Freedom from discrimination or freedom to discriminate? Discursive tensions within discrimination policies in medical education

The importance of advancing equity, diversity, and inclusion for all members of the academic medical community has gained recent attention. Academic medical organizations have attempted to increase broader representation while seeking structural reforms consistent with the goal of enhancing equity and reducing disproportionality. However, efforts remain constrained while minority groups continue to experience discrimination. In this study, the authors sought to identify and understand the discursive effects of discrimination policies within medical education. The authors assembled an archive of 22 texts consisting of publicly available discrimination and harassment policy documents in 13 Canadian medical schools that were active as of November 2019. Each text was analysed to identify themes, rhetorical strategies, problematization, and power relations. Policies described truth statements that appear to idealize equity, yet there were discourses related to professionalism and neutrality that were in tension with these ideals. There was also tension between organizations’ framing of a shared responsibility for addressing discrimination and individual responsibility on complainants. Lastly, there were also competing discourses on promoting freedom from discrimination and the concept of academic freedom. Overall, findings reveal several areas of tension that shape how discrimination is addressed in policy versus practice. Existing discourses regarding self-protection and academic freedom suggest equity cannot be advanced through policy discourse alone and more substantive structural transformation may be necessary. Existing approaches may be inadequate to address discrimination unless academic medical organizations interrogate the source of these discursive tensions and consider asymmetries of power

Développement d'un cursus en matière de handicap et de impact sur les étudiants en médecine : une étude de portée

Background: There is an increasing need for a standardized undergraduate disability curriculum for medical students to better equip students with the proper training, knowledge, and skills to provide holistic care for individuals with disabilities. Objectives: The aim of this scoping review was to better understand and analyze the current body of literature focusing on best practice for including disability curricula and its impact on undergraduate medical students Results: Three major components for designing a disability curriculum for undergraduate medical students were obtained from our analysis. The components were: (1) effective teaching strategies, (2) competencies required for disability curriculum, and (3) impact of disability curriculum on medical students. Conclusions: Current literature revealed that exposing medical students to a disability curriculum impacted their overall perceptions about people with disabilities. This allowed them to develop a sense of understanding towards patients with disabilities during their clinical encounters. The effectiveness of a disability curriculum is dependent on the extent to which these interventions are incorporated into undergraduate medical education.Contexte : On constate un besoin croissant de créer une formation uniforme sur le handicap dans le cadre des études médicales de premier cycle afin de les doter des connaissances et des compétences nécessaires pour prodiguer des soins holistiques aux personnes handicapées. Objectifs : Le but de cette revue de la portée était de mieux cerner la littérature scientifique décrivant les meilleures pratiques pour l’élaboration d’un programme d’enseignement sur le handicap et les incidences d’un tel programme sur les étudiants en médecine de premier cycle. Résultats : Nous avons pu dégager trois éléments principaux dont il convient de tenir compte lors de la conception d’un programme d’enseignement sur le handicap au prédoctorat : (1) l’efficacité des stratégies pédagogiques, (2) les compétences à le cadre de la formation sur le handicap, et (3) les incidences de la formation sur les étudiants. Conclusions : La littérature révèle qu’une formation sur le handicap a des incidences sur la manière générale dont les étudiants en médecine perçoivent les personnes qui en souffrent. Par suite d’une telle formation, les étudiants font davantage preuve de compréhension envers les patients lors de leurs rencontres cliniques. L’efficacité d’une formation sur le handicap dépend du degré de son intégration dans le cursus médical de premier cycle

Assessment of intellectual impairment, health-related quality of life, and behavioral phenotype in patients with neurotransmitter related disorders: Data from the iNTD registry

Inherited disorders of neurotransmitter metabolism are a group of rare diseases, which are caused by impaired synthesis, transport, or degradation of neurotransmitters or cofactors and result in various degrees of delayed or impaired psychomotor development. To assess the effect of neurotransmitter deficiencies on intelligence, quality of life, and behavior, the data of 148 patients in the registry of the International Working Group on Neurotransmitter Related Disorders (iNTD) was evaluated using results from standardized age-adjusted tests and questionnaires. Patients with a primary disorder of monoamine metabolism had lower IQ scores (mean IQ 58, range 40-100) within the range of cognitive impairment (<70) compared to patients with a BH4 deficiency (mean IQ 84, range 40-129). Short attention span and distractibility were most frequently mentioned by parents, while patients reported most frequently anxiety and distractibility when asked for behavioral traits. In individuals with succinic semialdehyde dehydrogenase deficiency, self-stimulatory behaviors were commonly reported by parents, whereas in patients with dopamine transporter deficiency, DNAJC12 deficiency, and monoamine oxidase A deficiency, self-injurious or mutilating behaviors have commonly been observed. Phobic fears were increased in patients with 6-pyruvoyltetrahydropterin synthase deficiency, while individuals with sepiapterin reductase deficiency frequently experienced communication and sleep difficulties. Patients with BH4 deficiencies achieved significantly higher quality of life as compared to other groups. This analysis of the iNTD registry data highlights: (a) difference in IQ and subdomains of quality of life between BH4 deficiencies and primary neurotransmitter-related disorders and (b) previously underreported behavioral traits.Dietmar Hopp Stiftung (DE); Medical Faculty of the University of Heidelberg

Insights into the expanding phenotypic spectrum of inherited disorders of biogenic amines

Inherited disorders of neurotransmitter metabolism are rare neurodevelopmental diseases presenting with movement disorders and global developmental delay. This study presents the results of the first standardized deep phenotyping approach and describes the clinical and biochemical presentation at disease onset as well as diagnostic approaches of 275 patients from the registry of the International Working Group on Neurotransmitter related Disorders. The results reveal an increased rate of prematurity, a high risk for being small for gestational age and for congenital microcephaly in some disorders. Age at diagnosis and the diagnostic delay are influenced by the diagnostic methods applied and by disease-specific symptoms. The timepoint of investigation was also a significant factor: delay to diagnosis has decreased in recent years, possibly due to novel diagnostic approaches or raised awareness. Although each disorder has a specific biochemical pattern, we observed confounding exceptions to the rule. The data provide comprehensive insights into the phenotypic spectrum of neurotransmitter disorders.We thank all patients and their families for their contributions to this study and for their trust. T.H. and J.K. were supported the grant from the Ministry of Health of the Czech Republic RVO-VFN 64165 GJIH-0599-00-7-846 and ProgresQ26/LF1. A.G.C. and N.J.P. are supported by FIS P118/00111 “Instituto de Salud Carlos III (ISCIII)” and “Fondo Europeo de desarrollo regional (FEDER)”. T.O., K.J., G.F.H. and O.K.H. were supported in parts by the Dietmar Hopp Foundation, St. Leon-Rot, Germany. M.A.K. is funded by an NIHR Professorship, the Sir Jules Thorn Award for Biomedical Research and the Rosetrees trust. M.V. is supported by Stichting Stofwisselkracht Grant. D.H. acknowledges funding by the Molecular Diagnostics Program of the National Center for Tumor Diseases (NCT) Heidelberg.Peer reviewe

A scoping review for designing a disability curriculum and its impact for medical students

Background: There is an increasing need for a standardized undergraduate disability curriculum for medical students to better equip students with the proper training, knowledge, and skills to provide holistic care for individuals with disabilities.Objectives: The aim of this scoping review was to better understand and analyze the current body of literature focusing on best practice for including disability curricula and its impact on undergraduate medical studentsResults: Three major components for designing a disability curriculum for undergraduate medical students were obtained from our analysis. The components were: (1) effective teaching strategies, (2) competencies required for disability curriculum, and (3) impact of disability curriculum on medical students.Conclusions: Current literature revealed that exposing medical students to a disability curriculum impacted their overall perceptions about people with disabilities. This allowed them to develop a sense of understanding towards patients with disabilities during their clinical encounters. The effectiveness of a disability curriculum is dependent on the extent to which these interventions are incorporated into undergraduate medical education.Contexte : On constate un besoin croissant de créer une formation uniforme sur le handicap dans le cadre des études médicales de premier cycle afin de les doter des connaissances et des compétences nécessaires pour prodiguer des soins holistiques aux personnes handicapées.Objectifs : Le but de cette revue de la portée était de mieux cerner la littérature scientifique décrivant les meilleures pratiques pour l’élaboration d’un programme d’enseignement sur le handicap et les incidences d’un tel programme sur les étudiants en médecine de premier cycle.Résultats : Nous avons pu dégager trois éléments principaux dont il convient de tenir compte lors de la conception d’un programme d’enseignement sur le handicap au prédoctorat : (1) l’efficacité des stratégies pédagogiques, (2) les compétences à le cadre de la formation sur le handicap, et (3) les incidences de la formation sur les étudiants.Conclusions : La littérature révèle qu’une formation sur le handicap a des incidences sur la manière générale dont les étudiants en médecine perçoivent les personnes qui en souffrent. Par suite d’une telle formation, les étudiants font davantage preuve de compréhension envers les patients lors de leurs rencontres cliniques. L’efficacité d’une formation sur le handicap dépend du degré de son intégration dans le cursus médical de premier cycle