In this chapter I identify three problems affecting the plausibility of group privacy and argue in favour of their resolution. The first problem concerns the nature of the groups in question. I shall argue that groups are neither discovered nor invented, but designed by the level of abstraction (LoA) at which a specific analysis of a social system is developed. Their design is therefore justified insofar as the purpose, guiding the choice of the LoA, is justified. This should (...) remove the objection that groups cannot have a right to privacy because groups are mere artefacts (there are no groups, only individuals) or that, even if there are groups, it is too difficult to deal with them. The second problem concerns the possibility of attributing rights to groups. I shall argue that the same logic of attribution of a right to individuals may be used to attribute a right to a group, provided one modifies the LoA and now treats the whole group itself as an individual. This should remove the objection that, even if groups exist and are manageable, they cannot be treated as holders of rights. The third problem concerns the possibility of attributing a right to privacy to groups. I shall argue that sometimes it is the group and only the group, not its members, that is correctly identified as the correct holder of a right to privacy. This should remove the objection that privacy, as a group right, is a right held not by a group as a group but rather by the group’s members severally. The solutions of the three problems supports the thesis that an interpretation of privacy in terms of a protection of the information that constitutes an individual—both in terms of a single person and in terms of a group—is better suited than other interpretations to make sense of group privacy. (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)

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)

Mature information societies are characterised by mass production of data that provide insight into human behaviour. Analytics has arisen as a practice to make sense of the data trails generated through interactions with networked devices, platforms and organisations. Persistent knowledge describing the behaviours and characteristics of people can be constructed over time, linking individuals into groups or classes of interest to the platform. Analytics allows for a new type of algorithmically assembled group to be formed that does not necessarily (...) align with classes or attributes already protected by privacy and anti-discrimination law or addressed in fairness- and discrimination-aware analytics. Individuals are linked according to offline identifiers and shared behavioural identity tokens, allowing for predictions and decisions to be taken at a group rather than individual level. This article examines the ethical significance of such ad hoc groups in analytics and argues that the privacy interests of algorithmically assembled groups in inviolate personality must be recognised alongside individual privacy rights. Algorithmically grouped individuals have a collective interest in the creation of information about the group, and actions taken on its behalf. Group privacy is proposed as a third interest to balance alongside individual privacy and social, commercial and epistemic benefits when assessing the ethical acceptability of analytics platforms. (shrink)

Luciano Floridi was not the first to discuss the idea of group privacy, but he was perhaps the first to discuss it in relation to the insights derived from big data analytics. He has argued that it is important to investigate the possibility that groups have rights to privacy that are not reducible to the privacy of individuals forming such groups. In this paper, we introduce a distinction between two concepts of group privacy. The (...) first, the “what happens in Vegas stays in Vegas” privacy (in the following: WHVSV privacy), deals with confidential information shared with the member of a group and inaccessible to (all or a specific group of) outsiders. The second, to which we shall refer as inferential privacy, deals with the inferences that can be made about a group of people defined by a feature, or combination thereof, shared by all individuals in the group. We show why we unreservedly agree with Floridi that groups can have a form of privacy that amounts to more than the mere fact of being sets of individuals each of whom has individual privacy; moreover, like Floridi, we find it plausible that at least some groups (those satisfying our definition of type-a groups) may have a right to a species of group privacy (that is, WHVSV privacy) as groups (and not just as individuals who belong to those groups). However, by turning our attention to the context of big data analytics, we show that the relevant, new notion of group privacy is one of inferential privacy. We argue that an absolute right (either of individuals or groups) to inferential privacy is implausible. We also show that many groups generated algorithmically (those satisfying our definition of type-b groups) cannot be right holders as groups (unless they become type-a groups). (shrink)

Must privacy and freedom of expression conflict? To witness recent debates in Britain, you might think so. Anything other than self-regulation by the press is met by howls of anguish from journalists across the political spectrum, to the effect that efforts to protect people’s privacy will threaten press freedom, promote self-censorship and prevent the press from fulfilling its vital function of informing the public and keeping a watchful eye on the activities and antics of the powerful.[Brown, 2009, 13 (...) January]1 Effective protections for privacy, from such a perspective, inevitably pose a threat to democratic government via the constraints that they place on the press. Such concerns with privacy must be taken seriously by anyone who cares about democratic government, and the freedom, equality and wellbeing of individuals. But if it is one thing to say that privacy and freedom of expression cannot always be fully protected, it is another to suppose that protections for the one must always come at the expense of the other. After all, the economics of contemporary politics and journalism would seem to be partly responsible for our difficulties in protecting personal privacy while sustaining robust and informative forms of public discourse. [Moore, 2010, 10 -141]2 Most newspapers are loss-making businesses and the need to reduce those losses and, if possible, to turn a profit, make investigative journalism an increasingly expensive proposition as compared to both “comment” and more or less elevated forms of gossip. At the same time, politics has increasingly become the prerogative of a narrow group of people with access to the large sums of money necessary successfully to compete for high office. In those circumstances, the need for critical scrutiny is as important as it is difficult. Revising our ideas about privacy and its protection cannot alone reduce the tensions between freedom of expression and personal privacy typical of our societies, necessary though such revision may be. Moreover, this paper can only touch on some aspects of the ways in which we need to rethink our interests in privacy, in order adequately to reflect people’s diverse interests in freedom of expression, and the important role of a free press to democratic government. Nonetheless, I hope to suggest ways of thinking about people’s claims to privacy which can be generalised fairly readily, and can help us to think constructively about the nature, causes and solutions to some important social and political problems, even if, in its nature, philosophical analysis rarely tells us what to do. More specifically, this paper argues that people are entitled to keep some true facts about themselves to themselves, should they so wish, as a sign of respect for their moral and political status, and in order to protect themselves from being used as a public example in order to educate or to entertain other people. The “outing” - or non-consensual public disclosure - of people’s health records or status, or their sexual behaviour or orientation is usually unjustified, even when its consequences seem to be beneficial. Indeed, the paper claims, the reasons to reject outing, as inconsistent with democratic commitments to freedom and equality, are reasons to insist on the importance of privacy to freedom of expression. While a free press is of the utmost importance to democratic government, it is not identical with the free expression of individuals and, on occasion, the former may have to be constrained in order to protect the latter. [Barendt, 2007, 231]. Hence, the paper concludes, we should distinguish the claims of individuals to publish reports about their lives – even if this necessarily involves revealing the private lives of others – from journalistic claims to publish information about the sex lives of consenting adults. I will start by briefly situating my argument within a democratic approach to privacy, before using the “outing” of Oliver Sipple to examine people’s claims to privacy and their implications for freedom of expression and of the press. I will be assuming that some forms of privacy are legitimate, in order to focus more closely on the question of what information, if any, people may keep to themselves. (shrink)

Technological advances are bringing new light to privacy issues and changing the reasons for why privacy is important. These advances have changed not only the kind of personal data that is available to be collected, but also how that personal data can be used by those who have access to it. We are particularly concerned with how information about personal attributes inferred from collected data (such as online behaviour), can be used to tailor messages and services to specific (...) individuals or groups. This kind of ‘personalised targeting’ has the potential to influence individuals’ perceptions, attitudes, and choices in unprecedented ways. In this paper, we argue that because it is becoming easier for companies to use collected data for influence, threats to privacy are increasingly also threats to personal autonomy—an individual’s ability to reflect on and decide freely about their values, actions, and behaviour, and to act on those choices.4 While increasing attention is directed to the ethics of how personal data is collected, we make the case that a new ethics of privacy needs to also think more rigorously about how personal data may be used, and its potential impact on personal autonomy. (shrink)

The aim of this study was to gain a deeper understanding of privacy in occupational health services. Data were collected through in-depth theme interviews with occupational health professionals (n=15), employees (n=15) and employers (n=14). Our findings indicate that privacy, in this context, is a complex and multilayered concept, and that companies as well as individual employees have their own core secrets. Co-operation between the three groups proved challenging: occupational health professionals have to consider carefully in which situations and (...) how much they are entitled to release private information on individual employees for the benefit of the whole company. Privacy is thus not an absolute right of an individual, but involves the idea of sharing responsibility. The findings open up useful new perspectives on ethical questions of privacy and on the development of occupational health practices. (shrink)

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities related to their information privacy when using information technology. 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)

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)

Driven by privacy-related fears, users of Online Social Networks may start to reduce their network activities. This trend can have a negative impact on network sustainability and its business value. Nevertheless, very little is understood about the privacy-related concerns of users and the impact of those concerns on identity performance. To close this gap, we take a systematic view of user privacy concerns on such platforms. Based on insights from focus groups and an empirical study with 210 (...) subjects, we find that (i) Organizational Threats and (ii) Social Threats stemming from the user environment constitute two underlying dimensions of the construct Privacy Concerns in Online Social Networks . Using a Structural Equation Model, we examine the impact of the identified dimensions of concern on the Amount, Honesty, and Conscious Control of individual self-disclosure on these sites. We find that users tend to reduce the Amount of information disclosed as a response to their concerns regarding Organizational Threats. Additionally, users become more conscious about the information they reveal as a result of Social Threats. Network providers may want to develop specific mechanisms to alleviate identified user concerns and thereby ensure network sustainability. (shrink)

In this chapter, Macnish and Asgarinia introduce current thinking and debate around issues of privacy as these relate to the media. Starting with controversies over the definition of privacy, they consider what the content of privacy should be and why it is we consider privacy to be valuable. This latter includes the social implications of privacy and the only recently-recognised concept of group privacy, contrasting it with individual privacy, as well as legal (...) implications arising through laws such as the European Union’s General Data Protection Regulation, concerning the collection of personal data and data subjects’ rights. Finally they turn to specific instances of privacy consideration in the media. These include: -/- The use of telephoto lenses to take pictures of celebrities at a distance without those celebrities’ permission (and the related question as to what is a reasonable expectation of privacy when in a public place); -/- Sharing information on social media (and the related question of whether those who share their data on social networking sites care about their privacy), as well as the availability of data online to research, even though that data has not always been posted for the purposes of research; -/- The challenges posed by anonymity online, including the trade-off between free expression and offensive expression; -/- Hacking and the meaning of fishing expeditions as a practice by the media and exploring what, if anything, is wrong with these; -/- The implications of invading the privacy of politicians, both as a defence of democracy and as a threat to democracy. (shrink)

Data analytics and data-driven approaches in Machine Learning are now among the most hailed computing technologies in many industrial domains. One major application is predictive analytics, which is used to predict sensitive attributes, future behavior, or cost, risk and utility functions associated with target groups or individuals based on large sets of behavioral and usage data. This paper stresses the severe ethical and data protection implications of predictive analytics if it is used to predict sensitive information about single individuals or (...) treat individuals differently based on the data many unrelated individuals provided. To tackle these concerns in an applied ethics, first, the paper introduces the concept of “predictive privacy” to formulate an ethical principle protecting individuals and groups against differential treatment based on Machine Learning and Big Data analytics. Secondly, it analyses the typical data processing cycle of predictive systems to provide a step-by-step discussion of ethical implications, locating occurrences of predictive privacy violations. Thirdly, the paper sheds light on what is qualitatively new in the way predictive analytics challenges ethical principles such as human dignity and the (liberal) notion of individual privacy. These new challenges arise when predictive systems transform statistical inferences, which provide knowledge about the cohort of training data donors, into individual predictions, thereby crossing what I call the “prediction gap”. Finally, the paper summarizes that data protection in the age of predictive analytics is a collective matter as we face situations where an individual’s (or group’s) privacy is violated using dataotherindividuals provide about themselves, possibly even anonymously. (shrink)

The concept of a communal type of privacy shared by interconnected social groups has wide applications in the healthcare field, specifically in genetic testing and genetic data privacy (Pyrrho, Cam...

Pyrrho and colleagues (2022) argue that the loss of health privacy can damage democratic values by increasing social polarization, removing individual choice, and limiting self-determination. As a remedy, the authors propose a data-regulation regime that prohibits companies from using such data for discriminatory purposes. Our commentary addresses three issues. First, we point out an additional problematic dimension of excessive health privacy loss, namely, the potential racialization of groups and individuals that it may likely contribute to. Second, we note (...) that, in our view, the authors’ argument for more regulation rests on an invidious comparison between the realistically described status quo and the idealized picture of the imagined regulatory regime that the authors briefly propose. Third, we argue that, despite existing regulations, both private and government actors frequently use private data in ways that lead to ethically problematic outcomes, especially when it comes to racialized communities. (shrink)

Various aspects of the concepts of privacy and confidentiality are discussed in relation to health care information in primary health care settings. In addition, findings are presented from patient and nurse practitioner focus groups held to elicit concerns that these two groups have in relation to privacy and confidentiality in their respective primary care settings. The focus groups were held prior to the implementation of the Health Insurance Portability and Accessibility Act in the USA. Implications for advanced practice (...) registered nurses in primary care practices are provided. (shrink)

Privacy is a relational and relative concept that has been defined in a variety of ways. In this paper we offer a systematic discussion of potentially different notions of privacy. We conclude that privacy as the freedom or immunity from the judgement of others is an extremely useful concept to develop ways in which to understand privacy claims and associated risks. To this end, we develop a framework of principles that explores the interrelations of interests and (...) values for various stakeholders where privacy concerns have risen or are expected to rise. We argue that conflicts between the interests and values of different stakeholders may result in legitimate claims of privacy/transparency being ignored or underrepresented. Central to this analysis is the notion of a stakeholder. We argue that stakeholders are persons or groups with legitimate interests, of intrinsic value, in the procedural and/or substantive aspects of the privacy/transparency claim and subsequent judgements on that basis. Using the principles of access, representation, and power, which flow from our framework of analysis, we show how they can facilitate the identification of potential privacy/transparency risks using examples from the British National Health Service. (shrink)

This study aimed to determine the extent to which the principles of privacy and equality were observed during diagnostic genetic testing according to views held by patients or child patients' parents (n = 106) and by staff (n = 162) from three Finnish university hospitals. The data were collected through a structured questionnaire and analysed using the SAS 8.1 statistical software. In general, the two principles were observed relatively satisfactorily in clinical practice. According to patients/parents, equality in the post-analytic (...) phase and, according to staff, privacy in the pre-analytic phase, involved the greatest ethical problems. The two groups differed in their views concerning pre-analytic privacy. Although there were no major problems regarding the two principles, the differences between the testing phases require further clarification. To enhance privacy protection and equality, professionals need to be given more genetics/ethics training, and patients individual counselling by genetics units staff, giving more consideration to patients' world-view, the purpose of the test and the test result. (shrink)

Human genomic information is invested with enormous power in a scientifically motivated society. Genomic information has the capacity to produce a great deal of good for society. It can help identify and understand the etiology and pathophysiology of disease. In so doing, medicine and science can expand the ability to prevent and ameliorate human malady through genetic testing, treatment, and reproductive counseling.Genomic information can just as powerfully serve less beneficent ends. Information can be used to discover deeply personal attributes of (...) an individual's life. That information can be used to invade a person's private sphere, to alter a person's sense of self- and family identity, and to affect adversely opportunities in education, employment, and insurance. Genomic information can also affect families and ethnic groups that share genetic similarities. (shrink)

In this paper, we present an approach to collaborative multi-disciplinary teaching as a method of integrating ethical reasoning into an applied science curriculum. Bringing together two faculty—one from computer engineering and one from science, technology, and society—to co-teach a two-semester upper-level sequence on holistic problem solving focused on “privacy in a connected world,” we model ethical reasoning as a habit of mind. We argue that this practice of modeling through multi-disciplinary teaching demonstrates for students that ethical reasoning is an (...) intrinsic part of addressing complex sociotechnical problems. Through such modeling, we guide students toward developing ethical reasoning as a habit of mind that is relevant and important in their technical work. Drawing on analysis of student work, we show the evolution of two student groups across two semesters as they learn how to address and integrate ethics into their analysis of sociotechnical problems and solutions. (shrink)

Purpose Privacy has been understood as about one’s own information, information that is not one’s own is not typically considered with regards to an individual’s privacy. This paper aims to draw attention to this issue for conceptualizing privacy when one’s privacy is breached by others’ information. Design/methodology/approach To illustrate the issue that others' information can breach one's own privacy, this paper uses real-world applications of forensic genealogy and recommender systems to motivate the discussion. Findings In (...) both forensic genealogy and recommender systems, the individual’s privacy is breached by information that is not one’s own. The information that breached one’s privacy, by its nature, is beyond the scope of an individual, which is a phenomenon that has already been captured by emerging discussions about group privacy. This paper further argues that the underlying issue reflected by the examples of forensic genealogy is an extreme case even under the consideration of group privacy. This is because, unlike recommender systems that rely on large amounts of data to make inferences about an individual, forensic genealogy exposes one’s identity by using only one other individual’s information. This paper echoes existing discussions that this peculiar situation where others’ information breaches one’s own privacy reveals the problematic nature of conceptualizing privacy relying only on individualistic assumptions. Moreover, this paper suggests a relational perspective as an alternative for theorizing privacy. Originality/value This situation that others’ information breached one’s own privacy calls for an updated understanding of not only privacy but also the relationship between the person and their information. Privacy scholars need to renew their ethical language and vocabularies to properly understand the issue, which recent privacy conceptualizations are already doing (e.g. group privacy). (shrink)

Human genomic information is invested with enormous power in a scientifically motivated society. Genomic information has the capacity to produce a great deal of good for society. It can help identify and understand the etiology and pathophysiology of disease. In so doing, medicine and science can expand the ability to prevent and ameliorate human malady through genetic testing, treatment, and reproductive counseling.Genomic information can just as powerfully serve less beneficent ends. Information can be used to discover deeply personal attributes of (...) an individual's life. That information can be used to invade a person's private sphere, to alter a person's sense of self- and family identity, and to affect adversely opportunities in education, employment, and insurance. Genomic information can also affect families and ethnic groups that share genetic similarities. (shrink)

This book offers a new way to justify privacy based on a theory derived from Buddhist insights. It uses insights obtained from the Buddhist teachings on Non-Self to create an alternative theory of privacy. In doing so, the author first spells out the inherent differences between the Buddhist insights and the beliefs underlying conventional theories of privacy. While Buddhism views the self as existing conventionally through interactions with others, as well as through interrelations with other basic components, (...) non-Buddhist ideas of self are understood as being grounded upon autonomous subjects, commonly understood to be entitled to rights and dignity. In light of this, the book offers ways in which these seemingly disparate concepts can be reconciled, while keeping in mind the need for protecting citizens' privacy in a modern information society. It also argues that the new way of conceptualizing privacy, as presented in this book, would go a long way in helping unravel the difficult concept of group privacy. (shrink)

This paper explores, through empirical research, how values, engineering practices, and technological design decisions shape one another in the development of privacy technologies. We propose the concept of “privacy worlds” to explore the values and design practices of the engineers of one of the world’s most notable privacy technologies: the Tor network. By following Tor’s design and development we show a privacy world emerging—one centered on a construction of privacy understood through the topology of structural (...) power in the Internet backbone. This central “cipher” discourse renders privacy as a problem that can be “solved” through engineering, allowing the translation and representation of different groups of imagined users, adversaries, and technical aspects of the Internet in the language of the system. It also stabilizes a “flattened,” neutralized conception of privacy, risking stripping it of its political and cultural depth. We argue for an enriched empirical focus on design practices in privacy technologies, both as sites where values and material power are shaped, and as a place where the various worlds that will go on to cluster around them—of users, maintainers, and others—are imagined and reconciled. (shrink)

This manuscript reviews the background of Radio Frequency Identification (RFID) as well as the ethical foundations of individual privacy. This includes a historical perspective on personal privacy, a review of the United States Constitutional privacy interpretations, the United Nations Declaration of Human Rights, European Union Regulations, as well as the positions of industry and advocacy groups. A brief review of the information technology ethics literature is also included. The RFID privacy concerns are three-fold: pre-sales activities, sales (...) transaction activities, and post-sales uses. A proposal to address these privacy concerns is detailed, generally based on past philosophical frameworks and specifically on the Fair Information Practices that the Federal Trade Commission has outlined for the electronic marketplace (e-commerce). It is proposed that by application of these Fair Information Practices, the major privacy issues of RFID can be addressed. (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)

A developing area of interest in ethics and in legal studies is privacy protection. This paper focuses on privacy protection in employment, and examines some of the arguments of commentators who seek to limit the information obtained from job candidates and employees. The ethical underpinnings of these restrictions are discussed in terms of how privacy in employment relations can be understood as functioning to provide a context for the maintenance and development of self‐identity, an autonomous self‐concept, the (...) practice of meaningful autonomy, and a pluralistic social order. In the second part of the paper the proposed restrictions are examined in terms of their impact on economic welfare. The latter consideration suggests that HRM and allied professional groupings that unilaterally implemented the critics’ proposals could be deemed to be paternalistic. The potential relevance of legal regulation to resolve this issue for ‘ethical’ HRM professional practice and its significance in the area of genetic discrimination are discussed. (shrink)

A developing area of interest in ethics and in legal studies is privacy protection. This paper focuses on privacy protection in employment, and examines some of the arguments of commentators who seek to limit the information obtained from job candidates and employees. The ethical underpinnings of these restrictions are discussed in terms of how privacy in employment relations can be understood as functioning to provide a context for the maintenance and development of self‐identity, an autonomous self‐concept, the (...) practice of meaningful autonomy, and a pluralistic social order. In the second part of the paper the proposed restrictions are examined in terms of their impact on economic welfare. The latter consideration suggests that HRM and allied professional groupings that unilaterally implemented the critics’ proposals could be deemed to be paternalistic. The potential relevance of legal regulation to resolve this issue for ‘ethical’ HRM professional practice and its significance in the area of genetic discrimination are discussed. (shrink)

A developing area of interest in ethics and in legal studies is privacy protection. This paper focuses on privacy protection in employment, and examines some of the arguments of commentators who seek to limit the information obtained from job candidates and employees. The ethical underpinnings of these restrictions are discussed in terms of how privacy in employment relations can be understood as functioning to provide a context for the maintenance and development of self‐identity, an autonomous self‐concept, the (...) practice of meaningful autonomy, and a pluralistic social order. In the second part of the paper the proposed restrictions are examined in terms of their impact on economic welfare. The latter consideration suggests that HRM and allied professional groupings that unilaterally implemented the critics’ proposals could be deemed to be paternalistic. The potential relevance of legal regulation to resolve this issue for ‘ethical’ HRM professional practice and its significance in the area of genetic discrimination are discussed. (shrink)

This chapter reviews epistemically private items (EPI). A highly influential tradition makes the meaning of a word depend on the nature of the 'idea' associated with it, whilst treating ideas as items before the consciousness of speakers and their hearers, hence as strong candidates for epistemic privacy. Michael Dummett has denied that EPI can play any role in the semantics of the public language. For this view he advances a group of three closely related arguments, which we may (...) call respectively the arguments from Communicability, from Acquisition, and from Manifestation. The immediately obvious candidates for EPI‐affected semantics are expressions which purport to describe sensations, and those standing for properties at least plausibly thought of as powers to produce sensations of certain kinds. Grasp of meaning, once any part is denied to EPI, must consist in the capacity for some kind of publicly accessible behavior. (shrink)

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

The issue of large-scale, population based DNA collections has become a world-wide discussion, which is hoped to bring substantial improvements in medicine. Continuous access to clinical data linked to the genetic samples is very important for some research that aims to find significant association between genes and diseases. This raises ethical issues related to privacy and confidentiality of medical records and the genetic information of the individuals who may be involved in the research. Genetic databases can also raise challenges (...) for the protection of the rights of the social groups, in avoiding potential stigmatization or discrimination. Informed consent of voluntary participants is another important issue in genetic research.We consider whether a person has ethical duties to donate a sample to a database if it will be used for the improvement of the health services to which they have benefited from. The balance between individual's privacy and public health is needed in genetic research. A good database will contribute to the good of both donors and society. (shrink)

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

The vast majority of philosophers and legal theorists who have thought about the issue agree that there is such a thing as a moral right to privacy. However, there is little or no theoretical consensus about the nature of this right. According to reductionists, the right to privacy amounts to nothing more than a cluster of property rights and rights over the person, and therefore plays no autonomous explanatory role in moral theory (Thomson 1975, Davis 1959). Among non-reductionists, (...) there are almost as many accounts of the right to privacy as there are synagogues in the old town of Jerusalem. For one group of non-reductionists (perhaps the majority), the right to privacy is properly understood as a right of control, a form of autonomy. Within this group, some think that the right to privacy is the right to control information about oneself (Westin 1967, Beardsley 1971, Gerstein 1978, Fried 1970, Moore 2003), while others insist that it is the right to control access to oneself (Parker 1974, Scanlon 1975, Rachels 1975, Reiman 1976, Van den Haag 1971). For another group of non-reductionists, the right to privacy is the right to cognitive and/or physical inaccessibility (Gavison 1980, Garrett 1974, Allen 1988). Though these are by far the most widely adopted non-reductionist accounts of the relevant right, they are by no means the only ones currently on offer. There are hybrid accounts according to which the right to privacy is a cluster of various rights of control (Inness 1992) or a cluster of various rights of control and restricted access (DeCew 1997). And according to an influential “information-based” account, the right to privacy 1 is defined as the right that others not possess undocumented personal information about the right-holder (Parent 1983a; 1983b). The purpose of this paper is to bring some order to this theoretical chaos. On my view, none of these accounts of the right to privacy is accurate.. (shrink)

Background Protecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of privacy as well as the situations in the research setting that require privacy protections. The aim of this study was to explore the views of research professionals from Arab countries regarding concepts and scope of privacy that occur in clinical research. Methods We adopted an exploratory qualitative (...) approach by the use of focus group discussions. We recruited individuals involved in research from Egypt and Morocco. We analyzed focus group data via a constant comparison approach, which consisted of close reading of the transcribed interviews followed by coding and then determining themes and subthemes. Results Between August 2016 and July 2018, we conducted nine focus group discussions. Respondents discussed several privacy issues that occurred before the research began ; during research, and after the research. Respondents revealed their perspectives of patients towards privacy in the clinical and research settings and mentioned that patients are more likely to permit access to their privacy in the clinical setting compared with research setting due to the existence of benefits and trust in clinical care. Respondents also recommended training regarding data protections for individuals involved in research. Conclusions Our study shows that research professionals discussed a range of privacy issues that are present during the different stages of research. We recommend 1) development of standards regarding privacy protections during recruitment efforts; 2) additional training for individuals involved in research regarding best practices with data security in secondary research; 3) a quantitative study involving investigators and REC members to determine their knowledge, attitudes and practices regarding privacy issues that occur in research; and 4) a quantitative study involving patients to elicit their views regarding their privacy concerns in research. (shrink)

The debate on the ethics of privacy has been mainly dominated by Western perspectives, to the exclusion of broader ethical theories and socio-cultural perspectives. This imbalance carries risks; transplanted ethical norms and values can collide with those of the communities in which they are deployed. The consequent homogenization might also represent a missed opportunity to enrich and develop the current paradigm of privacy protection so as to effectively face new technological challenges. This article introduces and discusses the sub-Saharan (...) philosophy of Ubuntu and argues how its conception of the self helps to reinterpret some of the emerging issues revolving digital information technologies. To begin with, a general overview of the debate on the ethics of privacy is provided by distinguishing between individual and relational privacy. Also, the challenges of 'group privacy' are discussed. Then, we introduce basic principles of Ubuntu focusing on how these may have affected privacy conceptions and related legal practices. By outlining opportunities and risks of intercultural information ethics, we argue how Ubuntu—similarly to other communitarian moral philosophies—strengthens the development of the concept of relational privacy and, in particular, of group privacy. (shrink)

Purpose This study aims to explore the main concerns and attitudes Basque adolescents have regarding online privacy. It analyzes their motivations for sharing private information and the kind of information they share. Likewise, it examines whether they consider the potential consequences of revealing certain information online and analyzes if there are any differences between the motivations and attitudes of young people from Gipuzkoa and Labourd. Design/methodology/approach For this study, three methods were combined to collect the data in 17 schools (...) in the Basque provinces of Gipuzkoa and Labourd: a survey carried out among 1,133 students, out of which 242 also completed a diary and 482 took part in discussion groups. Findings The data from this research does not fully support the “youth cultures of disclosure” in the Basque Country; however, some of these practices have been observed. Originality/value Time spent online by adolescents has increased sharply in recent years. This increase has brought with it concerns about youth’s level of awareness regarding online privacy. This is the first cross-border study conducted in the Basque Country addressing this topic. (shrink)

Artificial intelligence (AI) technologies in medicine are gradually changing biomedical research and patient care. High expectations and promises from novel AI applications aiming to positively impact society raise new ethical considerations for patients and caregivers who use these technologies. Based on a qualitative content analysis of semi-structured interviews and focus groups with healthcare professionals (HCPs), patients, and family members of patients with Parkinson’s Disease (PD), the present study investigates participant views on the comparative benefits and problems of using human versus (...) AI predictive computer vision health monitoring, as well as participants’ ethical concerns regarding these technologies. Participants presumed that AI monitoring would enhance information sharing and treatment, but voiced concerns about data ownership, data protection, commercialization of patient data, and privacy at home. They highlighted that privacy issues at home and data security issues are often linked and should be investigated together. Findings may help technologists, HCPs, and policymakers determine how to incorporate stakeholders’ intersecting but divergent concerns into developing and implementing AI PD monitoring tools. (shrink)

Since 1991, over half the states have enacted laws that restrict or prohibit insurers’ use of genetic information in pricing, issuing, or structuring health insurance. Wisconsin was the first state to do so, in 1991, followed by Ohio in 1993, California and Colorado in 1994, and then several more states a year in each of the next five years. Similar legislation has been pending in Congress for several years. Also, a 1996 federal law known as the Health Insurance Portability and (...) Accountability Act prohibits group health insurers from applying “preexisting condition” exclusions to genetic conditions that are indicated solely by genetic tests and not by any actual symptoms. (shrink)

The proliferation of computers in the business realm may lead to ethical problems between individual and societal rights, and the organization's need to control costs. In an attempt to explore the causes of this potential conflict, this study examined the varying levels of sensitivity 223 respondents assigned to different types of information typically stored in computer-based human resource information systems. It was found that information most directly related to the job — pay rate, fringe benefits, educational history — was considered (...) to be the most sensitive. Participants, however, were more concerned about certain types of individuals/groups accessing these systems than about the kinds of information contained in them. Implications of these findings are discussed. (shrink)

Written by a select international group of leading privacy scholars, Social Dimensions of Privacy endorses and develops an innovative approach to privacy. By debating topical privacy cases in their specific research areas, the contributors explore the new privacy-sensitive areas: legal scholars and political theorists discuss the European and American approaches to privacy regulation; sociologists explore new forms of surveillance and privacy on social network sites; and philosophers revisit feminist critiques of privacy, (...) discuss markets in personal data, issues of privacy in health care and democratic politics. The broad interdisciplinary character of the volume will be of interest to readers from a variety of scientific disciplines who are concerned with privacy and data protection issues. (shrink)

In November, 2009, a prominent group of privacy professionals, business leaders, information technology specialists, and academics gathered in Madrid to discuss how the next set of threats to privacy could best be addressed.The event, Privacy by Design: The Definitive Workshop, was co-hosted by my office and that of the Israeli Law, Information and Technology Authority. It marked the latest step in a journey that I began in the 1990’s, when I first focused on enlisting the support (...) of technologies that could enhance privacy. Back then, privacy protection relied primarily upon legislation and regulatory frameworks—in an effort to offer remedies for data breaches, after they had occurred. As information technology became increasingly interconnected and the volume of personal information collected began to explode, it became clear that a new way of thinking about privacy was needed.Privacy-Enhancing Technologies paved the way for that new direction, highlighting how the universal pr .. (shrink)

The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. (...) This book considers the right to know and the right not to know about your own and others’ genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media. (shrink)

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

Since 1991, over half the states have enacted laws that restrict or prohibit insurers’ use of genetic information in pricing, issuing, or structuring health insurance. Wisconsin was the first state to do so, in 1991, followed by Ohio in 1993, California and Colorado in 1994, and then several more states a year in each of the next five years. Similar legislation has been pending in Congress for several years. Also, a 1996 federal law known as the Health Insurance Portability and (...) Accountability Act prohibits group health insurers from applying “preexisting condition” exclusions to genetic conditions that are indicated solely by genetic tests and not by any actual symptoms. (shrink)

This article discusses nurses’ and elderly patients’ perceptions of the realization of autonomy, privacy and informed consent in five European countries. Comparisons between the concepts and the countries indicated that both nurses and patients gave the highest ratings to privacy and the lowest to informed consent. There were differences between countries. According to the patient data, autonomy is best realized in Spain, privacy in the UK (Scotland), and informed consent in Finland. For the staff data, the best (...) results tended to concentrate in the UK. The conceptual and methodological limitations of the study are identified and discussed. Implications of the results are divided into three areas: nursing practice, education and research. In practice, the analysis of patients’ values and the ethical sensitivity of nurses are important as part of ethically good care. In nurse education, students should learn to recognize ethical problems, generally and particularly, among vulnerable groups of patients. Multicultural international research is needed in this area. This is the last of a set of five articles published together in this issue of Nursing Ethics in which the results of this comparative research project are presented. (shrink)