Aldous Huxley’s Brave New World is a famous dystopia, frequently called upon in public discussions about new biotechnology. It is less well known that 30 years later Huxley also wrote a utopian novel, called Island. This paper will discuss both novels focussing especially on the role of psychopharmacological substances. If we see fiction as a way of imagining what the world could look like, then what can we learn from Huxley’s novels about psychopharmacology and how does that relate to the (...) discussion in the ethical and philosophical literature on this subject? The paper argues that in the current ethical discussion the dystopian vision on psychopharmacology is dominant, but that a comparison between Brave New World and Island shows that a more utopian view is possible as well. This is illustrated by a discussion of the issue of psychopharmacology and authenticity. The second part of the paper draws some further conclusions for the ethical debate on psychopharmacology and human enhancement, by comparing the novels not only with each other, but also with our present reality. It is claimed that the debate should not get stuck in an opposition of dystopian and utopian views, but should address important issues that demand attention in our real world: those of evaluation and governance of enhancing psychopharmacological substances in democratic, pluralistic societies. (shrink)

Der Beitrag analysiert Techniken öffentlicher Gesundheitskommunikation und skizziert im Ausblick Minimalbedingungen für ihre ethische Vertretbarkeit. Dazu wird erstens an einem aktuellen Beispiel veranschaulicht, wie mittels Text und Bild die Öffentlichkeit überzeugt werden soll, ein bestimmtes Gesundheitsverhalten an den Tag zu legen. Zweitens werden anhand der internationalen Ethik-Debatte fünf Grundtypen von Techniken in der Gesundheitskommunikation (Information, Argumentation, Persuasion, Manipulation und Zwang) rekonstruiert und entlang von Mittel, Zweck, Folgen für Adressaten sowie Implikationen für Autonomie aus ethischer Sicht unterschieden. Am besonders ambivalenten Beispiel (...) der Persuasion wird dann drittens diskutiert, welche ethischen Fallstricke es bei Gesundheitskommunikation zu bedenken gibt. Schließlich zeigen wir argumentativ auf, dass es in sensiblen bioethischen Themenfeldern wichtig ist, zwischen verschiedenen Techniken der Gesundheitskommunikation analytisch zu differenzieren. Ziel sollte die Ermöglichung einer fairen und transparenten Diskussion für breite Bevölkerungsgruppen sein. (shrink)

This is a selective reading of Love's Labor: Essays on Women, Equality, and Dependency. My aim is twofold: to continue Love Labor's focus on dependency work and relations, adding certain distinctions and questions of my own; and to recognize the conjunction of three perspectives-theoretical, social/political, and personal-that strengthen this focus. I scant particulars of argument and ignore certain issues in the hope of providing a vivid outline of the rewards and demands of dependency as Eva Kittay envisions them.

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity (...) is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

Biomedical innovations are making possible the enhancement of human capabilities. There are two philosophical stances on the role that medicine should play in this respect. On the one hand, naturalism rejects every medical intervention that goes beyond preventing and treating disease. On the other hand, welfarism advocates enhancements that foster subjective well-being. We will show that both positions have considerable shortcomings. Consequently, we will introduce a third characterization in which therapies and enhancements can be reconciled with the legitimate objectives of (...) medicine inasmuch as they improve the capabilities that enable the freedom to pursue personal well-being. (shrink)

This is a selective reading of Love's Labor: Essays on Women, Equality, and Dependency. My aim is twofold: to continue Love Labor's focus on dependency work and relations, adding certain distinctions and questions of my own; and to recognize the conjunction of three perspectives—theoretical, social/political, and personal—that strengthen this focus. I scant particulars of argument and ignore certain issues in the hope of providing a vivid outline of the rewards and demands of dependency as Eva Kittay envisions them.

: The article first develops an account of autonomy, explaining individual autonomy by means of three normative components and then discussing two objections. The first objection claims that autonomy has to be thought of as essentially relational; this objection is refuted. The second objection, labeled the skeptical objection, claims that we simply do not live autonomously, nor could we ever. Reference is made to novels by Iris Murdoch to present a skeptical solution to this objection.

Concern for human vulnerability seems to be at the heart of bioethical inquiry, but the concept of vulnerability is under-theorized in the bioethical literature. The aim of this article is to show why bioethics needs an adequately theorized and nuanced conception of vulnerability. We first review approaches to vulnerability in research ethics and public health ethics, and show that the bioethical literature associates vulnerability with risk of harm and exploitation, and limited capacity for autonomy. We identify some of the challenges (...) emerging from this literature: in particular, how to reconcile universal human vulnerability with a context-sensitive analysis of specific kinds and sources of vulnerability; and how to reconcile obligations to protect vulnerable persons with obligations to respect autonomy. We then briefly survey some of the theoretical resources available within the philosophical literature to address these challenges, and to assist in understanding the conceptual connections between vulnerability and related concepts such as harm, exploitation, needs, and autonomy. We also sketch out a taxonomy of sources and kinds of vulnerability. Finally, we consider the implications for policy evaluation of making vulnerability an explicit and central focus of bioethics. Our investigation is in the form of a broad survey motivating a research agenda rather than a detailed analysis. (shrink)

Debates over how to conceptualize the nursing role were prominent in the nursing literature during the latter part of the twentieth century. There were, broadly, two schools of thought. Writers likeHenderson andOrem used the idea of a self‐care deficit to understand the nurse as doing for the patient what he or she could not do alone. Later writers found this paternalistic and emphasized the importance of the patient's free will. This essay uses the ideas of positive and negative freedom to (...) explore the differing conceptions of autonomy which are implicit in this debate. The notion of positive freedom has often been criticized as paternalistic, and the criticisms of self‐care in the nursing literature echo criticisms from political philosophy. Recent work on relational autonomy and on the relationship between autonomy and identity are used to address these objections. This essay argues for a more nuanced conception of the obligation to support autonomy that includes both positive (freedomto) and negative (freedomfrom) dimensions. This conception of autonomy provides a moral foundation for conceptualizing nursing in something like Henderson's terms: as involving the duty to expand the patient's capacities. The essay concludes by generalizing the lesson. Respect for autonomy on the part of any health care provider requires both respect for the patient's choices and a commitment to expand the patient's ability to actualize their choices. (shrink)

Disclosure in clinical practice is aimed at promoting patient autonomy, usually culminating in patient choice (e.g., to consent to an operation or not, or between different medications). In medical ethics, there is an implicit background assumption that knowing more about (X) automatically translates to greater, or more genuine, autonomy with respect to one's choices involving (X). I challenge this assumption by arguing that in rare cases, withholding information can promote a patient's autonomy (understood as the capacity for rational choice in (...) alignment with one's values and goals). (shrink)

Most accounts of immigration ethics implicitly rely upon neoclassical migration theory, which understands migration as the result of poverty and unemployment in sending countries. This paper argues that neoclassical migration theory assumes an account of the human person as solely an autonomous rational agent which then leads to ethics of migration which overemphasize freedom and self-determination. This tendency to assume that migration works as neoclassical migration theory describes is shared by political philosophers, such as Joseph Carens, Michael Walzer, and David (...) Miller. This paper argues that all three philosophers incorrectly frame migration as a contest between the freedom of the migrant and the communal self-determination of the political community. Migration systems theory is presented as a theory that draws upon a relationally embedded understanding of autonomy in order to begin to develop a migration systems ethics. This paper concludes by arguing that the central ethical category for an ethics of migration is not freedom or self-determination, but justice-in-relation. (shrink)

'Brainjacking’ refers to the exercise of unauthorized control of another’s electronic brain implant. Whilst the possibility of hacking a Brain–Computer Interface (BCI) has already been proven in both experimental and real-life settings, there is reason to believe that it will soon be possible to interfere with the software settings of the Implanted Pulse Generators (IPGs) that play a central role in Deep Brain Stimulation (DBS) systems. Whilst brainjacking raises ethical concerns pertaining to privacy and physical or psychological harm, we claim (...) that the possibility of brainjacking DBS raises particularly profound concerns about individual autonomy, since the possibility of hacking such devices raises the prospect of third parties exerting influence over the neural circuits underpinning the subject’s cognitive, emotional and motivational states. However, although it seems natural to assume that brainjacking represents a profound threat to individual autonomy, we suggest that the implications of brainjacking for individual autonomy are complicated by the fact that technologies targeted by brainjacking often serve to enhance certain aspects of the user’s autonomy. The difficulty of ascertaining the implications of brainjacking DBS for individual autonomy is exacerbated by the varied understandings of autonomy in the neuroethical and philosophical literature. In this paper, we seek to bring some conceptual clarity to this area by mapping out some of the prominent views concerning the different dimension of autonomous agency, and the implications of brainjacking DBS for each dimension. Drawing on three hypothetical case studies, we show that there could plausibly be some circumstances in which brainjacking could potentially be carried out in ways that could serve to enhance certain dimensions of the target’s autonomy. Our analysis raises further questions about the power, scope, and necessity of obtaining prior consent in seeking to protect patient autonomy when directly interfering with their neural states, in particular in the context of self-regulating closed-loop stimulation devices. (shrink)

Ageism within the context of care has attracted increasing attention in recent years. Similarly, autonomy has developed into a prominent concept within health care law and ethics. This paper explores the way that ageism, understood as a set of negative attitudes about old age or older people, may impact on an older person’s ability to make maximally autonomous decisions within health care. In particular, by appealing to feminist constructions of autonomy as relational, I will argue that the key to establishing (...) this link is the concept of self-relations such as self-trust, self-worth and self-esteem. This paper aims to demonstrate how these may be impacted by the internalisation of negative attitudes associated with old age and care. In light of this, any legal or policy response must be sensitive to and flexible enough to deal with the way in which ageism impacts autonomy. (shrink)

This article challenges a key tacit assumption underpinning legal and ethical instruments in health care, namely, that people are ideally bounded, independent, and often also strategically rational individuals. Such an understanding of personhood has been criticized within feminist and other critical scholarship as being unfit to capture the deeply relational nature of human beings. In the field of medicine, however, it also causes tangible problems. I propose that a solidarity-based perspective entails a relational approach and as such helps to formulate (...) new solutions to complex ethical and regulatory questions, ranging from caring for people at the end of their lives to improving policies for organ donation and better governance of health data. It also underscores the importance of universal health care. Although a solidarity-based perspective does not require health to be seen as an individually enforceable right, it does influence our understanding of individual rights: it draws attention to how their meaning is shaped by shared social practices. I conclude by arguing that, in light of current pressures for medicine to become more personalized, using a relational understanding of personhood to shape policies and practices is a much needed endeavor. (shrink)

This paper takes as its starting point a debate between Harry Frankfurt and J. David Velleman. Frankfurt argues that we need to resolve ambivalence since it necessarily threatens autonomy. Velleman challenges this claim, arguing that a desire to resolve ambivalence threatens autonomy when it prompts repression. I argue that the relationship between ambivalence and autonomy is more ambiguous than either theorist tends to acknowledge. In doing so, I recommend three features relevant for assessing whether or not ambivalence threatens autonomy.

There is an urge to introduce high technology and robotics in care settings. Assisted living is the fastest growing form of older adults’ long-term care. Resident autonomy has become the watchword for good care. This article sheds light on the potential effects of care robotics on the sense of autonomy of older people in AL. Three aspects of the residents’ sense of autonomy are of particular interest: interaction-based sense of autonomy, coping-based sense of autonomy, and potential-based sense of autonomy. Ethnographical (...) data on resident autonomy in an AL facility and existing literature on care robots are utilized in studying what kind of assurances different types of robots would provide to maintain the sense of autonomy in AL. Robots could strengthen the different types of sense of autonomy in multiple ways. Different types of robots could widen the residents’ space of daily movements, sustain their capacities, and help them maintain and even create future expectations. Robots may strengthen the sense of autonomy of older persons in AL; however, they may simultaneously pose a threat. Multi-professional discussions are needed on whether robots are welcomed in care, and if they are, how, for whom, and in what areas. (shrink)

(2013). Autonomy and the Normativity Question: Framing Considerations. International Journal of Philosophical Studies. ???aop.label???. doi: 10.1080/09672559.2012.727014.

In this article I discuss the little examined relationship between time and patient autonomy. Using the findings from a study on the experience of premenopausal cancer patients making fertility preservation decisions during their treatment, I focus on how the patients in the study understood time, and how this understanding interacted with and influenced their decision-making. I then analyse in more depth the importance of time in patient decision-making, and the relationship of time to concepts of patient autonomy and decision-making in (...) the field of bioethics more generally. Focusing on the relational conception of autonomy, I conclude that time is an integral part of patient autonomy which warrants further research, such that it can be better integrated into concepts of patient autonomy, and the policy and guidelines that they inform and influence. (shrink)

In this paper, I will argue that there is a deep connection between home-based care, technology, and the self. Providing the means for persons to receive care at home is not merely a kindness that respects their preference to be at home: it is an important means of extending their selfhood and respecting the unique selves that they are. Home-based technologies like telemedicine and robotic care may certainly be useful tools in providing care for persons at home, but they also (...) have important implications for sustaining selfhood in ways that are of value to individuals and those who care for them. I will argue, by appealing to Hilde Lindemann’s notion of “holding” persons’ identities in place, that technological interventions are not only useful tools for improving and sustaining health and good care at home, but that they may also help to extend our personal identities and relational capacities in ways that are practically and ethically good. Because of these important goods, I will claim that there is a prima facie moral duty to do this “holding” work and that it is best done by family members and loved ones who are well suited to the job because of their history and relationship with the individual that needs to be “held” in place. (shrink)

Critiques of the dehumanising aspects of contemporary medical practice have generated increasing interest in the ways in which health care can foster a holistic sense of wellbeing. We examine the relationship between two areas of this humanistic endeavour: narrative and dignity. This paper makes two simple arguments that are intuitive but have not yet been explored in detail: that narrative competence of carers is required for maintaining or recreating dignity, and that dignity promotion in health care practice is primarily narrative (...) in form. The multiple meanings that dignity has in a person’s life are what give the concept power and can only be captured by narrative. This has implications for health care practice where narrative work will be increasingly required to support patient dignity in under-resourced and over-subscribed health care systems. (shrink)

This paper critically examines the extent to which health promoting wearable technologies can provide people with greater autonomy over their health. These devices are frequently presented as a means of expanding the possibilities people have for making healthier decisions and living healthier lives. We accept that by collecting, monitoring, analysing and displaying biomedical data, and by helping to underpin motivation, wearable technologies can support autonomy over health. However, we argue that their contribution in this regard is limited and that—even with (...) respect to their ‘autonomy enhancing’ potential—these devices may deliver costs as well as benefits. We proceed by rehearsing the distinction that can be drawn between procedural autonomy and substantive-relational autonomy. While the information provided by wearable technologies may support deliberation and decision-making, in isolation these technologies do little to provide substantive opportunities to act and achieve better health. As a consequence, wearable technologies risk generating burdens of anxiety and stigma for their users and reproducing existing health inequalities. We then reexamine the extent to which wearable technologies actually support autonomous deliberation. We argue that wearable technologies that subject their users to biomedical and consumerist epistemologies, norms and values also risk undermining processes of genuinely autonomous deliberation. (shrink)

Attention to individual choice is a valuable dimension of public health policy; however, the creation of effective public health programmes requires policy makers to address the material and social structures that determine a person’s chance of actually achieving a good state of health. This statement summarizes a well understood and widely held view within public health practice. In this article, we (i) argue that advocates for public health can and should defend this emphasis on ‘structures’ by reference to citizen autonomy (...) and not simply by emphasizing concern for counter-balancing values such as ‘population health’ or ‘fairness’, (ii) map and critically explore the contrasting conceptions of autonomy that feature in such debates, with particular attention to conceptions of autonomy that might feature in the defence of an emphasis on structures. We draw on (i) a relational conception of autonomy and (ii) the distinction that can be made between autonomous deliberation and autonomous action to suggest that offering people the opportunity to make choices about their health without also supporting their capability to achieve the object of these choices falls short of what is often considered to be morally and politically important about promoting autonomy in relation to health. (shrink)

In Dutch healthcare policy patients are seen as informed, autonomous experts and active decision makers with control over their illness and care. Healthcare professionals are expected to operate as providers of information. The purpose of this article is to argue that the consumerist approach of the patient–professional relationship is not a productive way to envision the patient–professional relationship. We argue that an interpretive/deliberative model is a more productive way to envision this relationship, especially in the care for people with a (...) chronic illness. This is illustrated with a case study. It concerns a study of the experiences of a Multiple Sclerosis (MS) patient and healthcare professionals involved in her care. The presented stories show that the participants did not act in line with the roles and responsibilities embodied in the consumerism rhetoric in Dutch healthcare policy. Expectations of patients and healthcare professionals are better met when care is redefined as mutual endeavour in which the caring abilities of healthcare professionals and the vulnerability of chronically ill patients are taken into account. (shrink)

This article seeks to explore and analyze the relationship between autonomy and trust, and to show how these findings could be relevant to medical ethics. First, I will argue that the way in which so-called “relational autonomy theories” tie the notions of autonomy and trust together is not entirely satisfying Then, I will introduce the so-called Encapsulated Interest Account as developed by Russell Hardin. This will bring out the importance of the reasons for trust. What good reasons do we have (...) for trusting someone? I will criticize Hardin’s business model as insufficiently robust, especially in the context of health care, and then turn to another source of trust, namely, love. It may seem that trust-through-love is much better suited for the vulnerability that is often involved in health care, but I will also show that it has its own deficiencies. Good health care should therefore pay attention to both models of trust, and I will offer some tentative remarks on how to do this. (shrink)

This essay defends a strong right against displacement as part of a basic individual right to secure access to one’s home. The analysis is purposefully situated within the difficult context of climate change adaptation policies. Under increasing environmental pressures, especially regarding water security, there are weighty reasons motivating the forced displacement of persons—to safeguard water resources or prevent water-related disasters. Even in these pressing circumstances, I argue, individuals have weighty rights to secure access to their homes. I explain how the (...) home provides a functional context for conditions of autonomous agency. Being coerced from the home disrupts and subverts the conditions necessary for autonomous processes. I conclude by suggesting that the right to the home could be a foundational element of territorial rights. (shrink)

Trust has generally been understood as an intentional mental phenomenon that one party has towards another party with respect to some object of value for the truster. In the landmark work of Annette Baier, this trust is described as a three-place predicate: A entrusts B with the care of C, such that B has discretionary powers in caring for C. In this paper we propose that, within the context of thick interpersonal relationships, trust manifests in a different way: as a (...) property of the relationship itself. We argue that this conceptualization has important implications for the debate over the ethics of interpersonal interventions. In particular, when trust is understood in this way, actions that would otherwise be deemed morally troubling may be permissible, or even morally desirable, on account of their role in strengthening trusting relationships. (shrink)

Advances in psychology and neuroscience have elucidated the social aspects of human agency, leading to a broad shift in our thinking about fundamental concepts such as autonomy and responsibility. Here, we address a critical aspect of this inquiry by investigating how people consider the socio-relational nature of their own agency, particularly the influence of others on their perceived control over their decisions and actions. Specifically, in a series of studies using contrastive vignettes, we examine public attitudes about when external influences (...) on everyday decisions are perceived as " undue " – that is, as undermining the control conditions for these decisions to be considered autonomous – vs. when they are perceived as appropriate and even supportive of autonomous decision-making. We found that the influence of preauthorized agents – individuals and institutions with whom we share a worldview – was judged to be less undue than non-preauthorized agents, even after controlling for the familiarity of the agent. These effects persisted irrespective of the extent to which respondents identified as communitarian or individualistic, and were consistent across two distinct scenarios. We also found that external influences that were rational were perceived as less undue than those that were arational. Our study opens new avenues of inquiry into the " folk conception " of autonomy, and we discuss the implications of our findings for the ethics of public policies designed to influence decisions and for information sharing in social networks. (shrink)

Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. These emphasize increasing organizational flexibility, (...) knowledge, and capacity, and reducing hazard. (shrink)

This paper argues for a conception of autonomy that takes social oppression seriously without sapping autonomy of its valuable focus on individual self-direction. Building on recent work in relational accounts of autonomy, the paper argues that current conceptions of autonomy from liberal, feminist and critical theorists do not adequately account for the social features of belief formation. The paper then develops an alternative conception of relational autonomy that focuses on how autonomy contains both individualistic and social epistemic features. Rather than (...) consider autonomy to reside in an impenetrable inner citadel, a place immune from external influences, the paper argues that we must acknowledge the hermeneutic relationship between individual and social processes of belief adjudication. Taking such an argument seriously results in the need to alter our conception of autonomy and the schooling needed to foster its growth. (shrink)

Many commentators have contrasted the way that sociability is theorized in the writings of Mary Astell and Damaris Masham, emphasizing the extent to which Masham is more interested in embodied, worldly existence. I argue, by contrast, that Astell's own interest in imagining a constitutively relational individual emerges once we pay attention to her use of religious texts and tropes. To explore the relevance of Astell's Christianity, I emphasize both how Astell's Christianity shapes her view of the individual's relation to society (...) and how Masham's contrasting views can be analyzed through the lens of her charge that Astell is an “enthusiast.” In late seventeenth-century England, “enthusiasm” was a term of abuse that, commentators have recently argued, could function polemically to dismiss those deemed either excessively social or antisocial. By accusing Astell of enthusiasm, I claim, Masham seeks to marginalize the relational self that Astell imagines and to promote a more instrumental view of social ties. I suggest some aspects of Astell's thought that may have struck contemporaries as “enthusiastic” and contrast her vision of the self with Masham's more hedonistic subject. I conclude that, although each woman differently configures the relation between self and society, they share a desire to imagine autonomy within a relational framework. (shrink)

Because no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes. Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others brings them closer to the research but also brings the research closer (...) to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users. In practice, engagement faces numerous challenges and is often time-consuming, expensive and ‘thorny’ work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, “How could it be otherwise?” ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of ‘keeping open’ the possible considerations that might emerge and including reflexive use of qualitative analytic methods. This paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to ‘open up’ engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: engagement and knowledge exchange; analysis of mindmap contributions; development of a conceptual schema ; and feedback, refinement and development of recommendations. ECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it. (shrink)

Obesity is a public health problem influenced by behavioral patterns that span an ecological spectrum of individual-level factors, social network factors and environmental factors. Both individual and environmental approaches necessarily include significant influences from social networks, but how and under what conditions social networks influence behavior change is often not clearly mapped out either in the obesity literature or in many intervention designs. In this paper, we provide an analysis of recent empirical work in obesity research that explicates social network (...) influences on eating behaviors. We argue that a relational rather than individualistic view of personhood should help us better understand the content and context of social network relations that inform health behavior choices. We introduce the concept of ‘identity-constitutive affiliations’ as the glue that binds these social relationships together. Finally, we outline the implications for public health ethics in the development of effective interventions to address overweight and obesity, leveraging the content and context of social network ties to reinforce healthy (or alter unhealthy) eating. More complex treatment of positive and negative behaviors stemming from social network connections should lead to more comprehensive theoretical models of health behavior change and more effective public health interventions. (shrink)

The discussion of the nature and value of dignity in and for bioethics concerns not only the importance of the concept but also the aims of bioethics itself. Here, I challenge the claim that the concept of dignity is useless by challenging the implicit conception of usefulness involved. I argue that the conception of usefulness that both opponents and proponents of dignity in bioethics adopt is rooted in a narrow understanding of the role of normative theory in practical ethical thinking. (...) I then offer an alternate understanding of the nature and value of dignity. I begin by recognizing that claims that one’s dignity has been violated point to an important difference between “respect for autonomy” and “respect for persons.” I then suggest three different conceptions of how dignity can be normatively guiding for bioethics, and conclude that, ultimately, understanding dignity as the cornerstone of a reflective perspective that frames moral reflection and deliberation is valuable for doing bioethics well. (shrink)

Advances in DNA sequencing technology open new possibilities for public health genomics, especially in the form of general population preventive genomic sequencing. Such screening programs would sit at the intersection of public health and preventive health care, and thereby at once invite and resist the use of clinical ethics and public health ethics frameworks. Despite their differences, these ethics frameworks traditionally share a central concern for individual rights. We examine two putative individual rights—the right not to know, and the child’s (...) right to an open future—frequently invoked in discussions of predictive genetic testing, in order to explore their potential contribution to evaluating this new practice. Ultimately, we conclude that traditional clinical and public health ethics frameworks, and these two rights in particular, should be complemented by a social justice perspective in order adequately to characterize the ethical dimensions of general population PGS programs. (shrink)

Choice architecture is heralded as a policy approach that does not coercively reduce freedom of choice. Still we might worry that this approach fails to respect individual choice because it subversively manipulates individuals, thus contravening their personal autonomy. In this article I address two arguments to this effect. First, I deny that choice architecture is necessarily heteronomous. I explain the reasons we have for avoiding heteronomous policy-making and offer a set of four conditions for non-heteronomy. I then provide examples of (...) nudges that meet these conditions. I argue that these policies are capable of respecting and promoting personal autonomy, and show this claim to be true across contrasting conceptions of autonomy. Second, I deny that choice architecture is disrespectful because it is epistemically paternalistic. This critique appears to loom large even against non-heteronomous nudges. However, I argue that while some of these policies may exhibit epistemically paternalistic tendencies, these tendencies do not necessarily undermine personal autonomy. Thus, if we are to find such policies objectionable, we cannot do so on the grounds of respect for autonomy. (shrink)

My aim in this paper is to move toward a relational moral theory of harm through examination of a common yet underexplored form of child maltreatment: childhood psychological abuse. I draw on relational theory to consider agential, intrapersonal, and interpersonal ways in which relational harms develop and evolve both in intimate relationships and in conditions of oppression. I set forth three distinctive yet interconnected forms of relational harm that childhood psychological abuse causes: harm to the relational agency of individuals, harm (...) to the relationships individuals hold with themselves, especially with regard to how they respect, know, and trust themselves, and harm to interpersonal relationships of both a direct and indirect nature in present and future timeframes. I close by noting that while relationships can be the site of human brutality that destroys the relational self, paradoxically and promisingly, they also can be a primary means of the relational reconstitution of the self. Ultimately, relational analyses of the harms of childhood psychological abuse reveal several key elements of a relational theory of harm and demonstrate the significance of relational harms for moral philosophy. (shrink)

Many popular artificial intelligence (AI) ethics frameworks center the principle of autonomy as necessary in order to mitigate the harms that might result from the use of AI within society. These harms often disproportionately affect the most marginalized within society. In this paper, we argue that the principle of autonomy, as currently formalized in AI ethics, is itself flawed, as it expresses only a mainstream mainly liberal notion of autonomy as rational self-determination, derived from Western traditional philosophy. In particular, we (...) claim that the adherence to such principle, as currently formalized, does not only fail to address many ways in which people’s autonomy can be violated, but also to grasp a broader range of AI-empowered harms profoundly tied to the legacy of colonization, and which particularly affect the already marginalized and most vulnerable on a global scale. To counter such a phenomenon, we advocate for the need of a relational turn in AI ethics, starting from a relational rethinking of the AI ethics principle of autonomy that we propose by drawing on theories on relational autonomy developed both in moral philosophy and Ubuntu ethics. (shrink)

PurposeThis paper presents an ethnographic study of gamete donation in Latvia. The aim of the study is to describe and analyse the practice of applying responsibility in gamete donation cases from the perspective of anthropology and ethics.MethodsWe performed thirty semi-structured interviews with laypeople and five focus group discussions among adolescents. The third source of data was media analysis: 57 articles discussing assisted reproduction in Latvian electronic popular media as well as internet discussions among ART participants. The data were processed using (...) Atlas.ti.ResultsThe data showed that the situation of ART responsibility is formulated through defining one’s relationship to the gametes, to the nation and the relationship between parent and child.ConclusionsThe practice of gamete donation does not create new responsibilities but uses already existing relations in a situation marked by new knowledge. Relationships among ART users, donors and physicians often result in an imbalance of responsibility sharing. The framework of relational ethics is one possible way to change the practice of balancing and sharing responsibility in ART applications. (shrink)

In this paper, I explore the role that regret does and should play in medical decision-making. Specifically, I consider whether the possibility of a patient experiencing post-treatment regret is a good reason for a clinician to counsel against that treatment or to withhold it. Currently, the belief that a patient may experience post-treatment regret is sometimes taken as a sufficiently strong reason to withhold it, even when the patient makes an explicit, informed request. Relatedly, medical researchers and practitioners often understand (...) a patient’s post-treatment regret to be a significant problem, one that reveals a mistake or flaw in the decision-making process. Contrary to these views, I argue that the possibility of post-treatment regret is not necessarily a good reason for withholding the treatment. This claim is justified by appealing to respect for patient autonomy. Furthermore, there are occasions when the very reference to post-treatment regret during medical decision-making is inappropriate. This, I suggest, is the case when the decision concerns a “personally transformative treatment”. This is a treatment that alters a person’s identity. Because the treatment is transformative, neither clinicians nor the patient him/herself can ascertain whether post-treatment regret will occur. Consequently, I suggest, what matters in determining whether to offer a personally transformative treatment is whether the patient has sufficiently good reasons for wanting the treatment at the time the decision is made. What does not matter is how the patient may subsequently be changed by undergoing the treatment. (shrink)

This paper argues that it will be important for new genomic technologies to recognize the limits of traditional approaches to informed consent, so that other-regarding implications of genomic information can be properly contextualized and individual rights respected. Respect for individual autonomy will increasingly require dynamic consideration of the interrelated dimensions of individual and broader community interests, so that the interests of one do not undermine fundamental interests of the other. In this, protection of individual rights will be a complex interplay (...) between individual and community concerns. (shrink)

Background Preconception Expanded Carrier Screening is a genetic test offered to a general population or to couples who have no known risk of recessive and X-linked genetic diseases and are interested in becoming parents. A test may screen for carrier status of several autosomal recessive diseases at one go. Such a program has been piloted in the Netherlands and may become a reality in more European countries in the future. The ethical rationale for such tests is that they enhance reproductive (...) autonomy. The dominant conception of autonomy is individual-based. However, at the clinic, people deciding on preconception ECS will be counselled together and are expected to make a joint decision, as a couple. The aim of the present study was to develop an understanding of autonomous decisions made by couples in the context of reproductive technologies in general and of preconception ECS in particular. Further, to shed light on what occurs in reproductive clinics and suggest concrete implications for healthcare professionals. Main text Based on the shift in emphasis from individual autonomy to relational autonomy, a notion of couple autonomy was suggested and some features of this concept were outlined. First, that both partners are individually autonomous and that the decision is reached through a communicative process. In this process each partner should feel free to express his or her concerns and preferences, so no one partner dominates the discussion. Further, there should be adequate time for the couple to negotiate possible differences and conclude that the decision is right for them. The final decision should be reached through consensus of both partners without coercion, manipulation or miscommunication. Through concrete examples, the suggested notion of couple autonomy was applied to diverse clinical situations. Conclusions A notion of couple autonomy can be fruitful for healthcare professionals by structuring their attention to and support of a couple who is required to make an autonomous joint decision concerning preconception ECS. A normative implication for healthcare staff is to allow the necessary time for decision-making and to promote a dialogue that can increase the power of the weaker part in a relationship. (shrink)

Freedom of religious expression is to many a fundamental element of their identity. Yet the jurisprudence of the European Court of Human Rights on the Islamic headscarf issue does not refer to autonomy and identity rights of the individual women claimants. The case law focuses on Article 9 of the European Convention on Human Rights, which provides a legal human right to freedom of religious expression. The way that provision is interpreted is critically contrasted here with the right to personal (...) autonomy and identity now developed by that court in interpreting Article 8 which contains a right to respect one’s private life. (shrink)

Fair skin is often regarded as a beauty ideal in many parts of the world. Genetic selection for non-disease traits may allow reproducers to select fair skin for the purposes of beauty, and may be justified under various procreative principles. In this paper I assess the ethics of genetic selection for fair skin as a beauty feature. In particular, I explore the discriminatory aspects and demands of such selection. Using race and colour hierarchies that many would find objectionable, I argue (...) that selection for beauty that is underpinned by such hierarchies is not a trivial selection. Given this, I claim that we should not make such selections. (shrink)