Ethical and Quality of Care-Related Challenges of Digital Health Twins in Older Care Settings: Protocol for a Scoping Review.

BACKGROUND: Digital health twins (DHTs) have been evolving with their diverse applications in medicine, specifically in older care settings, with the increasing demands of older adults. DHTs have already contributed to improving the quality of dementia and trauma care, cardiac treatment, and health care services for older individuals. Despite its many benefits, the optimum implementation of DHTs has faced several challenges associated with ethical issues, quality of care, management and leadership, and design considerations in older care settings. Since the need for such care is continuously rising and there is evident potential for DHTs to meet those needs, this review aims to map key concepts to address the gaps in the research knowledge to improve DHT implementation. OBJECTIVE: The review aims to compile and synthesize the best available evidence regarding the problems encountered by older adults and care providers associated with the application of DHTs. The synthesis will collate the evidence of the issues associated with quality of care, the ethical implications of DHTs, and the strategies undertaken to overcome those challenges in older care settings. METHODS: The review will follow the Joanna Briggs Institute (JBI) methodology. The published studies will be searched through CINAHL, MEDLINE, JBI, and Web of Science, and the unpublished studies through Mednar, Trove, OCLC WorldCat, and Dissertations and Theses. Studies published in English from 2002 will be considered. This review will include studies of older individuals (aged 65 years or older) undergoing care delivery associated with DHTs and their respective care providers. The concept will include the application of the technology, and the context will involve studies based on the older care setting. A broad scope of evidence, including quantitative, qualitative, text and opinion studies, will be considered. A total of 2 independent reviewers will screen the titles and abstracts and then review the full text. Data will be extracted from the included studies using a data extraction tool developed for this study. RESULTS: The results will be presented in a PRISMA-ScR (Preferred Reporting Items for Systematic Review and Meta-Analysis extension for Scoping Reviews) flow diagram. A draft charting table will be developed as a data extraction tool. The results will be presented as a "map" of the data in a logical, diagrammatic, or tabular form in a descriptive format. CONCLUSIONS: The evidence synthesis is expected to uncover the shreds of evidence required to address the ethical and care quality-related challenges associated with applying DHTs. A synthesis of various strategies used to overcome identified challenges will provide more prospects for adopting them elsewhere and create a resource allocation model for older individuals. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/51153.

Medical confidentiality in the Polish legal system: a real or illusory instrument of patient privacy protection? / Tajemnica lekarska w polskim systemie prawa: realne czy iluzoryczne narzedzie ochrony prywatnosci pacjenta?

Health information provided by patients in the doctor's office belongs to the sphere of their private life. Medical confidentiality is intended to prevent unwarranted interference with the content of this information, both by state authorities and private entities. Thus, it is an instrument to protect the individual's constitutional right to privacy and, at the same time, guarantee an effective diagnostic and therapeutic process. For these reasons, access to the information covered by medical secrecy should be exceptional, especially since this data is highly sensitive in nature. This is especially true of psychiatric confidentiality. Contrary to these seemingly obvious assumptions, the Polish legislator introduces into the legal system further legal solutions that seriously interfere in the sphere of information about an individual's health. This makes medical (psychiatric) secrecy an institution of illusory nature and violates the patient's constitutional right to privacy. It also negatively affects the effectiveness of the diagnostic and therapeutic process. The latter requires complete trust in the doctor-patient relationship and, thus, full confidentiality. The article discusses the ratio legis of medical secrecy, the interrelation of psychiatric and medical secrecy, and the prerequisites for abrogating these secrets. It then discusses the relationship between medical confidentiality and other legal duties incumbent on physicians. Against the backdrop of these considerations, legal solutions that reflect the tendency to weaken the legal protection of medical confidentiality and thus pose a real threat to the information covered by it, were analyzed.

Evolved Eugenics and Reinforcement of "Othering": Renewed Ethico-Legal Perspectives of Genome Editing in Reproduction.

This article extends an exploration into renewed ethico-legal perspectives of genome editing technologies, examined from an evolved conceptualization of eugenics in contemporary human reproduction. Whilst the ethico-legal conundrums presented by genome-editing technologies in various aspects of modern medicine have thus far inspired a comprehensive trove of academic scholarship-and notwithstanding the World Health Organization's (WHO) publication of guidelines on human genome editing in 2021-the legislative landscape for these technologies remain relatively unchanged. Accordingly, this paper presents the unresolved problematic questions that still require significant reflection. First, the paper highlights these questions, which primarily center around the tension between reproductive autonomy and the legal governance of reproductive/genome editing technologies by a democratic state. Secondly, the paper interrogates the evolved conceptualization of eugenics, exercised on the part of prospective parents as part of reproductive autonomy. By this, the paper predicates that it indirectly reinforces societal and systemic problems of discrimination and "othering", increasing reproductive inequalities in excluded communities. Thirdly, the paper attempts to offer narratives of intersectionality as a facilitating tool in a continuing dialogue to build belonging, foster a healthy and balanced exercise of reproductive autonomy, and increase reproductive equalities.

Compulsory vaccination against COVID-19 in the context of the principles of the convention on human rights and biomedicine.

INTRODUCTION: At this stage of the global health crisis caused by the SARS-CoV-2 coronavirus, an increasing number of countries are considering enacting legislation requiring compulsory vaccination or implementing a mechanism to ensure mass vaccination of the population. Such policy decisions raise a number of legal and deontological issues. AIM: The aim of the study was to analyze the legal and deontological issues related to the introduction of compulsory vaccination against COVID-19 in the context of the principles of the Convention on Human Rights and Biomedicine (Oviedo Convention). MATERIALS AND METHODS: The analysis looks at the international legal framework that governs the protection of human rights and freedoms, the principles and rules that apply to the achievements of biology and medicine, and, in particular, the Oviedo Convention. RESULTS: Vaccines against COVID-19 are a modern scientific success in biology and medicine, particularly those of the latest genera-tion of vaccines presented by the scientific community as a consequence of revolutionary mRNA technology. It is for this reason that the provisions of the Oviedo Convention should serve as guidelines for countries to follow in their fight against COVID-19 pandemic. CONCLUSIONS: Achieving mass vaccination of the population in accordance with the provisions of the Oviedo Convention and other rel-evant international standards for the protection of fundamental human rights, in conjunction with a large-scale information campaign, seems a sensible approach that would contribute to the rapid and peaceful resolution of the current global health crisis.

The Impossibility of a Moral Right to Privacy.

This paper clarifies and defends against criticism our argument in Unfit for the Future that there is no moral right to privacy. A right to privacy is conceived as a right that others do not acquire information about us that we reserve for ourselves and selected others. Information acquisition itself is distinguished from the means used to acquire it and the uses to which the information is put. To acquire information is not an action; it is to be caused to be in an internal state. By contrast, means of acquisition and uses of information are actions that can be voluntarily controlled. We can therefore have rights against others that they stay away from certain means and uses but not from information acquisition in itself. An omniscient, omnipotent and omnibeneficient being is not thought to violate a right to privacy because its means and uses of information are morally acceptable.

La defensa de la verdad biológica enla reproducción asistida / The defence of biological truth in assisted reproduction

Se deberán equilibrar todos los intereses en juego para garantizar el derecho a la identidad genética de los menores nacidos por reproducción asistida heteróloga. Los donantes deberían hacer prevalecer este derecho frente a su intimidad, derivada del anonimato de la donación, lo que conllevaría su eliminación. El derecho a conocer la verdad biológica no es una obligación, sino fruto del ejercicio de la autonomía personal. Sin embargo, se requiere que sean los padres los que informen a sus hijos del uso que hicieron de las técnicas de la reproducción asistida para la concepción. Sin olvidarnos de la necesaria intervención del Estado y de las clínicas que deben actuar como garantes de este derecho, haciendo prevalecer la verdad genética.(AU)

All the interests at stake must be balanced to guarantee the right to genetic identity of minors born through heterologous assisted reproduction. Donors should make this right prevail over their privacy, derived from the anonymity of the donation, which would lead to its elimination. The right to know the biological truth is not an obligation, but the result of the exercise of personal autonomy. However, parents are required to inform their children of the use they made of assisted reproductive techniques for conception. Without forgetting the necessary intervention of the State and the clinics that must act as guarantors of this right, making genetic truth prevail(AU)

Questões éticas e perspectiva jurídica da proteção de dados / Ethical issues and the legal perspective of data protection / Cuestiones éticas y perspectiva jurídica de la protección de datos

Objetivo: realizar uma breve análise sobre a utilização de dados de seres humanos, em pesquisas científicas e no âmbito da Administração Pública como substrato para elaboração de políticas públicas. Destacamos a nova Lei Geral de Proteção de Dados brasileira, bem como buscamos compreender o arcabouço normativo nacional e a atuação do Supremo Tribunal Federal sobre a temática. Metodologia: utilizou-se o método de pesquisa dedutivo, com procedimento descritivo e técnica de pesquisa de revisão bibliográfica e documental. Resultado: verificamos que a Lei Geral de Proteção de Dados brasileira desenhou um novo modelo para a tutela da utilização de dados e seres humanos em pesquisa científica e pela própria Administração Pública no bojo da elaboração de políticas públicas. A nova legislação trouxe maior transparência e maior estabilidade aos procedimentos acadêmicos e administrativos, além de apresentar uma construção jurídica que conseguiu conciliar a utilização de dados pessoais e a proteção do direito fundamental à proteção de dados. Conclusão: destacamos a autonomia do direito fundamental à proteção de dados e a constituição de um novo paradigma normativo para a sociedade digital, notadamente, a necessidade de construção de novos instrumentos legais que não inviabilizem as pesquisas científicas e a elaboração de políticas públicas, mas que simultaneamente, garantam o direito fundamental à privacidade e à intimidade dos indivíduos.

Objective: to conducta brief analysis on the use of data from human beings, in scientific research and within the scope of Public Administration as a substrate for the elaboration of public policies. We highlight the new General Data Protection Law in Brazil, as well as seeking to understand the national regulatory framework and the role of the Supreme Federal Court on the subject. Methods:the deductive research method was used, with a descriptive procedure and research technique of bibliographic and documentary review. Result: we found that the Brazilian General Data Protection Law designed a new model for the protection of the use of data and human beings in scientific research and by the Public Administration itself in the context of the elaboration of public policies. The new legislation has brought greater transparency and greater stability to academic and administrative procedures, has a legal construction that manages to reconcile the use of personal data and the protection of the fundamental right to data protection. Conclusion: we highlight the autonomy of the fundamental right to data protection and the constitution of a new normative paradigm for the digital society, notably the need to build new legal instruments that do not make scientific research and policy making unfeasible public, but at the same time, guarantee the fundamental right to privacy and intimacy of individuals.

Objetivo: realizar un breve análisis sobre el uso de datos de seres humanos, en la investigación científica y en el ámbito de la Administración Pública como sustrato para la elaboración de políticas públicas. Destacamos lanueva Ley General de Protección de Datos en Brasil, además de buscar comprender el marco regulatorio nacional y el papel de la Corte Suprema Federal en el tema. Metodología: se utilizó el método de investigación deductivo, con un procedimiento descriptivoy técnica de investigación de revisión bibliográfica y documental. Resultado: descubrimos que la Ley General de Protección de Datos de Brasil diseñó un nuevo modelo para la protección del uso de datos y seres humanos en la investigación científica y por la propia Administración Pública en el contexto de la elaboración de políticas públicas. La nueva legislación ha traído mayor transparencia y estabilidada los procedimientos académicos y administrativos, tiene una construcción jurídica que logra conciliar el uso de datos personales y la protección del derecho fundamental a la protección de datos. Conclusión: destacamos la autonomía del derecho fundamental a la protección de datos y la constitución de un nuevo paradigma normativo para la sociedad digital, enparticular la necesidad de construir nuevos instrumentos legales que no hagan inviable la investigación científica y la formulación de políticas públicas. pero al mismo tiempo, garantizar el derecho fundamental a la privacidad e intimidad de las personas.

"Part Man, Part Machine, All Cop": Automation in Policing.

Digitisation, automation, and datafication permeate policing and justice more and more each year-from predictive policing methods through recidivism prediction to automated biometric identification at the border. The sociotechnical issues surrounding the use of such systems raise questions and reveal problems, both old and new. Our article reviews contemporary issues surrounding automation in policing and the legal system, finds common issues and themes in various different examples, introduces the distinction between human "retail bias" and algorithmic "wholesale bias", and argues for shifting the viewpoint on the debate to focus on both workers' rights and organisational responsibility as well as fundamental rights and the right to an effective remedy.

Big Data Technology Applications and the Right to Health in China during the COVID-19 Pandemic.

Individuals have the right to health according to the Constitution and other laws in China. Significant barriers have prevented the full realisation of the right to health in the COVID-19 era. Big data technology, which is a vital tool for COVID-19 containment, has been a central topic of discussion, as it has been used to protect the right to health through public health surveillance, contact tracing, real-time epidemic outbreak monitoring, trend forecasting, online consultations, and the allocation of medical and health resources in China. Big data technology has enabled precise and efficient epidemic prevention and control and has improved the efficiency and accuracy of the diagnosis and treatment of this new form of coronavirus pneumonia due to Chinese institutional factors. Although big data technology has successfully supported the containment of the virus and protected the right to health in the COVID-19 era, it also risks infringing on individual privacy rights. Chinese policymakers should understand the positive and negative impacts of big data technology and should prioritise the Personal Information Protection Law and other laws that are meant to protect and strengthen the right to privacy.

Inclusion, exclusion: Comparative public policy (France/USA) in access to assisted reproductive technology.

This article examines what French and American societies mean by the principle of personal autonomy/'right to privacy' and the concept of solidarity/'the best interest of the society at large'. It will attempt to show how these two countries translate these concepts into different public policies, more specifically in the field of access to sexual and reproductive rights of women and men. In order to better highlight these differences, I observe what citizens actually experience on the ground, and in so doing, it becomes clear that each country does not fully meet the principles they purport to defend.

Aspectos éticos del uso de identificadores biométricos / Bioethical aspects of the use of biometric identifiers / Aspectos éticos do uso de identificadores biométricos

La biometría ha tenido una rápida expansión como tecnología, siendo cada vez más accesible para el público general, prestando utilidad a los gobiernos y a la sociedad en el manejo de la seguridad ciudadana. Se aplica para la verificación o la identificación de la identidad de un individuo y, desde un punto de vista puramente técnico, constituye un problema de reconocimiento de patrones. En Chile, el marco legal acerca del manejo de datos personales no incluye específicamente a la biometría. A la fecha, se encuentra en trámite un nuevo proyecto de ley que considera tanto los datos biométricos como los perfiles biológicos. En otros países, los informes de las últimas dos décadas, que analizan el uso de biometría, plantean como principal foco de preocupación, desde el punto de vista ético, el derecho a la privacidad de los individuos, entregándose orientaciones prácticas acerca de la aplicación apropiada de estas tecnologías. Finalmente, desde un breve análisis de la biopolítica, se contextualiza el papel que cumple la biometría y los requerimientos éticos básicos para su desarrollo en dicho marco.

Biometrics has had a rapid expansion as a technology, being increasingly accessible to the public, and lending utility to governments and society in the management of citizen security. It is applied either for verification or for identification of an individual's identity and technically constitutes a problem of pattern recognition. In Chile, the existing legal framework regarding the handling of personal data does not include specific biometrics in its regulation. A new bill that considers both biometric data and Biological profiles is in process. In addition, we revised the international reports of the last two decades that analyze the use of biometrics. The primary focus of concern of these documents, from the ethical point of view, is the right to privacy of individuals, giving practical guidance and discussion regarding the elements necessary for the application of these novel technologies in an appropriate ethically manner. Finally, we contextualize from a brief analysis of biopolitics the role of biometrics and the basic ethical requirements for its development in that framework.

A biometria teve uma rápida expansão como tecnologia, sendo cada vez mais acessível para o público geral, sendo de utilidade para os governos e à sociedade no manejo da segurança cidadã. Ela pode ser aplicada para a verificação ou estabelecimento da identidade de um indivíduo e, desde um ponto de vista puramente técnico, constitui um problema de reconhecimento de padrões. No Chile, o contexto legal acerca do manejo de dados pessoais não inclui especificamente a biometria. Atualmente, encontra-se tramitando um novo projeto de lei que considera tanto os dados biométricos como os perfis biológicos. Em outros países, os informes das últimas duas décadas que analisam o uso da biometria, propõem como principal foco de preocupação, do ponto de vista ético, o direito à privacidade dos indivíduos, entregando-se orientações práticas acerca da aplicação apropriada destas tecnologias. Finalmente, desde uma breve análise da bio-política, contextualiza-se o papel que cumpre a biometria e os requerimentos éticos básicos para seu desenvolvimento em tal contexto legal.

WASP (Write a Scientific Paper): The right to privacy.

The data protection directive of the EU was set up to allow the freedom of movement of people between member states. This has the consequence of allowing the freedom of transfer of data between member states in research. The paper discusses three cases discussed during the project to see whether RECs can refuse research based on concern for data protection in some member states. Since the directive is not, as commonly thought, intended to protect the rights and freedoms of individuals - something which is the function of the Data Protection Acts of individual states, Member States do not have a right to prohibit research based on data laws. One must express concerns directly to Brussels. Conversely it is debated whether some research considered unlawful in one particular member state can be refused by this same state.

IVF in Costa Rica.

For 16 years, Costa Rica was the only country in the world that banned IVF, after it had been successfully conducted from 1995 to 2000. It also has been the only country that banned IVF based on the argument that it protects the embryo. After years of conflict, the prohibition has finally been lifted and the first baby girl was born in March 2017. This paper recounts the judicial and legal struggles Costa Rica faced in order to reestablished its IVF program.

The dynamics of big data and human rights: the case of scientific research.

In this paper, we address the complex relationship between big data and human rights. Because this is a vast terrain, we restrict our focus in two main ways. First, we concentrate on big data applications in scientific research, mostly health-related research. And, second, we concentrate on two human rights: the familiar right to privacy and the less well-known right to science. Our contention is that human rights interact in potentially complex ways with big data, not only constraining it, but also enabling it in various ways; and that such rights are dynamic in character, rather than fixed once and for all, changing in their implications over time in line with changes in the context we inhabit, and also as they interact among themselves in jointly responding to the opportunities and risks thrown up by a changing world. Understanding this dynamic interaction of human rights is crucial for formulating an ethic tailored to the realities-the new capabilities and risks-of the rapidly evolving digital environment.This article is part of the themed issue 'The ethical impact of data science'.

Segredo médico e o direito humano à privacidade: uma abordagem jurídica / Secreto médico y el derecho humano a la privacidad: un abordaje jurídico / Medical confidentiality and the human right to privacy: a legal approach

Este artigo apresenta uma análise crítica do segredo médico. Busca compreendê-lo de maneira ampla, desde sua origem e respaldo ético no juramento de Hipócrates. Passa pela normatização disciplinar e penal para chegar à concepção do direito humano à privacidade. O objetivo é localizar as diferentes abordagens jurídicas do segredo médico e demonstrar os diversos aspectos de que se reveste e que culminam atualmente com sua colocação como parte do direito à privacidade.

Este articulo presenta un análisis crítico del secreto médico. Trata de entender de una manera amplia, desde sus inicios y la ética de apoyo en el juramento hipocrático. Por medio de las normas penales y disciplinarias para llegar a la idea de que el derecho humano a la privacidad. Su objetivo es encontrar los diferentes enfoques legales del secreto médico y demostrar los diferentes aspectos que contiene y que culminó con suubicación actual como parte del derecho a la privacidad.

This paper presents a critical analysis of medical confidentiality. It attempts to understand it in a wide way, from its inception and ethics base that can be found in the Hippocratic oath. It goes through criminal and disciplinary norms in order to reach the concept of the human right to privacy. The aim is to find the different legal approaches of medical confidentiality and to demonstrate the various aspects it consists of, currently making it as a part of the right to privacy.

Pharmacogenetic testing: legal considerations for consent, privacy and disclosure.

This review provides an overview of the European legal framework relating to the protection of sensitive data obtained from pharmacogenetic tests. The primary objective of pharmacogenetic testing is neither diagnosis nor prediction of disease, but determining likely responses to medicines based on specific genetic factors. Nevertheless, pharmacogenetic testing can lead to the disclosure of sensitive information and, as a consequence, it is argued that consent is a prerequisite. It is further argued that appropriate protection for privacy and confidentiality is crucial, but that disclosure may be justified in certain exceptional circumstances. This article describes the various European legislative instruments that provide useful guidance on the types of circumstances when disclosure may be justified.