When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule.

AbstractDespite broad ethical consensus supporting developmentally appropriate disclosure of health information to older children and adolescents, cases in which parents and caregivers request nondisclosure continue to pose moral dilemmas for clinicians. State laws vary considerably regarding adolescents' rights to autonomy, privacy, and confidentiality, with many states not specifically addressing adolescents' right to their own healthcare information. The requirements of the 21st Century Cures Act have raised important ethical concerns for pediatricians and adolescent healthcare professionals regarding the protection of adolescent privacy and confidentiality, given requirements that chart notes and results be made readily available to patients via electronic portals. Less addressed have been the implications of the act for adolescents' access to their health information, since many healthcare systems' electronic portals are available to patients beginning at age 12, sometimes requiring that the patients themselves authorize their parents' access to the same information. In this article, we present a challenging case of protracted disagreement about an adolescent's right to honest information regarding his devastating prognosis. We then review the legal framework governing adolescents' rights to their own healthcare information, the limitations of ethics consultation to resolve such disputes, and the potential for the Cures Act's impact on electronic medical record systems to provide one form of resolution. We conclude that although parents in cases like the one presented here have the legal right to consent to medical treatment on their children's behalf, they do not have a corresponding right to direct the withholding of medical information from the patient.

Laws governing access to sexual health services and information: contents, protections, and restrictions.

Access to sexual health services and information is critical to achieving the highest attainable standard of sexual health, and enabling legal environments are key to advancing progress in this area. In determining overall alignment with human rights standards to respect, protect, and fulfil sexual health-related rights without discrimination, there are many aspects of laws, including their specificity and content, which impact which sexual health services and information are availed, which are restricted, and for whom. To understand the nature of existing legal provisions surrounding access to sexual health services and information, we analysed the content of 40 laws in English, French, and Spanish from 18 countries for the specific sexual health services and information to which access is ensured or prohibited, and the non-discrimination provisions within these laws. Overall, there was wide variation across countries in the types of laws covering these services and the types and number of services and information ensured. Some countries covered different services through multiple laws, and most of the laws dedicated specifically to sexual health addressed only a narrow aspect of sexual health and covered a small range of services. The protected characteristics in non-discrimination provisions and the specificity of these provisions with regard to sexual health services also varied. Findings may inform national legal and policy dialogues around sexual health to identify opportunities for positive change, as well as to guide further investigation to understand the relationship between such legal provisions, the implementation of these laws within countries, and relevant sexual health outcomes.

Access to sexual health services and information is important to being able to have good sexual health. Laws are relevant because what they include and how specific they are affects what types of sexual health services people can access, what types of services are illegal, and whether or not all people can access services equally. We reviewed 40 laws in English, French, and Spanish from 18 countries to understand how many and which sexual health services and information countries ensure in their laws, which sexual health services are illegal, and which people are protected from discrimination in accessing these services. We found that countries use many different types of laws to ensure access to sexual health services or information, and most countries do not cover the same types or number of sexual health services. There are also differences in which people are specifically protected from discrimination in the laws we reviewed. These findings are important because they may help countries identify ways that access to sexual health services and information could be improved so as to improve people's sexual health. They may also guide future research.

COVID-19 increased censorship circumvention and access to sensitive topics in China.

Crisis motivates people to track news closely, and this increased engagement can expose individuals to politically sensitive information unrelated to the initial crisis. We use the case of the COVID-19 outbreak in China to examine how crisis affects information seeking in countries that normally exert significant control over access to media. The crisis spurred censorship circumvention and access to international news and political content on websites blocked in China. Once individuals circumvented censorship, they not only received more information about the crisis itself but also accessed unrelated information that the regime has long censored. Using comparisons to democratic and other authoritarian countries also affected by early outbreaks, the findings suggest that people blocked from accessing information most of the time might disproportionately and collectively access that long-hidden information during a crisis. Evaluations resulting from this access, negative or positive for a government, might draw on both current events and censored history.

Pacientes y protección de datos. Una aproximación jurídica / Patients and data protection. A legal approach

No disponible

[Health data in France: Abundant but complex]. / Les données de santé en France - Abondantes mais complexes.

TITLE: Les données de santé en France - Abondantes mais complexes. ABSTRACT: Alors que l'application de traçage des contacts (contact tracing) StopCovid (transformée à la mi-octobre 2020 en TousAntiCovid), débattue au Parlement1 en raison des inquiétudes qu'elle suscitait concernant la confidentialité des données personnelles et les libertés individuelles du fait qu'elle permet d'alerter un utilisateur s'il s'est trouvé à proximité d'une personne atteinte de la COVID-19, a été adoptée par près de 12 millions de personnes2, un dispositif concernant les données individuelles de santé, aux conséquences potentiellement beaucoup plus importantes pour les citoyens et leurs données personnelles, a commencé à se mettre en place suite à la Loi du 24 juillet 2019 (Loi n° 2019-774) relative à l'organisation et à la transformation du système de santé3 : la plateforme des données de santé, communément appelée Health Data Hub, constituée sous la forme d'un groupement d'intérêt public (GIP). Il ne s'agit plus de simplement signaler qu'on a croisé une personne anonyme infectée par le SARS-Cov-2, mais de réunir, dans une infrastructure informatique unique, un immense ensemble de données personnelles particulièrement sensibles concernant la totalité de la population française. Ce projet suscite désormais un certain intérêt médiatique et un début d'inquiétude. Mais cette inquiétude ne concerne presque uniquement que le fait que ces données sont déposées et gérées dans un cloud appartenant à une société américaine, un nuage informatique qui tombe sous le coup de la loi américaine de 2018 dite « CLOUD act4 ¼, qui ouvre la possibilité d'un transfert des données personnelles vers les États-Unis, comme s'en est inquiété récemment le Conseil d'État.5 Cet aspect est certes très important, mais il masque également de très nombreux enjeux liés au partage des données de santé, et qui sont largement méconnus de la population. Nous nous proposons de rappeler, tout d'abord, ce que sont les données de santé, ce qu'elles apportent et la nécessité d'en faciliter le partage, mais aussi les difficultés rencontrées pour leur accès et leur utilisation. Nous expliquerons ensuite, dans un deuxième article, en quoi cette plateforme des données de santé, telle qu'elle est conçue et pilotée par les pouvoirs publics pour répondre à ces difficultés et pour promouvoir l'intelligence artificielle en santé, est un projet qui soulève de fortes inquiétudes pour les citoyens et la société dans son ensemble. Même si les problèmes posés se présentent sous une forme différente selon les pays, notre propos concernera spécifiquement la situation en France.

How Internet Contracts Impact Research: Content Analysis of Terms of Service on Consumer Product Websites.

BACKGROUND: Companies use brand websites as a promotional tool to engage consumers on the web, which can increase product use. Given that some products are harmful to the health of consumers, it is important for marketing associated with these products to be subject to public health surveillance. However, terms of service (TOS) governing the use of brand website content may impede such important research. OBJECTIVE: The aim of this study is to explore the TOS for brand websites with public health significance to assess possible legal and ethical challenges for conducting research on consumer product websites. METHODS: Using Statista, we purposefully constructed a sample of 15 leading American tobacco, alcohol, psychiatric pharmaceutical, fast-food, and gun brands that have associated websites. We developed and implemented a structured coding system for the TOS on these websites and coded for the presence versus absence of different types of restriction that might impact the ability to conduct research. RESULTS: All TOS stated that by accessing the website, users agreed to abide by the TOS (15/15, 100%). A total of 11 out of 15 (73%) websites had age restrictions in their TOS. All alcohol brand websites (5/15, 33%) required users to enter their age or date of birth before viewing website content. Both websites for tobacco brands (2/15, 13%) further required that users register and verify their age and identity to access any website content and agree that they use tobacco products. Only one website (1/15, 7%) allowed users to display, download, copy, distribute, and translate the website content as long as it was for personal and not commercial use. A total of 33% (5/15) of TOS unconditionally prohibited or put substantial restrictions on all of these activities and/or failed to specify if they were allowed or prohibited. Moreover, 87% (13/15) of TOS indicated that website access could be restricted at any time. A total of 73% (11/15) of websites specified that violating TOS could result in deleting user content from the website, revoking access by having the user's Internet Protocol address blocked, terminating log-in credentials, or enforcing legal action resulting in civil or criminal penalties. CONCLUSIONS: TOS create complications for public health surveillance related to e-marketing on brand websites. Recent court opinions have reduced the risk of federal criminal charges for violating TOS on public websites, but this risk remains unclear for private websites. The public health community needs to establish standards to guide and protect researchers from the possibility of legal repercussions related to such efforts.

JUSTFAIR: Judicial System Transparency through Federal Archive Inferred Records.

In the United States, the public has a constitutional right to access criminal trial proceedings. In practice, it can be difficult or impossible for the public to exercise this right. We present JUSTFAIR: Judicial System Transparency through Federal Archive Inferred Records, a database of criminal sentencing decisions made in federal district courts. We have compiled this data set from public sources including the United States Sentencing Commission, the Federal Judicial Center, the Public Access to Court Electronic Records system, and Wikipedia. With nearly 600,000 records from the years 2001-2018, JUSTFAIR is the first large scale, free, public database that links information about defendants and their demographic characteristics with information about their federal crimes, their sentences, and, crucially, the identity of the sentencing judge.

[Susceptibility genetics of common conditions in clinical practice]. / Des tests génétiques pour prédire des maladies communes.

The genetic tests for "non-rare thrombophilias" (TNR) were introduced into clinical setting immediately after the identification of genetic variants in the mid-90s to predict and prevent venous thromboembolism (VTE). Although being a rare example of a genetic test of susceptibility for complex diseases that has been integrated in medical routine, it is the most widespread post-natal genetics inquiry in France nowadays. Yet, determining whom to test and how to use the results is still controversial. This article outlines the trajectory of its clinical regulation and illustrates the importance of the context of use to understand its diffusion. This analysis is intended to feed a more general reflection on the issues raised by the clinical integration of genetic surveys for common diseases, particularly with regard to the clinical utility of a test (statistical vs. biological), the subjects to be tested (the case index and/or her/his relatives), and the criteria underlying access to these tests (modalities of medico-economic assessment).

TITLE: Des tests génétiques pour prédire des maladies communes. ABSTRACT: Introduit au lendemain de l'identification des « thrombophilies non rares ¼ (TNR), au milieu des années 1990 afin de prédire et de prévenir la maladie thromboembolique veineuse (MTEV), le bilan génétique pour ces thrombophilies est un exemple assez rare de test génétique de susceptibilité pour une maladie complexe, à avoir franchi le pas d'un véritable usage de routine en clinique. Bien que ce test soit le plus répandu des tests de génétique post-natale en France, son usage (À qui proposer le test ? Que faire des résultats ?) fait encore l'objet de débats. Cet article analyse la trajectoire de régulation clinique de ce test et illustre l'importance du contexte spécifique d'usage pour comprendre sa diffusion. Cette analyse vise à nourrir une réflexion plus générale sur les enjeux que pose l'intégration clinique des tests génétiques pour les maladies communes, en considérant notamment les modalités de définition de l'utilité clinique d'un test (statistique versus biologique), des sujets du test (le cas index versus ses apparentés), et des critères en sous-tendant l'accès (modalités des calculs médico-économiques).

Transparência da informação pública no Brasil: uma análise da acessibilidade de Big Data para o estudo das interfaces entre mudanças climáticas, mudanças produtivas e saúde / Public information transparency in Brazil: an analysis of the accessibility of Big Data for the study of the interfaces between climate change, productive changes and health / Transparencia de la información pública en Brasil: un análisis de la accesibilidad de Big Data para el estudio de las interfaces entre cambios climáticos, cambios productivos y salud

A informação pública, garantida por lei no Brasil, é base para a geração de conhecimento adaptativo em situações adversas, como a extrema vulnerabilidade socioambiental e seus impactos na saúde humana. O presente artigo avalia a transparência da informação pública nas áreas de saúde humana (com foco no Sistema Único de Saúde ­ SUS), mudanças produtivas (uso do solo) e mudanças climáticas (chuva e temperatura), utilizando dados de 5.570 municípios brasileiros, ao longo dos últimos 20 anos. A experiência da construção de uma base nacional de dados (Data Lake) a partir de informações disponibilizadas em bases públicas (ou público-privadas) ­ DATASUS, MapBiomas, Instituto Nacional de Meteorologia (Inmet) e Hidroweb da Agência Nacional de Águas (ANA) ­ confirmou que, na prática, a acessibilidade da informação pública no Brasil apresenta entraves importantes. Incluímos recomendações sobre como ela pode ser aprimorada para tornar os direitos de acesso à informação uma realidade mais concreta para o cidadão brasileiro.

The transparency of public information, a right that is entitled by law in Brazil, is the basis to generate adaptive knowledge in adverse situations, such as extreme socio-environmental vulnerability and its impacts on human health. This article evaluates the transparency of public information in three areas ­ i) human health, focusing on the Sistema Único de Saúde ­ SUS (Unified Health System); ii) productive changes (land use indicators); and iii) climate changes (rain and temperature indicators) ­ using data from all the 5,570 Brazilian municipalities over the last 20 years. The experience of building a national database (Data Lake) from available information in public (or public-private) databases ­ DATASUS, MapBiomas, Instituto Nacional de Meteorologia ­ Inmet (National Institute of Meteorology), and Hidroweb of the Agência Nacional de Águas ­ ANA (National Water Agency) ­ confirmed that, in practice, the accessibility of public information in Brazil suffers from significant shortcomings. We include some recommendations for and how it could be improved so that the access rights to information becomes a more concrete reality for the Brazilian citizen.

La información pública, garantizada por ley en Brasil, es la base para la generación de conocimiento adaptativo en situaciones adversas, como la extrema vulnerabilidad socioambiental y sus impactos en la salud humana. Este artículo evalúa la transparencia de la información pública en las áreas de salud humana (dirigindo la atención hacia el Sistema Único de Saúde ­ SUS (Sistema Único de Salud), cambios productivos (uso del suelo) y cambios climáticos (lluvia y temperatura), con datos de los 5.570 municipios brasileños, durante los últimos 20 años. La experiencia de la construcción de una base nacional de datos (Data Lake) a partir de informaciones disponibles en bases públicas (o público-privadas) ­ DATASUS, MapBiomas, Instituto Nacional de Meteorología (Inmet) e Hidroweb de la Agência Nacional de Águas ­ ANA (Agencia Nacional de Aguas) ­ confirmó que, en la práctica, la accesibilidad de la información pública en Brasil presenta obstáculos importantes. Incluimos recomendaciones acerca de como la transparencia puede ser perfeccionada para hacer de los derechos de acceso a la información una realidad más concreta para el ciudadano brasileño.