Do we need a right to mental privacy? In an era of increasing sophistication in recording, interpreting, and directly intervening on our neural activity – not to mention efforts at combining neural...

Background Sharing anonymized/de-identified clinical trial data and publishing research outcomes in scientific journals, or presenting them at conferences, is key to data-driven scientific exchange. However, when data from scientific publications are linked to other publicly available personal information, the risk of reidentification of trial participants increases, raising privacy concerns. Therefore, we defined a set of criteria allowing us to determine and minimize the risk of data reidentification. We also implemented a review process at Takeda for clinical publications prior to (...) submission for publication in journals or presentation at medical conferences. Methods Abstracts, manuscripts, posters, and oral presentations containing study participant information were reviewed and the potential impact on study participant privacy was assessed. Our focus was on direct and indirect identifiers, such as sex, age or geographical indicators in rare disease studies or studies with small sample size treatment groups. Risk minimization was sought using a generalized presentation of identifier-relevant information and decision-making on data sharing for further research. Additional risk identification was performed based on study participant/personnel parameters present in materials destined for the public domain. The potential for participant/personnel identification was then calculated to facilitate presentation of meaningful but de-identified information. Results The potential for reidentification was calculated using a risk ratio of the exposed versus available individuals, with a value above the threshold of 0.09 deemed an unacceptable level of reidentification risk. We found that in 13% of Takeda clinical trial publications reviewed, either individuals could potentially be reidentified or inappropriate data sharing plans could pose a data privacy risk to study participants. In 1/110 abstracts, 58/275 manuscripts, 5/87 posters and 3/58 presentations, changes were necessary due to data privacy concerns/rules. Despite the implementation of risk-minimization measures prior to release, direct and indirect identifiers were found in 11% and 34% of the analysed documents, respectively. Conclusions Risk minimization using de-identification of clinical trial data presented in scientific publications and controlled data sharing conditions improved privacy protection for study participants. Our results also suggest that additional safeguards should be implemented to ensure that higher data privacy standards are met. (shrink)

Background Protecting a person’s right to privacy and confidentiality is important in healthcare services. As future health professionals, nursing students should bear the same responsibility as qualified health professionals in protecting patient privacy. Objectives To investigate nursing students’ practices of patient privacy protection and to identify factors associated with their practices. Research design A cross-sectional study design was adopted. A two-part survey was used to collect two types of data on nursing students: (1) personal characteristics, including (...) demographics, clinical experience and use of information and communication technology and social media and (2) practice of patient privacy protection, collected using the Patient Privacy Scale. Participants and research context: A total of 319 nursing students aged 18 or above, studying pre-registration nursing programmes and who had attended at least one block of clinical placement, were recruited from a university in Hong Kong. Ethical considerations The study received ethical approval from the Survey and Behavioural Research Ethics Committee of the Chinese University of Hong Kong. The participants were informed of the study aim and written consent was obtained before completing the survey. Findings: The mean total score on the Patient Privacy Scale was 119.7 out of 135. Nursing students who were regular users of Instagram and those who had never taken photographs with patients and hence did not need to obtain patient consent were associated with better practices of patient privacy protection (higher total scores on the Patient Privacy Scale). Conclusions The findings improve our understanding of nursing students’ practice of patient privacy protection and the associated factors. This will inform the development and revision of current strategies to enhance nursing students’ practice of patient privacy protection, especially their use of social media. (shrink)

The COVID-19 pandemic has forced libraries to shift their service-delivery model online, infiltrating countless interactions–from storytime to reference questions to social groups–into digital mediation, typically by third-party platforms outside the library’s control, generating mineable, persistent digital traces. One community particularly vulnerable to the impacts of surveillance is the queer community, where an outing, at least in the United States, imposes a potential loss of housing and employment and may subject the outed person to violence. Libraries–particularly public and school libraries–have once (...) again become sites of conflict and resistance, with queer people and materials increasingly coming under attack both physically and legally. A primary shield by which libraries try to protect their patrons from such attacks is “privacy.” Librarians, as professionals, proclaim a commitment to privacy embedded in such documents as the American Library Association’s Library Bill of Rights and the International Federation of Library Associations and Institution’s Statement on Privacy in the Library Environment. However, these ideals exist in broader systems–including legal and cultural structures–which constrain and complicate abstract commitments to privacy. This article examines the challenges of queer digital privacy within libraries in the United States, focusing on the polysemous, boundary-crossing nature of queerness, the digital and the material, privacy, and libraries (as both concepts and institutions). In particular, this article demonstrates how binary-bound, individual-rights-oriented legal approaches to privacy have arisen, and been mediated, by cis-heteronormative patriarchal values and how the sociotechnical materialities in which they occurred (such as paper-based recordkeeping) are fundamentally incompatible with queer privacy needs. (shrink)

To solve the current privacy leakage problems of cloud storage services, research on users’ payment intention for cloud storage services with privacy protection is extremely important for improving the sustainable development of cloud storage services. An evolutionary game model between cloud storage users and providers that considers privacy is constructed. Then, the model’s evolutionary stability strategies via solving the replication dynamic equations are analyzed. Finally, simulation experiments are carried out for verifying and demonstrating the influence of (...) model parameters. The results show that the evolutionary stable strategies are mainly affected by the privacy protection profit growth coefficient of both parties, input costs, free-riding gains, and other factors. If the profit growth coefficient is very small, users will not choose to pay and providers will not choose to actively protect user information. As the profit growth coefficient increases, both parties will promote the development of privacy protection with a higher probability. The results are beneficial for cloud storage providers to increase the number of paid users and thus to achieve the sustainable development of cloud storage service. (shrink)

Palermos’s (2023) concept of “mental data” is appreciated as advancing fresh considerations in urgent discourse on mental privacy. However, it is suggested that the proposal for an ontologically di...

Data-driven technologies have come to pervade almost every aspect of business life, extending to employee monitoring and algorithmic management. How can employee privacy be protected in the age of datafication? This article surveys the potential and shortcomings of a number of legal and technical solutions to show the advantages of human rights-based approaches in addressing corporate responsibility to respect privacy and strengthen human agency. Based on this notion, we develop a process-oriented model of Privacy Due Diligence to (...) complement existing frameworks for safeguarding employee privacy in an era of Big Data surveillance. (shrink)

A growing number of consumer technology companies are aiming to convince older people that humanoid robots make helpful tools to support aging-in-place. As hybrid devices, socially assistive robots (SARs) are situated between health monitoring tools, familiar digital assistants, security aids, and more advanced AI-powered devices. Consequently, they implicate older people’s privacy in complex ways. Such devices are marketed to perform functions common to smart speakers (e.g., Amazon Echo) and smart home platforms (e.g., Google Home), while other functions are more (...) specific to older people, including health and safety monitoring and serving as companions to mitigate loneliness. Privacy is a key value central to debates about the ethics of using SARs in aged care, yet there has been very little interchange between these debates and the robust theoretical discussion in the legal literature about the future of privacy and AI governance. Drawing on two qualitative studies of older people’s views on consumer SARs, the paper contributes novel findings about older people’s thinking on privacy and data governance at the intersection of their experiences with present day digital technologies and projections for future AI systems, and places their views in dialogue with debates about the future of privacy protection and AI governance. (shrink)

Built-in privacy has for too long been neglected by regulators. They have concentrated on reacting to violations of rules. Even imposing severe fines will however not address the basic issue that preventative privacy protection is much more meaningful. The paper discusses this in the context of the International Working Group on Data Protection in Telecommunications (“Berlin Group”) which has published numerous recommendations on privacy-compliant design of technical innovations. Social network services, road pricing schemes, and the (...) distribution of digital media content have figured prominently in the group’s latest working papers. More recently, a judgment of the European Court of Human Rights has thrown light on weaknesses in the protection of patients’ data in hospitals that requires urgent action by designers of IT systems. Built-in privacy is no magic button, no panacea, but it has turned out to be a necessary condition for meaningful privacy protection. (shrink)

As a key constituent of China's approach to fighting COVID-19, Health Code apps (HCAs) not only serve the pandemic control imperatives but also exercise the agency of digital surveillance. As such, HCAs pave a new avenue for ongoing discussions on contact tracing solutions and privacy amid the global pandemic. This article attends to the perceived privacy protection among HCA users via the lens of the contextual integrity theory. Drawing on an online survey of adult HCA users in (...) Wuhan and Hangzhou (N = 1551), we find users’ perceived convenience, attention towards privacy policy, trust in government, and acceptance of government purposes regarding HCA data management are significant contributors to users’ perceived privacy protection in using the apps. By contrast, users’ frequency of mobile privacy protection behaviors has limited influence, and their degrees of perceived protection do not vary by sociodemographic status. These findings shed new light on China's distinctive approach to pandemic control with respect to the state's expansion of big data-driven surveillance capacity. Also, the findings foreground the heuristic value of contextual integrity theory to examine controversial digital surveillance in non-Western contexts. Put tougher, our findings contribute to the thriving scholarly conversations around digital privacy and surveillance in China, as well as contact tracing solutions and privacy amid the global pandemic. (shrink)

To solve the problem of user privacy disclosure caused by attacks on anonymous areas in spatial generalization privacy protection methods, a K and P Dirichlet Retrieval method based on k-anonymity mechanism is proposed. First, the Dirichlet graph model is introduced, the same kind of information points is analyzed by using the characteristics of Dirichlet graph, and the anonymous set of users is generated and sent to LBS server. Second, the relationship matrix is generated, and the proximity relationship (...) between the user position and the target information point is obtained by calculation. Then, the private information retrieval model is applied to ensure the privacy of users’ target information points. Finally, the experimental results show that the KPDR method not only satisfies the diversity of l 3 / 4, but also increases the anonymous space, reduces the communication overhead, ensures the anonymous success rate of users, and effectively prevents the disclosure of user privacy. (shrink)

Public policies designed to regulate the use of information technology to protect personal data have been based on different theoretical assumptions in different states, depending on whether the problem is defined in technological, civil libertarian, or bureaucratic terms. However, the rapid development, dispersal, and decentralization of information technology have facilitated a range of new surveillance practices that have in turn rendered the approaches of the 1960s and 1970s obsolete. The networking of the postindustrial state will require a reconceptualization of the (...) dynamic relationship between organizational practices and information technology and a more comprehensive appreciation of the privacy problem. With the call for the development of a more coherent information policy in a number of countries, there is evidence that policymakers have been taking this more holistic view. (shrink)

This paper addresses the question of delegation of morality to a machine, through a consideration of whether or not non-humans can be considered to be moral. The aspect of morality under consideration here is protection of privacy. The topic is introduced through two cases where there was a failure in sharing and retaining personal data protected by UK data protection law, with tragic consequences. In some sense this can be regarded as a failure in the process of (...) delegating morality to a computer database. In the UK, the issues that these cases raise have resulted in legislation designed to protect children which allows for the creation of a huge database for children. Paradoxically, we have the situation where we failed to use digital data in enforcing the law to protect children, yet we may now rely heavily on digital technologies to care for children. I draw on the work of Floridi, Sanders, Collins, Kusch, Latour and Akrich, a spectrum of work stretching from philosophy to sociology of technology and the “seamless web” or “actor–network” approach to studies of technology. Intentionality is considered, but not deemed necessary for meaningful moral behaviour. Floridi’s and Sanders’ concept of “distributed morality” accords with the network of agency characterized by actor–network approaches. The paper concludes that enfranchizing non-humans, in the shape of computer databases of personal data, as moral agents is not necessarily problematic but a balance of delegation of morality must be made between human and non-human actors. (shrink)

Societies evolve practices that reflect social norms of appropriateness in social interaction, for example when and to what extent one should respect the boundaries of another person’s private sphere. One such practice is what the sociologist Erving Goffman called civil inattention—the social norm of showing a proper amount of indifference to others—which functions as an almost unnoticed yet highly potent privacy-preserving mechanism. These practices can be disrupted by technologies that afford new forms of intrusions. In this paper, we show (...) how new networked technologies, such as facial recognition, challenge our ability to practice civil inattention. We argue for the need to revitalise, in academic and policy debates, the role of civil inattention and related practices in regulating behaviour in public space. Our analysis highlights the relational nature of privacy and the importance of social norms in accomplishing and preserving it. While our analysis goes some way in supporting current calls to ban FR technology, we also suggest that, pending a ban and in light of the power of norms to limit what is otherwise technically possible, cultivating new practices of civil inattention may help address the challenges raised by FR and other forms of digital surveillance in public. (shrink)

Given recent technological advances, we now are able to invade personal privacy as never before. The challenge in the business community is to make the most of the opportunities presented by the growth in communication technology while, at the same time, protecting what remains of individual privacy. The conflict between technological advances and privacy concerns is not new, but it has grown exponentially in recent years, and the development of a data protection scheme in the European (...) Union lends a certain economic urgency to meeting the challenge.Pursuant to a Directive adopted by the European Union, privacy protections throughout the EU must become more stringent and consistent throughout EU member countries. One area of great concern to the United States is the Directive's requirement for certain minimum standards of privacy protection in countries receiving information from member countries. Given the limited protections available in the United States, it does not appear that the United States meets these minimum standards. The purpose of this paper is to critically analyze the existing measurements of global privacy protections and to propose a new model which allows for their comparative evaluation. (shrink)

Confidentiality is a central bioethical principle governing the provider–patient relationship. Dating back to Hippocrates, new laws have interpreted it for the age of precision medicine and electronic medical records. This is where the discussion of privacy and technology often ends in the scientific health literature when Internet-related technologies have made privacy a much more complex challenge with broad psychological and clinical implications. Beyond the recognised moral duty to protect patients’ health information, clinicians should now advocate a basic right (...) to privacy as a means to safeguard psychological health. The article reviews empirical research into the functions of privacy, the implications for psychological development and the resigned sentiment taking hold regarding the ability to control personal data. The article concludes with a call for legislative, educational and research steps to readjust the equilibrium between the individual and ‘Big Data’. (shrink)

This Article takes the perspective of law and philosophy, integrating insights from computer science. First, I will argue that in the era of big data analytics we need an understanding of privacy that is capable of protecting what is uncountable, incalculable or incomputable about individual persons. To instigate this new dimension of the right to privacy, I expand previous work on the relational nature of privacy, and the productive indeterminacy of human identity it implies, into an ecological (...) understanding of privacy, taking into account the technological environment that mediates the constitution of human identity. Second, I will investigate how machine learning actually works, detecting a series of design choices that inform the accuracy of the outcome, each entailing trade-offs that determine the relevance, validity and reliability of the algorithm’s accuracy for real life problems. I argue that incomputability does not call for a rejection of machine learning per se but calls for a research design that enables those who will be affected by the algorithms to become involved and to learn how machines learn — resulting in a better understanding of their potential and limitations. A better understanding of the limitations that are inherent in machine learning will deflate some of the eschatological expectations, and provide for better decision-making about whether and if so how to implement machine learning in specific domains or contexts. I will highlight how a reliable research design aligns with purpose limitation as core to its methodological integrity. This Article, then, advocates a practice of “agonistic machine learning” that will contribute to responsible decisions about the integration of data-driven applications into our environments while simultaneously bringing them under the Rule of Law. This should also provide the best means to achieve effective protection against overdetermination of individuals by machine inferences. (shrink)

Genetic privacy and confidentiality have both intrinsic and consequential value. Although general agreement exists about the need to protect privacy and confidentiality in the abstract, most of the concern has focused on preventing the harmful uses of this sensitive information. I hope to demonstrate in this article that the reason why genetic privacy and confidentiality are so difficult to protect is that any effort to protect them inevitably implicates broader and extremely contentious issues, such as the right (...) of access to health care. Moreover, the tentative legislative and policy steps undertaken and proposed thus far have been, for the most part, misguided, simplistic, and ineffective. (shrink)

Genetic privacy and confidentiality have both intrinsic and consequential value. Although general agreement exists about the need to protect privacy and confidentiality in the abstract, most of the concern has focused on preventing the harmful uses of this sensitive information. I hope to demonstrate in this article that the reason why genetic privacy and confidentiality are so difficult to protect is that any effort to protect them inevitably implicates broader and extremely contentious issues, such as the right (...) of access to health care. Moreover, the tentative legislative and policy steps undertaken and proposed thus far have been, for the most part, misguided, simplistic, and ineffective. (shrink)

BackgroundAdvances in healthcare artificial intelligence (AI) are occurring rapidly and there is a growing discussion about managing its development. Many AI technologies end up owned and controlled by private entities. The nature of the implementation of AI could mean such corporations, clinics and public bodies will have a greater than typical role in obtaining, utilizing and protecting patient health information. This raises privacy issues relating to implementation and data security. Main bodyThe first set of concerns includes access, use and (...) control of patient data in private hands. Some recent public–private partnerships for implementing AI have resulted in poor protection of privacy. As such, there have been calls for greater systemic oversight of big data health research. Appropriate safeguards must be in place to maintain privacy and patient agency. Private custodians of data can be impacted by competing goals and should be structurally encouraged to ensure data protection and to deter alternative use thereof. Another set of concerns relates to the external risk of privacy breaches through AI-driven methods. The ability to deidentify or anonymize patient health data may be compromised or even nullified in light of new algorithms that have successfully reidentified such data. This could increase the risk to patient data under private custodianship.ConclusionsWe are currently in a familiar situation in which regulation and oversight risk falling behind the technologies they govern. Regulation should emphasize patient agency and consent, and should encourage increasingly sophisticated methods of data anonymization and protection. (shrink)

This article is the result of an international research between law and ethics scholars from Universities in France and Switzerland, who have been closely collaborating with technical experts on the design and use of information and communication technologies in the fields of human health and security. The interdisciplinary approach is a unique feature and guarantees important new insights in the social, ethical and legal implications of these technologies for the individual and society as a whole. Its aim is to shed (...) light on the tension between secrecy and transparency in the digital era. A special focus is put from the perspectives of psychology, medical ethics and European law on the contradiction between individuals’ motivations for consented processing of personal data and their fears about unknown disclosure, transferal and sharing of personal data via information and communication technologies (named the “privacy paradox”). Potential benefits and harms for the individual and society resulting from the use of computers, mobile phones, the Internet and social media are being discussed. Furthermore, the authors point out the ethical and legal limitations inherent to the processing of personal data in a democratic society governed by the rule of law. Finally, they seek to demonstrate that the impact of information and communication technology use on the individuals’ well-being, the latter being closely correlated with a high level of fundamental rights protection in Europe, is a promising feature of the socalled “e-democracy” as a new way to collectively attribute meaning to large-scale online actions, motivations and ideas. (shrink)

While maintaining the importance of privacy for critical evaluations of surveillance technologies, I suggest that privacy also constrains the debate by framing analyses in terms of the individual. Public space provides a site for considering what is at stake with surveillance technologies besides privacy. After describing two accounts of privacy and one of public space, I argue that surveillance technologies simultaneously add an ambiguityand a specificity to public places that are detrimental to the social, cultural, and (...) civic importance of these places. By making public places accessible to other places and/or times, surveillance technologies make these social contexts ambiguous by blurring their spatial and temporal bounds. At the same time, surveillancetechnologies valence public places in functionally specificways that are detrimental to informal civic life. To complement defensive approaches to surveillance technologies based onindividual privacy, I conclude by suggesting how sociality as a relational value or an ethics of place as a contextual value could provide a proactive line of reasoning for affirming the value ofthat which is between people and places. (shrink)

The standard approach to protecting privacy in healthcare aims to control access to personal information. We cannot regain control of information after it has been shared, so we must restrict access from the start. This ‘control’ conception of privacy conflicts with data-intensive initiatives like precision medicine and learning health systems, as they require patients to give up significant control of their information. Without adequate alternatives to the control-based approach, such data-intensive programmes appear to require a loss of (...) class='Hi'>privacy. This paper argues that the control view of privacy is shortsighted and overlooks important ways to protect health information even when widely shared. To prepare for a world where we no longer control our data, we must pursue three alternative strategies: obfuscate health data, penalise the misuse of health data and improve transparency around who shares our data and for what purposes. Prioritising these strategies is necessary when health data are widely shared both within and outside of the health system. (shrink)

This book considers all aspects of privacy and security relating to an individual's DNA, with a concentration on fundamental human rights as well as specific cases and examples, in addressing greater security and privacy in the modern world.

The concept of privacy as a basic human right which has to be protected by law is a recently adopted concept in Thailand, as the protection of human rights was only legally recognized by the National Human Rights Act in 1999. Moreover, along with other drafted legislation on computer crime, the law on privacy protection has not yet been enacted. The political reform and the influences of globalization have speeded up the process of westernization of the (...) urban, educated middle-class professionals. However, the strength of traditional Thai culture means that a mass awareness of the concept of privacy rights remains scarce. This paper explicates the Thai cultural perspective on privacy and discusses the influence of Buddhism on privacy rights, including the impacts of globalization and the influence of Western values on the country’s political and legal developments. The paper also discusses the legal provisions regarding privacy protection, and the debates on the smart ID cards policy and SIM cards registration for national security. (shrink)

When information is transformed from what has traditionally been a paper-based format into digitized elements with meaning associated to them, new and intriguing discussions begin surrounding proper and improper uses of this codified and easily transmittable information. As these discussions continue, some health care providers, insurers, laboratories, pharmacies, and other healthcare stakeholders are creating and retroactively digitizing our medical information with the unambiguous endorsement of the federal government.Some argue that these enormous databases of medical information offer improved access to timely (...) information, evidence-based treatments, and complete records from which to provide care. To the extent that these claims are true, it would seem that this is a valuable asset that offers immeasurable benefit to all. Others believe this digitization to be an egregious invasion of privacy. In this article, I investigate the broad research questions of whether the public good aspect of capturing private health information outweighs individual interests and whether it is ethical to mandate participation in health information exchanges by all individuals who use the U.S. health system. (shrink)

The spread of digital technology to all parts of our lives has led to meaningful benefits, ranging from the conveniences offered by ride-sharing apps to prediction of mental health crises and track...

The possibilities for collecting, storing, and processing of data have increased significantly over the last decades. It has been argued that an increasing demand for health data will de...

In this study, the under-examined area of privacy perception and protection on Chinese social media is investigated. The prevalence of digital technology shapes the social, political and cultural aspects of the lives of urban young adults. The influential Chinese social media platform WeChat is taken as a case study, and the ease of connection, communication and transaction combined with issues of commercialisation and surveillance are discussed in the framework of the privacy paradox. Protective behaviour and tactics are (...) examined through different perceptions of privacy in the digital age. The findings of this study suggest that users possess certain amount of freedoms on WeChat. However, users’ individual privacy attitudes and behaviour in practice suggest they have a declined sense of their own freedom and right to privacy. A privacy paradox exists when users, while holding a high level of concerns, in reality do little to further the protection of their personal information on WeChat. We argue that once a user has ingrained part of their social engagement within the WeChat system, the incentive for them to remain a part of the system outweighs their requirement to secure their privacy online as their decision-making is largely based on a simple cost-benefit analysis. The power and social capital yielded via WeChat is too valuable to give up as WeChat is widely used not only for private conversations, but also for study or work-related purposes. It further blurs the boundaries between the public, the professional and the private, which is a rather unique case compared with other social media around the world. (shrink)

The United Nations confirmed that privacy remains a human right in the digital age, but our daily digital experiences and seemingly ever-increasing amounts of data suggest that privacy is a mundane, distributed and technologically mediated concept. This article explores privacy by mapping out different legal and conceptual approaches to privacy protection in the context of datafication. It provides an essential starting point to explore the entwinement of technological, ethical and regulatory dynamics. It clarifies why each (...) of the presented approaches emphasises particular aspects and analyses the tensions that arise. The resulting overview provides insight into the main strengths and limitations of the different approaches arising from specific traditions. This analytic overview therefore serves as a key resource to analyse the usefulness of the approaches in the context of the increasing datafication of both private and public spheres.Specifically, we contrast the approach focusing on data subjects whose data are being ‘protected’ with others, including Fair Information Practice Principles, the German right to ‘informational self-determination’, and the South American ‘habeas data’ doctrine. We also present and contrast emerging approaches to privacy and discuss their intersection with datafication. In conclusion, we put forth that rather than aiming for one single solution that works worldwide and across all situations, it is essential to identify synergies and stumbling blocks between the various regulatory settings and newly emerging approaches. (shrink)

In the digital age individuals face key choices about whether and how to share intimate details of their lives, “images of the body, biological data in general and diagnostic information” (Pyrrho,...

This book presents the latest research on the challenges and solutions affecting the equilibrium between freedom of speech, freedom of information, information security, and the right to informational privacy. Given the complexity of the topics addressed, the book shows how old legal and ethical frameworks may need to be not only updated, but also supplemented and complemented by new conceptual solutions. Neither a conservative attitude (“more of the same”) nor a revolutionary zeal (“never seen before”) is likely to lead (...) to satisfactory solutions. Instead, more reflection and better conceptual design are needed, not least to harmonise different perspectives and legal frameworks internationally. The focus of the book is on how we may reconcile high levels of information security with robust degrees of informational privacy, also in connection with recent challenges presented by phenomena such as “big data” and security scandals, as well as new legislation initiatives, such as those concerning “the right to be forgotten” and the use of personal data in biomedical research. The book seeks to offer analyses and solutions of the new tensions, in order to build a fair, shareable, and sustainable balance in this vital area of human interactions. (shrink)

This article attempts to explain and analyse the nature and characteristic features of a person’s privacy in the on‐line environment in order to assess how these features shape the need for protection. Since the internet has invaded our everyday lives, individual privacy is exposed in different ways in cyberspace. It is important to note that the Internet lacks the traditional characteristics of a ‘physical’ space, but the interests and inherent values protected by privacy remain the same (...) in cyberspace. The article discusses the factors that shape a different nature of online privacy compared to its off line counterpart. Online privacy may not be a novel right, but it is definitely one exposed to a whole new environment which has its own special need for protection. (shrink)

Traditional arguments for privacy in public suggest that intentionally public activities, such as political speech, do not deserve privacy protection. In this article, I develop a new argument for the view that surveillance of intentionally public activities should be limited to protect the specific good that this context provides, namely democratic legitimacy. Combining insights from Helen Nissenbaum’s contextualism and Jürgen Habermas’s theory of the public sphere, I argue that strategic surveillance of the public sphere can undermine the (...) capacity of citizens to freely deliberate in public and therefore conflicts with democratic self-determination. (shrink)

Mandatory reporting of infectious diseases (MRID) is an essential practice to prevent disease outbreaks. Disease notification is a mandatory procedure for most infectious diseases, even during non-pandemic periods in healthcare. The main rationale behind MRID is the protection of public health. The information and data provided by infectious disease reports are used for many purposes, such as preventing the spread and potential negative impact of infectious diseases, assessing the national and global situation regarding reported diseases, conducting scientific research and (...) planning health policy. In this context, the relevant information benefits public health, health systems and scientific work. Additionally, the follow up and treatment of individuals with infectious diseases is a necessity in certain cases to protect those who cohabit with them. However, these benefits cannot be accepted as unrestricted justifications for MRID, since it is evident that reporting should be conducted within ethical and legal boundaries. MRID should only be devised and implemented with due regard to balancing potential benefits between all individuals, as well as between the individual and the rest of society. Disease notification systems that are not designed with a balancing and harm-reductionist approach may lead to stigmatisation and discrimination. This study aims to investigate the legal framework and ethical issues regarding the reporting of individuals diagnosed with COVID-19 in Turkey—which is a primary example of a developing country. (shrink)