Emergent technologies are undermining both decisional privacy (intimacy) and informational privacy. Regarding the former consider, e.g., technical intrusions on burglar alarms and telephone calls. Regarding the latter consider how routinely technologies enable intrusion into electronic data processing (EDP) in spite of government efforts to maintain control. These efforts are uneven among nations thus inviting selective choice of a data storage country. Deregulation of telecommunications and assigning operators First Amendment rights invites multiple efforts to profit from preferential (...) treatment of multiple competitors. (shrink)

While the story of Stanislav Petrov – the Soviet Lieutenant Colonel who likely saved the world from nuclear holocaust in 1983 – is often trotted out to advocate for the view that human beings ought to be kept “in the loop” of automated weapons’ responses, I argue that the episode in fact belies this reading. By attending more closely to the features of this event – to Petrov’s professional background, to his familiarity with the warning system, and to his decisions (...) to defy his protocol – it becomes clear that Petrov was not seamlessly working “in his loop,” but reassessing it entirely. I claim that this exhibits a paradox intrinsic to all automated loops: namely, that their optimum function in fact rests on unforeseen human interventions that cannot be reliably codified ex ante, that is, that good judgment cannot simply be “programmed into” their protocols. This dependence, moreover, reveals automation’s ineluctable need for virtue ethics – not in the usual sense (whereby ethics deliberates about, say, possible damages and loss of life), but in the sense that ethical judgment, rightly understood, entails the reassessment of all of the conditions surrounding a decision, including whether a protocol should be followed at all. (shrink)

Digital technology is rapidly transforming human life. But our cognition is honed for an analog world. I call this the problem of digital whiplash: that the digital transformation of society, like a vehicle whose sudden acceleration injures its occupants, is too fast to be safe. I focus on the unprecedented phenomenon of digital surveillance, which I argue poses a long-term threat to human autonomy that our cognition is ill-suited to recognize or respond to. Human cognition is embodied and context-sensitive, and (...) thus faces four problems of digital whiplash vis-à-vis digital surveillance. First is the problem of signal sparsity, that there are few if any perceptible indications of digital surveillance. Second is the problem of signal elusiveness, that the few indications there are prohibitively difficult to discover. Third is the distraction problem, that using digital technologies corrodes the cognitive abilities we need to recognize and respond to digital surveillance. Fourth is the hooking problem, that digital technologies are engineered to cultivate dependency. I address, among other objections, the idea that we choose to exchange our privacy for the use of digital technologies, so their use is in fact an expression of autonomy. The response to digital whiplash, I argue, is not to slow down the digitalization of society in its current form so that we can adapt our cognitive capacities. It is to allow ourselves the time to reflect on and debate whether digitalization, in its current form, is delivering a socially and ethically desirable future. (shrink)

The starting point of this article is that employees’ chances of securing reasonable expectations of privacy at work must be better protected. A dependency asymmetry between employer and job-applicant implies that prospective employees are in a disadvantaged position vis à vis the employer regarding the chances of defending their reasonable interests. Since an increased usage of work related surveillance will, to a larger extent, require of job-applicants that they negotiate their privacy interests in employment contracting, it is important (...) to consider means of strengthening employees’ negotiating power. This article emphasizes the importance of contextualizing consent for contractual agreements to be ethically acceptable. (shrink)

The present study examines certain challenges that KDD (Knowledge Discovery in Databases) in general and data mining in particular pose for normative privacy and public policy. In an earlier work (see Tavani, 1999), I argued that certain applications of data-mining technology involving the manipulation of personal data raise special privacy concerns. Whereas the main purpose of the earlier essay was to show what those specific privacy concerns are and to describe how exactly those concerns have been introduced (...) by the use of certain KDD and data-mining techniques, the present study questions whether the use of those techniques necessarily violates the privacy of individuals. This question is considered vis-à-vis a recent theory of privacy advanced by James Moor (1997). The implications of that privacy theory for a data-mining policy are also considered. (shrink)

Safe-by-Design (SbD) is a new concept that urges the developers of novel technologies to integrate safety early on in their design process. A SbD approach could—in theory—support the development of safer products and assist a responsible transition to the bioeconomy, via the deployment of safer bio-based and biotechnological alternatives. Despite its prominence in policy discourse, SbD is yet to gain traction in research and innovation practice. In this paper, we examine a frequently stated objection to the initiative of SbD, (...) namely the position that SbD is already common practice in research and industry. We draw upon observations from two case studies: one, a study on the applicability of SbD in the context of bio-based circular materials and, two, a study on stakeholder perceptions of SbD in biotechnology. Interviewed practitioners in both case studies make claims to a strong safety culture in their respective fields and have difficulties differentiating a SbD approach from existing safety practices. Two variations of this argument are discussed: early attentiveness to safety as a strictly formalised practice and early attentiveness as implicit practice. We analyse these perceptions using the theoretical lens of safety culture and contrast them to the aims of SbD. Our analysis indicates that professional identity and professional pride may explain some of the resistance to the initiative of SbD. Nevertheless, SbD could still be advantageous by a) emphasising multidisciplinary approaches to safety and b) offering a (reflective) frame via which implicit attentiveness to safety becomes explicit. (shrink)

The paper introduces an approach to privacy enhancing technologies that sees privacy not merely as an individual right, but as a public good. This idea finds its correspondence in our approach to privacy protection through obfuscation, where everybody in a group takes a small privacy risk to protect the anonymity of fellow group members. We show how these ideas can be computationally realised in an Investigative Data Acquisition Platform. IDAP is an efficient symmetric Private Information (...) Retrieval protocol optimised for the specific purpose of facilitating public authorities’ enquiries for evidence. (shrink)

In recent years, there has been a growing interest in finding stronger means of securitising identity against the various risks presented by the mobile globalised world. Biometric technology has featured quite prominently on the policy and security agenda of many countries. It is being promoted as the solution du jour for protecting and managing the uniqueness of identity in order to combat identity theft and fraud, crime and terrorism, illegal work and employment, and to efficiently govern various domains and services (...) including asylum, immigration and social welfare. In this paper, I shall interrogate the ways in which biometrics is about the uniqueness of identity and what kind of identity biometrics is concerned with. I argue that in posing such questions at the outset, we can start delimiting the distinctive bioethical stakes of biometrics beyond the all-too-familiar concerns of privacy, data protection and the like. I take cue mostly from Cavarero’s Arendt-inspired distinction between the “what” and the “who” elements of a person, and from Ricoeur’s distinction between the “idem” and “ipse” versions of identity. By engaging with these philosophical distinctions and concepts, and with particular reference to the example of asylum policy, I seek to examine and emphasise an important ethical issue pertaining to the practice of biometric identification. This issue relates mainly to the paradigmatic shift from the biographical story (which for so long has been the means by which an asylum application is assessed) to bio-digital samples (that are now the basis for managing and controlling the identities of asylum applicants). The purging of identity from its narrative dimension lies at the core of biometric technology’s overzealous aspiration to accuracy, precision and objectivity, and raises one of the most pressing bioethical questions vis-à-vis the realm of identification. (shrink)

Current advances in connectivity, sensor technology, computing power and the development of complex algorithms for processing health-related data are paving the way for the delivery of innovative long-term health care services in the future. Such technological developments will, in particular, assist the elderly and infirm to live independently, at home, for much longer periods. The home is, in fact, becoming a locus for health care innovation that may in the future compete with the hospital. However, along with these advances come (...) valid privacy and security questions arising from the fact that the data collected and transmitted through these technologies could also allow for individual monitoring as well as unauthorized access to critical diagnostic and other health data. (shrink)

Critics of Big Tech often describe ‘surveillance capitalism’ in grim terms, blaming it for all kinds of political and social ills. This article counters this pessimistic narrative, offering a more favorable take on companies like Google, YouTube, and Twitter/X. It argues that the downsides of surveillance capitalism are overstated, while the benefits are largely overlooked. Specifically, the article examines six critical areas: i) targeted advertising, ii) the influence of surveillance capitalism on politics, iii) its impact on mental health, iv) its (...) connection with government surveillance, v) its effects on the rule of law and social trust, and vi) privacy concerns. For each area, it will be argued that concerns about surveillance capitalism are unfounded or exaggerated. The article also explores some benefits of the services provided by these technology companies and concludes with a discussion of the practical implications. Throughout, the article draws on empirical evidence relating to the societal and political impact of digital technologies. (shrink)

This paper reviews Facebook's controversial privacy policies as a basis for considering how social network sites can better protect the personal information of their users. We argue that Facebook's architecture leaves its users too exposed, especially to online surveillance. This architecture must be modified and Facebook must be more proactive in safeguarding the rights of their customers as it seeks to find the proper balance between user privacy and its commercial interests.

The ethical dilemma of large-scale multinational corporations is presented. The list of complaints and issues is summarized. A case is made for the concept of multinationals being inherently beneficial in today's world of high technology and dependence on international trade. The difficulty is extreme power wielded by some groups. It is concluded that a philosophical ideal is for control on size and power as well as international rules to prevent abuses of power. The concern is that today the worthiness of (...) being relatively small is slowly but surely being eroded. (shrink)

In this paper I want to show that consumer concerns can be implemented in food chains by organizing ethical discussions of conflicting values that include them as participators. First, it is argued that there are several types of consumer concerns about food and agriculture that are multi-interpretable and often contradict each other or are at least difficult to reconcile without considerable loss. Second, these consumer concerns are inherently dynamic because they respond to difficult and complex societal and technological situations and (...) developments. For example, because of the rising concern with global warming, carbon dioxide absorption of crops is now attracting public attention, which means that new requirements are being proposed for the environmentally friendly production of crops. Third, there are different types of consumers, and their choices between conflicting values differ accordingly. Consumers use different weighing models and various types of information in making their food choices. Changing food chains more in accordance with consumer concerns should at least take into account the multi-interpretable, dynamic, and pluralist features of consumer concerns, for example, in traceability schemes. In discussing usual approaches such as codes, stakeholder analysis, and assurance schemes, I conclude that these traditional approaches can be helpful. However, in cases of dynamic, pluralistic, and uncertain developments, maintaining some pre-existing evaluating scheme or some clear cut normative hierarchy, such as codes or assurance schemes, can be disastrous in undermining new ethical desirable initiatives. Instead of considering ethical standards and targets as fixed, which is done with codes and schemes, it is more fruitful to emphasize the structure of the processes in which ethical weighing of relevant consumer concerns get shaped. The concept of “Ethical Room for Maneuver” (ERM) is constructed to specify the ethical desirable conditions under which identification and weighing of paramount values and their dilemmas can be processed. The main aims of the ERM are making room in all the links of the food chain for regulating and implementing the relevant consumer concerns by (1) balancing and negotiating, (2) supporting information systems that are relevant and communicative for various consumer groups and (3) organizing consumer involvement in the links of the food chain. The social and political context of agriculture and food production, particularly in Europe, gives ample opportunity for implementing several types of Ethical Rooms for Maneuver. Finally, I discuss several types of Ethical Rooms for Manoeuvre in the food chains that can be communicated by means of specific traceability schemes to less involved stakeholders with the potential consequence that the stakeholders will be motivated to be more involved. (shrink)

The ideas of technological determinism and the autonomy of technology are long-standing and widespread. This article explores why the use of certain technologies is perceived to be obligatory, thus fueling the fatalism of technological determinism and undermining our sense of freedom vis-à-vis the use of technologies. Three main mechanisms that might explain “obligatory technologies” (technologies that must be adopted) are explored. First, competition between individuals or groups drives the adoption of technologies that enhance or extend (...) human capacities. Second, individuals and groups may become dependent on technologies. Third, technologies induce changes in social norms and values that may come to be enforced through various social mechanisms, including the law. The widespread ideology of the beneficence and inevitability of technological progress in our culture helps this process along. (shrink)

Perspicuous representation, Wittgenstein offers, is not another methodology, but it consists in seeing the connections. The Wittgensteinian perspicuous representation is therapeutic. The method he suggests for philosophy is the same method he suggests for social sciences. In both of these cases, he tries to get us to see the confusions we become entangled in when philosophizing and theorizing. In both of these disciplines he warns us not to advance explanatory, metaphysical theories. In this paper, I connect this concern with Wittgenstein’s (...) critique of Frazer. In criticizing Frazer, Wittgenstein adopts the important part of Spengler’s view. Nonetheless, there are differences between Wittgenstein’s views and those of Spengler; this paper aims to show similarities as well as these differences. The first part of the paper briefly summarizes Frazer’s views. The second part focuses on Wittgenstein’s critique of Frazer concerning science and technology. The third part gives an account of his critique regarding method of social sciences and philosophy. The last part concentrates on Wittgenstein’s critique of Frazer pertaining to the tolerance towards alternative forms of life. Key Words: context-free vacuum • evolutionary explanation • incommensurability • methodology of social sciences • perspicuous representation • science • technology • tolerance • totem and taboo. (shrink)

This essay examines issues involving personal privacy and informed consent that arise at the intersection of information and communication technology and population genomics research. I begin by briefly examining the ethical, legal, and social implications program requirements that were established to guide researchers working on the Human Genome Project. Next I consider a case illustration involving deCODE Genetics, a privately owned genetics company in Iceland, which raises some ethical concerns that are not clearly addressed in the current ELSI guidelines. (...) The deCODE case also illustrates some ways in which an ICT technique known as data mining has both aided and posed special challenges for researchers working in the field of population genomics. On the one hand, data-mining tools have greatly assisted researchers in mapping the human genome and in identifying certain “disease genes” common in specific populations. On the other hand, this technology has significantly threatened the privacy of research subjects participating in population genomics studies, who may, unwittingly, contribute to the construction of new groups that put those subjects at risk for discrimination and stigmatization. In the final section of this paper I examine some ways in which the use of data mining in the context of population genomics research poses a critical challenge for the principle of informed consent, which traditionally has played a central role in protecting the privacy interests of research subjects participating in epidemiological studies. (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)

Artificial intelligence is the new technological buzzword. Everything from camera apps on your mobile phone to medical diagnosis algorithms to expert systems are now claiming to be ‘AI’, and many more facets of our lives are being colonized by the application of AI/ML systems (henceforth, ‘AI’). But what does this entail to designers, users and to society at large? Most of the philosophical discourse in this context has focused on the analysis and clarification of the epistemological claims of intelligence within (...) AI and on the moral implications of AI. Philosophical critiques of the plausibility of artificial intelligence do not have much to say about the real-world repercussions of introducing AI systems into every possible domain in the name of automation and efficiency; similarly, most of the moral misgivings about AI have to do with conceiving them as autonomous agents beyond the control of human actors. These discussions have clarified the debate surrounding AI to a great extent; however, certain crucial questions remain outside the ambit of these debates. Arguments in support of AI often take advantage of this void by emphasizing that AI systems are no different than previously existing ‘unintelligent’ technologies, thereby implying that the economic, existential, and ethical threats posed by these systems are either similar in kind as those posed by any other technology or grossly misplaced and exaggerated. In this chapter, we shall think through this assumption by investigating into the ontology of AI systems vis-à-vis ordinary (non-AI) technical artefacts to see wherein lies the distinction between the two. I shall examine how contemporary ontologies of technical artefacts (e.g., intentionalist and non-intentionalist theories of function) apply to AI. Hence, clarifying the ontology of AI is crucial to understand their normative and moral significance and the implications therefrom. (shrink)

This work sought to carry out a comparative analysis of in vitro fertilization (IVF) vis-à-vis St. Thomas Aquinas’ Natural Law Theory. Both of them emanated from problem of infertility. IVF makes use of artificial insemination for fertilization which is quite contrary to the natural process of sexual reproduction. This work makes use of analytic method to analyse comparatively in vitro fertilization and St. Thomas Aquinas’ Natural Law Theory. Thus, this work conceives that IVF is one of the assisted reproductive (...) class='Hi'>technologies in the scientific exploration of genetic engineering and bio-technology which emanated to tackle the problem of genetic inheritance outside marriage. It contravenes the coital or natural reproduction which conforms to St. Thomas Aquinas’ second precept of natural law. Again, IVF is artificial as such it is pruned to many complications. There is no adequate information given by the medical practitioners or providers of this service on the health hazards or risks involve in IVF. In addition, in vitro fertilization makes provision for donor gamete and surrogate motherhood which may have many negative implications both for the couples, off-spring, gestation mother, and society at large. (shrink)

This article addresses the art of living in a technological culture as the active engagement with technomoral change. It argues that this engagement does not just take the form of overt deliberation. It shows in more modest ways as reflection-in-action, an experimental process in which new technology is fitted into existing practices. In this process challenged values are re-articulated in pragmatic solutions to the problem of working with new technology. This art of working with technology is also modest in the (...) sense that it is not oriented to shaping one’s own subjectivity in relation to technology. It emanates from human existence as relational and aims at securing good relationships. The argument will be developed in relation to a case study of the ways in which homecare workers engaged with the value of privacy, challenged by tele-monitoring technology that was newly introduced into their work. (shrink)

A panel held at the International Conference on Information Systems, December 5–7, 1993, addressed the importance and ethicality of several issues relating to ethics and information technology use. The substance of the debate and results of audience votes on the issues are presented in this paper as a means of initiating a broader debate on the issues, for it is with debate that we reach a group consensus on acceptable behavior and practice. With consensus, we can begin to develop codes (...) and policies that are feasible and practical for ethical computer use.Specific dilemmas debated involved the issues of privacy and ownership, including the ethicality of using company resources for personal use and monitoring compliance to company policies about computer use. In general, we found little consensus about ethicality of any of the types of conduct, although we found a high degree of consensus that the debated issues were important and should continue to be discussed. The final question concerned policies and codes. While policies and codes were believed to be necessary, they were also perceived as ineffective. Several suggestions for practical action to enhance the efficacy of ethical codes are presented. (shrink)

Advances in technology are bringing greater insight into the mind, raising a host of privacy concerns. However, the basic psychological mechanisms underlying the perception of privacy violations are poorly understood. Here, we explore the relation between the perception of privacy violations and access to information related to one’s “self.” In two studies using demographically diverse samples, we find that privacy violations resulting from various monitoring technologies are mediated by the extent to which the monitoring is (...) thought to provide access to self-relevant information, and generally neuromonitoring did not rate among the more invasive monitoring types. However, brain monitoring was judged to be more of a privacy violation when described as providing access to self-relevant information than when no such access was possible, and control participants did not judge the invasiveness of neuromonitoring any differently than those told it provided no access to self-relevant information. (shrink)

Recent advances in wireless technologies have led to the development of intelligent, in-vehicle safety applications designed to share information about the actions of nearby vehicles, potential road hazards, and ultimately predict dangerous scenarios or imminent collisions. These vehicle safety communication (VSC) technologies rely on the creation of autonomous, self-organizing, wireless communication networks connecting vehicles with roadside infrastructure and with each other. As the technical standards and communication protocols for VSC technologies are still being developed, certain ethical implications (...) of these new information technologies emerge: Coupled with the predicted safety benefits of VSC applications is a potential rise in the ability to surveil a driver engaging in her everyday activities on the public roads. This paper will explore how the introduction of VSC technologies might disrupt the “contextual integrity” of personal information flows in the context of highway travel and threaten one’s “privacy in public.” Since VSC technologies and their related protocols and standards are still in the developmental stage, the paper will conclude by revealing how close attention to the ethical implications of the remaining design decisions can inform and guide designers of VSC technologies to create innovate safety applications that increase public safety, but without compromising the value of one’s privacy in public. (shrink)

While the balance between individual privacy and government monitoring or corporate surveillance has been a frequent topic across numerous disciplines, the issue of privacy within the family has been largely ignored in recent privacy debates. Yet privacy intrusions between parents and children or between adult partners or spouses can be just as profound as those found in the more “public spheres” of life. Popular access to increasingly sophisticated forms of electronic surveillance technologies has altered the (...) dynamics of family relationships. Monitoring, mediated and facilitated by practices of both covert and overt electronic surveillance, has changed the nature of privacy within the family. Parents are tracking children via GPS-enabled cell phone tracking software and are monitoring the Internet use of family members. Parents, siblings, and children are also posting information about their family members online, often without consent, and are creating social media profiles for others online. Prior scholarly work in philosophy and law has primarily addressed the privacy of children from third parties, usually commercial entities, and in the context of making medical decisions. Less attention has been directed at exploring a more general right of privacy of one family member against parents, siblings, children, or spouses. In this article, we do just that. We consider several moral rules that determine appropriate privacy boundaries within the family. More specifically, we will consider when overt or covert surveillance of a child, spouse, or partner by an adult family member is morally permitted. (shrink)

Orwell's novel Nineteen Eighty-Four and Huxley's novel Brave New World have often been thought prophetic commentaries on economic, political, and social matters. I argue, with particular reference to the supposed applicability of these novels to issues of technology and privacy, that the novels are best understood as literary works of art, rather than as social science or commentary, and that when so viewed Orwell's novel in particular reflects a dissatisfaction with everyday life and a nostalgia for Romantic values.

Spurred by a confluence of factors, most notably the decreasing cost of high-throughput technologies and advances in information technologies, a number of population research initiatives have emerged in recent years. These include large-scale, internationally collaborative genomic projects and biobanks, the latter of which can be defined as an organized collection of human biological material and associated data stored for one or more research purposes. Biobanks are a key emerging research infrastructure, and those established as prospective research resources comprising (...) biospecimens and data from many participants are viewed as particularly promising drivers of biomedical progress. Such biobanks, particularly those publicly funded and set up to promote the public interest, have expanded across the globe in recent years. (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)

In this paper, I will examine John Smeaton’s contribution to the vis viva controversy in Britain, focusing on how the hybridization of science, technology, and industry helped to establish vis viva, or mechanic power, as a measure of motive force. Smeaton, embodying the ‘hybrid expert’ who combined theoretical knowledge and practical knowhow, demonstrated that the notion of vis viva possessed a greater explanatory power than momentum, because it could be used to explain the difference in efficiency between overshot and undershot (...) waterwheels. Smeaton’s conclusions were correct since waterwheel efficiency was already measured in terms that were proportional to vis viva, not momentum, as a result of the industrial applications of waterwheel technology, which favored measuring efficiency by the product of mass and vertical displacement. Toward the end of the eighteenth century, the loss of motive force in the inelastic collision driving the undershot wheel began to be seen as equivalent to the expenditure of labor in the manufacture of commodities, further underlining how strictly scientific conclusions about motive force could have their origin in industrial practices. (shrink)

The goal of the book is to present the latest research on the new challenges of data technologies. It will offer an overview of the social, ethical and legal problems posed by group profiling, big data and predictive analysis and of the different approaches and methods that can be used to address them. In doing so, it will help the reader to gain a better grasp of the ethical and legal conundrums posed by group profiling. The volume first maps (...) the current and emerging uses of new data technologies and clarifies the promises and dangers of group profiling in real life situations. It then balances this with an analysis of how far the current legal paradigm grants group rights to privacy and data protection, and discusses possible routes to addressing these problems. Finally, an afterword gathers the conclusions reached by the different authors and discuss future perspectives on regulating new data technologies. (shrink)

On January 25, 2013, theFederal Registerpublished the Department of Health and Human Services omnibus amendments to the Health Insurance Portability and Accountability Act Privacy, Security, Enforcement, and Breach Notification Rules. These modifications also include the final versions of the HIPAA regulation amendments mandated by the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act. Although the amended rules were effective on March 26, 2013, covered entities and their business associates have a compliance date (...) of September 23, 2013.It has been 10 years since the April 14, 2003 compliance date for the original HIPAA Privacy Rule. Despite HHS’ clarification of some issues by posting answers to frequently asked questions, there have been no significant amendments to the Privacy Rule since 2003. (shrink)

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities (IDD) related to their information privacy when using information technology (IT). Six persons with IDD were recruited to participate to a series of 3 semistructured focus groups. Data were analyzed following a hybrid thematic analysis approach. Only 2 participants reported using IT every day. However, they all perceived IT use benefits, such as an increased autonomy. Participants demonstrated awareness of privacy concerns, but (...) not in situations involving the use of technology; their awareness is not transferred to the abstract context of IT use. Privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to understand how their personal information was used. Most protection mechanisms and tools reported were those suggested and implemented by caregivers and close relatives who had a great influence on the participants’ attitudes and behaviors toward IT and privacy. Our findings suggest that when using IT, persons with IDD often experience the consequences of a trade-off between autonomy and privacy. Further research and action is needed to support persons with IDD to understand and balance the benefits of IT use and the inherent threats to information privacy. (shrink)

In recent years there has been concern among law enforcement and national security organizations about the use of “anonymous” prepaid mobile phone service and its purported role in supporting criminal and terrorist activities. As a result, a number of countries have implemented registration requirements for such service. Privacy rights advocates oppose such regulatory measures, arguing that there is little practical value in attempting to register prepaid mobile devices, and the issue raises important questions about a citizen's entitlement to anonymity (...) in the ownership of a networked communications device. This article provides an overview of the issue and presents findings drawn from a recent study on prepaid mobile phone regulation in the Organisation for Economic Co-operation and Development countries. The article concludes by suggesting that there are significant problems with the claim that mandatory registration of prepaid mobile phone service is a necessary or an effective regulatory course of action. (shrink)

In discussions of health reform, the increased use of health information technology is a common element of nearly every serious proposal on the table. Health IT includes electronic health records kept by providers, personal health records offered by health insurance plans or owned by consumers, and electronic health information exchanges. Although health reform initiatives being discussed contain little detail regarding health IT, in general they promote health IT to facilitate the electronic sharing of health information to improve individual and population (...) health. During the 2008 presidential campaign, the health care proposals of both President Obama and Senator McCain discussed health IT. President Obama’s proposal invests $50 billion over the next five years to promote the adoption of health IT with privacy safeguards. Senator McCain’s plan also encouraged the adoption of health IT, with an emphasis on coordination. (shrink)

In the early 1970s, Congress considered enacting comprehensive privacy legislation, but it was unable to do so. In 1974, it passed the Privacy Act, applicable only to information in the possession of the federal government. In the intervening years, other information privacy laws enacted by Congress, such as the Health Insurance Portability and Accountability Act, have been weak and sector specific. With the explosion of information technology and the growing concerns about an absence of effective federal (...) class='Hi'>privacy laws, the legal focus has shifted to the states. Signaling a new direction in state data privacy and consumer protection law, the California Consumer Privacy Act establishes important rights and protections for California residents with regard to the collection, use, disclosure, and sale of their personal information. The CCPA is certain to spur similar legislation and to affect national and international businesses that collect data from California's residents. Understanding the new law is important for all data‐driven industries, including health care. (shrink)

Ultimately, this affects the natural interplay between privacy, personal identity and identification. This book investigates that interplay from a systemic, socio-technical perspective by combining research from the social and computer sciences. It sheds light on the basic functions of privacy, their relation to identity, and how they alter with digital identification practices. The analysis reveals a general privacy control dilemma of (digital) identification shaped by several interrelated socio-political, economic and technical factors. Uncontrolled increases in the identification modalities (...) inherent to digital technology reinforce this dilemma and benefit surveillance practices, thereby complicating the detection of privacy risks and the creation of appropriate safeguards. Easing this problem requires a novel approach to privacy impact assessment (PIA), and this book proposes an alternative PIA framework which, at its core, comprises a basic typology of (personally and technically) identifiable information. This approach contributes to the theoretical and practical understanding of privacy impacts and thus, to the development of more effective protection standards. This book will be of much interest to students and scholars of critical security studies, surveillance studies, computer and information science, science and technology studies, and politics. (shrink)

We argue that nano-technology in the form of invisible tags, sensors, and Radio Frequency Identity Chips (RFIDs) will give rise to privacy issues that are in two ways different from the traditional privacy issues of the last decades. One, they will not exclusively revolve around the idea of centralization of surveillance and concentration of power, as the metaphor of the Panopticon suggests, but will be about constant observation at decentralized levels. Two, privacy concerns may not exclusively be (...) about constraining information flows but also about designing of materials and nano-artifacts such as chips and tags. We begin by presenting a framework for structuring the current debates on privacy, and then present our arguments. (shrink)

Analyses of the role of technological development in agriculture are central to an understanding of social change in agri-food systems. The objective of this paper is to contribute to the formation of a broader perspective of how farmers are positioning themselves with respect to controversial agricultural technologies through an empirical analysis of Washington State farmers’ willingness or unwillingness to try Genetically Modified Organisms (GMOs) technology on their farms. The use of this type of biotechnology in farming has been criticized (...) for its potential harmful effects on natural environments and socio-cultural systems, while proponents highlight the possibilities for increasing production with minimal use of other inputs. An analysis of the extent of farmers’ expressed willingness to use GMOs provides an opportunity to better understand how their diverse thoughts about controversial agricultural technologies are shaped not only by their own experiences but also by social context. The present study does this by analyzing data from a farm survey conducted on a random sample of farmers from across Washington State. The results show that the production practices farmers utilize and the market strategies they employ may be at least as useful as farmers’ socio-economic characteristics in explaining what types of farmers appear to be more or less interested in potentially using this technology. Furthermore, the relationship between level of formal education and willingness to use GMOs is not straightforward. It may hide differences between farmers with respect to where and how they received their formal education as well as the type(s) of knowledge they gained. It is argued that future research should recognize the diversity that exists in farmers’ interests vis-á-vis particular technologies and should also explore how these interests are shaped by farmers’ past and present social networks and life experiences. (shrink)

Scientists and clinicians are starting to translate genomic discoveries from research labs to the clinical setting. In the process, big data genomic technologies are both a risk to individual privacy and a benefit to personalized medicine. There is an opportunity to address the social and ethical demands of various stakeholders and shape the adoption of diagnostic genome technologies. We discuss ethical and practical issues associated with the networking of genomics by comparing how the European Union and North (...) America understand and practice notions of privacy and consent in research. An overview of international policy suggests the embedding of genomics within digital networks and the Internet creates conditions that challenge the management of privacy and consent in the age of big data. The risks of re-identification, informational harms, and data security vulnerabilities are issues that need to be better addressed in the clinical setting to reconcile the unpredictable pathway of research and practice in the networked information society. (shrink)

Profiling technologies are the facilitating force behind the vision of Ambient Intelligence in which everyday devices are connected and embedded with all kinds of smart characteristics enabling them to take decisions in order to serve our preferences without us being aware of it. These technological practices have considerable impact on the process by which our personhood takes shape and pose threats like discrimination and normalisation. The legal response to these developments should move away from a focus on entitlements to (...) personal data, towards making transparent and controlling the profiling process by which knowledge is produced from these data. The tendency in intellectual property law to commodify information embedded in software and profiles could counteract this shift to transparency and control. These rights obstruct the access and contestation of the design of the code that impacts one’s personhood. This triggers a political discussion about the public nature of this code and forces us to rethink the relations between property, privacy and personhood in the digital age. (shrink)

There are a host of data privacy decisions we must make every day – and it is exceedingly difficult, if not impossible, for us to make meaningful decisions about all of them. In this thesis, I define, conceptualize, interrogate, and design for value-centered privacy decision making – that is, decisions that are focused on who we are and what we value – as a means of respecting and promoting user autonomy. To achieve this, this work utilizes philosophical theory (...) to understand value-centered privacy decisions and translates this theory into a system that promotes such decisions. In summary, this work has two major contributions. Firstly, I conceptualize and define value-centered privacy decision-making using a value-centered theory of autonomy. I explore how we can create the space for value-centered privacy decisions by applying the Four-Dimensional Theory of Self Governance (4DT). I first conceptualize privacy decisions in terms of these four dimensions – self-definition, self-realization, self-unification, and self-constitution – and explore existing data privacy challenges through this lens. In particular, I conceptualize notice fatigue in terms self-realization, self-unification, and self-constitution; a lack of relevant privacy controls in terms of self-realization and self-unification; and nudges in terms of self-realization and self-unification. I then present and discuss results from a mixed-methods investigation into how values are involved in privacy decisions – in particular, app choice. We found that they were related in a highly individualized, context specific manner, observing different values that were more relevant based on the app in question. This suggests that the value-privacy relationship is largely informed by individual preferences and understandings of values. However, the values of Use, Control, and Community were quite prevalent, with Use and Control in particular spanning contexts and individual participants. They were also frequently perceived as in conflict with each other. This suggests that these three values are the most relevant to consider when designing for value-centered privacy decisions. The participants’ experiences can also be explained using 4DT, providing empirical support for our conceptualization of value centered privacy. However, the study results also provide insights into how existing systems – such as surveillance capitalism and the attention economy – frustrate value centered privacy decisions. Secondly, I use the 4DT-based understanding of value-centered privacy decisions to establish the usability and effectiveness of the value-centered approach, designing a privacy assistant to help users make app choices that are in more accordance with their personal values. To inform the design of a smartphone assistant that creates this space for users, I examine an existing technology – personalized privacy assistants (PPAs) – using the 4DT lens. Using insights from this examination, I propose a value-centered, smartphone privacy assistant (VcPA) to help users make more value-centered decisions at one privacy decision point: smartphone app choices. This VcPA consists of three features: selective notices, exploratory notices, and a “suggest alternative apps” feature. I then present the results from testing a prototype VcPA system with users, serving as a proof-of concept that a value-centered privacy assistant, designed using privacy preferences and values, could help users when making privacy decisions such as choosing apps. In particular, we found that the VcPA prototype helped users download value-consistent apps, with the “suggest alternatives” feature especially well-received. We also identified places where the VcPA could be improved – for example, profiles could be improved by being made more customizable; VcPA notices could be made easier to understand; and the “suggest alternatives” feature could be more streamlined. This thesis lays the groundwork for future researchers to design systems that promote value-centered privacy decisions. To guide this future work, I lastly present prospective research avenues to advance the value-centered approach to data privacy decision-making. In particular, I discuss limitations of the studies in this work, including engagement with a wider range of demographic groups; touch upon how the identified VcPA improvements, such as improved VcPA profiles, might be accomplished; briefly explore the possibility of applying the value-centered understanding to other privacy contexts; and consider how both system-wide regulation and individual autonomy enhancing interventions, such as the VcPA, can empower us to shape a technological future based on our values. (shrink)

Background: Surveillance technology such as tag and tracking systems and video surveillance could increase the freedom of movement and consequently autonomy of clients in long-term residential care settings, but is also perceived as an intrusion on autonomy including privacy. Objective: To explore how clients in residential care experience surveillance technology in order to assess how surveillance technology might influence autonomy. Setting: Two long-term residential care facilities: a nursing home for people with dementia and a care facility for people with (...) intellectual disabilities. Methods: Ethnographic field study. Ethical considerations: The boards representing clients and relatives/proxies of the clients were informed of the study and gave their written consent. The clients’ assent was sought through a special information leaflet. At any time clients and/or proxy were given the option to withdraw from the study. The research protocol was also reviewed by a medical ethics committee. Findings: Our findings show a pattern of two themes: (1) coping with new spaces which entailed clients: wandering around, getting lost, being triggered, and retreating to new spaces and (2) resisting the surveillance technology measure because clients feel stigmatized, missed the company, and do not like being “watched.” Conclusion: Client experiences of surveillance technology appear to entail a certain ambivalence. This is in part due to the variety in surveillance technology devices, with each device bringing its own connotations and experiences. But it also lies in the devices’ presupposition of an ideal user, which is at odds with the actual user who is inherently vulnerable. Surveillance technology can contribute to the autonomy of clients in long-term care, but only if it is set in a truly person-centered approach. (shrink)

It is often claimed that if technology becomes too intrusive it can be reigned in by better technologies and laws that restrict access. This article argues through a series of propositions and observations why these standard solutions will invariably fall short, and why civility--and the placed communities out of which civility arises--is our best hope against technological assaults on privacy. The article ends with a brief discussion of what sorts of personal and professional commitments a civil culture entails.

Purpose This study aims to explore how the public perceives the effectiveness of surveillance technology, and how people’s views on privacy and their views on effectiveness are related. Likewise, it looks at the relation between perceptions of effectiveness and opinions on the acceptable cost of surveillance technology. Design/methodology/approach For this study, surveys of Dutch students and their parents were conducted over three consecutive years. Findings A key finding of this paper is that the public does not engage in a (...) trade-off neither with regard to privacy-effectiveness nor with effectiveness-cost, but rather expects all three elements to be achieved simultaneously. This paper also found that the correlation between perceived effectiveness and perceived privacy was stronger for parents than for students. Research limitations/implications Participants for this study were exclusively in The Netherlands. Survey questions on the effectiveness of surveillance technology focused on one type of technology, and on private mobile device use in two scenarios. Social implications The public’s perceptions of the effectiveness of surveillance technology potentially influence its acceptance of the technology, which, in turn, can affect the legitimacy and use of the technology. Originality/value Within the much-discussed privacy-security debate lies a less-heard debate – that of the effectiveness of the surveillance technology in question. The public is one actor in this debate. This study examines the public’s perceptions of this less-heard debate. (shrink)