ABSTRACT:The oft-cited privacy paradox is the perceived disconnect between individuals’ stated privacy expectations, as captured in surveys, and consumer market behavior in going online: individuals purport to value privacy yet still disclose information to firms. The goal of this paper is to empirically examine the conceptualization of privacy postdisclosure assumed in the privacy paradox. Contrary to the privacy paradox, the results here suggest consumers retain strong privacy expectations even after disclosing (...) information. Privacy violations are valued akin to security violations in creating distrust in firms and in consumer willingness to engage with firms. This paper broadens the scope of corporate responsibility to suggest firms have a positive obligation to identify reasonable expectations of privacy of consumers. In addition, research perpetuating the privacy paradox, through the mistaken framing of disclosure as proof of anti-privacy behavior, gives license to firms to act contrary to the interests of consumers. (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)

Personal data use is increasingly permeating our everyday life. Informed consent for personal data use is a central instrument for ensuring the protection of personal data. However, current informed consent practices often fail to actually inform data subjects about the use of personal data. This article presents the results of a requirements analysis for informed consent from both a legal and usability perspective, considering the application context of educational assessment. The requirements analysis is based on European Union law and a (...) review of current practices. As the main outcome, the article presents a blueprint which will be the basis for the development of an informed consent template that supports data controllers in establishing an effective and efficient informed consent form. Because the blueprint, and subsequently, the template, distinguishes between legal and usability requirements, it also provides the basis for the mapping of legal requirements in other contexts. (shrink)

The article examines the situation associated with the spread of social networks, which brought not only new communication opportunities, but also the risks of blurring the boundaries between privacy and publicity. People voluntarily share personal data in exchange for public acceptance. This information is recorded and studied by various government and commercial institutions. The danger to information privacy as a right to control access to personal information is aggravated by the peculiarities of online communication, which is characterized by (...) “context collapse”: the merging of different audiences with different norms and values. Content posted on social media is searchable beyond a specific point in time and situation. If offline communication involves a foreseeable number of interlocutors, there is an “invisible audience” on social networks, which leads to information asymmetry. However, despite the fact that most users are aware of the potential dangers of privacy breaches, they share personal information on social networks. This phenomenon is called the privacy paradox. The reasons for this behavior are a lack of technical and social skills, a reluctance to spend time and energy on measures to minimize risks, a desire to have wide social connections and skepticism about the effectiveness of the efforts being made. The behavior of users on social networks is influenced primarily by factors such as age and education. The most concerned about the preservation of privacy are young people and middle-aged people, as they have to manage the most complex social relations. (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)

This article concerns the nature and limits of individuals’ rights to privacy over information that they have made public. For some, even suggesting that an individual can have a right to privacy over such information may seem paradoxical. First, one has no right to privacy over information that was never private to begin with. Second, insofar as one makes once-private information public – whether intentionally or unintentionally – one waives one’s right to privacy to that information. (...) In this article, however, we suggest the moral situation is more complicated than this. Rather, we argue that there is a class of public information – namely, once-private information that individuals have made public unintentionally – which remains within the scope of an individuals’ right to privacy, even when it has passed into the public domain. Significantly, this class includes any information rights-holders were unaware could be inferred from information they have made public and which they would not otherwise have wanted to be in the public domain. As we show, as well as clarifying several everyday dilemmas with regards to individuals’ privacy rights, this finding has elucidates a number of problems in the ethics of Big Data. (shrink)

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 “privacy paradox” refers to the discrepancy between the concern individuals express for their privacy and the apparently low value they actually assign to it when they readily trade personal information for low-value goods online. In this paper, I argue that the privacy paradox masks a more important paradox: the self-management model of privacy embedded in notice-and-consent pages on websites and other, analogous practices can be readily shown to underprotect privacy, even in (...) the economic terms favored by its advocates. The real question, then, is why privacy self-management occupies such a prominent position in privacy law and regulation. Borrowing from Foucault’s late writings, I argue that this failure to protect privacy is also a success in ethical subject formation, as it actively pushes privacy norms and practices in a neoliberal direction. In other words, privacy self-management isn’t about protecting people’s privacy; it’s about inculcating the idea that privacy is an individual, commodified good that can be traded for other market goods. Along the way, the self-management regime forces privacy into the market, obstructs the functioning of other, more social, understandings of privacy, and occludes the various ways that individuals attempt to resist adopting the market-based view of themselves and their privacy. Throughout, I use the analytics practices of Facebook and social networking sites as a sustained case study of the point. (shrink)

The human mind is constituted by inner, subjective, private, first-person conscious experiences that cannot be measured with physical devices or observed from an external, objective, public, third-person perspective. The qualitative, phenomenal nature of conscious experiences also cannot be communicated to others in the form of a message composed of classical bits of information. Because in a classical world everything physical is observable and communicable, it is a daunting task to explain how an empirically unobservable, incommunicable consciousness could have any physical (...) substrates such as neurons composed of biochemical molecules, water, and electrolytes. The challenges encountered by classical physics are exemplified by a number of thought experiments including the inverted qualia argument, the private language argument, the beetle in the box argument and the knowledge argument. These thought experiments, however, do not imply that our consciousness is nonphysical and our introspective conscious testimonies are untrustworthy. The principles of classical physics have been superseded by modern quantum physics, which contains two fundamentally different kinds of physical objects: unobservable quantum state vectors, which define what physically exists, and quantum operators (observables), which define what can physically be observed. Identifying consciousness with the unobservable quantum information contained by quantum physical brain states allows for application of quantum information theorems to resolve possible paradoxes created by the inner privacy of conscious experiences, and explains how the observable brain is constructed by accessible bits of classical information that are bound by Holevo's theorem and extracted from the physically existing quantum brain upon measurement with physical devices. (shrink)

What motivated an absolutist Erastian who rejected religious freedom, defended uniform public worship, and deemed the public expression of disagreement a catalyst for war to endorse a movement known to history as the champion of toleration, no coercion in religion, and separation of church and state? At least three factors motivated Hobbes’s 1651 endorsement of Independency: the Erastianism of Cromwellian Independency, the influence of the politique tradition, and, paradoxically, the contribution of early-modern practices of toleration to maintaining the public sphere’s (...) religious uniformity. The third factor illustrates how a key function of the emerging private sphere in the early-modern period was to protect uniformity, rather than diversity; it also shows that what was novel was not so much the public/private distinction itself, but the separation of two previously conflated dimensions of publicity – visibility and representativeness – that enabled early-modern Europeans to envisage modes of worship out in the open, yet still private. (shrink)

: HIPAA is often described as a privacy rule. It is not. In fact, HIPAA is a disclosure regulation, and it has effectively dismantled the longstanding moral and legal tradition of patient confidentiality. By permitting broad and easy dissemination of patients’ medical information, with no audit trails for most disclosures, it has undermined both medical ethics and the effectiveness of medical care.

The development and application of artificial intelligence (AI) technology has raised many concerns about privacy violations in the public. Thus, privacy-preserving computation technologies (PPCTs) have been developed, and it is expected that these new privacy protection technologies can solve the current privacy problems. By not directly using raw data provided by users, PPCTs claim to protect privacy in a better way than their predecessors. They still have technical limitations, and considerable research has treated PPCTs as (...) a privacy-protecting tool and focused on possible technical improvements. In this article, we argue that PPCTs cannot effectively protect privacy in the narrow sense due to their technical limitations. Moreover, although these shortcomings could be remedied, they still fall into a paradox because their aim is to protect privacy, but they could reveal private information from users. This paradox of privacy protection not only aggravates the social impact arising from AI privacy issues but may also make the current privacy protection lose its meaning, resulting in a situation in which privacy protection is useless. (shrink)

Topics at a Poynter Institute privacy conference in December 1992 ranged from the role and obligations of the journalist to the rights of victims. Journalists' responsibility to fulfill a dual role of truthtelling and minimizing harm to vulnerable people in society framed the discussion. The public' s curiosity and media obsessions with information about victims of sex crimes are the first topics to be explored. Bob Steele of the Poynter Institute sets the stage for the delicate balance. Helen Benedict, (...) author of Virgin or Vamp: How the Press Covers Sex Crimes, suggests some reforms regarding this area of news. Patricia Bowman, a victim's advocate, talks about her experience as the victim of the media and of a celebrated sex crime case. Elinor Brecher of the Miami Herald discusses a particularly vexing assignment she recently faced, and Tom French of the St. Petersburg Times expresses concern for the subjects of sensitive personal stories and recommends trying to inform them about the story and help them cope with the intrusion into their private life. In separate articles, J. T. Johnson of Sartor Associates in San Francisco and Nora Paul of the Poynter Institute offer insights into the paradox of individual privacy and public right/desire to know, particularly as the issues arise in today's information society. Finally, Robert Ellis Smith, publisher of Privacy Journal, outlines ways media can approach privacy issues and still feel they are on safe ground; he recommends self-restraint in place of government restrictions. The general theme of the Poynter Conference is restraint and concern for others' responsible usage of information that has the possibility to harm others. (shrink)

The creation of new search powers in the Canadian Anti-Terrorism Act post-9/11 to make citizens more transparent to state surveillance was less a new phenomenon than an extension of preexisting tendencies to make citizens transparent to the state, so the risks they pose can be efficiently managed. However, 9/11 brought about a shift in the ways in which the Supreme Court of Canada talked about terrorism; terrorism was no longer placed on a continuum of criminal activity but was elevated to (...) a threat to Canadian values as a whole. I argue that, paradoxically, this shift reconnected the Court to earlier discourses about privacy as an essential element of democratic governance and reinvigorated narratives around the importance of the public-private boundary to democratic relationships by situating privacy within narratives informed by social memory. From this perspective, privacy can be conceptualized as a status claim: as citizens, we are entitled to privacy because privacy is the boundary that creates right relationships between citizens and between citizens and the state. This avoids pitting privacy as an individual right against societal interests in transparency because it more fully actualizes Priscilla Regan’s call to theorize the value of privacy as a public good central to liberal democratic governance. This conception also reconnects Alan Westin’s original understanding of privacy as an element of liberal democracy to the sociological research he drew on, enriching the liberal conception of privacy by locating it in the intersubjective communication of cultural actors living in community. (shrink)

This paper argues that if the critics of the currently dominant notice-and-consent model of governing digital data transactions are correct, then they should oppose political reforms of the model. The crux of the argument is as follows: the reasons the critics give for doubting the effectiveness of notice-and-consent in protecting user privacy (namely, ordinary users’ various cognitive deficiencies and the inherent inscrutability of the subject matter) are also reasons for doubting the effectiveness of protecting user privacy through democratic (...) or regulatory means. Furthermore, insofar as attempts to improve the notice-and-consent model through more legislation or regulation would also involve more coercion than the status quo, they should be resisted on normative grounds. So, out of the bad options we have when it comes to protecting digital privacy, it seems – contrary to the majority position advanced in the literature – that we should stick with notice-and-consent. (shrink)

This paper argues that if the critics of the currently dominant notice-and-consent model of governing digital data transactions are correct, then they should oppose political reforms of the model. The crux of the argument is as follows: the reasons the critics give for doubting the effectiveness of notice-and-consent in protecting user privacy (namely, ordinary users’ various cognitive deficiencies and the inherent inscrutability of the subject matter) are also reasons for doubting the effectiveness of protecting user privacy through democratic (...) or regulatory means. Furthermore, insofar as attempts to improve the notice-and-consent model through more legislation or regulation would also involve more coercion than the status quo, they should be resisted on normative grounds. So, out of the bad options we have when it comes to protecting digital privacy, it seems – contrary to the majority position advanced in the literature – that we should stick with notice-and-consent. (shrink)

Despite their differences, the three most prominent accounts of informational privacy on the contemporary scene—the Control Theory, the Limited Access Theory, and the Narrow Ignorance Theory—all hold that an individual’s informational privacy is at least partly a function of a kind of inability of others to know personal facts about her. This common commitment, I argue, renders the accounts vulnerable to compelling counterexamples. I articulate a new account of informational privacy—the Broad Ignorance Theory—that avoids the commitment by (...) rendering an individual’s informational privacy exclusively a function of others’ ignorance ofpersonal facts about her. I then go on to answer four objections to the Broad Ignorance Theory: that it paradoxically renders private what is in the public domain, that it fails to explain the oddity of attributions of informational privacy to individuals unable to control whether others know various personal facts about them, that it conflates informational privacy and secrecy, and that it conflicts with intuitions about informational privacy losses stemming from false or unjustified beliefs. In the final section of the paper I consider the plausibility of expanding the Broad Ignorance Theory into an account of privacy in general. (shrink)

Most readers of the Investigations take skepticism as a target of Wittgenstein’s remarks, something to be refuted by means of a clear grasp of our criteria. Stanley Cavell was the first to challenge that consensual view by reminding us that our criteria are constantly open to skeptical repudiation, hence that privacy is a standing human possibility. In an apparently similar vein, Saul Kripke has argued that a skeptical paradox concerning rules and meaning is the central problem of the (...) Investigations – and one that receives a skeptical solution. Following the orthodoxy, however, Kripke does not take privacy as a real threat but instead reads Wittgenstein as offering an argument against its very possibility. This paper offers a critical assessment of Kripke’s and Cavell’s readings, and concludes by delineating an understanding of our linguistic practices that acknowledges the seriousness of skepticism while avoiding the kind of evasion shared by Kripke and the orthodoxy, enabling us to see agreement and meaning as continual tasks whose failure is imbued with high existential costs. (shrink)

Advancement in internet of things and proliferation in the use of smart devices have raised concerns about the data privacy of online users. This study predicts the consequences of perceived data privacy risks on consumer behaviours in Lagos State, Nigeria using the integrated Entropy-Technique for Order Preference by Similarity to Ideal Solution. We employed Entropy to assign weights to each criterion. Subsequently, responses were systematically ranked to arrive at an inference using TOPSIS. 84.8% agree that any perceived cyber (...) security threat or a breach in their data privacy would stop them from proceeding with the transaction or activity online, or the use of a digital product. Similarly,, agree it is critical that online businesses only ask for customer information that is relevant to the use of the product or service. Thus, the findings indicate that the privacy paradox of enlightened online consumers tends to diminish when they are faced with perceived data privacy and cybersecurity risks. (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)

The article examines the situation associated with the spread of social networks, which brought not only new communication opportunities, but also the risks of blurring the boundaries between privacy and publicity. People voluntarily share personal data in exchange for public acceptance. This information is recorded and studied by various government and commercial institutions. The danger to information privacy as a right to control access to personal information is aggravated by the peculiarities of online communication, which is characterized by (...) “context collapse”: the merging of different audiences with different norms and values. Content posted on social media is searchable beyond a specific point in time and situation. If offline communication involves a foreseeable number of interlocutors, there is an “invisible audience” on social networks, which leads to information asymmetry. However, despite the fact that most users are aware of the potential dangers of privacy breaches, they share personal information on social networks. This phenomenon is called the privacy paradox. The reasons for this behavior are a lack of technical and social skills, a reluctance to spend time and energy on measures to minimize risks, a desire to have wide social connections and skepticism about the effectiveness of the efforts being made. The behavior of users on social networks is influenced primarily by factors such as age and education. The most concerned about the preservation of privacy are young people and middle-aged people, as they have to manage the most complex social relations. (shrink)

Jennifer Johnston’s fiction presents the conditions of Irish culture and society by exploring the separations between interior and exterior realms and past and present temporalities persisting within the insulating privacy of the familial home space. In _The Christmas Tree_ (1981), the home is both haven and prison for Johnston’s heroine. In this paper, I argue that the home—which assumes the form of the individual body and the familial home—is paradoxical. The protagonist leaves 1950s Ireland because of the country’s rigid (...) gender roles in order to pursue an autonomous life as a writer in England, but she is unable to publish her writing within the confines of the patriarchal publishing world. The home of her body becomes paradoxical when she becomes a single mother as an avenue for creativity but is then diagnosed with terminal cancer. She returns to her father’s home to die, which she re-orders and reclaims through the disorder of the uncanny—represented by her non-conformity and illness brought into the patriarchal home. By writing her life story and creating a brief, alternative maternal relationship with her young caretaker, the protagonist confronts her own ambivalence toward her parents, who also represent aspects of oppressive heteronormative gender expectations. (shrink)

This article argues that Iris Murdoch, who was supervised by John Wisdom during her 1947–48 fellowship at Newnham College Cambridge, went on to practice philosophy in a recognizably Wisdomian manner in her earliest paper, “Thinking and Language” (1951). To do so, I first describe how Wisdom understood philosophical perplexity and paradox. One task that linguistic philosophers should take up is to investigate the concrete cases that give paradoxical philosophical statements their sense and to sift the truth they contain from (...) the distortion. I then show how this vision informed his critical reception of Gilbert Ryle's The Concept of Mind as well as his own investigation of the Hidden Stream Paradox. Finally, I trace a similar approach to Murdoch's discussions of a paradox I call the Coarse Net Paradox. Recognizing Murdoch's intellectual inheritance from Wisdom enables us to see a thus‐far overlooked connection between Murdoch and the tradition of linguistic philosophy. (shrink)

This essay adopts three accounts of “the social” to get a clearer picture of why there is a barrier faced by the government when implementing contact tracing mobile applications. In Hong Kong's context, the paradox involves declining trust of the government's protection of data privacy and growing concern about data surveillance since the 2019 social unrest I argue that exploring the idea of sociality is valuable in that it re-reconfigures the datafication of pandemic control by revealing different sets (...) of social relations, particularly the asymmetrical power relation between the government and its people. The refusal to download or use the mobile app also shows that the public has a faith in human agency and human resistance in data-saturated cities. (shrink)

Research on privacy practices in digital environments has oftentimes discovered a paradoxical relationship between users’ discursive appraisal of privacy and their actual practices: the “privacy paradox.” The emergence of this paradox prompts us to conduct ethnography of a health and fitness platform in order to flesh out the structural mechanisms generating this paradox. We provide an ethnographic analysis of surveillance capitalism in action that relates front-end practices empirically to the data economy’s back-end operations to (...) show how this material-semiotic setup elicits users’ desire to become self-determined subjects in a way that makes them amenable as objects of behavioral engineering. We combine different ethnographic methods and materials to specify how different types of values are produced and translated on the investigated platform. The latter offers users the values of self-mastery and social visibility. However, the data generated in this process serve to translate these values into the value of economic amenability and thereupon ultimately into economic profit. What gets lost in translation, though, is the front-end promise of self-mastery. It is these structural mechanisms that generate the privacy paradox in the first place. (shrink)

Biometric technology was once the purview of security, with face recognition and fingerprint scans used for identification and law enforcement. This is no longer the case; biometrics is increasingly used for commercial and civil applications. Due to the widespread diffusion of biometrics, it is important to address the ethical issues inherent to the development and deployment of the technology. This article explores the burgeoning research on biometrics for non-security purposes and the ethical implications for organizations. This will be achieved by (...) reviewing the literature on biometrics and business ethics and drawing from disciplines such as computer ethics to inform a more robust discussion of key themes. Although there are many ethical concerns, privacy is the key issue, with associated themes. These include definitions of privacy, the privacy paradox, informed consent, regulatory frameworks and guidelines, and discrimination. Despite the proliferation of biometric technology, there is little empirical research on applied biometrics and business ethics. As such, there are several avenues for research to improve understanding of the ethical implications of using this technology. (shrink)

This article explores yet another paradox – aside from the privacy paradox – related to the datafication of media: citizens trust least the media they use most It investigates the role that daily life plays in shaping the trust that citizens place in datafied media. The study reveals five sets of heuristics guiding the trust assessments of citizens: characteristics of media organisations, old media standards, context of use and purpose, experiences of datafication and understandings of datafication. The (...) article discusses the use of these heuristics and the value that everyday life holds in assessing trust in datafied media. It concludes that, guided by a partial ‘structure of perception’ and enticed into trusting datafied media in the context of their daily lives, citizens may be highly concerned by the datafication of media but use them nevertheless. (shrink)

This chapter defends an axiological theory of pain according to which pains are bodily episodes that are bad in some way. Section 1 introduces two standard assumptions about pain that the axiological theory constitutively rejects: (i) that pains are essentially tied to consciousness and (ii) that pains are not essentially tied to badness. Section 2 presents the axiological theory by contrast to these and provides a preliminary defense of it. Section 3 introduces the paradox of pain and argues that (...) since the axiological theory takes the location of pain at face value, it needs to grapple with the privacy, self-intimacy and incorrigibility of pain. Sections 4, 5 and 6 explain how the axiological theory may deal with each of these. (shrink)

As users of computer networks have become more active in producing their own electronic records, in the form of transcripts of onlinediscussions, ethicists have attempted to interpret this new situation interms of earlier models of personal data protection. But thistransference results in unprecedented problems for researchers. Thispaper examines some of the central dichotomies and paradoxes in thedebate on research ethics online in the context of the concrete study ofa virtual community that we carried out. We argue that alienation, notprivacy, is (...) the actual core of the ethical problems of virtual communityresearch. While practically everybody is allowed and often welcome tojoin online communities (which undermines the claim to privacy), mostparticipants would agree that members and visitors are not authorized touse, or `harvest,'' or sell the product of the group communication. To dothat, they would be expected to ask for permission preferably before thecontent has been produced, thus granting participants'' right to controltheir own product. This `non-alienation principle'' should be the basisof emergent social conventions in cyberspace. It would apply toresearchers as to anyone else. With certain types of research, wesuggest, cyberspace provides unique opportunities for empoweringsubjects by involving them as contributors in the research project. (shrink)

Recent research suggests an “Internet paradox”—that a communications technology might reduce social involvement and psychological well–being. In this article I examine some of the limitations of current Internet communication, including those of access, medium, presentation, and choice, that bear on the formation and maintenance of social relationships. I also explore issues central to human meaning in a technological culture—those of the history of the self, of individuality, and of human relationships—and suggest that social forces, technological and otherwise, have increasingly (...) eroded our social interconnectedness and even produced psychological fragmentation. Finally, by considering the psychology of privacy, subjectivity, and intimacy, I look at the historical and developmental processes of internalization by which we construct the “virtual interior” of mind. Understanding this link between human meaning and technological culture, in the form and pattern of our virtual interiors, may help us to see opportunities as well as dangers for the growth of our humanity, our ethics, and our spirituality. (shrink)

The issue of identity cards is hotly debated in many countries, but it often seems to be an oddly backward-looking debate that presumes outdated “Orwellian” architectures. In the modern world, surely we should be debating the requirements for national identity management schemes, in which identity cards may or may not be a useful implementation, before we move on to architecture. If so, then, what should a U.K. national identity management scheme for the 21st century look like? Can we assemble a (...) set of requirements understandable to politicians, professionals and the public? We’ve certainly had some difficulty to date. One reason might be that we lack a compelling, narrative vision. As a result, we’re constructing a legacy system that will subvert the rational goals of worthwhile scheme. We’re not aiming high enough. The technology, I will argue, can deliver far more than the politicians, professionals and public imagine: In particular, it can deliver the apparently paradoxical result of more security and more privacy by exploiting smart cards, biometrics and cryptography. In this paper, I will set out a high-level vision of what a forward-looking national identity management and identity “card” scheme should look like: Dr. Who’s psychic paper. Not only is this a simple, clear vision that is familiar to the expert and layperson alike, but it’s a very useful artistic representation of the capabilities of the technology. I will further suggest that a utility implementation of identity infrastructure can deliver the on this vision in a practical way, and that all of the technology needed to create an ID scheme for the future already exists. (shrink)

Philosophers often assume that folk hold pain to be a mental state – to be in pain is to have a certain kind of feeling – and they think this state exhibits the classic Cartesian characteristics of privacy, subjectivity, and incorrigibility. However folk also assign pains (non-brain-based) bodily locations: unlike most other mental states, pains are held to exist in arms, feet, etc. This has led some (e.g. Hill 2005) to talk of the ‘paradox of pain’, whereby the (...) folk notion of pain is inherently conflicted. Recently, several authors have rejected the paradox view, arguing instead that folk hold a univocal, bodily view (i.e. pains are properties of various body parts, not of minds). This paper presents six objections to the bodily view of the folk concept of pain. We then outline a direction for future research – the ‘polyeidic approach’ – whereby the folk notion of pain is held to encompass various divergent (potentially conflicting) strands and we suggest that certain problems surrounding the treatment and communication of pain might be usefully be viewed through the lens of the polyeidic approach. (shrink)

Based on an ethnographic study in a Danish residential care center, this article shows how the interplay of a sensor-floor technology and currently influential values of person-centeredness, privacy, and security in care transforms care work and care interactions between residents and care workers. Based on an understanding of care as realized in a heterogeneous collective of human and nonhuman actors, this article illustrates how new modes of monitoring and interpreting residents’ care needs at a distance arise, and how a (...) new organization of work focusing on quick and responsive care is established. These new care practices lead to conflicts between the values of privacy and security, to ambivalent experiences among care workers of simultaneously increased security and insecurity in work, and, paradoxically, also often to a decentering rather than person-centering of care. Instead of accommodating simultaneous compliance to the values of privacy, security, and person-centeredness, the use of the sensor-floors makes the tensions between these values continuously and loudly present in daily care practices. (shrink)

My argument is that Chalmers’ Zombie fiction and his rigid-designator-argument going back on Kripke seems to come down to a petitio principii. Rather, at the core it appears to be more related to the essential ‘privacy’ of the phenomenal internal perspective. In return for Chalmers I argue that the ‘principle of self-preservation’ of living organisms necessarily implies subjectivity and the emergence of meaning. The comparison with a robot proves instructive. The mode of ‘mere physical’ being is transcended if, in (...) the form of phenomenal perception, meaning appears on the stage of higher animals – a transition explained here as an emergence phenomenon based on the systemic co-operation of perception, evaluation and action (‘percept-eval-act-system’). Some fundamental considerations are added: Those consequences implied by the principle of self-preservation reveal the natural-biological origin of the organism – primarily seeming a more insignificant circumstance – as a momentous fundamental difference (end-in-itself-character, subjectivity, constitution of meaning) compared to technical artefacts (robot). And the emergentist approach indicates the – maybe paradoxical – possibility of a dualism of physical and psychical phenomena in an overall physical system, that is not dualistic at the same time. (shrink)

The paper has two goals. The first is presenting the main results of the recent report Ethics of Connected and Automated Vehicles: recommendations on road safety, privacy, fairness, explainability and responsibility written by the Horizon 2020 European Commission Expert Group to advise on specific ethical issues raised by driverless mobility, of which the author of this paper has been member and rapporteur. The second is presenting some broader ethical and philosophical implications of these recommendations, and using these to contribute (...) to the establishment of Ethics of Transportation as an independent branch of applied ethics. The recent debate on the ethics of Connected and Automated Vehicles presents a paradox and an opportunity. The paradox is the presence of a flourishing debate on the ethics of one very specific transportation technology without ethics of transportation being in itself a well-established academic discipline. The opportunity is that now that a spotlight has been switched on the ethical dimensions of CAVs it may be easier to establish a broader debate on ethics of transportation. While the 20 recommendations of the EU report are grouped in three macro-areas: road safety, data ethics, and responsibility, in this paper they will be grouped according to eight philosophical themes: Responsible Innovation, road justice, road safety, freedom, human control, privacy, data fairness, responsibility. These are proposed as the first topics for a new ethics of transportation. (shrink)

Current approaches to cyber-security are not working. Rather than producing more security, we seem to be facing less and less. The reason for this is a multi-dimensional and multi-faceted security dilemma that extends beyond the state and its interaction with other states. It will be shown how the focus on the state and “its” security crowds out consideration for the security of the individual citizen, with detrimental effects on the security of the whole system. The threat arising from cyberspace to (...) (national) security is presented as possible disruption to a specific way of life, one building on information technologies and critical functions of infrastructures, with relatively little consideration for humans directly. This non-focus on people makes it easier for state actors to militarize cyber-security and (re-)assert their power in cyberspace, thereby overriding the different security needs of human beings in that space. Paradoxically, the use of cyberspace as a tool for national security, both in the dimension of war fighting and the dimension of mass-surveillance, has detrimental effects on the level of cyber-security globally. A solution out of this dilemma is a cyber-security policy that is decidedly anti-vulnerability and at the same time based on strong considerations for privacy and data protection. Such a security would have to be informed by an ethics of the infosphere that is based on the dignity of information related to human beings. (shrink)

The General Data Protection Regulation (GDPR) was introduced in 2018 to harmonize data privacy and security laws across the European Union (EU). It applies to any organization collecting personal data in the EU. To date, service-level consent has been used as a proportionate approach for clinical trials, which implement low-risk, routine, service-wide interventions for which individual consent is considered inappropriate. In the context of public health research, GDPR now requires that individuals have the option to choose whether their data (...) may be used for research, which presents a challenge when consent has been given by the clinical service and not by individual service users. We report here on development of a pragmatic opt-out solution to this consent paradox in the context of a partner notification intervention trial in sexual health clinics in the UK. Our approach supports the individual’s right to withhold their data from trial analysis while routinely offering the same care to all patients. (shrink)

Background: The introduction of healthcare AI to society as well as the clinical setting will improve individual health statuses and increase the possible medical choices. AI can be, however, regarded as a double-edged sword that might cause medically and socially undesirable situations. In this paper, we attempt to predict several negative situations that may be faced by healthcare professionals, patients and citizens in the healthcare setting, and our society as a whole. Discussion: We would argue that physicians abuse healthcare AI (...) through their excessive and dependent use of it, and they will focus only on the AI services in their office and patient medical data and information, and forget to observe the patient in their clinical encounters. In the era of AI introduction, data from the wearable terminal or AI advice will become the primary target of the physician’s interest, and could be regarded as a patient surrogate. Paternalism would be paradoxically resurrected by the introduction of state-of-the-art AI. A physician’s conflict of interest related to AI as a commercial product could strongly influence his or her actions in clinical settings. We also worry that the general public will become uneasy and hypersensitive slaves to information, compulsively and uninterruptedly requesting healthcare information concerning their own health and advice from AI. An AI system capable of expressing proper and timely empathy to suffering patients could deprive healthcare professionals of their roles in terms of hospitality and emotional exchange. Finally, entire societies would soon share and consolidate healthcare sensitive information from all in the general public as part of a totalitarian healthcontrolled society where individual privacy and personal secrets could be neglected. The advent of the healthcontrolled society could lead to the metamorphosis of the concept of privacy itself into something completely different. Conclusion: Although AI which surpasses human healthcare professionals may never appear, hoping for the best and preparing for the worst is the best approach to take. To this end, we present some potential countermeasures including conducting clinical research and social investigations concerning problems surrounding the introduction of AI and developing guidelines for its appropriate use. (shrink)

Biometric technologies are at the forefront of organizational innovation, surveillance, and control. In many instances, the use of physiological and behavioral biometrics enhances individual and organizational performance. However, they also have the potential to hinder human wellbeing. In particular, recent generations of biometrics are capable of extracting deeper insights into human behavior, enabling organizational surveillance practices, but may also constrain individual rights and freedoms. While biometric technologies have been evidenced to infringe upon privacy and lead to discriminatory practices, little (...) research has examined the impact of biometrics on dignity, an important ethical construct related to human wellbeing. In this conceptual paper, we draw from the theory of affordances to identify and delineate six affordances of biometric technologies, categorized into inhibiting and augmenting biometric affordances. We propose a framework in which inhibiting and augmenting biometric affordances may simultaneously support and humiliate dignity. This separation offers a theoretical base for future empirical research to explore the increasingly pervasive relationship between biometric adoption and human dignity. Moreover, we explain six paradoxical tensions across three forms of dignity—inherent, behavioral, and meritocratic—in the proposed framework. Finally, we discuss why firms should be responsible for addressing the tensions across dignity forms when they adopt biometric technologies to balance the trade-off between wealth creation and human wellbeing. This offers guidance for practitioners on how to integrate biometric technologies without hindering human dignity. (shrink)

We explore what it means to promote healthy sexuality for incarcerated women. We report upon the experiences of ten inmates in the Female Central Penitentiary of Santiago, Chile, regarding their sexuality within prison. We used a qualitative, descriptive research approach. Individual and semistructured interviews were conducted with women from different sections of the prison over a 2‐month period. Participants highlighted the site for conjugal visits, the Venusterio, as a place of privacy and sexual expression between couples from outside prison. (...) Motivated by loneliness, need of protection, and desire for affection, participants enacted alternate gender and sexual identities and sexual orientation. Some previously heterosexual women became ‘machos’, women taking on dominant masculine identities. Women found a paradoxical freedom to express a malleable and fluid sexual identity, an identity that might not go outside the prison. Informed by Judith Butler's idea of performativity, we argue that women could enact both different gender and sexual identities in search of satisfying their affective and erotic desires while under the duress of incarceration. The findings suggest a need for a more fluid understanding of gender and sexuality, especially for those midwives and nurses who strive to promote sexual health, not only reproductive health. (shrink)

The war against terrorism enables the implementation of techniques of exception at all stages of judicial proceedings in criminal cases, front the initiation of a lawsuit to the verdict. It thus puts into question the constitutional mechanisms intended for the protection of privacy. The type of incrimination specific w the accusation of terrorism has created a specifically political crime, i.e., the intention to exert art inappropriate form of pressure on a government or an international organization. It serves as the (...) means for a preventive attack on any process of class recomposition. We thus are witnessing a suspension of the law, which is paradoxically inscribed within the law and belongs to a new legal or juridical order. This amounts to the end of the twofold dimension of the Western legal system as we have known it, namely, the separation between rule of law within and pure violence on the external level. The present imperial organization knowns no externality pure violence has been reinserted at its heart and now belongs to the rule of law. Hence the State of exception as the form of government of the Empire appears above all to be a transitional phase, a tool in the process of installing a more stable form: dictatorship. The end of the formal separation of powers as well as the legal prerogatives appropriated by the executive branch show that this process is well underway. (shrink)

We discuss what makes a “good” environmental nudge from the policy maker’s point of view. We first delineate what is paternalistic about environmental nudges. We then discuss the effectiveness of nudges, including their paradoxical effects on the targeted behaviour, as well as possible collateral effects on the decision-maker’s wellbeing. We also discuss why the libertarian and ethical aspect of nudges may render them more, and not less, attractive as policy instruments and decision aids. We conclude by discussing accuracy and (...) class='Hi'>privacy concerns of information-based nudges, and with some recommendations for the design of effective and ethical nudges. (shrink)

– Pharmacy sales of over‐the‐counter medicines in the UK represent an economically significant and important mechanism by which customers self‐medicate. Sales are supervised in pharmacies, but this paper seeks to question whether patients' electronic health records – due to be introduced nationally – could be used, ethically, by pharmacists to ensure safe medicines sales., – Using theoretical arguments, three areas of ethical concern are identified and explored in relation to pharmacists' access to EHRs‐consequentialsim, analogies and confidentiality/privacy., – Consequentialist arguments (...) include positive benefits to customer's welfare and control of medicine of abuse, but negative economic healthcare burdens and consequences due to potentially increased or paradoxically, decreased presentation of patients to doctors. Socially accepted analogous practices – credit checks, existing pharmacy access to information and hospital treatment – are then argued to be ethically relevant and supportive of access. Privacy and confidentiality are then considered as reasons not to allow EHR access. A contrasting view is that pharmacy access to EHRs is another form of surveillance and hence the question of pharmacists' assess to EHRs may be answered negatively by empirical research that locates pharmacy customers as expert users and identifies confidentiality and privacy concerns about information technology in healthcare more generally., – This paper offers a unique and valuable contribution to the debate about healthcare professionals' role‐based access to patients' medical records and offers a reflection on the ethical concerns surrounding patient information and the rival concerns of patient qua customer autonomy and safety. (shrink)

These essays by leading scholars illustrate the complexity and range of philosophical issues raised by consideration of law and social justice. The contributors to Law and Social Justice examine such broad foundational issues as instrumentalist versus Kantian conceptions of rights as well as such specific problems as the admissibility or inadmissibility of evidence of causation in toxic tort cases. They consider a variety of subjects, including the implications of deliberative democracy for privacy rights, equality as a principle of distributive (...) justice, the paradox of "moral luck," the treatment of intellectual property in China and its roots in Chinese tradition, and the extent to which initial acquisition of goods yields full property rights. Two special sections at the end of the volume discuss the treatment of law and social justice issues in the work of two philosophers: "Wittgenstein and Legal Theory," on the influence of Wittgenstein's thought on legal philosophy, and a discussion of Jules L. Coleman's The Practice of Principle, which concludes with a contribution, "Facts, Fictions, and the Grounds of Law," by Coleman himself. (shrink)

The academic community in the West tends to be suspicious of Russian philosophy, often relegating it to another category, such as “ideology” or “social thought.” But what is philosophy? There is no simple universal definition, and many thinkers consider it impossible to formulate one. The most credible attempt is nominalistic: philosophy is the practice in which Plato and Aristotle were involved. As Alfred North Whitehead wrote, “The safest general characterization of the European philosophical tradition is that it consists of a (...) series of footnotes to Plato.”If so, then Russian thought needs to be understood as an important part of the Western philosophical heritage, given that it offers perhaps the most elaborate set of footnotes to Plato's most mature and comprehensive dialogues: the Republic and the Laws. The status of ideas in Russian philosophy mirrors Plato's vision of them as ontological and political entities, “laws,” or ideal principles—as distinct from mere epistemic units or tools of cognition. The Platonic tendency to integrate and implement religious, philosophical, and political teachings culminated in twentieth-century Russia. In the Soviet state, perhaps more than anywhere else in history, philosophy became a supreme legal and political institution, acquiring the power of a suprapersonal, universal reason. Hence thought itself, in the moment of its triumph, became a prisoner in the social structures that Soviet ideocracy erected on a philosophical foundation. In discussing Russian philosophy, we inevitably consider the practical application of Platonic conceptions by the Soviet ideocracy to a state in which philosophy was called upon to rule.According to Sergei Averintsev, the emphasis on Platonism in the Russian intellectual tradition is nothing to be proud of; it should rather be lamented and repented. Despite the obvious Platonic preferences of Russian thinkers (from Ivan Kireyevsky to Aleksei Losev), Averintsev asks whether even now we might be able to reorient the tradition toward Aristotle instead—toward a more secular, tolerant, and analytic philosophy of human nature. “If Plato is the first utopian,” Averintsev writes, “Aristotle is the first thinker to look the spirit of utopia right in the eye and overcome it.... Aristotle's technique of thought is more neutral toward religion than is Plato's ecstasy.” Characteristically, the name index to the Palgrave Handbook of Russian Thought contains almost twice as many mentions of Plato as of Aristotle.Each national tradition has its own “strange attractor,” as they say now in complexity theory. English empiricism, French rationalism, German Idealism, American pragmatism... However stereotypical these generalizations are, they help to clarify the nations’ distinctive contributions to philosophy. Where does Russia stand in this row? I think that Caryl Emerson is correct to pinpoint, among the most distinctive features of the Russian intellectual tradition, the striving for “wholeness” (tselostnost’). Many Russian thinkers seem to evade definitive and particular “isms,” preferring to find ways of complementing (and thus diluting) those that are on offer. Faced with the claims for rationalism, for example, the Russian response tends to be that true rationality is or should be coupled with fullness of feeling. The characteristic Russian “ism” is at best “holism,” at worst “totalitarianism,” and is usually directed against Western thought. Kireyevsky declares: There [in the West] is a bifurcation [razdvoenie] of the spirit, a bifurcation of thoughts, a bifurcation of the sciences, a bifurcation of the state, a bifurcation of estates, a bifurcation of society, a bifurcation of family rights and duties, a bifurcation of morality and the heart.... In Russia, on the contrary, there is a predominant tendency toward the wholeness of the inner and the outer, of public and moral being.Vladimir Solovyov held that the goal of all knowledge was to comprehend “total unity” and to overcome all kinds of unilateralism, which he referred to as “abstract elements” (otvlechennye nachala). These one-sided elements included Realism, rationalism, empiricism, and positivism, all of which had been advanced by Western philosophical movements.Reading the Handbook, I was struck by how steadily, from one thinker to another, the concept of “unity” is reiterated in various synonyms and contexts: “all-unity,” “wholeness,” “totality,” “integrity,” “edinstvo,” “tsel'nost,’” “tselostnost,” “sobornost,” and so forth. Russian thinkers endeavor not to create something original and special but to unify everything that has already been done and known. Consider opponents, like the Slavophiles and Westernizers; take Petr Chaadaev and Vissarion Belinsky, Kireyevsky and Alexander Herzen, Dostoevsky and Solovyov—all are united by this “super-idea,” proclaiming its embodiment to be the all-embracing vocation of the Russian people. At the same time, they sharply reject all “private principles” and “trashy certainty” (Belinsky's driannaia opredelennost’)—anything that restricts and divides individuals or nations. All these forms of privacy and particularity must be overcome on the way to a universal whole that is even greater in scale than Western Catholicism. According to this logic of totality, we would be better off left with nothing than to be content with the particular and the limited. The first original Russian thinker, Chaadaev (1794–1856), makes the salto mortale of declaring Russia a country that has given nothing to the world, then proclaiming that Russia's destiny is to rise above the rest of the world and resolve all its contradictions. From nothing to everything: such are the philosophical foundations for the totalitarian aspiration of Russian thought, which eventually expressed itself in the revolutionary movements and communist experiments of the twentieth century.As is well known, Russian literature is considered in the West a far more powerful and original expression of philosophical ideas than Russian philosophy as such. Characteristically, then, almost half of the Handbook, its entire second part, is devoted to the dialogue of Russian philosophy with literature and art. As M. N. Forster remarks in the Handbook's concluding essay: “It is natural to wonder why this striking asymmetry between relatively modest achievements in pure philosophy and spectacularly high achievements in literature came about.” To the literary focus of Russian philosophy, we can add a political focus. At least a third of part one of the Handbook is devoted to Russian political and revolutionary philosophy, to Lenin and other Marxists, to Ivan Ilyin, and so on. In this context, both literature and politics assumed philosophical dimensions, often overshadowing philosophy itself.Bertrand Russell lamented that the system of philosophical categories in the West featured mostly nouns (being, consciousness, idea, matter, substance, and so forth), omitting adjectives, verbs, prefixes, and other parts of speech. This criticism should be applied to the category philosophy itself. Why the noun philosophy rather than the adjective philosophical, which can be applied to many areas of activity and creativity, including literature and politics?In Russian intellectual history, the philosophical, rather than philosophy, is the predominant category. The state, ideology, economics, politics and geopolitics, literature, art, warfare, space exploration—all these spheres in Russia and the USSR have been and remain abundantly philosophical, subordinated to certain philosophical tasks, though philosophy as such has never been as developed and sophisticated as in the West. As a discipline, Western philosophy “outsourced” itself to Russian disciples, leaving it to Dostoevsky and Tolstoy, Lenin and Trotsky, to test in literary and political practices a host of Western philosophical ideas, from those of Plato, Rousseau, and Hegel to those of Feuerbach, Marx, and Nietzsche.Likewise, the verb to philosophize is used in ways unusual and awkward in the West. “It is characteristic of the Russian people to philosophize [filosofstvovat'],” as Nikolai Berdyaev observed: “An illiterate Russian peasant likes to pose questions of a philosophical nature—about the meaning of life, about God, about eternal life, about evil and untruth, about how to realize the Kingdom of God.” The philosophical and philosophizing, as attributes and actions of the state and society, overpowered philosophy as a noun—as an academic discipline, if you will. Russian philosophy has had a very modest impact on the West, but the impact of the philosophical has been immense. Nineteenth-century Russian literature influenced Western culture with its philosophical interrogations and existential dilemmas, just as, in the twentieth century, the USSR influenced the West with the philosophical ideas (Marxism, materialism, dialectics, collectivism, socialism, communism) that determined Soviet ideology, politics, and economics.In the USSR of the 1920 and 1930s, for instance, philosophy as an independent academic subject was in a subdued position, as a servant of party ideology. But, meanwhile, the sphere of the philosophical spread to such distant domains as theater (Stanislavsky), physiology (Pavlov), and agriculture (Michurin), with all such activities glorified and sponsored by the state as “philosophically correct”—as faithful to “materialism” and “Realism.” Paradoxically, in the quintessentially philosophical state that was the USSR, the state of philosophy, with the repression of all independent thought and thinkers, was miserable. The fateful and often disastrous originality of Russian philosophy consisted precisely in its dissemination to other areas, in an act of kenosis or self-transcendence that can be viewed both as an aggressive philosophical appropriation of politics, economics, ideology, and literature—and as philosophy's sacrificial devotion to the world beyond its professional boundaries.So there are three features that make Russian thought relevant and dangerous: its Platonic utopian aspiration; its spirit of totality; and its tendency to transcend the boundaries of academic philosophy and to philosophize society, politics, and life in general. Russian philosophy has not been as good at explaining the world as at changing it, sometimes ethically and poetically, sometimes violently and aggressively. Teachers and students of Russian culture should be deeply motivated to draw more attention to the philosophical in Russia and to raise its status in the Western academy. In my view, we would do better service to Russian philosophy if we are frank enough to qualify it as dangerous, sometimes very toxic and addictive, fraught with totalistic tendencies. This philosophy is the voice of the “underground,” both in the Dostoevskian and Leninist senses.At the same time, however, the antidotes concocted in the Russian metaphysical laboratory are of enormous value: the Russian versions of personalism, existentialism, secular and religious liberalism, neorationalism, culturology, conceptualism, and postmodernism. These movements, which counteract totalization, need to be studied precisely because they were cooked up and tested under the same extreme conditions in which the most dangerous intellectual poisons have been produced. (shrink)

BackgroundCarefully planned research is critical to developing policies and interventions that counter physical, psychological and social challenges faced by young people living with HIV/aids, without increasing burdens. Such studies, however, must navigate a ‘vulnerability paradox’, since including potentially vulnerable groups also risks unintentionally worsening their situation. Through embedded social science research, linked to a cohort study involving Adolescents Living with HIV/aids (ALH) in Kenya, we develop an account of researchers’ responsibilities towards young people, incorporating concepts of vulnerability, resilience, and (...) agency as ‘interacting layers’.MethodsUsing a qualitative, iterative approach across three linked data collection phases including interviews, group discussions, observations and a participatory workshop, we explored stakeholders’ perspectives on vulnerability and resilience of young people living with HIV/aids, in relation to home and community, school, health care and health research participation. A total of 62 policy, provider, research, and community-based stakeholders were involved, including 27 ALH participating in a longitudinal cohort study. Data analysis drew on a Framework Analysis approach; ethical analysis adapts Luna’s layered account of vulnerability.ResultsALH experienced forms of vulnerability and resilience in their daily lives in which socioeconomic context, institutional policies, organisational systems and interpersonal relations were key, interrelated influences. Anticipated and experienced forms of stigma and discrimination in schools, health clinics and communities were linked to actions undermining ART adherence, worsening physical and mental health, and poor educational outcomes, indicating cascading forms of vulnerability, resulting in worsened vulnerabilities. Positive inputs within and across sectors could build resilience, improve outcomes, and support positive research experiences.ConclusionsThe most serious forms of vulnerability faced by ALH in the cohort study were related to structural, inter-sectoral influences, unrelated to study participation and underscored by constraints to their agency. Vulnerabilities, including cascading forms, were potentially responsive to policy-based and interpersonal actions. Stakeholder engagement supported cohort design and implementation, building privacy, stakeholder understanding, interpersonal relations and ancillary care policies. Structural forms of vulnerability underscore researchers’ responsibilities to work within multi-sectoral partnerships to plan and implement studies involving ALH, share findings in a timely way and contribute to policies addressing known causes of vulnerabilities. (shrink)

La réussite des plates-formes relationnelles du Web 2.0 doit beaucoup au fait que les personnes prennent des risques avec leur identité en rendant publiques des informations sur elles-mêmes. Aussi, est-il nécessaire de comprendre les ressorts sociaux, culturels et psychologiques de ce phénomène. Car l'exposition de soi ne signifie pas un renoncement au contrôle de son image. Elle témoigne, au contraire, d'une volonté que l'on pourrait presque dire stratégique de gérer et d'agir sur les autres en affichant et en masquant certains (...) traits de son identité. C'est ce paradoxe qui se trouve au coeur des débats sur la privacy dans le Web 2.0 et dont cet article cherche à éclairer quelques aspects à travers la lecture de travaux de recherche récents.The success of Web 2.0 relational platforms owes a lot to people who take risks with their personal identities by making information about themselves public. There is therefore a need to understand the social, cultural and psychological mainsprings of this phenomenon. The exhibition of the self on the Internet does not mean that people are losing control over their image. Rather, it reflects a strategic attempt to manage and influence others. This paradox lies at the heart of Web 2.0 privacy debates, which this paper seeks to shed light on through a reading of recent research work. (shrink)