In this paper, I discuss a subset of preferences in which a person desires the fulfillment of a choice they have made, even if it involves the violation of their desires, as in rape fantasies. I argue that such cases provide us with a unique insight into personal autonomy from a proceduralist standpoint. In its first part, I analyze some examples in light of Frankfurt's endorsement theory and argue that even when we cannot endorse a practical decision that involves being (...) violated, we nonetheless regard those cases as instances of autonomy. Therefore, autonomy does not necessarily require endorsement. Instead, I propose that the nature of the relevant highest-order volition dictates the procedure that should be established in one’s desire structure for its fulfillment. In the second part, I discuss how an agent may effectively consent to the violation of their decision by another person. Ordinary consent typically refers to actions but fails to communicate one's higher-order desires or commitments. To address this limitation, I propose a practical tool that accomplishes this by signaling shifts in the normative context where the agents are interacting. (shrink)

In recent years, an old challenge to informed consent has been rediscovered: the challenge of ignorance. Several authors argue that due to the presence of irreducible ignorance in certain treatments, giving informed consent to these treatments is not possible. The present paper examines in what ways ignorance is believed to prevent informed consent and which treatments are affected by that. At this, it becomes clear that if the challenge of ignorance truly holds, it poses a major problem to informed consent. (...) The paper argues, however, that from both an empirical and a theoretical point of view, it is not convincing that ignorance prevents informed consent. Still, it seems important that the presence of irreducible ignorance is openly discussed during the informed consent process. (shrink)

A complete theory of the permissibility of sex must not only determine the permissibility of sex between typical adult humans. In addition, it must also adequately take into consideration sex acts involving non-human animals, children, and humans with intellectual disabilities. However, when trying to develop a non-discriminatory account that includes these beings, two worrying problems of animal sex arise. To surpass them, I argue for a reformulation of the standard theory. To produce a truly inclusive account our theory should be (...) focused on assent, dissent, the significance of sex, and the similarity of the beings engaging in the sex act. (shrink)

This paper aims to outline the foundations for an ethics of digital touch. Digital touch refers to hardware and software technologies, often collectively referred to as ‘haptics’, that provide somatic sensations including touch and kinaesthesis, either as a stand-alone interface to users, or as part of a wider immersive experience. Digital touch has particular promise in application areas such as communication, affective computing, medicine, and education. However, as with all emerging technologies, potential value needs to be considered against potential risk. (...) We therefore identify some areas where digital touch raises ethical concerns, and we identify why these concerns arise, based on the distinctive physiological and functional properties of the human somatosensory system. Most scientific research in digital touch has focused on user interaction with external objects (active touch). However, the most pressing ethical concerns with digital touch technologies arise when users are being passively touched. Our analysis identifies several important questions about control, transparency, and epistemic procedure in digital touch scenarios. First, human somatosensation is “always on”, and many digital touch technologies take advantage of this (e.g., alerting systems). As a result, digital touch technologies can undermine individuals’ sensory autonomy (i.e., the right to choose what sensations one experiences). Second, users may reasonably want to know who or what is touching them, and for what purpose. Consent for digital touch will therefore need to be carefully and transparently transacted. Third, because touch gives us a special, direct experience of interacting with our physical environment, digital touch technologies that manipulate this interaction could potentially provide a major epistemic challenge, by changing a user’s basic understanding of reality and their relation to it. Informed by this discussion, we conclude by suggesting a basis for an ethical design framework for digital touch systems. (shrink)

Children conceived in order to donate biological material to save the life of an already existing child are known as 'saviour siblings'. The primary reasons that have been offered against the practice are: (i) creating a saviour sibling has negative impacts on the created child and (ii) creating a saviour child represents a wrongful procreative motivation of the parents. In this paper we examine to what extent the creation of saviour siblings actually presents a special case in procreative ethics. Although (...) we do not deny that there is a unique feature present in the saviour sibling case—namely, that the child was created to save their sibling’s life, we argue that the distinctive feature of being a saviour sibling does not make the procreative act wrong. Our claim is that the features that would make the creation of a particular saviour sibling (im)permissible are the same features that would make the creation of any child (im)permissible. Our conclusion is that saviour siblings—in relation to the reasons for the (im)permissibility of their creation—are not a special case for procreative ethics. (shrink)

All societies have to balance privacy claims with other moral concerns. However, while some concern for privacy appears to be a common feature of social life, the definition, extent and moral justifications for privacy differ widely. Are there better and worse ways of conceptualising, justifying, and managing privacy? These are the questions that lie in the background of this thesis. -/- My particular concern is with the ethical issues around privacy that are tied to the rise of new information and (...) communication technologies (henceforth “ICT”). The focus here is on technologies involved in processing personal data in its broadest sense, including “any operation or set of operations which is performed on personal data or on sets of personal data, whether or not by automated means, such as collection, recording, organisation, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction.” The issue of moral concern is commonly designated as that of 'data privacy'. -/- The first step is to consider why privacy matters, or ought to matter, in the first place. And here we run into our first difficulty, since both the conceptualisation of privacy and the justification for the right to privacy are matters for contention. On the one hand, we are animated by a moral concern for privacy in some sense; on the other, we lack the conceptual and moral resources for making sense of this concern or for promoting particular social policies and criticising others. This often-cited dichotomy and its ensuing confusion have been the central motivation for most of the philosophical literature on privacy – including this thesis. -/- In what follows, I will suggest a way out of the confusion that pervades the current debate on data privacy. I will essentially argue two claims: one, that the concept of (data) privacy is uniquely characterised by a particular context within which we exchange information; two, that because (data) privacy constitutes an intrinsic value, its moral concerns and justifications ought to be deliberated as such. -/- The first chapter sketches the current data privacy landscape by introducing a number of concepts and arguing the unique nature of the landscape. I argue that the traditional distinction between four kinds of privacy (physical, mental, decisional and informational) is no longer accurate, given the technological context that reduces, unifies and processes all aspects of people’s lives by means of digital data. In fact, to hold on to the distinction leads to a fundamental misconception of data privacy. I further argue that today’s distinction between data protection and data privacy runs the risk of ignoring the fact that the former is an inherent aspect of the latter. These arguments allow me to settle on a (provisional) definition of data privacy: controlling how data about identifiable people is processed by ICT. -/- Next, I draw a line between descriptive and normative accounts of data privacy, and explain why this book belongs to the latter category. After a brief discussion of the coherence and distinctiveness theses, and of the difference between instrumental and intrinsic theories of privacy, I introduce the problem of data privacy as a distinct, coherent, and intrinsic moral concern. Three arguments support this position: one, data privacy is a coherent moral concern because it is motivated by a singular moral concept; two, data privacy is a distinct moral concern because the privacy challenges we face today are of a fundamentally new nature – distinct from any moral concerns we’ve faced in the past; and three, data privacy is an intrinsic moral concern that is predominantly justified, not by what it instrumentally protects us from, but by what it intrinsically constitutes. -/- Chapter Two makes the case against a harm-based, consequentialist approach to data privacy. After a brief introduction to the basic tenets of consequentialism I discuss harm-based arguments in favour as well as against privacy. I explain how privacy may protect us against psychological distress, but at the same time constitute the source of that distress; how privacy may be necessary for the proper functioning of democratic societies, but at the same time provide a cloak for anti-social and immoral behaviour; and how privacy protects us against the improper use of our personal data by others, but at the same enables us to conceal information or spread false information about ourselves in ways that are harmful to others. Next, I argue that consequentialism essentially relies on two flawed presumptions – that we know what harm is, and that we know how to predict it – and discuss the controversies surrounding definitions and predictions of harm. This argument becomes especially pertinent in today’s rapidly changing technological context: we may guess, and make assumptions, perhaps even find correlations, but don’t really know or understand (yet) with any degree of certainty the harmful consequences today’s data privacy violations are causing or will eventually cause – if any. -/- I illustrate this with examples of recent data privacy violations, and with a brief overview of consequentialist arguments for and against data privacy. Those who invoke consequentialist arguments against data privacy claim that personal data is nothing more than a raw material that can be turned into something useful and valuable without harming anyone. Choosing to move fast and break things – a popular mantra that promotes the benefits of technological “permissionless innovation” over and above its risks and costs – they draw our attention to the many benefits free data flows generate. Those who rely on consequentialist arguments in favour of data privacy, on the other hand, insist on actual and potential misuse of personal data. Rather careful than sorry, they draw our attention to the urgent need to take back control and protect ourselves against data privacy violations – precisely because we don’t know which harm they may cause in the future. Others go one step further and argue that these violations are part of a broader ideology of power. -/- What Chapter Two demonstrates is that vague definitions, unreliable predictions and inconclusive allegations of harm from both sides of the debate perpetuate a stalemate that fails to produce morally defensible answers to our growing data privacy concerns. Deliberating about data privacy from a consequentialist perspective is a dead end. -/- Chapter Three proposes an alternative to the harm-based approach, namely that privacy is an intrinsic value that deserves moral protection for its own sake. After a brief account of what I take values to be, and why we have a need to protect them, I introduce the foundational value of respect for persons, and lay out my main argument in two steps. The conceptual component of my argument returns to the definition of data privacy I had temporarily settled on in Chapter One, but now with the added consideration of the particular context, and particular circumstances and attitudes, within which information is exchanged. This addition is crucial, as it reveals the fundamental value that is at stake in our data privacy concerns, namely the inherent value of each and every person, which we protect by upholding an ethical principle commonly known as the principle of respect for persons. It is for this reason that the violation of privacy cannot (only) be expressed in terms of harm. I further argue that the principle of respect for persons is consistent with, and in fact unthinkable without, some degree of privacy. -/- I reply to potential challenges to a value-based approach to data privacy by showing that (i) values and value trade-offs are fundamentally different from consequential benefits and cost-benefit analyses; (ii) the suspension of one value in favour of another is not inherently contradictory; what matters is morally defensible deliberation about values and valid individual consent; (iii) data privacy concerns cannot be reduced to other moral concerns and therefore deserve a specific, distinct protection. -/- Finally, because this is a thesis in applied ethics, I attempt an answer to the question as to how we ought to apply a value-based approach to practical data privacy concerns. I argue that a revised, three-pronged version of John Rawls’ reflective equilibrium, founded on the non-negotiable principle of respect for persons, is the best possible procedure to deliberate data privacy concerns in relation to other moral values. (shrink)

Scientists have the ability to influence policy in important ways through how they present their results. Surprisingly, existing codes of scientific ethics have little to say about such choices. I propose that we can arrive at a set of ethical guidelines to govern scientists’ presentation of information to policymakers by looking to bioethics: roughly, just as a clinician should aim to promote informed decision-making by patients, a scientist should aim to promote informed decision-making by policymakers. Though this may sound like (...) a natural proposal, I show it offers guidance that conflicts with standard scientific practices. I conclude by considering one cost of the proposal: that it would prevent scientists from acting as advocates in a way that is currently common in certain fields. I accept that the proposal would restrict scientists’ political advocacy rights, but argue that the benefits of adopting it — promoting democratic governance — justify the restriction. (shrink)

The notion of authenticity, i.e., being “genuine,” “real,” or “true to oneself,” is sometimes held as critical to a person’s autonomy, so that inauthenticity prevents the person from making autonomous decisions or leading an autonomous life. It has been pointed out that authenticity is difficult to observe in others. Therefore, judgments of inauthenticity have been found inadequate to underpin paternalistic interventions, among other things. This article delineates what justifies judgments of inauthenticity. It is argued that for persons who wish to (...) live according to the prevailing social and moral standards and desires that are seriously undesirable according to those standards, it is justified to judge that a desire is inauthentic to the extent that it is due to causal factors that are alien to the person and to the extent that it deviates from the person’s practical identity. The article contributes to a tradition of thinking about authenticity which is known mainly from Frankfurt and Dworkin, and bridges the gap between theoretical ideals of authenticity and real authenticity-related problems in practical biomedical settings. (shrink)

This article is about the role of factual uncertainty for moral decision-making as it concerns the ethics of machine decision-making. The view that is defended here is that factual uncertainties require a normative evaluation and that ethics of machine decision faces a triple-edged problem, which concerns what a machine ought to do, given its technical constraints, what decisional uncertainty is acceptable, and what trade-offs are acceptable to decrease the decisional uncertainty.

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

Although informed consent is important in clinical research, questions persist regarding when it is necessary, what it requires, and how it should be obtained. The standard view in research ethics is that the function of informed consent is to respect individual autonomy. However, consent processes are multidimensional and serve other ethical functions as well. These functions deserve particular attention when barriers to consent exist. We argue that consent serves seven ethically important and conceptually distinct functions. The first four functions pertain (...) principally to individual participants: (1) providing transparency; (2) allowing control and authorization; (3) promoting concordance with participants' values; and (4) protecting and promoting welfare interests. Three other functions are systemic or policy focused: (5) promoting trust; (6) satisfying regulatory requirements; and (7) promoting integrity in research. Reframing consent around these functions can guide approaches to consent that are context sensitive and that maximize achievable goals. (shrink)

Are mandatory lockdown measures, which place restrictions on one’s freedom to move and assemble, justifiable? Offhand, such measures appear to compromise important rights to secure goals of public health. Proponents of such measures think the trade-off is worth it; opponents think it isn’t. However, one might think that casting the debate in these terms concedes too much to the opponents. Mandatory lockdown measures don’t infringe important rights because no one has a right to impose a risk of grievous harm on (...) others—and, in the context of a pandemic, participating in the prohibited activities (e.g., going out to the bar) does just that. -/- This chapter explores whether this defense of mandatory lockdown measures holds up. It, first, considers whether we have a right against risk imposition—and, if so, how such a right is best understood. It then considers the objection that, even if there is such a right, people who voluntarily choose to engage in the prohibited activities—at least if fully appraised of the risks involved—effectively waive it. The chapter argues that this objection fails. (shrink)

Following the recent practice turn in privacy research, informational privacy is increasingly analyzed with regard to the “appropriate flow of information” within a given practice, which preserves the “contextual integrity” of that practice (Nissenbaum, 2010, p. 149; 2015). Such a practice-theoretical take on privacy emphasizes the normative structure of practices as well as its structural injustices and power asymmetries, rather than focusing on the intentions and moral considerations of individual or institutional actors. Since privacy norms are seen to be institutionalized (...) via the role obligations of the practice's participants, this approach can analyze structural and systematic privacy infringements in terms of “defective role performances and defective social relations” (Roessler & Mokrosinska, 2013, p. 780). -/- Unfortunately, it is still often somewhat unclear what this exactly means within the context of informational privacy, why these performances and relations are defective and for whom. This raises the common objection of a so-called “practice positivism” (Applbaum, 1999, p. 51), that is, the difficulty of practice–theoretical accounts to take a practice-independent standpoint, from which to normatively evaluate the existing practice norms themselves. For example, Nissenbaum herself initially argues for a “presumption in favor of the status quo” with respect to the appropriateness and flow of privacy norms within a practice (Nissenbaum, 2004, p. 127). Such a “practice conservatism” (Nissenbaum, 2010, p. 169) comes dangerously close to committing a naturalistic fallacy, if not undergirded by practice-external criteria (which is ultimately what she does). -/- Merely resorting to existing practice norms to assess what defective role performances amount to, only shifts the question from how to recognize an appropriate flow of information to the question of how to recognize those defective role performances and social relations. Against this backdrop, the central aim of this article is to shed light on this question without resorting to practice-independent first principles or far-reaching universalistic anthropological assumptions. For this, I will analyze the notion of “defective role performances and social relations” in terms of social pathologies.1 Doing so has two advantages: First of all, it can draw on already existing concepts and distinctions, which help to categorize the different levels of analysis that exist in informational privacy research and situate the notion of “defective role performances” within them (Section 1). Second, those concepts and distinctions can serve as a basis for establishing a typology of phenomena with regard to deficient practices of informational privacy (Section 4). (shrink)

It is sometimes argued that autonomous decision-making requires that the decision-maker’s desires are authentic, i.e., “genuine,” “truly her own,” “not out of character,” or similar. In this article, it is argued that a method to reliably determine the authenticity (or inauthenticity) of a desire cannot be developed. A taxonomy of characteristics displayed by different theories of authenticity is introduced and applied to evaluate such theories categorically, in contrast to the prior approach of treating them individually. The conclusion is drawn that, (...) in practice, the authenticity of desires cannot be reliably determined. It is suggested that authenticity should therefore not be employed in informed consent practices in healthcare. (shrink)

DeMarco and colleagues present a compelling method of dealing with medical risks for which there is equipoise which might be implicated in a given research protocol. This commentary examines how the proposed model should inform the disclosure of other, non-medical risks. Since equipoise is a fairly unclear notion for non-medical risks (since there is little sense of professional uncertainty regarding these risks), this could lead to the inclusion of nearly unlimited non-medical risks. To account for these risks more reasonably, I (...) will argue that a strong participant-researcher relationship is vital to determine if there are any particular non-medical risks that might be uncertainly implicated in a given research program. (shrink)

So-called digital tracking and tracing systems have been proposed as a means to prevent the spread of SARS-CoV-2. There are ethical guidelines and evaluations of such systems available. As part of a research project, I will build on and critically evaluate the foundations of such guidelines. The goal is to provide both incremental improvements of the specific requirements for DTTSs and to present and discuss more fundamental challenge, the risk for indirect effects and slippery slopes. The nature of slippery slopes (...) makes ethical guidelines more difficult since it requires a more complex analysis than, for example, using a checklist allows for. (shrink)

Informed consent is normally understood as something that a patient gives prior to a medical intervention that can render it morally permissible. Whether or not it must be given prior to the intervention is debated. Some have argued that subsequent consent—that is, consent given after a medical intervention—can also render an otherwise impermissible act permissible. If so, then a patient may give her consent to an intervention that has already been performed and thereby justify a physician’s act retroactively. The purpose (...) of this paper is to argue that even if subsequent consent can render an otherwise impermissible act permissible, doctors are still blameworthy if they rely on it when prior consent could be given, because they would be banking on the justification of their interventions. Since doctors can only guess if patients will consent after the fact, they would be placing their patients at unreasonable risk of being disrespected as persons. (shrink)