Brain machine interface (BMI) technology makes direct communication between the brain and a machine possible by means of electrodes. This paper reviews the existing and emerging technologies in this field and offers a systematic inquiry into the relevant ethical problems that are likely to emerge in the following decades.

A research biobank is a collection of personal health and lifestyle information, including genetic samples of yet unknown but possibly large information potential about the participant. For the participants, the risk of taking part is not bodily harm but infringements of their privacy and the harmful consequences such infringements might have. But what do we mean by privacy? Which harms are we talking about? To address such questions we need to get a grip on what privacy is all about and (...) aim for a fruitful perspective on the issues of property and privacy rights in the context of biobanking. This paper argues that the limits and handling of private matters is determined in specific social relations. The crucial point is thus to determine which information and activities are or are not the legitimate concern of others. Privacy and property rights should be seen as balanced by duties, that is as inherently relational interests extending into the public sphere, rather than to see these rights as the control of an object—for instance the participant’s biobank material. (shrink)

In this paper, we defend what we call the ‘Hybrid View’ of privacy. According to this view, an individual has privacy if, and only if, no one else forms an epistemically warranted belief about the individual’s personal matters, nor perceives them. We contrast the Hybrid View with what seems to be the most common view of what it means to access someone’s personal matters, namely the Belief-Based View. We offer a range of examples that demonstrate why the Hybrid View is (...) more plausible than the Belief-Based View. Finally, we show how the Hybrid View generates a more plausible fit between the concept of privacy, and the concept of a (morally objectionable) violation of privacy. (shrink)

The recent decades have seen established liberal democracies expand their surveillance capacities on a massive scale. This article explores what is problematic about government surveillance by democracies. It proceeds by distinguishing three potential sources of concern: the concern that governments diminish citizens’ privacy by collecting their data, the concern that they diminish their privacy by accessing their data, and the concern that the collected data may be used for objectionable purposes. Discussing the meaning and value of privacy, the article argues (...) that only the latter two constitute compelling independent concerns. It then focuses particularly on the third concern, exploring the risk of government surveillance being used to enforce illegitimate laws. It discusses three legitimacy-related reasons why we should be worried about the expansion of surveillance capacities in established democracies: Even established democracies might decay. There is a risk that surveillance capacities that are used for democratically legitimated purposes today will be used for poorly legitimated purposes in the future. Surveillance may be used to enforce laws that lack legitimacy due to the disproportionate punishment attached to their violation. The democratic procedures in established democracies fail to conform to the requirements formulated by mainstream theories of democratic legitimacy. Surveillance is thus used to enforce laws whose legitimacy is in doubt. (shrink)

Recently, Ingmar Persson and Julian Savulescu argued that an action that does not violate a moral right to privacy cannot violate that right if it is extended over time. Specifically, they argue that a moral right to privacy does not protect against gawking or stalking. In this reply the reverse position is defended. Specifically, it is argued that their arguments fails on according to their own definition of the right to privacy. Furthermore, it is argued and illustrated by examples that (...) this conceptual conclusion holds for many other conceptions of the right to privacy. Moreover, it is argued that Persson and Savluescu fail to recognize the privacy-related harm extended to individuals through gawking or stalking. Lastly, the article ends by sketching how the role of privacy in public and consent relates to the given examples. (shrink)

This paper discusses the idea that the concept of privacy should be understood in terms of control. Three different attempts to spell out this idea will be critically discussed. The conclusion will be that the Source Control View on privacy is the most promising version of the idea that privacy is to be understood in terms of control.

In this paper, we argue that there is at least a pro tanto reason to favor the control account of the right to privacy over the access account of the right to privacy. This conclusion is of interest due to its relevance for contemporary discussions related to surveillance policies. We discuss several ways in which the two accounts of the right to privacy can be improved significantly by making minor adjustments to their respective definitions. We then test the improved versions (...) of the two accounts on a test case, to see which account best explains the violation that occurs in the case. The test turns out in favor of the control account. (shrink)

Mass surveillance is a more real threat now than at any time in history. Digital communications and automated systems allow for the collection and processing of private information at a scale never seen before. Many argue that mass surveillance entails a significant loss of privacy. Others dispute that there is a loss of privacy if the information is only encountered by automated systems.This paper argues that automated mass surveillance does not involve a significant loss of privacy. Through providing a definition (...) of informational privacy as a matter of actual access of private information by one who can understand the meaning of that information, it follows that automated systems which lack understanding cannot of themselves diminish privacy. This is not to say that mass surveillance is unproblematic, though - it is deeply problematic. It is just that privacy is not the most significant of these problems. (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)

Some rights are so important for human autonomy and well-being that many scholars insist they should not be waived, traded, or abandoned. Privacy is a recent addition to this list. At the other end of the spectrum is the belief that privacy is a mere unimportant interest or preference. This paper defends a middle path between viewing privacy as an inalienable, non-waivable, non-transferrable right and the view of privacy as a mere subjective interest. First, an account of privacy is offered (...) that clarifies the concept and demonstrates how privacy is directly related to human health and well-being. Second, along with considering and rejecting several accounts for why privacy might be considered an inalienable right, an argument is offered for why it is morally permissible to waive, transfer, abandon, or alienate privacy. (shrink)

Experimental design is one aspect of a scientific method. A well-designed, properly conducted experiment aims to control variables in order to isolate and manipulate causal effects and thereby maximize internal validity, support causal inferences, and guarantee reliable results. Traditionally employed in the natural sciences, experimental design has become an important part of research in the social and behavioral sciences. Experimental methods are also endorsed as the most reliable guides to policy effectiveness. Through a discussion of some of the central concepts (...) associated with experimental design, including controlled variation and randomization, this chapter will provide a summary of key ethical issues that tend to arise in experimental contexts. In addition, by exploring assumptions about the nature of causation and by analyzing features of causal relationships, systems, and inferences in social contexts, this chapter will summarize the ways in which experimental design can undermine the integrity of not only social and behavioral research but policies implemented on the basis of such research. (shrink)

This doctoral thesis consists of five research papers that address four tangential topics, all of which are relevant for the challenges we are facing in our socio-technical society: information, security, privacy, and anonymity. All topics are approached by similar methods, i.e. with a concern about conceptual and definitional issues. In Paper I—concerning the concept of information and a semantic conception thereof—it is argued that the veridicality thesis is false. In Paper II—concerning information security—it is argued that the current leading definitions (...) suffer from counter-examples, and lack an appropriate conceptual sense. Based on this criticism a new kind of definition is proposed and defended. In Paper III—concerning control definitions of privacy—it is argued that any sensible control-definition of privacy must properly recognize the context as part of the defining criteria. In Paper IV—concerning the concept of privacy—it is argued that privacy is a normative concept and that it is constituted by our social relations. Final, in Paper V—concerning anonymity—it is argued that the threat from deanonymization technology goes beyond harm to anonymity. It is argued that a person who never is deanonymized can still be harmed and what is at stake is an ability to be anonymous. (shrink)

The beliefs, feelings, and thoughts that make up our streams of consciousness would seem to be inherently private. Nevertheless, modern neuroscience is offering to open up the sanctity of this domain to outside viewing. A common retort often voiced to this worry is something like, ‘Privacy is difficult to define and has no inherent moral value. What’s so great about privacy?’ In this article I will argue against these sentiments. A definition of privacy is offered along with an account of (...) why privacy is morally valuable. In the remaining sections, several privacy protecting principles are defended that would limit various sorts of neuro-surveillance promised by advancements in neuroscience. (shrink)

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

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

This article addresses four definitions of privacy. Initially, the literal meaning of privacy is mentioned; It then discusses the meaning of the term “privacy” in Ethics. The first meaning is the right to be alone and free. The second meaning of privacy is informational and is divided into two types: one is the definition based on expectation and another is a definition based on the state of awareness. The third type is the definition that defines privacy based on control. In (...) this paper, these definitions are reviewed one by one and the limitations noted by others are expressed and evaluated. The fourth type is a multi-dimensional or clustered definition. According to this definition, we should define privacy on a descriptive rather than a normative basis and avoid using any normative concept in its definition. According to this kind of definition, we can break the concept of privacy into three independent components. These three elements are secrecy, anonymity, and loneliness. Although this definition is not devoid of deficits, it is the most comprehensive one in this article because it refers to more privacy-related features Privacy, the right to loneliness, control, anonymity, secrecy, cluster definition. (shrink)

Although popular, control accounts of privacy suffer from various counterexamples. In this article, it is argued that two such counterexamples—while individually resolvable—can be combined to yield a dilemma for control accounts of privacy. Furthermore, it is argued that it is implausible that control accounts of privacy can defend against this dilemma. Thus, it is concluded that we ought not define privacy in terms of control. Lastly, it is argued that since the concept of privacy is the object of the right (...) to privacy if the former cannot be defined in terms of control, neither can the latter. (shrink)

It seems obvious that informational privacy has an epistemological component; privacy or lack of privacy concerns certain kinds of epistemic relations between a cogniser and sensitive pieces of information. One striking feature of the fairly substantial philosophical literature on informational privacy is that the nature of this epistemological component of privacy is only sparsely discussed. The main aim of this paper is to shed some light on the epistemological component of informational privacy.

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)

Recently, Jakob Thraine Mainz and Rasmus Uhrenfeldt defended a control-based conception of a moral right to privacy —focusing on conceptualizing necessary and jointly sufficient conditions for a privacy right violation. This reply comments on a number of mistakes they make, which have long reverberated through the debate on the conceptions of privacy and the right to privacy and therefore deserve to be corrected. Moreover, the reply provides a sketch of a general response for defending the limited access conception of the (...) right to privacy against control-based intuitions. (shrink)

Contemporary literature investigating the significant impact of technology on our lives leads many to conclude that ethics must be a part of the discussion at an earlier stage in the design process i.e., before a commercial product is developed and introduced. The problem, however, is the question regarding how ethics can be incorporated into an earlier stage of technological development and it is this question that we argue has not yet been answered adequately. There is no consensus amongst scholars as (...) to the kind of ethics that should be practiced, nor the individual selected to perform this ethical analysis. One school of thought holds that ethics should have pragmatic value in research and design and that it should be implemented by the engineers and/or scientists themselves, while another school of thought holds that ethics need not be so pragmatic. For the latter, the ethical reflection can aim at a variety of goals, and be carried out by an ethicist. None of the approaches resulting from these lines of thinking have been adopted on a wide-scale basis. To that end, the approach presented here is intended to bridge the gap between these schools of thought. It is our contention that ethics ought to be pragmatic and to provide utility for the design process and we maintain that adequate ethical reflection, and all that it entails, ought to be conducted by an ethicist. Thus, we propose a novel role for the ethicist—the ethicist as designer—who subscribes to a pragmatic view of ethics in order to bring ethics into the research and design of artifacts—no matter the stage of development. In this paper we outline the series of steps that a pragmatic value analysis entails: uncovering relevant values, scrutinizing these values and, working towards the translation of values into technical content. In conclusion, we present a list of tasks for the ethicist in his/her role as designer on the interdisciplinary team. (shrink)

This chapter sides with those who believe that a right to stay should be counted among fundamental human rights. However, it also acknowledges that there are good reasons for objecting to the most popular justifications of the right to stay, which are based on the assumption that people have valuable ties to their community of residence and that people’s life plans are located where they live. In response to these qualms, this chapter argues that the best way to make sense (...) of the right to stay is to conceive it as belonging to the category of “control rights”; these are the rights that protect people’s control over their own bodies and personal space, which is an essential condition for personhood and human dignity. This account of the right to stay can overcome the most pressing objections to its recognition as a fundamental human right. (shrink)

In the United States the ascendancy of speech protection is due to an expansive and unjustified view of the value or primacy of free expression and access to information. This is perhaps understandable, given that privacy has been understood as a mere interest, whereas speech rights have been seen as more fundamental. I have argued elsewhere that the “mere interest” view of privacy is false. Privacy, properly defined, is a necessary condition for human well-being or flourishing. The opening section of (...) this article will provide an overview of this theory. Next, after a few remarks on speech absolutism, privacy absolutism, and balancing theories, I will sketch several of the dominant argument strands that have been offered in support of presumptively weighty speech rights. While these arguments, taken together, establish that free speech is important, they do not support the view that speech should nearly always trump privacy. In final section I will present and defend a way to balance free speech and privacy claims. (shrink)

Due to the technology of machine learning, new breakthroughs are currently being achieved with constant regularity. By using machine learning techniques, computer applications can be developed and used to solve tasks that have hitherto been assumed not to be solvable by computers. If these achievements consider applications that collect and process personal data, this is typically perceived as a threat to information privacy. This paper aims to discuss applications from both fields of personality and image analysis. These applications are often (...) criticized by reference to the protection of privacy. This paper critically questions this approach. Instead of solely using the concept of privacy to address the risks of machine learning, it is increasingly necessary to consider and implement ethical anti-discrimination concepts, too. In many ways, informational privacy requires individual information control. However, not least because of machine learning technologies, information control has become obsolete. Hence, societies need stronger anti-discrimination tenets to counteract the risks of machine learning. (shrink)

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