Review of Graeme Laurie, Genetic Privacy.

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

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)

Can one’s genetic profile be owned? How about techniques to improve genetic profi les? A brave new world of genetic enhancement is upon us and we’d better be ready to answer such questions. Adam Moore is ready. He thinks the answers to these questions are resoundingly “yes.” He defends this on the ground of individual liberty in the face of potential government control of such technology. He argues that genetic property is to be assimilated to rights (...) of privacy and property in general and can be owned. He defends this against several important objections on the basis of societal overriding needs or goods. (shrink)

If I decide to disclose information about myself, this act can undermine other people’s ability to effectively conceal information about themselves. One case in point involves genetic information: if I share ‘my’ genetic information with others, I thereby also reveal genetic information about my biological relatives. Such dependencies are well-known in the privacy literature and are often referred to as ‘privacy dependencies’. Some take the existence of privacy dependencies to generate a moral duty to (...) sometimes avoid sharing information about oneself. If true, we argue, then it is sometimes justified for others to impose harm on the person sharing the information to prevent them from doing so. This is a highly revisionary implication. Hence, one must either endorse a highly revisionary view on what one may do to protect one’s privacy, or one must reject the view that privacy dependencies can be used to justify a moral duty that constrains choices about sharing information about oneself. (shrink)

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)

Genetic testing in the workplace is a technology both full of promise and fraught with ethical peril. Though not yet common, it is likely to become increasingly so. We survey the key arguments in favour of such testing, along with the most significant ethical worries. We further propose a set of pragmatic criteria, which, if met, would make it permissible for employers to offer (but not to require) workplace genetic testing.

At some point in the future – perhaps within the next few decades – it will be possible for foetuses to develop completely outside the womb. Ectogenesis, as this technology is called, raises substantial issues for the abortion debate. One such issue is that it will become possible for a woman to have an abortion, in the sense of having the foetus removed from her body, but for the foetus to be kept alive. We argue that while there is a (...) right to an abortion, there are reasons to doubt that there is a right to the death of the foetus. Our strategy in this essay is to consider and reject three arguments in favour of this latter right. The first claims that women have a right not to be biological mothers, the second that women have a right to genetic privacy, and the third that a foetus is one's property. Furthermore, we argue that it follows from rejecting the third claim that genetic parents also lack a right to the destruction of cryopreserved embryos used for in vitro fertilization. The conclusion that a woman possesses no right to the death of the foetus builds upon the claims that other pro-choice advocates, such as Judith Jarvis Thomson, have made. (shrink)

Many people believe that the abortion debate will end when at some point in the future it will be possible for fetuses to develop outside the womb. Ectogenesis, as this technology is called, would make possible to reconcile pro-life and pro-choice positions. That is because it is commonly believed that there is no right to the death of the fetus if it can be detached alive and gestated in an artificial womb. Recently Eric Mathison and Jeremy Davis defended this position, (...) by arguing against three common arguments for a right to the death of the fetus. I claim that their arguments are mistaken. I argue that there is a right to the death of the fetus because gestating a fetus in an artificial womb when genetic parents refuse it violates their rights not to become a biological parent, their rights to genetic privacy and their property rights. The right to the death of the fetus, however, is not a woman's right but genetic parents’ collective right which only can be used together. (shrink)

Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome – its common nature – has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature (...) of the genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing. In order for public health officials to have the authority to develop genetics policies for the sake of the public good, the genome must have not only a common, but also a public, dimension. This article contends that DNA carries a public dimension through the use of two conceptual frameworks: the common heritage framework and the common resource framework. Both frameworks establish a public interest in the human genome, but the CH framework can be used to justify policies aimed at preserving and protecting the genome, while the CR framework can be employed to justify policies for utilizing the genome for the public benefit. A variety of possible policy implications are discussed, with special attention paid to the use of large-scale genomics databases for public health research. (shrink)

This article provides a brief introduction to some contemporary challenges found in the intersection of bioethics and international criminal law involving genetic privacy, organ trafficking, genetic engineering, and cloning. These challenges push us to re-evaluate the question of whether the international criminal law should hold corporations criminally liable. I argue that a minimalist and Strawsonian conception of corporate responsibility could be useful for deterring the wrongs outlined in first few sections and in answering compelling objections to corporate (...) criminal liability. (shrink)

Some years ago I reached the point where I can usually tell from the title of a book, or at least from the chapter titles, what kinds of philosophical mistakes will be made and how frequently. In the case of nominally scientific works these may be largely restricted to certain chapters which wax philosophical or try to draw general conclusions about the meaning or long term significance of the work. Normally however the scientific matters of fact are generously interlarded with (...) philosophical gibberish as to what these facts mean. The clear distinctions which Wittgenstein described some 80 years ago between scientific matters and their descriptions by various language games are rarely taken into consideration, and so one is alternately wowed by the science and dismayed by its incoherent analysis. So it is with this volume. -/- If one is to create a mind more or less like ours, one needs to have a logical structure for rationality and an understanding of the two systems of thought (dual process theory). If one is to philosophize about this, one needs to understand the distinction between scientific issues of fact and the philosophical issue of how language works in the context at issue, and of how to avoid the pitfalls of reductionism and scientism, but Kurzweil, like nearly all students of behavior, is largely clueless. He, is enchanted by models, theories, and concepts, and the urge to explain, while Wittgenstein showed us that we only need to describe, and that theories, concepts etc., are just ways of using language (language games) which have value only insofar as they have a clear test (clear truthmakers, or as John Searle (AI’s most famous critic) likes to say, clear Conditions of Satisfaction (COS)). I have attempted to provide a start on this in my recent writings, such as The Logical Structure of Consciousness (behavior, personality, rationality, higher order thought, intentionality) (2016) and The Logical Structure of Philosophy, Psychology, Mind and Language as Revealed in the Writings of Ludwig Wittgenstein and John Searle (2016). Those interested in all my writings in their most recent versions may consult my e-book Philosophy, Human Nature and the Collapse of Civilization - Articles and Reviews 2006-2016 662p (2016). I will give a very brief presentation of this framework since I have described it in great detail in many recent papers and several books, available on this site and others. -/- Also, as usual in ‘factual’ accounts of AI/robotics, he gives no time to the very real threats to our privacy, safety and even survival from the increasing ‘androidizing’ of society which is prominent in other authors (Bostrum, Hawking etc.) and frequent in scifi and films, so I make a few comments on the quite possibly suicidal utopian delusions of ‘nice’ androids, humanoids, democracy, diversity, and genetic engineering. -/- I take it for granted that technical advances in electronics, robotics and AI will occur, resulting in profound changes in society. However, I think the changes coming from genetic engineering are at least as great and potentially far greater, as they will enable us to utterly change who we are. And it will be feasible to make supersmart/super strong servants by modifying our genes or those of other monkeys. As with other technology, any country that resists will be left behind. But will it be socially and economically feasible to implement biobots or superhumans on a massive scale? And even if so, it does not seem remotely possible, economically or socially to prevent the collapse of industrial civilization. So, ignoring the philosophical mistakes in this volume as irrelevant, and directing our attention only to the science, what we have here is another suicidal utopian delusion rooted in a failure to grasp basic biology, psychology and human ecology, the same delusions that are destroying America and the world. I see a remote possibility the world can be saved, but not by AI/robotics,CRISPR, nor by democracy and equality. -/- Those wishing a comprehensive up to date framework for human behavior from the modern two systems view may consult my book ‘The Logical Structure of Philosophy, Psychology, Mind and Language in Ludwig Wittgenstein and John Searle’ 2nd ed (2019). Those interested in more of my writings may see ‘Talking Monkeys--Philosophy, Psychology, Science, Religion and Politics on a Doomed Planet--Articles and Reviews 2006-2019 3rd ed (2019), The Logical Structure of Human Behavior (2019), and Suicidal Utopian Delusions in the 21st Century 4th ed (2019). (shrink)

Given the sordid history of injustices linking genetics to race and ethnicity, considerations of justice are central to ensuring the responsible development of precision medicine programmes around the world. While considerations of justice may be in tension with other areas of concern, such as scientific value or privacy, there are also tensions between different aspects of justice. This paper focuses on three particular aspects of justice relevant to this precision medicine: social justice, distributive justice and human rights. We describe (...) the implications of each for the use of race and ethnicity in precision medicine, and also how they intersect and potentially conflict with each another. By attending to these intersections, we aim to enrich and add nuance to debates over how best to proceed with precision medicine initiatives. (shrink)

Background Genomic research on neurodevelopmental disorders (NDDs), particularly involving minors, combines and amplifies existing research ethics issues for biomedical research. We performed a review of the literature on the ethical issues associated with genomic research involving children affected by NDDs as an aid to researchers to better anticipate and address ethical concerns. Results Qualitative thematic analysis of the included articles revealed themes in three main areas: research design and ethics review, inclusion of research participants, and communication of research results. Ethical (...) issues known to be associated with genomic research in general, such as privacy risks and informed consent/assent, seem especially pressing for NDD participants because of their potentially decreased cognitive abilities, increased vulnerability, and stigma associated with mental health problems. Additionally, there are informational risks: learning genetic information about NDD may have psychological and social impact, not only for the research participant but also for family members. However, there are potential benefits associated with research participation, too: by enrolling in research, the participants may access genetic testing and thus increase their chances of receiving a (genetic) diagnosis for their neurodevelopmental symptoms, prognostic or predictive information about disease progression or the risk of concurrent future disorders. Based on the results of our review, we developed an ethics checklist for genomic research involving children affected by NDDs. Conclusions In setting up and designing genomic research efforts in NDD, researchers should partner with communities of persons with NDDs. Particular attention should be paid to preventing disproportional burdens of research participation of children with NDDs and their siblings, parents and other family members. Researchers should carefully tailor the information and informed consent procedures to avoid therapeutic and diagnostic misconception in NDD research. To better anticipate and address ethical issues in specific NDD studies, we suggest researchers to use the ethics checklist for genomic research involving children affected by NDDs presented in this paper. (shrink)

A number of controversial topics related to bioethics and biotechnology 17 papers that deal with various aspects of release and development of genetically modified organisms (GMOs), stem cells and cloning, privacy and bio-banking.

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)

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)

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)

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)

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)

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)

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 right to be forgotten enables individuals to remove certain links from search results that appear when their names are entered as search terms. Formulated as a distinct application of the general right to privacy, the right to be forgotten has proven highly controversial, for two reasons. First, it is difficult to see how the specific right to be forgotten can apply to the withdrawal of public information, since the general right to privacy typically covers the disclosure of (...) private information. Second, as a putative right to withdraw information from public reach, the right to be forgotten poses a threat to freedom of speech, which depends on the accessibility of information. By responding to these two objections, this paper develops a novel account of the right to be forgotten, understood as a claim of withdrawal grounded in both privacy and free speech interests. -/- . (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)

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)

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)

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)

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.

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)

: 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)

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)

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)

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)

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)

Genetically engineered (GE) insects, such as the GE OX513A Aedes aegypti mosquitoes, have been designed to suppress their wild-type populations so as to reduce the transmission of vector-borne diseases in humans. Apart from the ecological and epidemiological uncertainties associated with this approach, such biotechnological approaches may be used by individual governments or the global community of nations to avoid addressing the underlying structural, systemic causes of those infections... We discuss here key ethical questions raised by the use of GE mosquitoes, (...) with the aim of fostering discussion between the public, researchers, policy makers, healthcare organizations, and regulatory agencies at the local, national, and international levels. We affect that goal by outlining a procedural approach to decision-making about the use of the “biotechnology” that goes beyond “community engagement.” The protocol we advocate for entails informed deliberations and decision-making at the community level. It is designed to ensure that the voices of the marginalized and vulnerable groups that would be disproportionately affected by the decision are heard during the community-wide discussions. Moreover, we make the case that the values embedded in the risk assessment should be identified so that the community can make an informed decision about the use of GE insects. In addition, we advocate for the involvement of a variety of actors whose responsibility would be to ensure that the community has the opportunity to make an informed decision based on deliberations about the use of the “biotechnology.”. (shrink)

Many attempts to define privacy have been made over the last century. Early definitions and theories of privacy had little to do with the concept of information and, when they did, only in an informal sense. With the advent of information technology, the question of a precise and universally acceptable definition of privacy in this new domain became an urgent issue as legal and business problems regarding privacy started to accrue. In this paper, I propose a (...) definition of informational privacy that is simple, yet strongly tied with the concepts of information and property. Privacy thus defined is similar to intellectual property and should receive commensurate legal protection. (shrink)

Despite widespread agreement that privacy in the context of education is important, it can be difficult to pin down precisely why and to what extent it is important, and it is challenging to determine how privacy is related to other important values. But that task is crucial. Absent a clear sense of what privacy is, it will be difficult to understand the scope of privacy protections in codes of ethics. Moreover, privacy will inevitably conflict with (...) other values, and understanding the values that underwrite privacy protections is crucial for addressing conflicts between privacy and institutional efficiency, advising efficacy, vendor benefits, and student autonomy. -/- My task in this paper is to seek a better understanding of the concept of privacy in institutional research, canvas a number of important moral values underlying privacy generally (including several that are explicit in the AIR Statement), and examine how those moral values should bear upon institutional research by considering several recent cases. (shrink)

This paper is an overview about the state of privacy and power shifts during the pandemic, and the privacy challenges ahead.

In this paper I argue that the extent to which a human trait is genetically caused can causally depend upon whether the trait is categorized within human genetics as genetically caused. This makes the kind genetically caused trait an interactive kind. I demonstrate that this thesis is both conceptually coherent and empirically plausible. I outline the core rationale of this thesis and demonstrate its conceptual coherence by drawing upon Waters’ (2007) analysis of genetic causation. I add empirical plausibility to (...) the thesis by describing a hypothetical but empirically plausible mechanism by which the fact that obesity is categorized as genetically caused within human genetics increases the extent to which obesity is in fact genetically caused. (shrink)

The prospect of human genetic enhancement requires an institutional response, and probably the creation of new institutions. The governance of genetic enhancement technologies, moreover, needs to be global in scope. In this article, I analyze the debate on the global governance of human genetic enhancement. I begin by offering a philosophical justification for the need to adopt a global framework for governance of technologies that would facilitate the improvement of non-pathological genetic traits. I then summarize the (...) main concrete proposals that have recently emerged to govern genome editing at the global level. Finally, I develop some impediments that limit the impetus for global governance of genetic enhancement. (shrink)

Two families of mathematical methods lie at the heart of investigating the hierarchical structure of genetic variation in Homo sapiens: /diversity partitioning/, which assesses genetic variation within and among pre-determined groups, and /clustering analysis/, which simultaneously produces clusters and assigns individuals to these “unsupervised” cluster classifications. While mathematically consistent, these two methodologies are understood by many to ground diametrically opposed claims about the reality of human races. Moreover, modeling results are sensitive to assumptions such as preexisting theoretical commitments (...) to certain linguistic, anthropological, and geographic human groups. Thus, models can be perniciously reified. That is, they can be conflated and confused with the world. This fact belies standard realist and antirealist interpretations of “race,” and supports a pluralist conventionalist interpretation. (shrink)

Disputes at the intersection of national security, surveillance, civil liberties, and transparency are nothing new, but they have become a particularly prominent part of public discourse in the years since the attacks on the World Trade Center in September 2001. This is in part due to the dramatic nature of those attacks, in part based on significant legal developments after the attacks (classifying persons as “enemy combatants” outside the scope of traditional Geneva protections, legal memos by White House counsel providing (...) rationale for torture, the USA Patriot Act), and in part because of the rapid development of communications and computing technologies that enable both greater connectivity among people and the greater ability to collect information about those connections. -/- One important way in which these questions intersect is in the controversy surrounding bulk collection of telephone metadata by the U.S. National Security Agency. The bulk metadata program (the “metadata program” or “program”) involved court orders under section 215 of the USA Patriot Act requiring telecommunications companies to provide records about all calls the companies handled and the creation of database that the NSA could search. The program was revealed to the general public in June 2013 as part of the large document leak by Edward Snowden, a former contractor for the NSA. -/- A fair amount has been written about section 215 and the bulk metadata program. Much of the commentary has focused on three discrete issues. First is whether the program is legal; that is, does the program comport with the language of the statute and is it consistent with Fourth Amendment protections against unreasonable searches and seizures? Second is whether the program infringes privacy rights; that is, does bulk metadata collection diminish individual privacy in a way that rises to the level that it infringes persons’ rights to privacy? Third is whether the secrecy of the program is inconsistent with democratic accountability. After all, people in the general public only became aware of the metadata program via the Snowden leaks; absent those leaks, there would have not likely been the sort of political backlash and investigation necessary to provide some kind of accountability. -/- In this chapter I argue that we need to look at these not as discrete questions, but as intersecting ones. The metadata program is not simply a legal problem (though it is one); it is not simply a privacy problem (though it is one); and it is not simply a secrecy problem (though it is one). Instead, the importance of the metadata program is the way in which these problems intersect and reinforce one another. Specifically, I will argue that the intersection of the questions undermines the value of rights, and that this is a deeper and more far-reaching moral problem than each of the component questions. (shrink)

Using the two cases of the Icelandic Health Sector Database and Russian initiatives in biobanking, the article criticizes the view of narratives and imaginaries as a sufficient and unproblematic means of shaping public understanding of genetics and justifying population-wide projects. Narrative representations of national biobanking engage particular imaginaries that are not bound by the universal normative framework of human rights, promote affective thinking, distract the public from recognizing and discussing tangible ethical and socioeconomic issues, and harm trust in science and (...) technology. In the Icelandic case, the presentation of the project in association with national imaginaries concealed its market identity and could lead to the commodification of biodata. In the Russian case, framing in terms of "genetic sovereignty" and "civilizational code" offers pretexts for state securitization. Adherence to normative framework of human rights and public discussion of genetics in an argumentative and factual mode can counter these trends. (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)

The article proposes to further develop the ideas of the Extended Evolutionary Synthesis by including into evolutionary research an analysis of phenomena that occur above the organismal level. We demonstrate that the current Extended Synthesis is focused more on individual traits (genetically or non-genetically inherited) and less on community system traits (synergetic/organizational traits) that characterize transgenerational biological, ecological, social, and cultural systems. In this regard, we will consider various communities that are made up of interacting populations, and for which the (...) individual members can belong to the same or to different species. Examples of communities include biofilms, ant colonies, symbiotic associations resulting in holobiont formation, and human societies. The proposed model of evolution at the level of communities revises classic theorizing on the major transitions in evolution by analyzing the interplay between community/social traits and individual traits, and how this brings forth ideas of top-down regulations of bottom-up evolutionary processes (collaboration of downward and upward causation). The work demonstrates that such interplay also includes reticulate interactions and reticulate causation. In this regard, we exemplify how community systems provide various non-genetic ‘scaffoldings’, ‘constraints’, and ‘affordances’ for individual and sociocultural evolutionary development. Such research complements prevailing models that focus on the vertical transmission of heritable information, from parent to offspring, with research that instead focusses on horizontal, oblique and even reverse information transmission, going from offspring to parent. We call this reversed information transfer the ‘offspring effect’ to contrast it from the ‘parental effect’. We argue that the proposed approach to inheritance is effective for modelling cumulative and distributed developmental process and for explaining the biological origins and evolution of language. (shrink)

The cumulative impact of enhancement technologies may alter the human species in the very long-term future. In this article, I will start showing how radical genetic enhancements may accelerate the conversion into a novel species. I will also clarify the concepts of ‘biological species’, ‘transhuman’ and ‘posthuman’. Then, I will summarize some ethical arguments for creating a transhuman or posthuman species with a substantially higher level of well-being than the human one. In particular, I will present what I shall (...) call the Principle of the Best Interests of Posthumanity, which states that the enhancement of the human and transhuman species must be directed towards the creation of a posthuman existence that is substantially more valuable than its predecessors. I suggest that human extinction may be considered, within that principle, as one of the best interests of posthumanity. Finally, I will develop three objections that make that principle unattractive and that show that pursuing a full-blown programme of posthuman evolution is ethically flawed. (shrink)

How we ought to diagnose, categorise and respond to spectrum disabilities such as autism and Attention Deficit/Hyperactivity Disorder (ADHD) is a topic of lively debate. The heterogeneity associated with ADHD and autism is described as falling on various continua of behavioural, neural, and genetic difference. These continua are varyingly described either as extending into the general population, or as being continua within a given disorder demarcation. Moreover, the interrelationships of these continua are likewise often vague and subject to diverse (...) interpretations. -/- In this paper, I explore geneticists' and self-advocates’ perspectives concerning autism and ADHD as continua. These diagnoses are overwhelmingly analysed as falling on a continuum or continua of underlying traits, which supports the notion of “the neurodiversity spectrum”, i.e., a broader swath of human neural and behavioural diversity on which some concentrations of different functioning are diagnosed. I offer a taxonomy of conceptions of the genetic, phenotypic, and endophenotypic dimensionality within and beyond these diagnostic categories, and suggest that the spectrum of neurodiversity is characteristically endophenotypic. (shrink)

Current technology and surveillance practices make behaviors traceable to persons in unprecedented ways. This causes a loss of anonymity and of many privacy measures relied on in the past. These de facto privacy losses are by many seen as problematic for individual psychology, intimate relations and democratic practices such as free speech and free assembly. I share most of these concerns but propose that an even more fundamental problem might be that our very ability to act as autonomous (...) and purposive agents relies on some degree of privacy, perhaps particularly as we act in public and semi-public spaces. I suggest that basic issues concerning action choices have been left largely unexplored, due to a series of problematic theoretical assumptions at the heart of privacy debates. One such assumption has to do with the influential conceptualization of privacy as pertaining to personal intimate facts belonging to a private sphere as opposed to a public sphere of public facts. As Helen Nissenbaum has pointed out, the notion of privacy in public sounds almost like an oxymoron given this traditional private-public dichotomy. I discuss her important attempt to defend privacy in public through her concept of ‘contextual integrity.’ Context is crucial, but Nissenbaum’s descriptive notion of existing norms seems to fall short of a solution. I here agree with Joel Reidenberg’s recent worries regarding any approach that relies on ‘reasonable expectations’ . The problem is that in many current contexts we have no such expectations. Our contexts have already lost their integrity, so to speak. By way of a functional and more biologically inspired account, I analyze the relational and contextual dynamics of both privacy needs and harms. Through an understanding of action choice as situated and options and capabilities as relational, a more consequence-oriented notion of privacy begins to appear. I suggest that privacy needs, harms and protections are relational. Privacy might have less to do with seclusion and absolute transactional control than hitherto thought. It might instead hinge on capacities to limit the social consequences of our actions through knowing and shaping our perceptible agency and social contexts of action. To act with intent we generally need the ability to conceal during exposure. If this analysis is correct then relational privacy is an important condition for autonomic purposive and responsible agency—particularly in public space. Overall, this chapter offers a first stab at a reconceptualization of our privacy needs as relational to contexts of action. In terms of ‘rights to privacy’ this means that we should expand our view from the regulation and protection of the information of individuals to questions of the kind of contexts we are creating. I am here particularly interested in what I call ‘unbounded contexts’, i.e. cases of context collapses, hidden audiences and even unknowable future agents. (shrink)