Most people are completely oblivious to the danger that their medical data undergoes as soon as it goes out into the burgeoning world of big data. Medical data is financially valuable, and your sensitive data may be shared or sold by doctors, hospitals, clinical laboratories, and pharmacies—without your knowledge or consent. Medical data can also be found in your browsing history, the smartphone applications you use, data from wearables, your shopping list, and more. At best, data about (...) your health might end up in the hands of researchers on whose good will we depend to avoid abuses of power.2 Most likely, it will end up with data brokers who might sell it to a future employer, or an insurance company, or the government. At worst, your medical data may end up in the hands of criminals eager to commit extortion or identity theft. In addition to data harms related to exposure and discrimination, the collection of sensitive data by powerful corporations risks the creation of data monopolies that can dominate and condition access to health care. -/- This chapter aims to explore the challenge that big data brings to medical privacy. Section I offers a brief overview of the role of privacy in medical settings. I define privacy as having one’s personal information and one’s personal sensorial space (what I call autotopos) unaccessed. Section II discusses how the challenge of big data differs from other risks to medical privacy. Section III is about what can be done to minimise those risks. I argue that the most effective way of protecting people from suffering unfair medical consequences is by having a public universal healthcare system in which coverage is not influenced by personal data (e.g., genetic predisposition, exercise habits, eating habits, etc.). (shrink)

This paper argues that assessing personal responsibility in healthcare settings for the allocation of medical resources would be too privacy-invasive to be morally justifiable. In addition to being an inappropriate and moralizing intrusion into the private lives of patients, it would put patients’ sensitive data at risk, making data subjects vulnerable to a variety of privacy-related harms. Even though we allow privacy-invasive investigations to take place in legal trials, the justice and healthcare systems are not analogous. (...) The duty of doctors and healthcare professionals is to help patients as best they can—not to judge them. Patients should not be forced into giving up any more personal information than what is strictly necessary to receive an adequate treatment, and their medical data should only be used for appropriate purposes. Medical ethics codes should reflect these data rights. When a doctor asks personal questions that are irrelevant to diagnose or treat a patient, the appropriate response from the patient is: ‘none of your business’. (shrink)

In Vayena’s article, ‘direct-to-consumer (DTC) genomics on the scales of autonomy’, she claims that there may be a strong autonomy-based argument for permitting DTC genomic services. In this response, I point out how the diminishment of one’s genetic privacy can cause a relevant autonomy-related harm which must be balanced against the autonomy-related gains DTC services provide. By drawing on conceptual connections between privacy and the Razian conception of autonomy, I show that DTC genetic testing may decrease the range (...) of valuable options individuals possess, which impacts the extent to which would-be consumers can exercise their autonomy. (shrink)

In medical settings, machines are in close proximity with human beings: with patients who are in vulnerable states of health, who have disabilities of various kinds, with the very young or very old, and with medical professionals. Machines in these contexts are undertaking important medical tasks that require emotional sensitivity, knowledge of medical codes, human dignity, and privacy. -/- As machine technology advances, ethical concerns become more urgent: should medical machines be programmed to follow (...) a code of medical ethics? What theory or theories should constrain medical machine conduct? What design features are required? Should machines share responsibility with humans for the ethical consequences of medical actions? How ought clinical relationships involving machines to be modeled? Is a capacity for empathy and emotion detection necessary? What about consciousness? -/- The essays in this collection by researchers from both humanities and science describe various theoretical and experimental approaches to adding medical ethics to a machine, what design features are necessary in order to achieve this, philosophical and practical questions concerning justice, rights, decision-making and responsibility, and accurately modeling essential physician-machine-patient relationships. -/- This collection is the first book to address these 21st-century concerns. (shrink)

Recent developments in neuroscience create new opportunities for understanding the human brain. The power to do good, however, is also the power to harm, so scientific advances inevitably foster as many dystopian fears as utopian hopes. For instance, neuroscience lends itself to the fear that people will be forced to reveal thoughts and feelings which they would not have chosen to reveal, and of which they may be unaware. It also lends itself to the worry that people will be encouraged (...) to submit to medication or surgery which, even if otherwise beneficial, alters their brain in ways that undermine their identity and agency. As Kenneth Foster notes, neural implants can have surprising and unintended adverse effects, even when they help to mitigate the loss of bodily control associated with Parkinson’s disease, or help to provide hearing for children who would otherwise be profoundly deaf. While the risk of adverse outcomes are scarcely specific to neuroscience, he thinks that ‘These issues are perhaps more acute’ with the latter than with other medical interventions, ‘because they are intimately and fundamentally related to a person’s communication with the outside world’. [ 2006 196] -/- Neuroscience, like genomic science, then, is likely to create new ways of harming people. Many of these will involve violations of privacy. However, these are unlikely fundamentally to challenge the reasons to value privacy, or our ability to protect it in the foreseeable future. Rather, I would suggest, the major threat to privacy comes from the difficulty of determining its nature and value and when, if ever, efforts to protect it are justified. So I will start by examining some threats to privacy, and their implications for neuroscience, before turning to philosophical problems in understanding the nature and value of privacy, and the practical consequences of those philosophical difficulties. (shrink)

The potential to collect brain data more directly, with higher resolution, and in greater amounts has heightened worries about mental and brain privacy. In order to manage the risks to individuals posed by these privacy challenges, some have suggested codifying new privacy rights, including a right to “mental privacy.” In this paper, we consider these arguments and conclude that while neurotechnologies do raise significant privacy concerns, such concerns are—at least for now—no different from those raised (...) by other well-understood data collection technologies, such as gene sequencing tools and online surveillance. To better understand the privacy stakes of brain data, we suggest the use of a conceptual framework from information ethics, Helen Nissenbaum’s “contextual integrity” theory. To illustrate the importance of context, we examine neurotechnologies and the information flows they produce in three familiar contexts—healthcare and medical research, criminal justice, and consumer marketing. We argue that by emphasizing what is distinct about brain privacy issues, rather than what they share with other data privacy concerns, risks weakening broader efforts to enact more robust privacy law and policy. (shrink)

KEY POINTS In Canada, commercial data brokers collect deidentified patient data from pharmacies, private drug insurers, the federal government and medical clinics without patient consent. Although pharmaceutical companies are the data brokers’ primary customers, academics and nonprofit and public entities also use commercial data sets, given the absence of a coordinated public approach to collecting these data across Canada. Risks of commercialized patient data include loss of anonymity, surveillance and marketing, discrimination and violation of Indigenous data sovereignty. Coordinated infrastructure (...) for the collection and coordination of health data across Canada and updated privacy legislation would protect individuals and communities and enable appropriate data uses. (shrink)

Review of Graeme Laurie, Genetic Privacy.

The European Medical Information Framework project, funded through the IMI programme, has designed and implemented a federated platform to connect health data from a variety of sources across Europe, to facilitate large scale clinical and life sciences research. It enables approved users to analyse securely multiple, diverse, data via a single portal, thereby mediating research opportunities across a large quantity of research data. EMIF developed a code of practice to ensure the privacy protection of data subjects, protect the (...) interests of data sharing parties, comply with legislation and various organisational policies on data protection, uphold best practices in the protection of personal privacy and information governance, and eventually promote these best practices more widely. EMIF convened an Ethics Advisory Board, to provide feedback on its approach, platform, and the EcoP. The most important challenges the ECoP team faced were: how to define, control and monitor the purposes for which federated health data are used; the kinds of organisation that should be permitted to conduct permitted research; and how to monitor this. This manuscript explores those issues, offering the combined insights of the EAB and EMIF core ECoP team. For some issues, a consensus on how to approach them is proposed. For other issues, a singular approach may be premature but the challenges are summarised to help the community to debate the topic further. Arguably, the issues and their analyses have application beyond EMIF, to many research infrastructures connected to health data sources. (shrink)

Lately, more and more authors have asserted their belief that one of the criteria which, together with the medical ones, can and should be applied in the policy of selecting and/or prioritizing the patients in need for the allocation of medical resources with limited availability, is the principle of individual responsibility for illness. My intention in this study is to highlight some very serious obstacles looming against the attempt to apply this principle in the distribution of the (...) class='Hi'>medical services with limited availability. Although there are numerous such obstacles, I shall only discuss five of them (the most important, in my opinion). These are: 1) the impossibility to establish with certainty whether a patient got ill due to his lifestyle; 2) the lack of a feasible and reliable method of establishing an individual’s responsibility for his lifestyle; 3) a patient’s right to privacy; 4) some moral requirements and principles and, last but not least, 5) the ethics of the medical profession. (shrink)

Review of Graeme Laurie, Genetic Privacy: A Challenge to Medico-Legal Norms.

Background: Use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public views of patient data used in research, critically analysing such views though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance and inform ethical (...) and privacy debates. Methods: We searched three databases using terms such as patient, public, opinion, and electronic health records. Empirical studies were eligible for inclusion if they surveyed healthcare users, patients or the public in UK and Ireland and examined attitudes, opinions or beliefs about the use of patient data for medical research. Results were synthesised into broad themes using a framework analysis. Results: Out of 13,492 papers and reports screened, 20 papers or reports were eligible. While there was a widespread willingness to share patient data for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns about the potential risks to their privacy. The first of these concerns related to a party’s competence in keeping data secure, while the second was associated with the motivation a party might have to use the data. Conclusions: The public evaluates trustworthiness of research organisations by assessing their competence in data-handling and motivation for accessing the data. Public attitudes around data-sharing exemplified several principles which are also widely accepted in biomedical ethics. This provides a framework for understanding public attitudes, which should be considered in the development in any guidance for regulators and data custodians. We propose four salient questions which decision makers should address when evaluating proposals for the secondary use of data. (shrink)

This article is in a larger textbook of articles on Medical Ethics. It identifies a number of values that underlie professional commitments to confidentiality that are involved in protecting or promoting the client's (1) privacy, (2)social status, (3) economic advantages, (4) openness of communications, (5) seeking professional help, (6) trust in professionals, (7) autonomous control over personal information. The problem of making exceptions to confidentiality commitments is also examined.

This paper argues, against the prevailing view, that consent to privacy policies that regular internet users usually give is largely unproblematic from the moral point of view. To substantiate this claim, we rely on the idea of the right not to know (RNTK), as developed by bioethicists. Defenders of the RNTK in bioethical literature on informed consent claim that patients generally have the right to refuse medically relevant information. In this article we extend the application of the RNTK to (...) online privacy. We then argue that if internet users can be thought of as exercising their RNTK before consenting to privacy policies, their consent ought to be considered free of the standard charges leveled against it by critics. (shrink)

Wearable and mobile technology has advanced in leaps and bounds in the last decade with technological advances creating a role from enhancing healthy living to monitoring and treating disease. However, the discussion about the ethical use of such commercial technology in the community, especially in minors, is lacking behind. In this paper, we first summarize the major ethical concerns that arise from the usage of commercially available wearable technology in children, with a focus on smart watches, highlighting issues around the (...) consent process, mitigation of risk and potential confidentiality and privacy issues, as well as the potential for therapeutic misconceptions when used without medical advice. Then through a relevant thought experiment we move on to outline some further ethical concerns that are connected to the use of wearables by minors, to wit the issue of informed consent in the case of minors, forcing them to live in the spotlight, and compromising their right to an open future. We conclude with the view that mitigating potential pitfalls and enhancing the benefits of wearable technology especially for minors requires brave and comprehensive moral debates. (shrink)

Health data processing fields face ethical and legal problems regarding fundamental rights. As we know, patients can benefit in the Digital Era from having health or medical information available, and medical decisions can be more effective with a better understanding of clinical histories, medical and health data thanks to the development of Artificial Intelligence, Internet of Things and other Digital technologies. However, at the same time, we need to guarantee fundamental rights, including privacy ones. The complaint (...) about ethical and legal requirements – including constitutional ones – is particularly relevant in the processing of health data. This paper is focused on the problem of the consent required to the processing of health data and the exceptions established in the new European Union General Data Regulation, which cover the processing of this special data -within other aims- for scientific, historical and statistical research as legitimate purposes, which include biomedical research. The conclusion is that these open concepts are problematic both for the protection of privacy rights and for the legal security/certainty of research. On one hand there are several interpretation problems, regarding the processing of health data and the protection of information privacy. On the other hand, professionals must follow the Multilevel legal framework and to guarantee fundamental rights in the processing of health data, so there are also problems of interpretation for researchers. Therefore, we need a clearer legal framework for biomedical research. (shrink)

This study’s objective was to understand Colombian adolescents’ experiences and preferences regarding access to sexual and reproductive health services (SRHS), either alone or accompanied. A mixed-method approach was used, involving a survey of 812 participants aged eleven to twenty-four years old and forty-five semi-structured interviews with participants aged fourteen to twenty-three. Previous research shows that adolescents prefer privacy when accessing SRHS and often do not want their parents involved. Such findings align with the longstanding tendency to frame the ethical (...) principle of autonomy as based on independence in decision-making. However, the present study shows that such a conceptualization and application of autonomy does not adequately explain Colombian adolescent participants’ preferences regarding access to SRHS. Participants shared a variety of preferences to access SRHS, with the majority of participants attaching great importance to having their parents involved, to varying degrees. What emerges is a more complex and non-homogenous conceptualization of autonomy that is not inherently grounded in independence from parental involvement in access to care. We thus argue that when developing policies involving adolescents, policymakers and health professionals should adopt a nuanced “relational autonomy” approach to better respect the myriad of preferences that Colombian (and other) adolescents may have regarding their access to SRHS. (shrink)

The increased complexity of health information management sows the seeds of inequalities between health care stakeholders involved in the production and use of health information. Patients may thus be more vulnerable to use of their data without their consent and breaches in confidentiality. Health care providers can also be the victims of a health information system that they do not fully master. Yet, despite its possible drawbacks, the management of health information is indispensable for advancing science, medical care and (...) public health. Therefore, the central question addressed by this paper is how to manage health information ethically? This article argues that Paul Ricœur’s ‘‘little ethics’’, based on his work on hermeneutics and narrative identity, provides a suitable ethical framework to this end. This ethical theory has the merit of helping to harmonise self-esteem and solicitude amongst patients and healthcare providers, and at the same time provides an ethics of justice in public health. A matrix, derived from Ricœur’s ethics, has been developed as a solution to overcoming possible conflicts between privacy interests and the common good in the management of health information. (shrink)

What does Artificial Intelligence (AI) have to contribute to health care? And what should we be looking out for if we are worried about its risks? In this paper we offer a survey, and initial evaluation, of hopes and fears about the applications of artificial intelligence in medicine. AI clearly has enormous potential as a research tool, in genomics and public health especially, as well as a diagnostic aid. It’s also highly likely to impact on the organisational and business practices (...) of healthcare systems in ways that are perhaps under-appreciated. Enthusiasts for AI have held out the prospect that it will free physicians up to spend more time attending to what really matters to them and their patients. We will argue that this claim depends upon implausible assumptions about the institutional and economic imperatives operating in contemporary healthcare settings. We will also highlight important concerns about privacy, surveillance, and bias in big data, as well as the risks of over trust in machines, the challenges of transparency, the deskilling of healthcare practitioners, the way AI reframes healthcare, and the implications of AI for the distribution of power in healthcare institutions. We will suggest that two questions, in particular, are deserving of further attention from philosophers and bioethicists. What does care look like when one is dealing with data as much as people? And, what weight should we give to the advice of machines in our own deliberations about medical decisions? (shrink)

Background: Smart sensors have been developed as diagnostic tools for rehabilitation to cover an increasing number of geriatric patients. They promise to enable an objective assessment of complex movement patterns. -/- Objective: This research aimed to identify and analyze the conflicting ethical values associated with smart sensors in geriatric rehabilitation and provide ethical guidance on the best use of smart sensors to all stakeholders, including technology developers, health professionals, patients, and health authorities. -/- Methods: On the basis of a systematic (...) literature search of the scientific databases PubMed and ScienceDirect, we conducted a qualitative document analysis to identify evidence-based practical implications of ethical relevance. We included 33 articles in the analysis. The practical implications were extracted inductively. Finally, we carried out an ethical analysis based on the 4 principles of biomedical ethics: autonomy, beneficence, nonmaleficence, and justice. The results are reported in categories based on these 4 principles. -/- Results: We identified 8 conflicting aims for using smart sensors. Gains in autonomy come at the cost of patient privacy. Smart sensors at home increase the independence of patients but may reduce social interactions. Independent measurements performed by patients may result in lower diagnostic accuracy. Although smart sensors could provide cost-effective and high-quality diagnostics for most patients, minorities could end up with suboptimal treatment owing to their underrepresentation in training data and studies. This could lead to algorithmic biases that would not be recognized by medical professionals when treating patients. -/- Conclusions: The application of smart sensors has the potential to improve the rehabilitation of geriatric patients in several ways. It is important that patients do not have to choose between autonomy and privacy and are well informed about the insights that can be gained from the data. Smart sensors should support and not replace interactions with medical professionals. Patients and medical professionals should be educated about the correct application and the limitations of smart sensors. Smart sensors should include an adequate representation of minorities in their training data and should be covered by health insurance to guarantee fair access. (shrink)

Personal Health Monitoring (PHM) uses electronic devices which monitor and record health-related data outside a hospital, usually within the home. This paper examines the ethical issues raised by PHM. Eight themes describing the ethical implications of PHM are identified through a review of 68 academic articles concerning PHM. The identified themes include privacy, autonomy, obtrusiveness and visibility, stigma and identity, medicalisation, social isolation, delivery of care, and safety and technological need. The issues around each of these are discussed. The (...) system / lifeworld perspective of Habermas is applied to develop an understanding of the role of PHMs as mediators of communication between the institutional and the domestic environment. Furthermore, links are established between the ethical issues to demonstrate that the ethics of PHM involves a complex network of ethical interactions. The paper extends the discussion of the critical effect PHMs have on the patient’s identity and concludes that a holistic understanding of the ethical issues surrounding PHMs will help both researchers and practitioners in developing effective PHM implementations. (shrink)

The recent spectacular progress in assisted reproductive technologies (ARTs) has resulted in new ethical dilemmas. Though women occupy a central role in the reproductive process, within the ART paradigm, the importance accorded to the embryo commonly surpasses that given to the mother. This commentary questions the increasing tendency to position the embryonic subject in an antagonistic relation with the mother. I examine how the mother’s reproductive autonomy is compromised in relation to that of her embryo and argue in favour of (...) doing away with the subject-object dyad between them, particularly in the contexts of surrogacy and abortion. I also engage with the Surrogacy (Regulation) Bill, 2016. A critical discussion of the privacy judgment passed by the Supreme Court of India helps examine how personal autonomy of the body and mind extends to include the reproductive autonomy of women as well. (shrink)

The policy makers or lawyers may face the need of legal research for reasons. The congressmen may plan to make new laws to address the challenges of their constituent or to the interest of nation. The lawyers may need to serve their clients who like to know the legal issues involved, the strategies to deal with their loss and recovery, and prospect for winning the case if the dispute has gotten worse. The lawyers may practice in a solo business or (...) might work as an associate lawyer in the law firms. A senior lawyer or partner in some cases may like to exploit the junior work force about the problems or grievances from the potential clients. Since he needs to focus their attention on other matters, such as the business expansion of his law firm or more lucrative cases in need of career hands, he may tap the junior lawyer for the legal research, who could assist with the basis of his final legal opinion. The memorandum, opinion letter and brief would be such forms of professional communication for the lawyers and legal researchers. The congressman also can be supplemented with the aid of staffs in terms of his legal expertise and grasp of the issues standing for carrying their responsibility more effectively. For the lawyers and legal researchers, the structure of state and federal legal system is the kind of important variants to orient their work direction and basic frame for the most efficient and adequate scope of search and analysis. The paradigm change also is revolutionary to impact the general base of people. Decades ago, the research or researcher only related with the class of professionals, such as professors, lawyers, career officers and cadres of enterprises. They would enjoy insulation and exploit their research work as an entrance barrier from lay people. Their large shelves at home study or in the room or corner of office thrust an impression that he or she is learned and knowledgeable. This impliedly communicates his or her prestige of social or professional success. The books and articles seem to symbolize a kind of monopoly which bears to exclude unclassified or non-professional workers. The change is remarkable that every citizen could benefit from the on-line sources of information, which, of course, is generally true of professional knowledge. Now professors fear of plagiarism that students often are the kind of suspect. The legal research would turn on the help of digitization which revolutionizes to incur a new mode of research operation. About the query, the citizens and people can readily verify its truth or falsity with one clique within the personal computer. An enormous amount of information is currently flowing on the internet and on-line sources of reference, which shapes an informative and knowledgeable society. As the medical doctors warned decades ago, the precept is any most effective, “forbear from your intelligence or knowledge work for your health.” Many of them now spend long hours a day to satisfy their curiosity and intelligent search. He or she may be well awarded an academic degree if to recognize their hard work on his PC. Nevertheless, this information age does not always bring a positive progress, which arouses the kind of issues, say, right of privacy, on-line fraud. In some cases, this transformation may lead to an inferior attitude of researcher. My today’s experience is one of exotic case. I have received an e-mail from Google CEO stating that I have been selected as one of twelve winners from the pool of Google users. The award money is enormous which stalls me for some time. The authenticity and reliability have hit my head, and I utilized a verification service website managed by the team of lawyers. It costs five dollars and remaining 24 dollars would be processed upon the progress of interaction. I am waiting for an answer from the team. Then the research nowadays is not limited to the basic context of our subsistence, but influences in any depth into the professional lives. (shrink)

Breast cancer treatment is being transformed by artificial intelligence (AI). Nevertheless, most scientists, engineers, and physicians aren't ready to contribute to the healthcare AI revolution. In this paper, we discuss our experiences teaching a new American student undergraduate course that seeks to train the next generation for cross-cultural design thinking, which we believe is critical for AI to realize its full potential in breast cancer treatment. The main tasks of this course are preparing, performing and translating interviews with healthcare professionals (...) from both Portugal and the USA. Since the course is offered in Portugal as a short-term faculty-led study abroad program, students can explore the effect of culture on healthcare delivery and the design of healthcare technologies. The learning tests demonstrated student growth for breast cancer treatment in many areas important for the development of AI. In respect to understanding breast cancer care, most students had undervalued the effect of cancer and its treatment on the quality of life of women before taking this course and most were unaware of the importance of multidisciplinary care teams. Regarding AI in medical, students became more mindful of data privacy issues and the need to consider the effect of AI on healthcare professionals. (shrink)

Prescription Drug Monitoring Programs (PDMPs) contain detailed information about which controlled medications physicians prescribe individuals, including where, when, how much, by whom, and more. The programs allow physicians to glimpse into the life of each patient that visits them — sometimes before a single word is exchanged between them. Every state has a PDMP, and almost all states share the data they collect through it. In this paper, I argue that informed consent should be required for recording of prescriptions related (...) to addiction management into the PDMP. (shrink)

Background The worldwide increase in older persons demands technological solutions to combat the shortage of caregiving and to enable aging in place. Smart home health technologies (SHHTs) are promoted and implemented as a possible solution from an economic and practical perspective. However, ethical considerations are equally important and need to be investigated. Methods We conducted a systematic review according to the PRISMA guidelines to investigate if and how ethical questions are discussed in the field of SHHTs in caregiving for older (...) persons. Results 156 peer-reviewed articles published in English, German and French were retrieved and analyzed across 10 electronic databases. Using narrative analysis, 7 ethical categories were mapped: privacy, autonomy, responsibility, human vs. artificial interactions, trust, ageism and stigma, and other concerns. Conclusion The findings of our systematic review show the (lack of) ethical consideration when it comes to the development and implementation of SHHTs for older persons. Our analysis is useful to promote careful ethical consideration when carrying out technology development, research and deployment to care for older persons. Registration We registered our systematic review in the PROSPERO network under CRD42021248543. (shrink)

At the beginning of the COVID-19 pandemic, high hopes were put on digital contact tracing, using mobile phone apps to record and immediately notify contacts when a user reports as infected. Such apps can now be downloaded in many countries, but as second waves of COVID-19 are raging, these apps are playing a less important role than anticipated. We argue that this is because most countries have opted for app configurations that cannot provide a means of rapidly informing users of (...) likely infections while avoiding too many false positive reports. Mathematical modelling suggests that differently configured apps have the potential to do this. These require, however, that some pseudonymised data be stored on a central server, which privacy advocates have cautioned against. We contend that their influential arguments are subject to two fallacies. First, they have tended to one-sidedly focus on the risks that centralised data storage entails for privacy, while paying insufficient attention to the fact that inefficient contact tracing involves ethical risks too. Second, while the envisioned system does entail risks of breaches, such risks are also present in decentralised systems, which have been falsely presented as ‘privacy preserving by design’. When these points are understood, it becomes clear that we must rethink our approach to digital contact tracing in our fight against COVID-19. There are no data in this work. (shrink)

This article challenges the view most recently expounded by Emily Jackson that ‘decisional privacy’ ought to be respected in the realm of artificial reproduction (AR). On this view, it is considered an unjust infringement of individual liberty for the state to interfere with individual or group freedom artificially to produce a child. It is our contention that a proper evaluation of AR and of the relevance of welfare will be sensitive not only to the rights of ‘commissioning parties’ to (...) AR but also to public policy considerations. We argue that AR has implications for the common good, by involving matters of human reproduction, kinship, race, parenthood and identity. In this paper we challenge presuppositions concerning decisional privacy. We examine the essential commodification of human life implicit in AR and the systematicity that makes this possible. We address the objection that it is an ethically neutral way of having children and consider the problem of ‘existential debt’. After examining objections to the thesis that AR is illegitimate for reasons of public policy and the common good, we return to the issue of decisional privacy in the light of considerations concerning the legitimate role of the state in matters affecting human reproduction. (shrink)

The dominant approach in privacy theory defines information privacy as some form of control over personal information. In this essay, I argue that the control approach is mistaken, but for different reasons than those offered by its other critics. I claim that information privacy involves the drawing of epistemic boundaries—boundaries between what others should and shouldn’t know about us. While controlling what information others have about us is one strategy we use to draw such boundaries, it is (...) not the only one. We conceal information about ourselves and we reveal it. And since the meaning of information is not self-evident, we also work to shape how others contextualize and interpret the information about us that they have. Information privacy is thus about more than controlling information; it involves the constant work of producing and managing public identities, what I call “social self- authorship.” In the second part of the essay, I argue that thinking about information privacy in terms of social self- authorship helps us see ways that information technology threatens privacy, which the control approach misses. Namely, information technology makes social self- authorship invisible and unnecessary, by making it difficult for us to know when others are forming impressions about us, and by providing them with tools for making assumptions about who we are which obviate the need for our involvement in the process. (shrink)

Philosophers have focused on why privacy is of value to innocent people with nothing to hide. I argue that for people who do have something to hide, such as a past crime, or bad behavior in a public place, informational privacy can be important for avoiding undeserved or disproportionate non-legal punishment. Against the objection that one cannot expect privacy in public facts, I argue that I might have a legitimate privacy interest in public facts that are (...) not readily accessible, or in details of a public fact that implicate my dignity, or in not having a public fact memorialized and spread to more people than I willingly exposed myself to. (shrink)

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

: Does the rejection of pure proceduralism show that we should adopt Brettschneider’s value theory of democracy? The answer, this paper suggests, is ‘no’. There are a potentially infinite number of incompatible ways to understand democracy, of which the value theory is, at best, only one. The paper illustrates and substantiates its claims by looking at what the secret ballot shows us about the importance of privacy and democracy. Drawing on the reasons to reject Mill’s arguments for open voting, (...) in a previous paper by A. Lever, it argues that people’s claims to privacy have a constitutive, as well as an instrumental, importance to democratic government, which is best seen by attending to democracy as a practice, and not merely as a distinctive set of values. (shrink)

Differential privacy (DP) aims to confer data processing systems with inherent privacy guarantees, offering strong protections for personal data. But DP’s approach to privacy carries with it certain assumptions about how mathematical abstractions will be translated into real-world systems, which—if left unexamined and unrealized in practice—could function to shield data collectors from liability and criticism, rather than substantively protect data subjects from privacy harms. This article investigates these assumptions and discusses their implications for using DP to (...) govern data-driven systems. In Parts 1 and 2, we introduce DP as, on one hand, a mathematical framework and, on the other hand, a kind of real-world sociotechnical system, using a hypothetical case study to illustrate how the two can diverge. In Parts 3 and 4, we discuss the way DP frames privacy loss, data processing interventions, and data subject participation, arguing it could exacerbate existing problems in privacy regulation. In part 5, we conclude with a discussion of DP’s potential interactions with the endogeneity of privacy law, and we propose principles for best governing DP systems. In making such assumptions and their consequences explicit, we hope to help DP succeed at realizing its promise for better substantive privacy protections. (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 first few years of the 21st century were characterised by a progressive loss of privacy. Two phenomena converged to give rise to the data economy: the realisation that data trails from users interacting with technology could be used to develop personalised advertising, and a concern for security that led authorities to use such personal data for the purposes of intelligence and policing. In contrast to the early days of the data economy and internet surveillance, the last few years (...) have witnessed a rising concern for privacy. As bad data practices have come to light, citizens are starting to understand the real cost of using online digital technologies. Two events stamped 2018 as a landmark year for privacy: the Cambridge Analytica scandal, and the implementation of the European Union’s General Data Protection Regulation (GDPR). The former showed the extent to which personal data has been shared without data subjects’ knowledge and consent and many times for unacceptable purposes, such as swaying elections. The latter inaugurated the beginning of robust data protection regulation in the digital age. Getting privacy right is one of the biggest challenges of this new decade of the 21st century. The past year has shown that there is still much work to be done on privacy to tame the darkest aspects of the data economy. As data scandals continue to emerge, questions abound as to how to interpret and enforce regulation, how to design new and better laws, how to complement regulation with better ethics, and how to find technical solutions to data problems. The aim of the research project Data, Privacy, and the Individual is to contribute to a better understanding of the ethics of privacy and of differential privacy. The outcomes of the project are seven research papers on privacy, a survey, and this final report, which summarises each research paper, and goes on to offer a set of reflections and recommendations to implement best practices regarding privacy. (shrink)

In recent years, educational institutions have started using the tools of commercial data analytics in higher education. By gathering information about students as they navigate campus information systems, learning analytics “uses analytic techniques to help target instructional, curricular, and support resources” to examine student learning behaviors and change students’ learning environments. As a result, the information educators and educational institutions have at their disposal is no longer demarcated by course content and assessments, and old boundaries between information used for assessment (...) and information about how students live and work are blurring. Our goal in this paper is to provide a systematic discussion of the ways in which privacy and learning analytics conflict and to provide a framework for understanding those conflicts. -/- We argue that there are five crucial issues about student privacy that we must address in order to ensure that whatever the laudable goals and gains of learning analytics, they are commensurate with respecting students’ privacy and associated rights, including (but not limited to) autonomy interests. First, we argue that we must distinguish among different entities with respect to whom students have, or lack, privacy. Second, we argue that we need clear criteria for what information may justifiably be collected in the name of learning analytics. Third, we need to address whether purported consequences of learning analytics (e.g., better learning outcomes) are justified and what the distributions of those consequences are. Fourth, we argue that regardless of how robust the benefits of learning analytics turn out to be, students have important autonomy interests in how information about them is collected. Finally, we argue that it is an open question whether the goods that justify higher education are advanced by learning analytics, or whether collection of information actually runs counter to those goods. (shrink)

Digital privacy scholars tend to bemoan ordinary people’s limited knowledge of and lukewarm interest in what happens to their digital data. This general lack of interest and knowledge is often taken as a consideration in favor of legislation aiming to force internet companies into adopting more responsible data practices. While we remain silent on whether any new laws are called for, in this paper we wish to underline a neglected consequence of people’s ignorance of and apathy for digital (...) class='Hi'>privacy: their potential to encourage capture by industry interests. In particular, we argue that such laws may be at increased risk of capture because they are unlikely to be democratically responsive. We make this claim on a twofold basis: first, well-known theoretical mechanisms explaining how the absence of responsiveness leads to capture, identified in prior political science and political philosophy literature, yield the prediction that digital privacy legislation is likely to be unresponsive and thus captured; second, empirical data concerning the European Union’s digital privacy laws, with a special focus on the General Data Protection Regulation, appears to confirm these predictions: the bloc’s (world’s?) flagship privacy protection law seems more responsive to corporate than citizen interests. (shrink)

Lauritz Munch and Björn Lundgren have recently replied to a paper published by us in this journal. In our original paper, we defended a novel version of the so-called ‘control theory’ of the moral right to privacy. We argued that control theorists should define ‘control’ as what we coined ‘Negative Control’. Munch and Lundgren have recently provided a range of interesting and challenging objections to our view. Independently of each other, they give almost identical counterexamples to our definition of (...) Negative Control. In this comment, we show that while the counterexamples are genuine counterexamples, they do not force us to abandon the idea of Negative Control. Furthermore, we reply to two additional objections raised by Lundgren. One of these replies involves giving a new account of what the relation is between the concept of privacy and the right to privacy. (shrink)

Privacy is valued by many. But what it means to have privacy remains less than clear. In this paper, I argue that the notion of privacy should be understood in epistemic terms. What it means to have (some degree of) privacy is that other persons do not stand in significant epistemic relations to those truths one wishes to keep private.

Privacy involves a zone of inaccessibility in a particular context. In social discourse it pertains to activities that are not public, the latter being by definition knowable by outsiders. The public domain so called is the opposite of secrecy and somewhat less so of confidentiality. The private sphere is respected in law and morality, now in terms of a right to privacy. In law some violations of privacy are torts. Philosophers tend to associate privacy with personhood. (...) Professional relationships are prima facie private but may be investigated for cause. Privacy may entail both intimacy and caring but neither necessarily so. Finally, various technology-based means of intrusion are rendering privacy ever more difficult to sustain. (shrink)

At the beginning of the COVID-19 pandemic, high hopes were placed on digital contact tracing. Digital contact tracing apps can now be downloaded in many countries, but as further waves of COVID-19 tear through much of the northern hemisphere, these apps are playing a less important role in interrupting chains of infection than anticipated. We argue that one of the reasons for this is that most countries have opted for decentralised apps, which cannot provide a means of rapidly informing users (...) of likely infections while avoiding too many false positive reports. Centralised apps, in contrast, have the potential to do this. But policy making was influenced by public debates about the right app configuration, which have tended to focus heavily on privacy, and are driven by the assumption that decentralised apps are “privacy preserving by design”. We show that both types of apps are in fact vulnerable to privacy breaches, and, drawing on principles from safety engineering and risk analysis, compare the risks of centralised and decentralised systems along two dimensions, namely the probability of possible breaches and their severity. We conclude that a centralised app may in fact minimise overall ethical risk, and contend that we must reassess our approach to digital contact tracing, and should, more generally, be cautious about a myopic focus on privacy when conducting ethical assessments of data technologies. (shrink)

In light of technology that may reveal the content of a person’s innermost thoughts, I address the question of whether there is a right to ‘brain privacy’—a right not to have one’s inner thoughts revealed to others–even if exposing these thoughts might be beneficial to society. I draw on a conception of privacy as the ability to control who has access to information about oneself and to an account that connects one’s interest in privacy to one’s interests (...) in autonomy and associated reputational interests, and preserving one’s dignity. Focusing on the controversial case of Gilberto Valle, known as the ‘cannibal cop’, who faced legal punishment and moral reproach for deeply disturbing thoughts of doing violence to women, thoughts he claimed were mere fantasies, I argue that Valle has a right to brain privacy if he has a legitimate privacy interest that is not outweighed by competing societal interests in avoiding harm. Our weighing of competing privacy and societal interests will depend on the magnitude of the privacy interests in autonomy and dignity, and on how reliable the technology used to expose inner thoughts is in predicting future harmful behavior and identifying true threats. (shrink)

As the science and technology of the brain and mind develop, so do the ways in which brains and minds may be surveilled and manipulated. Some cognitive libertarians worry that these developments undermine cognitive liberty, or “freedom of thought.” I argue that protecting an individual’s cognitive liberty undermines others’ ability to use their own cognitive liberty. Given that the threatening devices and processes are not relevantly different from ordinary and frequent intrusions upon one’s brain and mind, strong protections of cognitive (...) liberty may proscribe neurotechnological intrusions, but also ordinary intrusions. Thus, the cognitive libertarian position “hog-ties” others’ use of their own liberties. This problem for the cognitive libertarian is the same problem that ordinary libertarianism faces in protecting individual rights to property and person. But the libertarian strategies for resolving the problem don’t work for the cognitive libertarian. I conclude that the right to mental privacy is weaker than what cognitive libertarians want it to be. (shrink)

Does privacy--the condition of being invisible to public scrutiny--in so emphasizing individual rights, undermine community? One objection to privacy is that it is a license to engage in antisocial activity that undermines social norms. Another objection is that privacy encourages isolation and anonymity, also undermining community. Drawing on the political theory of Hegel, I argue that privacy can promote community. Some invasions of privacy can undermine a sort of autonomy essential for maintaining a community. I (...) also discuss what we need to know before establishing whether privacy empirically promotes or undermines community. (shrink)

This article is part of a symposium on property-owning democracy. In A Theory of Justice John Rawls argued that people in a just society would have rights to some forms of personal property, whatever the best way to organise the economy. Without being explicit about it, he also seems to have believed that protection for at least some forms of privacy are included in the Basic Liberties, to which all are entitled. Thus, Rawls assumes that people are entitled to (...) form families, as well as personal associations which reflect their tastes as well as their beliefs and interests. He seems also to have assumed that people are entitled to seclude themselves, as well as to associate with others, and to keep some of their beliefs, knowledge, feelings and ideas to themselves, rather than having to share them with others. So, thinking of privacy as an amalgam of claims to seclusion, solitude, anonymity and intimate association, we can say that Rawls appears to include at least some forms of privacy in his account of the liberties protected by the first principle of justice. -/- However, Rawls did not say very much about how he understands people’s claims to privacy, or how those claims relate to his ideas about property-ownership. This is unfortunate, because two familiar objections to privacy seem particularly pertinent to his conception of the basic liberties. The first was articulated with customary panache by Judith Thomson, in a famous article on the moral right to privacy, in which she argued that talk of a moral right to privacy is confused and confusing, because privacy rights are really just property rights in disguise. The second objection has long been a staple of leftist politics, and is that the association of privacy with private property means that privacy rights are just a mask for coercive and exploitative relationships, and therefore at odds with democratic freedom, equality and solidarity. If the first objection implies that Rawls is wrong to think that protection for privacy can be distinguished from protection of personal property, the second objection implies that Rawls cannot hope to protect privacy without thereby committing himself to the grossest forms of capitalist inequality. -/- In this paper I will not discuss Rawls’ views of property-owning democracy. However, by clarifying the relationship between claims to privacy and claims to property-ownership, I hope to illuminate some of the conceptual, moral and political issues raised by Rawls’ ideas, and by work on the concept of a property-owning democracy, which he inspired. As we will see, privacy-based justifications of private ownership are not always unappealing, and privacy is sometimes promoted, rather than threatened, by collective ownership. The conclusion draws out the significance of these claims for the idea of a property-owning democracy. (shrink)

Are rights to privacy consistent with sexual equality? In a brief, but influential, article Catherine MacKinnon trenchantly laid out feminist criticisms of the right to privacy. In “Privacy v. Equality: Beyond Roe v. Wade” she linked familiar objections to the right to privacy and connected them to the fate of abortion rights in the U.S.A. (MacKinnon, 1983, 93-102). For many feminists, the Supreme Court’s decision in Roe v. Wade (1973) had suggested that, notwithstanding a dubious past, (...) legal rights to privacy might serve feminist objectives, and prove consistent with sexual equality. By arguing that Roe’s privacy justification of abortion rights was directly responsible for the weakness and vulnerability of abortion rights in America, MacKinnon took aim at feminist hopes for the right to privacy at their strongest point. Maintaining that Roe’s privacy justification of abortion is intimately, and not contingently, related to the Supreme Court’s subsequent decision in Harris v. McRae, (1980) MacKinnon concluded that privacy rights cannot be reconciled with the freedom and equality of women, and so can have no place in a democracy.1 In Harris, the Supreme Court held that the State need not provide Medicaid coverage for abortions that are necessary to preserve the health, but not the life, of a pregnant woman, effectively depriving poor women of almost all state aid for abortions.2 Moreover, the Court’s subsequent decision in Bowers v . Hardwick (1986) appeared to confirm the truth of MacKinnon’s observation – though this case concerned gay rights, rather than abortion rights, and occurred several years after MacKinnon’s condemnation of Harris. -/- This paper examines MacKinnon’s claims about the relationship of rights to privacy and equality in light of the reasoning in Harris and Bowers. When we contrast the Majority and Minority decisions in these cases, it shows, we can distinguish interpretations of the right to privacy that are consistent with sexual equality from those that are not. This is not simply because the two differ in their consequences – though they do - but because the former, unlike the latter, rely on empirical and normative assumptions that would justify sexual inequality whatever right they were used to interpret. So while I agree with MacKinnon that the Majority’s interpretation of the right to privacy in Harris is inconsistent with the equality of men and women, I show that there is no inherent inconsistency in valuing both privacy and equality, and no reason why we must chose to protect the one, rather than the other. Indeed, an examination of MacKinnon’s article, I suggest, can help us to see why rights to privacy can be part of a scheme of democratic rights, and how we might go about democratising the right to privacy in future. To avoid confusion I should emphasise that my arguments are of a philosophical, not a legal, nature. Thus, I will be ignoring the specifically legal and constitutional aspects of MacKinnon’s article, and of the Supreme Court decisions, in order to bring their philosophical significance into focus. -/- . (shrink)

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)

This article addresses the question of whether an expectation of privacy is reasonable in the face of new technologies of surveillance, by developing a principle that best fits our intuitions. A "no sense enhancement" principle which would rule out searches using technologically sophisticated devices is rejected. The paper instead argues for the "mischance principle," which proscribes uses of technology that reveal what could not plausibly be discovered accidentally without the technology, subject to the proviso that searches that serve a (...) great public good that clearly outweighs minimal intrusions upon privacy are permissible. Justifications of the principle are discussed, including reasons why we should use the principle and not rely solely on a utilitarian balancing test. The principle is applied to uses of aerial photography and heat-detection devices. (shrink)

Unjustifiable assumptions about sex and gender roles, the untamable potency of maleness, and gynophobic notions about women's bodies inform and influence a broad range of policy-making institutions in this society. In December 2004, the U.S. Court of Appeals for the Sixth Circuit continued this ignoble cultural pastime when they decided Everson v. Michigan Department of Corrections. In this decision, the Everson Court accepted the Michigan Department of Correction's claim that “the very manhood” of male prison guards both threatens the safety (...) of female inmates and violates the women's “special sense of privacy in their genitals” and declared that sex-specific employment policies for prison guards is not impermissibly discriminatory. I believe that the Court's decision relies on unacceptable stereotypes about sex, gender and sexuality and it significantly undermines Title VII's power to end discriminatory employment practices. (shrink)