Consent for treatment of gender dysphoria in minors: evolving clinical and legal frameworks.
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ABSTRACT:
SUBMITTER: Ouliaris C
PROVIDER: S-EPMC9299607 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:The research exemption implemented in the new EU General Data Protection Regulation (EU-GDPR) gives member states leeway in determining whether patient consent is required for secondary data use in medical research. However, even though broad consent has become common in data-rich medical research in many EU countries, giving up consent altogether is likely to be controversial. The aim of this study was to examine whether abolishing consent for secondary data use would be acceptable to patients. A questionnaire study was conducted among 700 outpatients of a northern German university hospital to assess their attitude towards use of clinical data for scientific research without consent. There was both strong willingness to give broad consent for secondary data use (468 of 503 responders, 93.0%) and strong approval of abolishing patient consent (n = 381, 75.7%) among study participants. The willingness to give consent was moderately associated with approval of the respective stipulations by the EU-GDPR. In research settings where broad consent is widely accepted (e.g. university hospitals), abolishing consent for secondary research use of clinical data will likely be acceptable to a large majority of patients.
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Project description:Although frequently discussed in terms of sex dimorphism, the neurobiology of sexual orientation and identity is unknown. We report multimodal magnetic resonance imaging data, including cortical thickness (Cth), subcortical volumes, and resting state functional magnetic resonance imaging, from 27 transgender women (TrW), 40 transgender men (TrM), and 80 heterosexual (40 men) and 60 homosexual cisgender controls (30 men). These data show that whereas homosexuality is linked to cerebral sex dimorphism, gender dysphoria primarily involves cerebral networks mediating self-body perception. Among the homosexual cisgender controls, weaker sex dimorphism was found in white matter connections and a partly reversed sex dimorphism in Cth. Similar patterns were detected in transgender persons compared with heterosexual cisgender controls, but the significant clusters disappeared when adding homosexual controls, and correcting for sexual orientation. Instead, both TrW and TrM displayed singular features, showing greater Cth as well as weaker structural and functional connections in the anterior cingulate-precuneus and right occipito-parietal cortex, regions known to process own body perception in the context of self.
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Project description:The development of next-generation sequencing (NGS) technologies are revolutionizing medical practice, facilitating more accurate, sophisticated and cost-effective genetic testing. NGS is already being implemented in the clinic assisting diagnosis and management of disorders with a strong heritable component. Although considerable attention has been paid to issues regarding return of incidental or secondary findings, matters of consent are less well explored. This is particularly important for the use of NGS in minors. Recent guidelines addressing genomic testing and screening of children and adolescents have suggested that as 'young children' lack decision-making capacity, decisions about testing must be conducted by a surrogate, namely their parents. This prompts consideration of the age at which minors can provide lawful consent to health-care interventions, and consequently NGS performed for diagnostic purposes. Here, we describe the existing legal approaches regarding the rights of minors to consent to health-care interventions, including how laws in the 28 Member States of the European Union and in Canada consider competent minors, and then apply this to the context of NGS. There is considerable variation in the rights afforded to minors across countries. Many legal systems determine that minors would be allowed, or may even be required, to make decisions about interventions such as NGS. However, minors are often considered as one single homogeneous population who always require parental consent, rather than recognizing there are different categories of 'minors' and that capacity to consent or to be involved in discussions and decision-making process is a spectrum rather than a hurdle.
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Project description:In the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, the American Psychiatric Association has changed the diagnosis of gender identity disorder to gender dysphoria (GD). In this critical narrative review we ask: What is gender dysphoria? We report on some of the inconsistencies in the articles that foreground distress while obfuscating the fact that not all trans and intersex people suffer stress or impaired functioning, and the inappropriate referencing to intersex people in the diagnostic criterion, claims about the GD diagnosis contributing to the depathologization of and reducing stigma surrounding trans people, the conceptualizations of "gender dysphoric" research subjects, and finally we question the etiological approaches using GD as a conceptual framework. We further suggest that there are a number of methodological issues that need to be resolved to be able to claim that the GD diagnosis can be validated. To shed light on these paradoxes and methodological issues in the DSM-5, we report on the content validity of GD by reviewing research articles postdiagnostic inception. These findings will contribute to the debate about the validity of GD as a diagnosis for the 21st century for those people who need to live a different gender to that assigned at birth.
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Project description:Gender dysphoria (GD) is a condition in which a person exhibits marked incongruence between their expressed or experienced gender and their sex assigned at birth. The last survey of individuals with GD in Taiwan was conducted approximately 10 years ago. In this study, we investigated the prevalence of GD in Taiwan within the last 10 years as well as comorbidities. A retrospective medical record review was performed for all patients in the database of the Health and Welfare Data Science Center covered by National Health Insurance in Taiwan from January 2010 until December 2019. The study population of persons with GD was defined as individuals who had been diagnosed with transsexualism (transgender or transsexual) or gender identity disorders. Our review found case numbers and prevalence of GD in 2019 were about twice that of patients in 2010 for both assigned males and assigned females at birth. Case numbers for 2010 versus 2019 were 440 versus 867 for assigned males at birth, and 189 versus 386 for assigned females at birth. The 1-year prevalence for 2010 versus 2019 was 3.8/100,000 versus 7.4/100,000 for assigned males at birth, and 1.6/100,000 versus 3.2/100,000 for assigned females at birth. Comorbidities of attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and psychosis were more likely in children with GD younger than 12 years of age; comorbid depression was more likely in adolescents and adults with GD. Improvements in social and mental health support should be provided to help address these comorbidities of ADHD, ASD, and depression among individuals with GD.
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Project description:Gender dysphoria (also known as "transsexualism") is characterized as a discrepancy between anatomical sex and gender identity. Research points towards neurobiological influences. Due to the sexually dimorphic characteristics of the human voice, voice gender perception provides a biologically relevant function, e.g. in the context of mating selection. There is evidence for a better recognition of voices of the opposite sex and a differentiation of the sexes in its underlying functional cerebral correlates, namely the prefrontal and middle temporal areas. This fMRI study investigated the neural correlates of voice gender perception in 32 male-to-female gender dysphoric individuals (MtFs) compared to 20 non-gender dysphoric men and 19 non-gender dysphoric women. Participants indicated the sex of 240 voice stimuli modified in semitone steps in the direction to the other gender. Compared to men and women, MtFs showed differences in a neural network including the medial prefrontal gyrus, the insula, and the precuneus when responding to male vs. female voices. With increased voice morphing men recruited more prefrontal areas compared to women and MtFs, while MtFs revealed a pattern more similar to women. On a behavioral and neuronal level, our results support the feeling of MtFs reporting they cannot identify with their assigned sex.
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Project description:It is unclear whether the research literature on adolescent gender dysphoria (GD) provides sufficient evidence to adequately inform clinical decision making. In the first of a series of three papers, this study sought to systematically review published evidence regarding: the prevalence of GD in adolescence; the proportions of natal males/females with GD in adolescence and whether this changed over time; and the pattern of age at (a) onset (b) referral and (c) assessment. Having searched PROSPERO and the Cochrane library for existing systematic reviews (and finding none), we searched Ovid Medline 1946 -October week 4 2020, Embase 1947-present (updated daily), CINAHL 1983-2020, and PsycInfo 1914-2020. The final search was carried out on the 2nd November 2020 using a core strategy including search terms for 'adolescence' and 'gender dysphoria' which was adapted according to the structure of each database. Papers were excluded if they did not clearly report on clinically-verified gender dysphoria, if they were focused on adult populations, if they did not include original data (epidemiological, clinical, or survey) on adolescents (aged at least 12 and under 18 years), or if they were not peer-reviewed journal publications. From 6202 potentially relevant articles (post de-duplication), 38 papers from 11 countries representing between 3000 and 4000 participants were included in our final sample. Most studies were observational cohort studies, usually using retrospective record review (26). A few compared to normative or population datasets; most (31) were published in the past 5 years. There was significant overlap of study samples (accounted for in our quantitative synthesis). No population studies are available, so prevalence is not possible to ascertain. There is evidence of an increase in frequency of presentation to services, and of a shift in the natal sex of referred cases: those assigned female at birth are now in the majority. No data were available on age of onset. Within the included samples the average age was 13 years at referral, 15 years at assessment. All papers were rated by two reviewers using the Crowe Critical Appraisal Tool v1·4 (CCAT). The CCAT quality ratings ranged from 45% to 96%, with a mean of 78%. Almost half the included studies emerged from two treatment centres: there was considerable sample overlap and it is unclear how representative these are of the adolescent GD community more broadly. The increase in clinical presentations of GD, particularly among natal female adolescents, warrants further investigation. Whole population studies using administrative datasets reporting on GD / gender non-conformity may be necessary, along with inter-disciplinary research evaluating the lived experience of adolescents with GD.
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Project description:Social gender transition is an increasingly accepted intervention for gender variant children and adolescents. To date, there is scant literature comparing the mental health of children and adolescents diagnosed with gender dysphoria who have socially transitioned versus those who are still living in their birth-assigned gender. We examined the mental health of children and adolescents referred to the Gender Identity Development Service (GIDS), a specialist clinic in London, UK, who had socially transitioned (i.e., were living in their affirmed gender and/or had changed their name) versus those who had not socially transitioned. Referrals to the GIDS were aged 4-17 years. We assessed mental health correlates of living in one's affirmed gender among 288 children and adolescents (208 birth-assigned female; 210 socially transitioned) and of name change in 357 children and adolescents (253 birth-assigned female; 214 name change). The presence or absence of mood and anxiety difficulties and past suicide attempts were clinician rated. Living in role and name change were more prevalent in birth-assigned females versus birth-assigned males. Overall, there were no significant effects of social transition or name change on mental health status. These findings identify the need for more research to understand how social transition influences mental health, including longitudinal studies that allow for more confident inferences to be made regarding the relationship between social transition and mental health in young people with gender dysphoria.
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