The American Journal of Bioethics, Volume 12, Issue 9, Page 55-57, September 2012.

The American Journal of Bioethics, Volume 12, Issue 9, Page 57-59, September 2012.

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)

In this open access book, Timothy Aylsworth and Clinton Castro draw on the deep well of Kantian ethics to argue that we have moral duties, both to ourselves and to others, to protect our autonomy from the threat posed by the problematic use of technology. The problematic use of technologies like smartphones threatens our autonomy in a variety of ways, and critics have only begun to appreciate the vast scope of this problem. In the last decade, we have seen a (...) flurry of books making “self-help” arguments about how we could live happier, more fulfilling lives if we were less addicted to our phones. But none of these authors see this issue as one involving a moral duty to protect our autonomy. (shrink)

Personal Information Management Systems (PIMS) aim to facilitate the sharing of personal information and protect privacy. Efforts to enhance privacy management, aligned with established privacy policies, have led to guidelines for integrating transparent notices and meaningful choices within these systems. Although discussions have revolved around the design of privacy-friendly systems that comply with legal requirements, there has been relatively limited philosophical discourse on incorporating the value of privacy into these systems. Exploring the connection between privacy and personal autonomy illuminates the (...) instrumental value of privacy and highlights the importance of intentionally embedding the value of privacy into these systems. To translate the value of privacy into concrete design requirements, this study constructs a values hierarchy consisting of values, norms, and design requirements. After analyzing the relationships between privacy and autonomy and identifying norms, the design requirements translated from the norms associated with the components of personal autonomy are specified at the lowest layer. These requirements include a design to prevent unauthorized access and dark patterns and to provide effective and efficient notices and choices. The findings contribute to expanding the requirements for designing the aspect of privacy as a legal requirement to incorporate the value of privacy into systems. (shrink)

There is a strong presumption that mental disorder injures a person's autonomy, understood as a set of capacities and as an ideal condition of agency which is worth striving for. However, recent multidimensional approaches to autonomy have revealed a greater diversity in ways of being autonomous than has previously been appreciated. This presumption, then, risks wrongly dismissing variant, neuro-atypical sorts of autonomy as non-autonomy. This is both an epistemic error, which impairs our understanding of autonomy as a phenomenon, and a (...) moral error, which withholds recognition and respect that autonomous agents are due. I argue that careful attention to the different 'shapes' of agent's autonomy reveals that there are indeed distinctive kinds of neuro-atypical autonomy that are widely mistaken for non-autonomy. This project argues for two propositions. First, that there is a kind of autonomy, with a distinctive shape and texture, available to bipolar agents. This is a variant sort of autonomy, but not a defective or deficient sort. It is the ideal of autonomy that it is worth bipolar agents striving for, given the range and intensity of experiences that they will have to confront. Whilst bipolar autonomy will look unlike more neurotypical kinds of autonomy, it continues to be owed recognition. The second proposition is that we should understand the ideal of autonomy to be both pluralist and highly context sensitive. Given the range of starting points from which agents will strive to an ideal of autonomy, there will be some variation in the ideals worth striving for. The variation in ideals will reflect the existential realities they are local to. Theory of autonomy must be adapted to recognise bipolar, and other neuro-atypical, kinds of autonomy, and to reflect this wider pluralism. These propositions will be argued for with careful attention to the experiences and agency of people living with bipolar, or related, disorders. Understanding the ways that manic or depressive episodes, and the shifts between them, alter and apply pressure to our agency will inform an account of the distinctively bipolar autonomy that can be built on top of it. (shrink)

For nearly two decades, ethicists have expressed concerns that the further development and use of memory modification technologies (MMTs)—techniques allowing to intentionally and selectively alter memories—may threaten the very foundations of who we are, our personal identity, and thus pose a threat to our well-being, or even undermine our “humaneness.” This paper examines the potential ramifications of memory-modifying interventions such as changing the valence of targeted memories and selective deactivation of a particular memory as these interventions appear to be at (...) the same time potentially both most promising clinically as well as menacing to identity. However, unlike previous works discussing the potential consequences of MMTs, this article analyzes them in the context of the narrative relational approach to personal identity and potential issues related to autonomy. I argue that such a perspective brings to light the ethical aspects and moral issues arising from the use of MMTs that have been hidden from previously adopted approaches. In particular, this perspective demonstrates how important the social context in which an individual lives is for the ethical evaluation of a given memory-modifying intervention. I conclude by suggesting that undertaking memory modifications without taking into account the social dimension of a person’s life creates the risk that she will not be able to meet one of the basic human needs—the autonomous construction and maintenance of personal identity. Based on this conclusion, I offer some reflections on the permissibility and advisability of MMTs and what these considerations suggest for the future. (shrink)

Like the ‘thoughts and prayers’ so commonly offered by politicians in the aftermath of disaster, it is incredibly common to hear ‘autonomy and dignity’ invoked together in response to some threat to human wellbeing. As such, it seems natural to assume they must bear some kind of relation to one another. But are they merely two core human interests, that happen to be vulnerable to the same kinds of threat? Or are they interrelated in a deeper way? What I aim (...) to do in this chapter is draw on the philosophical literature on both concepts to consider how they might be connected, and explore whether certain ways of connecting them are more fruitful than others. I argue that the two most prominent connections drawn in the philosophical literature – that dignity is grounded in autonomy, and that respect for dignity is synonymous with respect for autonomy – are both highly problematic. Instead, I suggest we see autonomy and dignity as mutually supportive. Doing so has both practical and theoretical benefits: it can help us identify threats to both autonomy and dignity; and it exposes theoretical lacunae, especially within the autonomy literature. (shrink)

Phenomenology gives rise to certain ontological considerations that have far-reaching implications for standard conceptions of patient autonomy in medical ethics, and, as a result, the obligations of and to patients in clinical decision-making contexts. One such consideration is the phenomenological reduction in classical phenomenology, a core feature of which is the characterisation of our primary experiences as immediately and inherently meaningful. This paper builds on and extends the analyses of the phenomenological reduction in the works of Husserl, Heidegger, and Merleau-Ponty (...) in order to identify and explain its implications for our current understanding of the principle of respect for patient autonomy and the norms of clinical decision making. (shrink)

Accounts of human beings as essentially social have had a long history in philosophy as reflected in the Ancient Greeks; in African and Asian philosophy; in Modern European thinkers such as Mary Wo...

It is common in the autonomy literature to claim that some more demanding theories of autonomy disrespect certain individuals by giving the result that those individuals lack autonomy. This claim is often made in the context of the debate between substantive and content-neutral theories of autonomy. Proponents of content-neutral theories often argue that, in deeming certain people non-autonomous—especially certain oppressed people who seem to have internalized their oppression in certain ways—the substantive theories disrespect those people. They take this as reason (...) to accept content-neutral views over substantive views. Despite its ubiquity, this concern about disrespect is hard to pin down precisely. In this paper, I articulate two questions that need to be answered before we can understand the disrespect objection. First: Who, exactly, is supposedly being disrespected by substantive views? Second: Why is it that excluding people with these features is disrespectful? I consider a number of possible answers to each of these questions, and I argue that none of them gives us a plausible explanation of why we should think substantive theories of autonomy are disrespectful to anyone. No matter how we fill in the details, I will argue, there is simply no reason to prefer content-neutral theories of autonomy over substantive ones on the grounds of respect. (shrink)

Formal views of autonomy rule out substantive rational capacities (reasons-responsiveness) as a condition of autonomous agency. I argue that such views face a number of underappreciated problems: they have trouble making sense of how autonomous agents could be robustly responsible for their choices, face the burden of explaining why there should be a stark distinction between the importance of factual and evaluative information within autonomous agency, and leave it mysterious why autonomy is the sort of thing that has value and (...) ought to be promoted. Moreover, I argue that the alternative view that includes substantive rational capacities need not have the unacceptable political implications it is sometimes thought to have. (shrink)

This article presents two rejoinders to Frankfurt’s arguments against egalitarianism. In developing the first, I introduce a novel relational view of justice: relational sufficiency. This is the view that justice requires us to relate to one another as people with sufficient, but not necessarily equal, standing. I argue that if Frankfurt’s objections to distributive equality are sound, so are analogous objections to relational equality. However, in a range of cases involving comparative justice (punishment, equal pay, and family relations) we should (...) be relational egalitarians, not relational sufficientarians, and that we must therefore reject Frankfurt’s objections to distributive equality. The second rejoinder takes the form of a demonstration that all of Frankfurt’s objections to distributive equality (and relational equality) are unsound. In effect, the article rehabilitates the ideal of distributive equality in the face of Frankfurt’s objections. (shrink)

Algorithmic systems and predictive analytics play an increasingly important role in various aspects of modern life. Scholarship on the moral ramifications of such systems is in its early stages, and much of it focuses on bias and harm. This paper argues that in understanding the moral salience of algorithmic systems it is essential to understand the relation between algorithms, autonomy, and agency. We draw on several recent cases in criminal sentencing and K–12 teacher evaluation to outline four key ways in (...) which issues of agency, autonomy, and respect for persons can conflict with algorithmic decision-making. Three of these involve failures to treat individual agents with the respect they deserve. The fourth involves distancing oneself from a morally suspect action by attributing one’s decision to take that action to an algorithm, thereby laundering one’s agency. (shrink)

In this paper we develop a view about the disorientation attached to the process of falling out of love and explain its prudential and moral value. We start with a brief background on theories of love and situate our argument within the views concerned with the lovers’ identities. Namely, love changes who we are. In the context of our paper, we explain this common tenet in the philosophy of love as a change in the lovers’ self-concepts through a process of (...) mutual shaping. This, however, is potentially dangerous for people involved in what we call ‘subsuming relationships’, who give up too much autonomy in the process of mutual shaping. We then move on to show how, through the relation between love and the self-concept, we can explain why the process of falling out of love with someone is so disorientating: when one is falling out of love, one loses an important point of reference for self-understanding. While this disorientating process is typically taken to be harmful to the person experiencing it, we will explain how it can also have moral and prudential value. By re-evaluating who we were in the relationship and who we are now, we can escape from oppressive practices in subsuming relationships. We finish by arguing that this gives us reason to be wary of seeking to re-orient ourselves -or others- too quickly after falling out of love. (shrink)

BackgroundRespect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately (...) operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics.MethodsUsing PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced.ResultsFifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations.ConclusionsThree main conclusions were reached. First, literature on relational autonomy tends to be more a ‘reaction against’ an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations. (shrink)

Services of ethics consultants are nowadays commonly used in such various spheres of life as engineering, public administration, business, law, health care, journalism, and scientific research. It has however been maintained that use of ethics consultants is incompatible with personal autonomy; in moral matters individuals should be allowed to make their own decisions. The problem this criticism refers to can be conceived of as a conflict between the professional autonomy of ethics experts and the autonomy of the persons they serve. (...) This paper addresses this conflict and maintains that when the nature of both ethics consultation and individual autonomy is properly understood, the professional autonomy of ethics experts is compatible with the autonomy of the persons they assist. (shrink)

In political philosophy, the concept of autonomy is often associated with liberalism: it serves as a justification for the liberal values of state neutrality and value pluralism, and seems coherent with the liberal definition of freedom as the absence of interference. Neo-republicans have pointed out that freedom as non-interference fails to acknowledge the fact that one may be unfree while non-interfered with, while on the other hand, not all forms of interference are freedom-limiting. They have proposed to replace the concept (...) by freedom as non-domination, which they define as the absence of actual or possible arbitrary interference. Although their definition is promising, neo-republicans tend to neglect the concept of self-government and therefore, are vulnerable to the same accusations of incompleteness faced by liberals. By focusing on the negative part of freedom as non-domination, they have omitted two aspects: first, that there are other ways to be unfree than to be the subject of mere arbitrary interference, and second, that the real value of non-domination is the capacity to act as a non-dominated being, which requires a level of self-mastery. To fix this problem, I propose an extension of the concept of non-domination and argue that the theory would benefit from including autonomy in the list of its conditions for freedom. Following the republican idea that one is only free in a free state, I propose a definition of republican autonomy that is political in nature, and depends on globalized nondomination. (shrink)

Agency and representation are viewed as preconditions for democratic action. The dominant understanding of agency and representation is defined in terms of certain capacities and abilities that are considered to constitute the basis of personhood. The article will put into question this understanding and the assumptions that underpin it and argue that it rests on a mistaken conception of human animality – one that reduces the self to an autonomous and disembodied rational mind. The article will also suggest that it (...) is problematic because it marginalizes more than human forms of life – as well as those of us who are differently human – and excludes their points of view from the political processes of world making. In contrast, I will put forward an understanding of agency and representation that is attuned to the relational dimensions of all life on earth. By paying attention to the semiotic propensities that all forms of life share – which entails considering nonlinguistic forms of communication – this article responds to the need for more radically democratic ways of listening, giving voice, and caring for the earth’s beings and the relations that form the conditions for life to flourish. (shrink)

En los sectores políticos democráticos liberales, el principio del respeto a la autonomía es ampliamente aceptado —en teoría, si no siempre en la práctica— como un valor moral cardinal que debería guiar tanto la deliberación política, la política pública y las prácticas, como nuestras actitudes respecto a nuestros conciudadanos. En términos simples, respetar la autonomía es respetar los intereses de cada persona de vivir su vida según su propia concepción del bien. En la base del requisito normativo de respetar la (...) autonomía de otro está la presunción de que la autonomía confiere autoridad normativa sobre la propia vida; la autoridad para tomar decisiones de importancia práctica para la propia vida, por razones propias, cualesquiera que sean. Se asume que las personas autónomas tienen la capacidad, el derecho y la responsabilidad de ejercer esta autoridad, incluso si no siempre lo hacen sabiamente. (shrink)

Examines the lived experience of social encounters drawing on phenomenological insights.

This paper is concerned with the practical importance of different forms of paternalism for educational theory and practice. Contrary to the traditional treatment of paternalism as a sometimes necessary and rather messy aspect of educational practices, I demonstrate that paternalism is to be regarded as an “indigenous concept” of educational theory and as the ‘indigenous model of justification’ that underlies the structure of educational practices. Based on an analysis of the intricate nexus between autonomy-oriented forms of paternalism and educational forms (...) of autonomy-based perfectionism I furthermore argue that a perfectionistically structured conception of autonomy provides a more adequate evaluative framework for justifying autonomy as an educational aim than alternative educational regimes of autonomy can deliver. Finally, I discuss some major theoretical problems of bridging the gap between general ethical principles and their application in practical fields. (shrink)

Wem wird geglaubt und wem nicht? Wessen Wissen wird weitergegeben und wessen nicht? Wer hat eine Stimme und wer nicht? Theorien der epistemischen Ungerechtigkeit befassen sich mit dem breiten Feld der ungerechten oder unfairen Behandlung, die mit Fragen des Wissens, Verstehens und Kommunizierens zusammenhängen, wie z.B. die Möglichkeit, vom Wissen oder von kommunikativen Praktiken ausgeschlossen zu werden oder zum Schweigen gebracht zu werden, aber auch Kontexte, in denen die Bedeutungen mancher systematisch verzerrt oder falsch gehört und falsch dargestellt werden, in (...) denen manchen misstraut wird oder es an epistemischer Handlungsfähigkeit mangelt. In diesem Buch wird eine Übersicht über die breite Debatte epistemischer Ungerechtigkeit, epistemischer Unterdrückung und epistemischer Gewalt gegeben, in dem unterschiedliche Theorien, die sich auf der Schnittstelle von Gerechtigkeitstheorie und epistemischen Fragen befinden, systematisch und kritisch diskutiert sowie theoretische Vorgänger dieser Theorien beleuchtet werden. (shrink)

So‐called nudge policies utilize insights from behavioral science to achieve policy outcomes. Nudge policies try to improve people's decisions by changing the ways options are presented to them, rather than changing the options themselves or incentivizing or coercing people. Nudging has been met with great enthusiasm but also fierce criticism. This paper provides an overview of the debate on the ethics of nudging to date. After outlining arguments in favor of nudging, we first discuss different objections that all revolve around (...) the worry that nudging vitiates personal autonomy. We split up this worry into different dimensions of autonomy, such as freedom of choice, volitional autonomy, rational agency, and freedom as nondomination. We next discuss worries that nudging is manipulative, violates human dignity, and prevents more important structural reform. Throughout, we will present responses that proponents of nudging can muster. On the whole, we conclude that the objections fail to establish that the nudge program as a whole should be rejected. At the same time, they give us important guidance when moving towards an ethical assessment of nudges on a case‐by‐case basis. Towards the end, we provide some possible ways forward in debates around the ethics of nudging. (shrink)

ABSTRACTSerene Khader and Rosa Terlazzo have each recently proposed theories of adaptive preferences which purport to both respect persons’ agency and provide an effective political tool. While Khader and Terlazzo thus share a similar goal, they take fundamentally different paths in its pursuit: Khader offers a perfectionist account of APs and Terlazzo an autonomy-based theory. In this paper, I argue first that if it is to adequately respect persons’ agency, a theory of APs should in some way include autonomy considerations. (...) If it is to provide an effective political tool, however, our theory should not be entirely autonomy-based, but include a condition addressing a preference’s compatibility with basic flourishing. The suggestion is thus that it is worth considering the possibility of a ‘mixed,’ rather than exclusively perfectionist or exclusively autonomy-based, theory of APs. I outline two such theories. The first, I argue, does quite well with respect to the political efficacy aim of AP theoriz... (shrink)

According to relational views of autonomy, some social relations or forms of dependence are necessary for autonomous agency. Recent relational theorists have primarily focused on autonomy of action or practical autonomy, and the result has been a shift away from individualistic conceptions of autonomy in the practical realm. Despite these trends, individualistic conceptions are still the default when it comes to autonomy of belief or intellectual autonomy. In this paper, I argue for a relational account of intellectual autonomy. Specifically, I (...) claim that intellectual autonomy requires a sense of one’s standing as an equal member of the epistemic community. (shrink)

In this article I seek a more complete understanding of evil action. To this end, in the first half of the article I assess the conceptual strengths and weaknesses of the most compelling theories of evil action found in the contemporary philosophical literature. I conclude that the theories that fall under the category I call ‘‘Nuanced Harm Accounts’’ successfully identify the necessary and sufficient conditions of the concept. However, necessary and sufficient conditions are not coextensive with significant features, and Nuanced (...) Harm Accounts are incomplete even if they are correct. In order to supplement them, in the second half of the article I examine the normative relation that obtains between perpetrators and victims of evil and find them to be parties to a relation of asymmetrical power in which the vulnerability of the weaker party is exploited by the stronger party for its advantage, pleasure, or otherwise to achieve its aims. Moreover, the parties in the relation reciprocally enable each other’s role relative to one another. The strength of the more powerful party emerges out of the states of vulnerability of the victims, and the victims are vulnerable relative to the power(s) of the perpetrator. (shrink)

Respect for patient autonomy is a central principle of medical ethics. However, there are important unresolved questions about the characteristics of an autonomous decision, and whether some autonomous preferences should be subject to more scrutiny than others. In this paper, we consider whether _inappropriately adaptive preferences_—preferences that are based on and that may perpetuate social injustice—should be categorised as autonomous in a way that gives them normative authority. Some philosophers have argued that inappropriately adaptive preferences do not have normative authority, (...) because they are only a reflection of a person’s social context and not of their true self. Under this view, medical professionals who refuse to carry out actions which are based on inappropriately adaptive preferences are not in fact violating their patient’s autonomy. However, we argue that it is very difficult to articulate a systematic and principled distinction between normal autonomous preferences and inappropriately adaptive preferences, especially if this distinction needs to be useful for clinicians in real-life situations. This makes it difficult to argue that inappropriately adaptive preferences are straightforwardly non-autonomous. Given this problem, we argue that there are significant theoretical issues with contemporary understandings of autonomy in bioethics. We discuss what this might mean for the practice of medicine and for medical ethics education. (shrink)

Given the ubiquity and centrality of social and relational influences to the human experience, our conception of self-governance must adequately account for these external influences. The inclusion of socio-historical, externalist considerations into more traditional internalist accounts of autonomy has been an important feature of the debate over personal autonomy in recent years. But the relevant socio-temporal dynamics of autonomy are not only historical in nature. There are also important, and under-examined, future-oriented questions about how we retain autonomy while incorporating new (...) values into the existing set that guides our interaction with the world. In this paper, we examine these questions from two complementary perspectives: philosophy and neuroscience. After contextualizing the philosophical debate, we show the importance to theories of autonomous agency of the capacity to appropriately adapt our values and beliefs, in light of relevant experiences and evidence, to changing circumstances. We present a plausible philosophical account of this process, which we claim is generally applicable to theories about the nature of autonomy, both internalist and externalist alike. We then evaluate this account by providing a model for how the incorporation of values might occur in the brain; one that is inspired by recent theoretical and empirical advances in our understanding of the neural processes by which our beliefs are updated by new information. Finally, we synthesize these two perspectives and discuss how the neurobiology might inform the philosophical discussion. (shrink)

In this review essay, I critically evaluate the concept of autonomy and the role that it plays in the philosophy of sex and love in Patricia Marino’s book, Philosophy of Sex and Love: An Opinionated Introduction.

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

Hope has been neglected as a topic by philosophers interested in families, children, and children's autonomy. Hope may be confused with adjacent phenomena, such as optimism and wishful thinking. However, hope, when understood to involve goals, exploration of pathways to achieving those goals, and motivation to explore the pathways, is necessary for autonomy. It is also importantly related to children's resilience in response to challenges and stressors. In the course of explaining what I take autonomy to involve, why I think (...) children can have areas of local autonomy, and connections between hope, autonomy and resilience, I examine evidence that supports my claims about these connections. I then conclude with a brief discussion of implications of these connections for social policy, especially in the educational context, and for personal interactions with children. (shrink)

Autonomie und mit ihr die Selbstbestimmung gelten als hohes Gut. Demnach hat jeder Mensch das Recht, selbst darüber zu entscheiden, wie er leben möchte, und seine persönlichen Entscheide in der eigenen Lebensführung zu realisieren - und das ohne die Einmischung von anderen, auch staatlichen Stellen. Doch Selbstbestimmung ist nicht grenzenlos. Sie hat auch Rücksicht auf andere zu nehmen, deren Rechte zu achten und ist immer mit Verantwortung verbunden. Die Beiträger*innen des Bandes stellen sich diesem Spannungsfeld und fragen: Was heißt es (...) unter diesen Vorzeichen, sich selbst zu bestimmen und ein gelungenes Leben zu führen? Und was bedeutet Autonomie für Entscheide am Lebensende und die personalisierte Medizin? (shrink)

The author reviews various conceptions of autonomy to show that humans are actually not autonomous, strictly speaking. He argues for a need to rethink the personal autonomy approaches to HIV testing in sub-Saharan Africa (SSA) countries. HIV/AIDS has remained a leading cause of disease burden in SSA. It is important to bring this disease burden under control, especially given the availability of current effective antiretroviral regimens in low- and middle-income countries. In most SSA countries the ethic or value of personal (...) autonomy or self-determination is promoted as primary in HIV testing decision-making. SSA policymakers have an ontological and moral duty to adopt HIV testing policies that reflect human and medical realities, relationships, local contexts, and respect human rights for both individuals and others who are affected by HIV in society. Without rethinking the value of autonomy in HIV testing decision-making, the article cautions that attainment of the Sustainable Development Goal (SDG) 3 and the UNAIDS fast-track strategy that explicitly call to end the epidemic by 2030 will not be feasible for SSA. (shrink)

As in other areas of medical practice, relatives accompany patients to genetic consultations. However, unlike in other areas, the consultations may be relevant to the relatives’ health because they may be at risk of developing the same genetic condition as the patient. The presence of relatives in genetic consultation may affect the decision‐making process and it raises questions about the perception of patient autonomy and the way it is practiced in genetics. However, these issues have not been examined in previous (...) empirical studies. This article aims to fill this gap by reporting findings from a qualitative study with clinicians working in the area of inherited breast cancer. The findings indicate that family presence has an impact on the patient's decisions to undergo genetic testing and preventative operations when she is diagnosed as a carrier. The findings further indicate that, unlike in other areas of medical practice, blood relatives who are present in consultations are perceived by clinicians as patients or potential patients, and this in turn increases their involvement in discussions in the consultation room. Finally, the findings indicate that in genetics, a relational approach to autonomy is applied. Decisions are made in a social context, where the relatives’ views are heard and taken into account. The findings suggest that the conventional bioethical approach to autonomy, which perceives the decision‐making unit as comprising a clinician and an individual patient, is challenged in genetics. The findings thus suggest that bioethicists, lawyers and policy‐makers should consider whether this individualistic approach is still valid and applicable. (shrink)

Despite extensive theoretical debate, concrete efforts to overcome paternalism and unbalanced power relations between patients and doctors have produced limited results. In this article, I examine...