involved in DSD care want to create a clinic or team, but there is no available guidance that bridges the gap between a group of like-minded DSD providers who want to improve care and the formation of a functional MDT. This is an important dilemma, and one with serious implications for the future of DSD care. If a network of multidisciplinary DSD teams is to be a reality, those directly involved in DSD care must be given the necessary program planning and team implementation tools. This paper offers a protocol and set of tools to meet this need. We present a 6-step process to team formation, and a sample set of tools that can be used to guide, develop, and evaluate a team throughout the course of its operation.

scholarly journals Fit for Purpose? Exploring the Role of Freedom of Information Laws and Their Application for Watchdog Journalism

2021 ◽  
pp. 194016122110067
Author(s):  
Mária Žuffová
Keyword(s):  
Differential Treatment ◽  
Freedom Of Information ◽  
The United Kingdom ◽  
The Press ◽  
Fit For Purpose ◽  
The Law ◽  
Ground Delays ◽  
Democratic Principles ◽  
State Relations

Despite great volume of research into press–state relations, we know little about how journalists use information that has been generated through independent bureaucratic processes. The present study addresses this gap by investigating the role of freedom of information (FOI) laws in journalism practice. By surveying journalists ( n = 164), interviewing activists and civil servants ( n = 7) and submitting FOI requests to twenty-one ministerial departments in the United Kingdom, this study explores press-state interactions and the limits of Freedom of Information Act (FOIA) application to advance the media’s monitorial function. The results show that journalists perceive FOIA as an essential tool for their work. However, they often described their experience as negative. They reported refusals lacking legal ground, delays, not responding at all or differential treatment. In response to gating access, journalists might also adopt tactics that use loopholes in the law. The press-state interactions, already marked by suspicion, thus, continue to perpetuate distrust. These findings might have implications for journalism practices, FOIAs’ potential for government oversight and democracy. In particular, the differential treatment of requests undermines equality under the law, one of the fundamental democratic principles. The study concludes with several policy recommendations for FOIA reform to meet journalists’ needs better.

Genome analyses and androgen quantification for an infant with 5α-reductase type 2 deficiency

2021 ◽  
Vol 0 (0) ◽  
Author(s):  
Kazuhisa Akiba ◽  
Keiko Aso ◽  
Yukihiro Hasegawa ◽  
Maki Fukami
Keyword(s):  
Disorders Of Sex Development ◽  
Reference Value ◽  
Ambiguous Genitalia ◽  
Chinese Patients ◽  
Sex Development ◽  
Liquid Chromatography Tandem Mass ◽  
Exon 1 ◽  
Genome Analyses ◽  
Immune Assays

Abstract Objectives 5α-reductase type 2 deficiency due to biallelic SRD5A2 variants is a common form of 46,XY disorders of sex development. Case presentation A Chinese neonate presented with ambiguous genitalia. He carried a homozygous likely_pathogenic SRD5A2 variant (c.650C>A, p.A217E). His apparently nonconsanguineous parents were heterozygotes for the variant. The variant has previously been identified in two Chinese patients. Our patient carried 14.2 Mb loss-of-heterogeneity regions distributed in the genome. The SRD5A2 variant in this family was invariably coupled with two polymorphisms in exon 1 and intron 1. In the patient, blood testosterone (T)/5α-dihydrotestosterone (5αDHT) ratios were elevated before and during mini puberty, and were higher when measured by liquid chromatography-tandem mass spectrometry (LC-MS/MS) than measured by conventional immune assays. Conclusions This study provides evidence for the founder effect of an SRD5A2 variant. Furthermore, our data indicate that there is a need to establish a new reference value for T/5αDHT ratios using LC-MS/MS.

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