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Current debates on online privacy are rooted in liberal theory. Accordingly, privacy is often regarded as a form of freedom from social, economic, and institutional influences. Such a negative perspective on privacy, however, focuses too much on how individuals can be protected or can protect themselves, instead of challenging the necessity of protection itself. In this article, I argue that increasing online privacy literacy not only empowers individuals to achieve (a necessarily limited) form of negative privacy, but has the potential to facilitate a privacy deliberation process in which individuals become agents of social change that could lead to conditions of positive privacy and informational self-determination. To this end, I propose a four-dimensional model of online privacy literacy that encompasses factual privacy knowledge, privacy-related reflection abilities, privacy and data protection skills, and critical privacy literacy. I then outline how this combination of knowledge, abilities, and skills 1) enables to individuals to protect themselves against some horizontal and vertical privacy intrusions and 2) motivates individuals to critically challenge the social structures and power relations that necessitate the need for protection in the first place. Understanding these processes, as well as critically engaging with the normative premises and implications of the predominant negative concepts of privacy, offers a more nuanced direction for future research on online privacy literacy and privacy in general.

Augmented reality (AR) has found application in online games, social media, interior design, and other services since the success of the smartphone game Pokémon Go in 2016. With recent news on the metaverse and the AR cloud, the contexts in which the technology is used become more and more ubiquitous. This is problematic, since AR requires various different sensors gathering real-time, context-specific personal information about the users, causing more severe and new privacy threats compared to other technologies. These threats can have adverse consequences on information self-determination and the freedom of choice and, thus, need to be investigated as long as AR is still shapeable. This communication paper takes on a bird’s eye perspective and considers the ethical concept of autonomy as the core principle to derive recommendations and measures to ensure autonomy. These principles are supposed to guide future work on AR suggested in this article, which is strongly needed in order to end up with privacy-friendly AR technologies in the future.

Article 8 of the EU Charter of Fundamental Rights sets out a right to data protection which sits alongside, and in addition to, the established right to privacy in the Charter. The Charter's inclusion of an independent right to data protection differentiates it from other international human rights documents which treat data protection as a subset of the right to privacy. Its introduction and its relationship with the established right to privacy merit an explanation. This paper explores the relationship between the rights to data protection and privacy. It demonstrates that, to date, the Court of Justice of the European Union (CJEU) has consistently conflated the two rights. However, based on a comparison between the scope of the two rights as well as the protection they offer to individuals whose personal data are processed, it claims that the two rights are distinct. It argues that the right to data protection provides individuals with more rights over more types of data than the right to privacy. It suggests that the enhanced control over personal data provided by the right to data protection serves two purposes: first, it proactively promotes individual personality rights which are threatened by personal data processing and, second, it reduces the power and information asymmetries between individuals and those who process their data. For these reasons, this paper suggests that there ought to be explicit judicial recognition of the distinction between the two rights.

Post-mortem privacy is becoming a vital topic of public and scholarly legal concern. Post-mortem privacy is understood as the right of a person to preserve and control what becomes of his reputation and dignity after death. The assumption that the deceased does not qualify for privacy rights, because his bodily presence has been terminated, no longer holds in our networked society. In the digital age, the phenomenon of the digital legacy that an Internet user leaves behind after his demise, has led to new challenges for the legal system. The deceased is no longer in a position to exercise human autonomy as an active agent. The article reconsiders the notion of human autonomy with regard to these digital representations. Taking the point of view that the control over personal information (also known as informational self-determination) is essential in protecting one’s privacy in the antemortem life, the article explores whether this principle may have validity in the postmortem context. Legal philosophical arguments are advanced in a discourse about the quandary if digital personae of deceased persons can be bestowed with a legal basis of personality rights and concomitantly privacy rights. Therefore much attention is given to the problem of the subject, which does not seem to be functioning in the case of the absence of a living subject. Briefly referring to novel personae, it is argued that fundamental human rights need not be limited to the rights of living human beings.

Informational self-determination is a crucial legal principle that grants individuals greater control over their digital existence. This paper examines the complexities of digital identity and the legal challenges it presents. Digital identity blends objective elements, such as official documentation, with subjective aspects like personal and cultural affiliations. The increasing overlap between physical and digital identities raises legal and ethical concerns regarding identity protection, consent, and anonymity. The fragmentation of digital identity, risks of identity theft, and the expansion of digital profiling highlight the need for stronger legal mechanisms. While existing laws like the GDPR offer some protection, a broader legal framework is required to recognise identity as a fundamental right. The right to be forgotten and control over one’s digital self-representation are essential for personal autonomy. The study underscores how digital identity is increasingly shaped by third parties, leading to vulnerabilities that threaten fundamental rights. Expanding current privacy laws through the doctrine of informational self-determination is crucial for safeguarding identity in the evolving technological landscape.

Background As Next Generation Sequencing technologies are increasingly implemented in biomedical research and (translational) care, the number of study participants and patients who ask for release of their genomic raw data is set to increase. This raises the question whether research participants and patients have a legal and moral right to receive their genomic raw data and, if so, how this right should be implemented into practice. Methods In a first step we clarify some central concepts such as “raw data”; in a second step we sketch the international legal framework. The third step provides an extensive ethical analysis which comprehends two parts: an evaluation of whether there is a prima facie moral right to receive one’s raw data, and a contextualization and discussion of the right in light of potentially conflicting interests and rights of the data subject herself and third parties; in a last fourth step we emphasize the main practical consequences of the ethical analyses and propose recommendations for the release of raw data. Results In several legislations like the new European General Data Protection Regulation, patients do in principle have the right to receive their raw data. However, the procedural implementation of this right and whether it involves genetic counselling is at the discretion of the Member States. Even more questions remain with respect to the research context. The ethical analysis suggests that patients and research subjects have a moral right to receive their genomic raw data and addresses aspects which are also of relevance for the legal discussion such as the costs of release of raw data and its impact on academic freedom. Conclusion Taking into account the specific nature and implications of genomic raw data and the contexts of research and health care, several concerns and potentially conflicting interests of the data subjects themselves and involved researchers, physicians, biomedical institutions and relatives arise. Instead of using them to argue in favor of restrictions of the data subjects’ legal and moral right to genomic raw data, the concerns should be addressed through provision of information and other measures. To this end, we propose relevant recommendations.

This article proposes a systemic review of the protection of privacy in the Chilean Constitution, understood not only by the norms of Article 19 No. 4, the right to privacy and the right to the protection of personal data, but also through the normative content provided by No. 5, which comprises the rights to the inviolability of the home, private communications and documents, subject to constitutional protection. When we conceive the privacy protection standards set out in Chilean constitutional law as a system, we can appreciate that despite the obvious differences between the different rights that form this system, there are areas where they do intersect or overlap when applying them to specific facts. This wide scope of protection is essential to apply the right to privacy as a strong defence against the threats and risks posed by the use of digital technologies. Chile, Privacy, Constitutional Law, Personal Data, Private Communications, Informational Self-Determination

It is essential to address in particular the comprehensive prevention of breaches of the right to informational self-determination and whether the persons concerned are aware that they “voluntarily agree” to pass on their identity information to third parties. It is alarming nowadays what amount of private data are available at their disposal for companies or private persons regarding other persons and how easy it seems to obtain this data. In today’s information age and the era of more advanced use of artificial intelligence, it will be more necessary than in the past to define what the individual intended, what he agreed with, and what he eventually approved as data privacy.In order to ensure the protection of the individual and his/her privacy, it is therefore necessary to respond to and refine the existing sources of law, especially to establish codes of ethics taking into account the modern technological and social development.

Background This article describes how withdrawals and exclusions of study participants can be managed in COVID-19-cohort studies by NUKLEUS (German: NUM Klinische Epidemiologie- und Studienplattform), using NAPKON (German: Nationales Pandemie Kohorten Netz). The aim of this manuscript was to describe, how partial withdrawals can be performed so that most of the data and bio-samples can be kept for research purposes. Methods The study has taken all signed informed consents (ICs) of study participants into account in order to develop a method how partial withdrawals can be developed and installed. The informed consents, which comprise of mandatory and optional modules were investigated to find out which optional modules can be withdrawn from without withdrawing consent from the whole study. Results Withdrawals refer to signed ICs including mandatory and optional modules. Withdrawals can be submitted verbally or in writing, and regarding the IC, as a whole, or only partially. Consequently, implemented withdrawals for NAPKON cohorts comprise partial withdrawals with partial or no data deletion or complete withdrawals with data deletion. Thus, more data is still available for research purpose, which would have been lost without the possibility of partial withdrawals. In NAPKON, a total of 3,97% of the participants have submitted a withdrawal or have been excluded from the study if the inclusion criteria were no longer met. Conclusions This manuscript is to the author’s knowledge one of the first article related to withdrawals within COVID-19-studies (NAPKON). The processes serve as ‘best practice’ examples for planning and establishing withdrawal processes in medical research.

Atualmente, tem-se percebido o crescimento exponencial no volume de dados e informações disponíveis na rede em face das transformações advindas com as tecnologias da informação e comunicação. Esse processo tem modificado acentuadamente, como a circulação de dados e informações pessoais têm ocorrido, restando evidenciado a necessidade da criação da Lei Geral de Proteção de Dados para estabelecer o controle sobre a mesma. Nesse sentido, este trabalho, tem como escopo analisar o princípio da autodeterminação informativa como fundamento da proteção de dados pessoais visando delinear seu sentido, alcance, conceito e critérios de efetivação. Para isso, busca examinar aspectos fundamentais na circulação de dados e informações na atualidade, bem como sua regulação, com fulcro nos principais aspectos da Lei Geral de Proteção de dados, destacando o consentimento como forma de exteriorizar o fundamento da autodeterminação informativa. Como metodologia adotar-se-á pesquisa exploratória, bibliográfica e documental, tendo a hermenêutica como método de sistematização para determinar o sentido e o alcance das expressões do direito. Ao final, busca delinear o sentido, alcance, conceito e critérios de efetivação da autodeterminação informativa que torne possível a consequente construção de política de controle sob a circulação de dados e de informações pessoais de forma eficiente.