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Digital government has digitized numerous public services, automated decision-making, and improved the openness of the public administration. Nevertheless, for senior citizens, undeserved communities, individuals with low literacy and limited digital skills, the shift to governmental portals, online payments, and smartphone applications are considerable obstacles in their daily interactions with public authorities. This chapter argues that digital inequality denies vulnerable citizens their rights twice: first, their ethnicity and socioeconomic status may be conducive to a ‘negative’ ranking or score (e.g., higher risk of welfare fraud); and second, they are also excluded because they do not have adequate access to technology, are not well informed, and do not have the time and skills required to interact with digital government. This chapter explores one of the paradoxes of the digital society: connected citizens in developed countries are also affected by the digital divide and are increasingly being excluded by the generalized digitalization of public services. Drawing on a review of interdisciplinary literature, this chapter contributes to the legal literature with an account of the underlying causes of digital exclusion and a discussion of its most relevant legal implications through the lenses of fundamental rights (e.g., due process, equal treatment) and the principles of good administration. This chapter reflects on potential solutions for more inclusive digital government policies.

Frontiers in neurorobotics 16, 953968 (2022). doi:10.3389/fnbot.2022.953968 special issue: "Rising Stars in Neurorobotics 2021", Published by Frontiers Research Foundation, Lausanne

In recent years, philosophical-legal studies on neuroscience (mainly in the fields of neuroethics and neurolaw) have given increasing prominence to a normative analysis of the ethical-legal challenges in the mind and brain sciences in terms of rights, freedoms, entitlements and associated obligations. This way of analyzing the ethical and legal implications of neuroscience has come to be known as “neurorights.” Neurorights can be defined as the ethical, legal, social, or natural principles of freedom or entitlement related to a person’s cerebral and mental domain; that is, the fundamental normative rules for the protection and preservation of the human brain and mind. Although reflections on neurorights have received ample coverage in the mainstream media and have rapidly become a mainstream topic in the public neuroethics discourse, the frequency of such reflections in the academic literature is still relatively scarce. While the prominence of the neurorights debate in public opinion is crucial to ensure public engagement and democratic participation in deliberative processes on this issue, its relatively sporadic presence in the academic literature poses a risk of semantic-normative ambiguity and conceptual confusion. This risk is exacerbated by the presence of multiple and not always reconcilable terminologies. Several meta-ethical, normative ethical, and legal-philosophical questions need to be solved in order to ensure that neurorights can be used as effective instruments of global neurotechnology governance and be adequately imported into international human rights law. To overcome the shortcomings above, this paper attempts to provide a comprehensive normative-ethical, historical and conceptual analysis of neurorights. In particular, it attempts to (i) reconstruct a history of neurorights and locate these rights in the broader history of idea, (ii) outline a systematic conceptual taxonomy of neurorights, (iii) summarize ongoing policy initiatives related to neurorights, (iv) proactively address some unresolved ethico-legal challenges, and (v) identify priority areas for further academic reflection and policy work in this domain. ISSN:1662-5161

Mental health disorders are complex disorders of the nervous system characterized by a behavioral or mental pattern that causes significant distress or impairment of personal functioning. Mental illness is of particular concern for younger people. The WHO estimates that around 20% of the world's children and adolescents have a mental health condition, a rate that is almost double compared to the general population. One approach toward mitigating the medical and socio-economic effects of mental health disorders is leveraging the power of digital health technology to deploy assistive, preventative, and therapeutic solutions for people in need. We define “digital mental health” as any application of digital health technology for mental health assessment, support, prevention, and treatment. However, there is only limited evidence that digital mental health tools can be successfully implemented in clinical settings. Authors have pointed to a lack of technical and medical standards for digital mental health apps, personalized neurotechnology, and assistive cognitive technology as a possible cause of suboptimal adoption and implementation in the clinical setting. Further, ethical concerns have been raised related to insufficient effectiveness, lack of adequate clinical validation, and user-centered design as well as data privacy vulnerabilities of current digital mental health products. The aim of this paper is to report on a scoping review we conducted to capture and synthesize the growing literature on the promises and ethical challenges of digital mental health for young people aged 0–25. This review seeks to survey the scope and focus of the relevant literature, identify major benefits and opportunities of ethical significance (e.g., reducing suffering and improving well-being), and provide a comprehensive mapping of the emerging ethical challenges. Our findings provide a comprehensive synthesis of the current literature and offer a detailed informative basis for any stakeholder involved in the development, deployment, and management of ethically-aligned digital mental health solutions for young people., Frontiers in Digital Health, 3, ISSN:2673-253X

The widespread adoption of digital health technologies such as smartphone-based mobile applications, wearable activity trackers and Internet of Things systems has rapidly enabled new opportunities for predictive health monitoring. Leveraging digital health tools to track parameters relevant to human health is particularly important for the older segments of the population as old age is associated with multimorbidity and higher care needs. In order to assess the potential of these digital health technologies to improve health outcomes, it is paramount to investigate which digitally measurable parameters can effectively improve health outcomes among the elderly population. Currently, there is a lack of systematic evidence on this topic due to the inherent heterogeneity of the digital health domain and the lack of clinical validation of both novel prototypes and marketed devices. For this reason, the aim of the current study is to synthesize and systematically analyse which digitally measurable data may be effectively collected through digital health devices to improve health outcomes for older people. Using a modified PICO process and PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) framework, we provide the results of a systematic review and subsequent meta-analysis of digitally measurable predictors of morbidity, hospitalization, and mortality among older adults aged 65 or older. These findings can inform both technology developers and clinicians involved in the design, development and clinical implementation of digital health technologies for elderly citizens., Frontiers in Digital Health, 2, ISSN:2673-253X

Supplemental material, sj-docx-1-jre-10.1177_15562646211053538 for The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study by Agata Ferretti, Marcello Ienca, Minerva Rivas Velarde, Samia Hurst and Effy Vayena in Journal of Empirical Research on Human Research Ethics

Multisite medical data sharing is critical in modern clinical practice and medical research. The challenge is to conduct data sharing that preserves individual privacy and data utility. The shortcomings of traditional privacy-enhancing technologies mean that institutions rely upon bespoke data sharing contracts. The lengthy process and administration induced by these contracts increases the inefficiency of data sharing and may disincentivize important clinical treatment and medical research. This paper provides a synthesis between 2 novel advanced privacy-enhancing technologies—homomorphic encryption and secure multiparty computation (defined together as multiparty homomorphic encryption). These privacy-enhancing technologies provide a mathematical guarantee of privacy, with multiparty homomorphic encryption providing a performance advantage over separately using homomorphic encryption or secure multiparty computation. We argue multiparty homomorphic encryption fulfills legal requirements for medical data sharing under the European Union’s General Data Protection Regulation which has set a global benchmark for data protection. Specifically, the data processed and shared using multiparty homomorphic encryption can be considered anonymized data. We explain how multiparty homomorphic encryption can reduce the reliance upon customized contractual measures between institutions. The proposed approach can accelerate the pace of medical research while offering additional incentives for health care and research institutes to employ common data interoperability standards., Journal of Medical Internet Research, 23 (2), ISSN:1438-8871

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Background The long-term consequences of childhood cancer have received increasing attention due to the growing number of survivors over the past decades. However, insurance hardships of survivors and their families are mostly unknown. This study explored qualitatively, in a sample of childhood cancer survivors (CCS), (i) the experiences and needs of CCS living in Switzerland with a special focus on hardships related to insurance; and (ii) the views of insurance and law experts with experience on childhood cancer. Methods Semi-structured interviews were conducted with 28 childhood cancer survivors and 3 experts (one legal expert, two insurance experts). Data was analysed using qualitative content analysis. Results Three key themes emerged from the interviews with the CCS: 1) experiences with insurance, 2) perception of discrimination, and 3) needs and barriers for support. The interviewed experts provided further detailed clarification of CCS’ concerns. Our findings indicated that some CCS can move past their cancer history, while others continue to face hardships. CCS reported confusion about the opportunities and services within the social security system and most relied on their personal contacts for guidance. Finally, CCS expressed a strong need for socio-economic and legal support for social insurance questions, especially related to disability insurance. Conclusions With the growing population of CCS, it is essential to further assess the interplay between medical and psychosocial health and socio-economic hardship. Supportive psychosocial services should aim to ameliorate insurance hardships. Better understanding of the relationship between childhood cancer and insurance hardships during survivorship will inform efforts to improve long-term financial security and health outcomes for survivors. We call for the public, lawmakers, researchers, insurers, and patient organizations to come together and discuss future perspectives to avoid the risk of discrimination for cancer survivors.

The implementation of the General Data Protection Regulation (GDPR) raises a series of challenges for scientific research, in particular for research that is dependent on data. This study comprehensively investigates the promises and challenges associated with the implementation of the GDPR in the scientific domain, with a special focus on the impact of the new rights and obligations enshrined in the GDPR on the design and conduct of scientific research. Furthermore, the study examines the adequacy of the GDPR's derogations for scientific research in terms of safeguarding scientific freedom and technological progress. The study also provides policy options that delineate a pathway towards enhancing rather than stifling research, and facilitating privacy-preserving data-driven research under the provisions of the GDPR.