The impact of commercial health datasets on medical research and health-care algorithms.

As the health-care industry emerges into a new era of digital health driven by cloud data storage, distributed computing, and machine learning, health-care data have become a premium commodity with value for private and public entities. Current frameworks of health data collection and distribution, whether from industry, academia, or government institutions, are imperfect and do not allow researchers to leverage the full potential of downstream analytical efforts. In this Health Policy paper, we review the current landscape of commercial health data vendors, with special emphasis on the sources of their data, challenges associated with data reproducibility and generalisability, and ethical considerations for data vending. We argue for sustainable approaches to curating open-source health data to enable global populations to be included in the biomedical research community. However, to fully implement these approaches, key stakeholders should come together to make health-care datasets increasingly accessible, inclusive, and representative, while balancing the privacy and rights of individuals whose data are being collected.

Phthalates in children toys available in Malaysian market: Quantification and potential human health risk.

In Malaysia, inexpensive toys are sold in various urban and rural shops. Although safety regulations for toys are available in Malaysia there are limited reports about the chemicals in toys. Thus, this study aimed to assess the levels of phthalates (bis-[2-ethylhexyl] phthalate [DEHP], diethyl phthalate [DEP], diisobutyl phthalate [DiBP] and dibutyl phthalate [DBP]) in inexpensive toys sold at local markets in Kuala Lumpur (Malaysia) and its health risks to children. All 30 toys analysed exceeded the European Union limit (0.1 % by mass) indicating that the phthalate used as plasticizers is still prominent in toys. Bis-[2-ethylhexyl] phthalate (DEHP) was the highest detected phthalate in toy sample which was manufactured in Malaysia and sold without Malaysian Conformity Mark. Significant association was found between phthalate levels and country, indicating a need to monitor and raise public awareness about potential toxic chemicals in inexpensive toys and children's products. There are few inexpensive toys that have a hazard index value of more than one, which is associated with developmental toxicity and causes developmental effects in children. Given the severity and complexity of these toys to children health, there is a need for regular monitoring and effective enforcements to develop an acceptable baseline level of children toys products manufactured in or imported to Malaysia. Furthermore, risk management efforts should also include all the stakeholders involved in toy production, policy makers as well as consumers to ensure only toy products with proper labels being sole and purchased.

Misinformation, chiropractic, and the COVID-19 pandemic.

BACKGROUND: In March 2020, the World Health Organization elevated the coronavirus disease (COVID-19) epidemic to a pandemic and called for urgent and aggressive action worldwide. Public health experts have communicated clear and emphatic strategies to prevent the spread of COVID-19. Hygiene rules and social distancing practices have been implemented by entire populations, including 'stay-at-home' orders in many countries. The long-term health and economic consequences of the COVID-19 pandemic are not yet known. MAIN TEXT: During this time of crisis, some chiropractors made claims on social media that chiropractic treatment can prevent or impact COVID-19. The rationale for these claims is that spinal manipulation can impact the nervous system and thus improve immunity. These beliefs often stem from nineteenth-century chiropractic concepts. We are aware of no clinically relevant scientific evidence to support such statements. We explored the internet and social media to collect examples of misinformation from Europe, North America, Australia and New Zealand regarding the impact of chiropractic treatment on immune function. We discuss the potential harm resulting from these claims and explore the role of chiropractors, teaching institutions, accrediting agencies, and legislative bodies. CONCLUSIONS: Members of the chiropractic profession share a collective responsibility to act in the best interests of patients and public health. We hope that all chiropractic stakeholders will view the COVID-19 pandemic as a call to action to eliminate the unethical and potentially dangerous claims made by chiropractors who practise outside the boundaries of scientific evidence.

[Risk of medicines in pregnancy: a problem of knowledge transfer with ethical implications]. / Riesgo de medicamentos en el embarazo: un problema de transferencia del conocimiento con repercusiones éticas.

Drug use in pregnancy is essential and beneficial, but it is needed to check their safety. Available scientific evidence is poor and difficult to interpret. Risk classifications (FDA, ADEC) have shown to be too simple and categorical; they lead to inaccurate perceptions of risk and unfortunate decisions, such as interrumption of medication, or abortion. This has become clear with antidepressants or the antiretroviral efavirenz. Although abortion is not justified, misinformation contributes even more to the problem. Information tends to obviate that not every risk in pregnancy is teratogenic, that the existence of risk does not imply high probability, and that the nature and probability of the risk vary according to the stage.

La salud mental digital. Una aproximación crítica desde la ética / Digital mental health: a critical approach from ethics

El empleo de aparatos electrónicos en salud mental no es algo nuevo. Desde que se iniciaron los procesos de industrialización y maquinización del trabajo a mediados del pasado siglo, su desarrollo no ha cesado y su extensión se ha multiplicado a todos los ámbitos. El uso de aparatos electrónicos en el campo de la salud mental se ha producido de diversas formas. Sus aplicaciones abarcan la evaluación, el tratamiento, el autocuidado y la automonitorización de las personas diagnosticadas de algún trastorno mental. El uso de dispositivos tecnológicos de última generación ha producido algunos cambios sensibles tanto en los procesos de atención como en los efectos sobre los sujetos que participan del entramado sanitario. El artículo se propone revisar de forma crítica estos aspectos: por un lado, los efectos habitualmente reportados en los múltiples estudios realizados hasta el momento; y, por otro, y mucho menos estudiados, los efectos producidos por las nuevas prácticas sobre las subjetividades en juego

The use of electronic devices in mental health is not something new. Since the beginning of the processes of industrialization and mechanization of work in the middle of the last century, its development has not ceased and It has greatly expanded Into all areas. The use of electronic devices in the field of mental health has occurred in several ways. The scope of its applications includes the evaluation, treatment, self-care, and self-monitoring of people diagnosed with a mental disorder. The use of state-of-the-art technological devices has produced some sensible changes both in the assistance processes and in the effects on the subjects that participate in the health network. The article proposes to critically review these aspects: on the one hand, the effects usually reported in the multiple studies carried out so far; and, on the other, and much less studied, the effects produced by the new practices on the subjectivities in play

Genética a gusto del consumidor: una práctica que no encaja en nuestro Derecho / No disponible

Los test genéticos directos al consumidor tienen por objeto conocer la predisposición a padecer enfermedades comunes de origen multifactorial. Tal y como se ofrecen constituyen un reclamo cuya calidad y utilidad no ha sido probada, ya que, en muchos casos, no predicen el desarrollo de la enfermedad ni su gravedad. Objeciones tales como la falta de información y de consejo genético, el impacto en el individuo y en su familia, la agresiva publicidad y el riesgo de estigmatización justifican la adopción de cautelas y el sometimiento a unos estrictos estándares éticos y jurídicos

Direct-to-consumer genetic testing aim to meet the predisposition to common diseases of multifactorial origin. These tests are offered as a form of claim whose quality and usefulness has not been tested, since in many cases do not predict the development of the disease or its severity. Objections such as lack of information and genetic counselling, the impact on the individual and his family, aggressive advertising and the risk of stigmatization justify the need to take precautionary measures and to be subject to strict ethical and legal standards

Free access to genetic testing - guaranteeing or threatening the right to privacy?

The development of market for commercial genetic testing allows free access to them for an unlimited number of people. Everyone can carry out genetic tests in every chosen medical service provider and receive interesting results. Moreover, the transfer of genetic material for testing and the results of these tests may be sent by post without a personal visit in the service provider. Theoretically, free access to genetic tests can be assessed as a guarantee of the right to protect private life. Everyone can receive detailed information about his person, in particular in the field of health and existing or potential diseases. Therefore, the genetic tests give the opportunity to broaden the scope of information about the state of health. What is more important, this information can allow, for instance, to choose appropriate treatment or to make some preventive decisions. In this context, even the ECHR treats the access to genetic testing as a possible way to guarantee the right to protect private life (for example prenatal genetic testing). However, free access to genetic tests is also connected with the threat to the right to protect private life. The possibility of sending the biological material for testing by post and the easy access to this material opens wide possibilities for receiving the genetic data of any person. This method of conducting genetic tests does not allow to prevent from obtaining the sensitive data of another person without his/her knowledge and consent. Furthermore, the advisory services for people conducting genetic tests privately does not exist. Patients cannot receive the proper interpretation of the results of genetic tests obtained commercially. Misinterpreted results of genetic tests may have the very negative impact on the life, on life decisions, and consequently on the realization of the right to protect private life. Therefore, he admissibility of conducting commercial genetic testing, in particular conducting by post, requires an appropriate balance between guarantees and threats to the right to protect private life. The proper protection of this right probably requires that direct-to-consumer genetic tests probably should be done only on the order of a physician

El desarrollo del mercado de pruebas genéticas comerciales permite el acceso gratuito a ellas para un número ilimitado de personas. Todo el mundo puede realizar pruebas genéticas con cada proveedor de servicios médicos elegido y recibir resultados interesantes. Además, la transferencia de material genético para las pruebas y los resultados de éstas, pueden enviarse por correo sin una visita personal al proveedor del servicio. Teóricamente, el acceso libre a pruebas genéticas puede evaluarse como una garantía del derecho a proteger la vida privada. Todo el mundo puede recibir información detallada sobre su persona, en particular en el campo de la salud y las enfermedades existentes o potenciales. Por lo tanto, las pruebas genéticas brindan la oportunidad de ampliar el alcance de la información sobre el estado de salud. Lo que es más importante, esta información puede permitir, por ejemplo, elegir el tratamiento adecuado o tomar algunas decisiones preventivas. En este contexto, incluso el Tribunal Europeo de Derechos Humanos trata el acceso a las pruebas genéticas como una forma posible de garantizar el derecho a proteger la vida privada (por ejemplo, pruebas genéticas prenatales). Sin embargo, el libre acceso a las pruebas genéticas también está relacionado con la amenaza al derecho de proteger la vida privada. La posibilidad de enviar el material biológico para la prueba por correo y el fácil acceso a este material abre amplias posibilidades para recibir los datos genéticos de cualquier persona. Este método de realizar pruebas genéticas no permite evitar la obtención de datos confidenciales de otra persona sin su conocimiento y consentimiento. Además, los servicios de asesoramiento para personas que realizan pruebas genéticas de forma privada no existen. Los pacientes no pueden recibir la interpretación adecuada de los resultados de las pruebas genéticas obtenidas comercialmente. Los resultados malinterpretados de las pruebas genéticas pueden tener un impacto muy negativo en la vida, en decisiones vitales y, en consecuencia, en la realización del derecho a proteger la vida privada. Por lo tanto, la admisibilidad de realizar pruebas genéticas comerciales, en particular la realización por correo, requiere un equilibrio adecuado entre las garantías y las amenazas al derecho a proteger la vida privada. La protección adecuada de este derecho probablemente requiera que las pruebas genéticas directas al consumidor solo se realicen por orden de un médico

Current status of postnatal depression smartphone applications available on application stores: an information quality analysis.

OBJECTIVES: It is the aim of the current research to identify some common functionalities of postnatal application, and to determine the quality of the information content of postnatal depression application using validated scales that have been applied for applications in other specialties. SETTINGS AND PARTICIPANTS: To determine the information quality of the postnatal depression smartphone applications, the two most widely used smartphone application stores, namely Apple iTunes as well as Google Android Play store, were searched between 20May and 31 May. No participants were involved. The inclusion criteria for the application were that it must have been searchable using the keywords 'postnatal', 'pregnancy', 'perinatal', 'postpartum' and 'depression', and must be in English language. INTERVENTION: The Silberg Scale was used in the assessment of the information quality of the smartphone applications. PRIMARY AND SECONDARY OUTCOMES MEASURE: The information quality score was the primary outcome measure. RESULTS: Our current results highlighted that while there is currently a myriad of applications, only 14 applications are specifically focused on postnatal depression. In addition, the majority of the currently available applications on the store have only disclosed their last date of modification as well as ownership. There remain very limited disclosures about the information of the authors, as well as the references for the information included in the application itself. The average score for the Silberg Scale for the postnatal applications we have analysed is 3.0. CONCLUSIONS: There remains a need for healthcare professionals and developers to jointly conceptualise new applications with better information quality and evidence base.

Commercial speech in the realm of direct-to- consumer genetic testing. Are the current bans in the Spanish legal framework necessary and proportionate?

This paper explores the right to commercial speech of the companies that offer Direct To Consumer (DTC) genetic tests in the market. The paper discusses whether the bans to commercial speech currently in force in Spain are necessary and proportional or not, attending to the rights and public interests they try to protect, and balancing them with the communicative rights of the companies and the customers

El presente artículo analiza el derecho a la comunicación publicitaria de las empresas que ofrecen test directos al consumidor. Tras un análisis de la normativa vigente en España, se plantea la necesidad y proporcionalidad de las restricciones que el ordenamiento español impone a este tipo de publicidad, ponderando los intereses en conflicto: de un lado, el derecho a la comunicación de las empresas y los potenciales clientes de otro, la protección de la salud pública y de los consumidores y usuarios

[Organisational challenges of community information offices for the elderly in Switzerland : A qualitative study with ethical reflections]. / Strukturelle Herausforderungen kommunaler Altersstellen in der Schweiz : Eine qualitative Studie mit ethischer Reflexion.

BACKGROUND: Current Swiss politics concerning age and ageing are orientated towards the principle "out-patient before in-patient". As part of new regulations, in 2011 all communities were required to set up information offices to answer questions about out-patient and in-patient care. OBJECTIVES: The aim of this qualitative study was to analyse in which form and under which conditions such information offices are run. METHODS: A qualitative study was conducted which consisted of semistructured interviews with managers of information offices. They were analysed using qualitative content analysis. RESULTS: The analysis shows that on the one hand the information offices have the potential to serve an important role in the communities and that they have a highly complex, demanding and responsible function. On the other hand the results illustrate that in organisational respects the situation is highly heterogeneous and unregulated. CONCLUSION: For the running of the information offices, there is need for action such as the definition of general framework, quality standards, qualifications and values profiles, objectives, mission, responsibility and legitimation, instruments for networking and cooperations.

Analysis of information content and general quality of obesity and eating disorders websites / Análisis de la calidad general y de la información contenida en páginas web sobre obesidad y trastornos de la alimentación

Introduction: nowadays, the Internet is increasingly used by providers as a source of information for eating disorder health issues. However, health information on the Internet remains unregulated and varies in quality, accuracy and readability. Objective: the objective of this study was to determine both general and information quality of eating disorder websites, including obesity websites. Methods: three key terms (obesity, anorexia and bulimia) were entered into the Google® search engine. Websites were assessed using two tests (HonCode® certification and Bermudez-Tamayo et al. test) to analyze overall quality, and a third test (DISCERN test) to analyze specifically information quality. Results: there were no significant differences regarding overall quality among the different pathologies studied (p=0.197), although anorexia websites tended to obtain lower quality scores. Furthermore, all evaluated websites showed significant deficiencies regarding information quality (p=0.032). Nevertheless, obesity websites showed a significant higher information quality than anorexia websites. Discussion and conclusion: the overall quality of eating disorders websites is moderate, but the information quality that they contain is fairly poor. Remarkably, anorexia nervosa websites showed both the lower information and general quality, while bulimia websites showed a higher general quality and obesity websites presented the most reliable information (AU)

Introducción: actualmente, el uso de Internet como fuente de información sobre temas de salud, y más concretamente sobre trastornos alimentarios, está aumentando enormemente. Sin embargo, al no existir una regulación precisa, la información disponible puede variar en calidad y fiabilidad. Objetivo: el objetivo del presente trabajo fue determinar tanto la calidad general como la información contenida en las páginas web sobre obesidad y trastornos de la alimentación más visitadas en España. Métodos: se introdujeron consecutivamente los términos ‘obesidad’, ‘anorexia’ y ‘bulimia’ en el buscador Google®. La calidad general de las páginas web se analizó mediante dos test, la certificación internacional HonCode® y el test de Bermúdez-Tamayo et al.; la calidad de la información se analizó específicamente con el test DISCERN. Resultados: no observamos diferencias significativas en la calidad general entre las diferentes patologías estudiadas (p=0,197), aunque las páginas web sobre anorexia obtuvieron las menores puntuaciones. Además, todas las páginas web mostraron deficiencias significativas respecto a la calidad de la información (p=0,032). No obstante, las páginas sobre obesidad mostraron mayor calidad que las de anorexia. Discusión: la calidad general de las páginas sobre trastornos nutricionales es moderada, pero la calidad de la información que contienen es bastante deficiente. Hay que destacar que las páginas web sobre anorexia mostraron tanto la peor calidad como la peor información (AU)

Emerging ethical issues in digital health information.

The problems of poor or biased information and of misleading health and well-being advice on the Internet have been extensively documented. The recent decision by the Internet Corporation for Assigned Names and Numbers to authorize a large number of new generic, top-level domains, including some with a clear connection to health or healthcare, presents an opportunity to bring some order to this chaotic situation. In the case of the most general of these domains, ".health," experts advance a compelling argument in favor of some degree of content oversight and control. On the opposing side, advocates for an unrestricted and open Internet counter that this taken-for-granted principle is too valuable to be compromised, and that, once lost, it may never be recovered. We advance and provide evidence for a proposal to bridge the credibility gap in online health information by providing provenance information for websites in the .health domain.

Efectos de la edad y de la formación académica en la comprensión de la información escrita que entregamos habitualmente a nuestros pacientes / Effects of age and educational background in understanding the written information normally deliver to our patients

No disponible