The status of support for cannabis regulation in Uruguay 4 years after reform: Evidence from public opinion surveys.

INTRODUCTION AND AIMS: The objective of this study was to measure the public support for marijuana legalisation in Uruguay, both overall and in its provisions, in nearly 4 years after its implementation. DESIGN AND METHODS: Three separate cross-national surveys were conducted in early 2014, late 2015 and mid-2017 with national representative samples of adults. The first study was carried out during the initial months of implementation of the law and used face-to-face interviews (N = 1490); the second survey was conducted using a computer-assisted telephone interviewing system (N = 703); and the third study (N = 1515), using face-to-face interviews, was completed just before the implementation of pharmacy sales. RESULTS: About 60.7% of respondents in 2014 were against marijuana legalisation; in 2017, 54.1% remained opposed to the marijuana law. In 2015, half of the people interviewed (49.9%) supported access to marijuana through self-cultivation, while 38.6% favoured the provision of cannabis clubs and 33.1% agreed with the pharmacy retail provision. Support for medical cannabis was high in 2015, with 74.5% favouring it. DISCUSSION AND CONCLUSIONS: This study shows a change in the public opinion toward legalisation of marijuana although most people still remain opposed to the law. However, the data do not provide indication of a significant change in its use. Results suggest that opposition to legalisation may be focused on the pharmacy retail provision.

Regulating Cannabis Social Clubs: A comparative analysis of legal and self-regulatory practices in Spain, Belgium and Uruguay.

BACKGROUND: Cannabis Social Clubs (CSCs) are a model of non-profit production and distribution of cannabis among a closed circuit of adult cannabis users. CSCs are now operating in several countries around the world, albeit under very different legal regimes and in different socio-political contexts. AIM: In this paper we describe and compare the legal framework and the self-regulatory practices of Cannabis Social Clubs in three countries (Spain, Belgium, and Uruguay). The objective of our comparative analysis is to investigate how CSCs operate in each of these countries. To foster discussions about how one might regulate CSCs to promote public health objectives, we conclude this paper with a discussion on the balance between adequate governmental control and self-regulatory competences of CSCs. METHODS: The data used for this analysis stem from independently conducted local studies by the authors in their countries. Although the particular designs of the studies differ, the data in all three countries was collected through similar data collection methods: analysis of (legal and other documents), field visits to the clubs, interviews with staff members, media content analysis. FINDINGS: We identified a number of similarities and differences among the CSCs' practices in the three countries. Formal registration as non-profit association seems to be a common standard among CSCs. We found nevertheless great variation in terms of the size of these organisations. Generally, only adult nationals and/or residents are able to join the CSCs, upon the payment of a membership fee. While production seems to be guided by consumption estimates of the members (Spain and Belgium) or by the legal framework (Uruguay), the thresholds applied by the clubs vary significantly across countries. Quality control practices remain an issue in the three settings studied here. The CSCs have developed different arrangements with regards to the distribution of cannabis to their members. CONCLUSIONS: By uncovering the current practices of CSCs in three key settings, this paper contributes to the understanding of the model, which has to some extent been shaped by the self-regulatory efforts of those involved on the ground. We suggest that some of these self-regulatory practices could be accommodated in future regulation in this area, while other aspects of the functioning of the CSCs may require more formal regulation and monitoring. Decisions on this model should also take into account the local context where the clubs have emerged. Finally, the integration of medical supply within this model warrants further attention.

A novel mutation in the OAR domain of the ARX gene.

Mutations in ARX gene should be considered in patients with mental disability or/and epilepsy. It is an X-linked gene that has pleiotropic effects. Here, we report the case of a boy diagnosed with Ohtahara syndrome. We performed the molecular analysis of the gene and identified a new missense mutation.

Cannabis clubs in Uruguay: The challenges of regulation.

BACKGROUND: The Uruguayan Cannabis Clubs (UCCs) constitute one of three ways to obtain cannabis under the new cannabis regulation laws. These organizations, formed by up to 45 adults and with a legal limit to grow up to 99 plants, appear to provide a safe method of procuring cannabis in a country that is trying to regulate aspects of cannabis production and distribution. This article describes the operations of the UCCs and the challenges these organizations face. METHODS: The paper draws on data from in-depth interviews conducted with representatives of UCCs and conversations with government officials conducted between March and August of 2015. We collected information about membership, facilities and forms of organization, methods of cannabis cultivation and distribution, and activities within the community. RESULTS: This article describes how UCCs are formed, their resources, rules for cannabis production and distribution; and their relationships with government institutions and the community. Data show that UCCs face four main challenges: compliance with the extant regulation, financial sustainability, tolerance from the community, and collective action dilemmas. CONCLUSIONS: Organizational challenges are as frequent in Uruguay as in other country where cannabis clubs exist, however this paper shows that in order to be sustainable, UCCs need to address issues of collective action, financial sustainability, and possible competition with cannabis distribution via pharmacies that could diminish membership. In the case of Uruguay, UCCs are part of a regulation effort, though they may not be preferred over other legal alternatives already in place.

Cannabis consumption patterns among frequent consumers in Uruguay.

BACKGROUND: In 2013, Uruguay became the first country to fully regulate the cannabis market, which now operates under state control. Cannabis can be legally acquired in three ways: growing it for personal use (self-cultivation), cannabis club membership, and from pharmacies (not yet implemented). Users must be entered into a confidential official registry to gain access. METHODS: This article presents findings of a Respondent Driven Sample survey of 294 high-frequency cannabis consumers in the Montevideo metropolitan area. RESULTS: Frequent consumers resort to more than one method for acquiring cannabis, with illegal means still predominating after 1 year of the new regulation law. Cannabis users overwhelmingly support the current regulation, but many of them are reluctant to register. CONCLUSIONS: Some of the attitudes and behaviors of the high-frequency consumers pose a challenge to the success of the cannabis law. Individuals relying on more than one method of access defy the single access clause, a prerequisite for legal use, while the maximum amount of cannabis individuals can access monthly seems too high even for most frequent consumers, which might promote the emergence of a grey market. Reluctance to register among a significant proportion of high-frequency consumers raises doubts about the law's ability to achieve its stated objectives.

3697G>A in MT-ND1 is a causative mutation in mitochondrial disease.

Mitochondrial diseases are a group of clinically heterogeneous disorders that can be difficult to diagnose. We report a two and a half year old girl with clinical symptoms compatible with Leigh disease but with no definitive diagnosis. Using next generation sequencing we found that mutation 3697G>A was responsible for the patient's clinical symptoms. Corroboration was performed via segregation analysis in mother and sister and by evolutionary analysis that showed that the mutation is located in a highly conserved region across a wide range of species. Functional analyses corroborated the mutation effect and indicated that the pathophysiological alterations were partially restored by Coenzyme Q10. In addition, we proposed that the presence of the mutation at high frequencies causes the phenotype in the patient, while other family members with intermediate levels of heteroplasmy are symptoms-free.

[Advances in the identification of the aetiology of mental retardation]. / Avances en la identificación etiológica del retraso mental.

Despite the advances made in the field of genetics, neuroimaging and metabolic diseases, half the children with mental retardation remain without an aetiological diagnosis. A genetic base is estimated to be present in 40% of cases, environmental teratogens and prematurity in 20%, metabolic diseases in 1-5% and multifactor causes in 3-12%. The family history, the detailed medical records required by dysmorphology and the neurological examination will make it possible to establish or suspect a diagnosis in two thirds of the cases and, in the others, scanning tests will be able to confirm an aetiology. The order of the studies will be guided by the clinical picture: karyotype if a chromosome pathology is suspected, neuroimaging if there is some abnormality in the neurological examination and specific genetic or neurometabolic studies to confirm the clinical presumption. The estimated diagnostic performance of the different techniques is: karyotype, 9%; fragile X, 5%; subtelomeric abnormalities, 4%; neurometabolic diseases, 1%, and new microarray techniques, 19%. As a result of the higher performance and cost-benefit ratio, today the recommended procedure, as the first line of treatment for unexplainable cases of mental retardation, is the study of microarrays. Although the outcomes of these tests are complex and require confirmation and careful interpretation by a specialist in medical genetics, the advances in their technological development and resolution, together with lower costs make this technique a fundamental tool in the identification of the aetiology in these children.

TITLE: Avances en la identificacion etiologica del retraso mental.A pesar de los avances en el campo de la genetica, la neuroimagen y las enfermedades metabolicas, la mitad de los niños con retraso mental permanecen sin diagnostico etiologico. Se estima una base genetica en un 40% de los casos, teratogenos ambientales y prematuridad en un 20%, enfermedades metabolicas en un 1-5% y causas multifactoriales en un 3-12%. Los antecedentes familiares, la historia clinica detallada que precisa la dismorfologia y el examen neurologico permitiran establecer o sospechar un diagnostico en dos tercios de los casos y, en los restantes, las pruebas de barrido podran confirmar una etiologia. El orden de los estudios guiara la clinica: cariotipo si se sospecha de cromosomopatia, neuroimagen si existe una alteracion del examen neurologico y estudios geneticos especificos o neurometabolicos para confirmar la presuncion clinica. El rendimiento diagnostico estimado de las diferentes tecnicas es: cariotipo, 9%; X fragil, 5%; anomalias subtelomericas, 4%; enfermedades neurometabolicas, 1%, y nuevas tecnicas de microarrays, 19%. Debido al mayor rendimiento y coste-beneficio, actualmente se recomienda, como primera linea para los retrasos mentales inexplicables, los estudios de microarrays. Si bien los resultados de estas pruebas son complejos y requieren confirmacion e interpretacion cuidadosa de un especialista en genetica medica, los avances en su desarrollo tecnologico, resolucion y disminucion de los costes determinan que se transforme en una herramienta fundamental en la identificacion etiologica de estos niños.