When philosophers consider factors compromising autonomy in consent, they often focus solely on the consent-giver’s agential capacities, overlooking the impact of the consent-receiver’s conduct on the consensual character of the activity. In this paper, I argue that valid consent requires justified trust in the consent-receiver to act only within the scope of consent. I call this the Trust Condition (TC), drawing on Katherine Hawley’s commitment account of trust. TC constitutes a belief that the consent-receiver is capable and willing to act (...) as we expect from them. If such trust is not warranted, I argue, consent lacks the appropriate normative grounds. After establishing TC, I explore its application in the sexual arena, asserting that due to the non-contractual dimensions of sexual activity — such as the dynamic nature of sexual desires and the absence of external factors effectively binding sexual partners to the terms of consent—trust is warranted in sexual consent by means of care. I define care as a special sensitivity and attention toward the partner’s will and discuss how this approach leads to safer intimate relationships in practice. (shrink)

In the trust-health relationship, how trusting other people in society may promote good health is a topic often examined. However, the other direction of influence – how health may affect trust – has not been well explored. In order to investigate this possible effect, we employed Bayesian Mindsponge Framework (BMF) analytics to go deeper into the information processing mechanisms underlying the expressions of trust. Conducting Bayesian analysis on a dataset of 1237 residents from Cali, Colombia, we found that general health (...) status is positively associated with generalized trust, but recent experiences of illnesses/injuries have a negative moderating effect. Personalized trust is largely unchanged across different general health conditions, but the trust level becomes higher with recent experiences of illnesses/injuries. Psychophysiological mechanisms of increasing information filtering intensity toward unfamiliar sources during a vulnerable state of health is a plausible explanation of found patterns in generalized trust. Because established personal relationships are reinforced information channels, personalized trust is not affected as much. Rather, the results suggest that people may rely even more on loved ones when they are in bad health conditions. This exploratory study shows that the trust-health relationship can be examined from a different angle that may provide new insights. (shrink)

This paper analysed the nature of autonomy, in particular respect for autonomy in medical ethics/bioethics in Japan. We have undertaken a literature survey in Japanese and English and begin with the historical background and explanation of the Japanese wordJiritsu (autonomy). We go on to identify patterns of meaning that researchers use in medical ethics / bioethics discussions in Japan, namely, Beauchamp and Childress’s individual autonomy, relational autonomy, and O’Neill’s principled autonomy as the three major ways that autonomy is understood. We (...) examine papers discussing these interpretations. We propose using the term ‘a form of autonomy’ first used by Edmund Pellegrino in 1992 and examine the nature of ‘a form of autonomy.’ We finally conclude that the crux of what Pellegrino calls ‘something close to autonomy,’ or ‘a form of autonomy' might best be understood as the minimization of physician paternalism and the maximization of respect for patient preference. Simultaneously, we introduce a family-facilitated approach to informed consent and respond to criticism by Laura Sullivan. Finally, we discuss cross-cultural approaches and global bioethics. Furthermore, we use the term ‘Bioethics across the Globe’ instead of ‘Global Bioethics’, calling for international scholars to write works to provide an in-depth understanding of each country. We conclude that deep understanding of others is pivotal for dialogue to be of value. We hope this article will deepen the reader’s understanding of Japan and will contribute to the progress of bioethics worldwide. (shrink)

How social media impacts the autonomy of its users is a topic of increasing focus. However, much of the literature that explores these impacts fails to engage in depth with the philosophical literature on autonomy. This has resulted in a failure to consider the full range of impacts that social media might have on autonomy. A deeper consideration of these impacts is thus needed, given the importance of both autonomy as a moral concept and social media as a feature of (...) contemporary life. By drawing on this philosophical literature, we argue that autonomy is broadly a matter of developing autonomy competencies, having authentic ends and control over key aspects of your own life, and not being manipulated, coerced, and controlled by others. We show how the autonomy of users of social media can be disrespected and harmed through the control that social media can have over its users’ data, attention, and behaviour. We conclude by discussing various recommendations to better regulate social media. (shrink)

Durch genomweite Analysen werden vielfältige gesundheitsrelevante Informationen über eine Person gewonnen. Solche Informationen können die Behandlung von Krankheiten verbessern. Sie ermöglichen aber auch Vorhersagen, ob eine Person und deren Verwandte in Zukunft möglicherweise erkranken werden. Der neuartige Charakter des Informationseingriffs und sein prädiktive Potential bedürfen der ethischen, juristischen und ökonomischen Reflexion, damit diese Technologie zum Wohl der Patienten, der Familienangehörigen und der Solidargemeinschaft eingesetzt werden kann. Die vorliegende Schrift leistet mit ihren interdisziplinären, vom BMBF finanzierten Analysen dazu einen Beitrag. Grundlagen (...) für einen ethisch und juristisch verantwortbaren Einsatz der Genomsequenzierung zu medizinischen Zwecken werden erörtert und Eckpunkte für Kostenanalysen sowie Elemente einer “Guten klinischen Praxis” präsentiert. (shrink)

Faced with current urgent calls for more trust in experts, especially in high impact and politically sensitive domains, such as climate science and COVID-19, the complex and problematic nature of public trust in experts and the need for a more critical approach to the topic are easy to overlook. Scepticism – at least in its Humean mitigated form that encourages independent, questioning attitudes – can prove valuable to democratic governance, but stands in opposition to the cognitive dependency entailed by epistemic (...) trust. In this paper, we investigate the tension between the value of mitigated scepticism – understood as the exercise of reason-based doubt in a particular domain – and the need for trust in experts. We offer four arguments in favour of mitigated scepticism: the argument from loss of intellectual autonomy; the argument from democratic deficit; the argument from the normative failures of science; and the argument from past and current injustices. These arguments highlight the tension between the requirements for trust and justified scepticism about the role of experts. One solution, which we reject, is the idea that reliance, rather than trust, is sufficient for the purposes of accommodating experts in policy matters. The solution we endorse is to create a ‘climate of trust’, where questioning experts and expertise is welcomed, but the epistemic trust necessary for action upon information which the public cannot obtain first-hand is enabled and encouraged through structural, institutional, and justice-based measures. (shrink)

Social robots are robots that can interact socially with humans. As social robots and the artificial intelligence that powers them becomes more advanced, they will likely take on more social and work roles. This has many important ethical implications. In this paper, we focus on one of the most central of these, the impacts that social robots can have on human autonomy. We argue that, due to their physical presence and social capacities, there is a strong potential for social robots (...) to enhance human autonomy as well as several ways they can inhibit and disrespect it. We argue that social robots could improve human autonomy by helping us to achieve more valuable ends, make more authentic choices, and improve our autonomy competencies. We also argue that social robots have the potential to harm human autonomy by instead leading us to achieve fewer valuable ends ourselves, make less authentic choices, decrease our autonomy competencies, make our autonomy more vulnerable, and disrespect our autonomy. Whether the impacts of social robots on human autonomy are positive or negative overall will depend on the design, regulation, and use we make of social robots in the future. (shrink)

In her BBC Reith Lectures on Trust, Onora O’Neill offers a short, but biting, criticism of transparency. People think that trust and transparency go together but in reality, says O'Neill, they are deeply opposed. Transparency forces people to conceal their actual reasons for action and invent different ones for public consumption. Transparency forces deception. I work out the details of her argument and worsen her conclusion. I focus on public transparency – that is, transparency to the public over expert domains. (...) I offer two versions of the criticism. First, the epistemic intrusion argument: The drive to transparency forces experts to explain their reasoning to non-experts. But expert reasons are, by their nature, often inaccessible to non-experts. So the demand for transparency can pressure experts to act only in those ways for which they can offer public justification. Second, the intimate reasons argument: In many cases of practical deliberation, the relevant reasons are intimate to a community and not easily explicable to those who lack a particular shared background. The demand for transparency, then, pressures community members to abandon the special understanding and sensitivity that arises from their particular experiences. Transparency, it turns out, is a form of surveillance. By forcing reasoning into the explicit and public sphere, transparency roots out corruption — but it also inhibits the full application of expert skill, sensitivity, and subtle shared understandings. The difficulty here arises from the basic fact that human knowledge vastly outstrips any individual’s capacities. We all depend on experts, which makes us vulnerable to their biases and corruption. But if we try to wholly secure our trust — if we leash groups of experts to pursuing only the goals and taking only the actions that can be justified to the non-expert public — then we will undermine their expertise. We need both trust and transparency, but they are in essential tension. This is a deep practical dilemma; it admits of no neat resolution, but only painful compromise. (shrink)

Over the last few decades, multiple studies have examined the understanding of participants in clinical research. They show variable and often poor understanding of key elements of disclosure, such as expected risks and the experimental nature of treatments. Did the participants in these studies give valid consent? According to the standard view of informed consent they did not. The standard view holds that the recipient of consent has a duty to disclose certain information to the profferer of consent because valid (...) consent requires that information to be understood. The contents of the understanding and disclosure requirements are therefore conceptually linked. In this paper, we argue that the standard view is mistaken. The disclosure and understanding requirements have distinct grounds tied to two different ways in which a token of consent can be rendered invalid. Analysis of these grounds allows us to derive the contents of the two requirements. It also implies that it is sometimes permissible to enroll willing participants who have not understood everything that they ought to be told about their clinical trials. (shrink)

As a result of the world-wide COVID-19 epidemic, an internal tension in the goals of medicine has come to the forefront of public debate. Medical professionals are continuously faced with a tug of...

Engineers are traditionally regarded as trustworthy professionals who meet exacting standards. In this chapter I begin by explicating our trust relationship towards engineers, arguing that it is a linear but indirect relationship in which engineers “stand behind” the artifacts and technological systems that we rely on directly. The chapter goes on to explain how this relationship has become more complex as engineers have taken on two additional aims: the aim of social engineering to create and steer trust between people, and (...) the aim of creating automated systems that take over human tasks and are meant to invite the trust of those who rely on and interact with them. (shrink)

Trust is a topic of longstanding philosophical interest. It is indispensable to every kind of coordinated human activity, from sport to scientific research. Even more, trust is necessary for the successful dissemination of knowledge, and by extension, for nearly any form of practical deliberation and planning. Without trust, we could achieve few of our goals and would know very little. Despite trust’s fundamental importance in human life, there is substantial philosophical disagreement about what trust is, and further, how trusting is (...) normatively constrained and best theorized about in relation to other things we value. This entry is divided into three sections, which explore key (and sometimes interconnected) ethical and epistemological themes in the philosophy of trust: (1) The Nature of Trust; (2) The Normativity of Trust, and (3) The Value of Trust. (shrink)

Our life with art is suffused with trust. We don’t just trust one another’s aesthetic testimony; we trust one another’s aesthetic actions. Audiences trust artists to have made it worth their while; artists trust audiences to put in the effort. Without trust, audiences would have little reason to put in the effort to understand difficult and unfamiliar art. I offer a theory of aesthetic trust, which highlights the importance of trust in aesthetic sincerity. We trust in another’s aesthetic sincerity when (...) we rely on them to fulfill their commitments to act for aesthetic reasons — rather than for, say, financial, social, or political reasons. We feel most thoroughly betrayed by an artist, not when they make bad art, but when they sell out. This teaches us something about the nature of trust in general. According to many standard theories, trust involves thinking the trusted to be cooperative or good-natured. But trust in aesthetic sincerity is different. We trust artists to be true to their own aesthetic sensibility, which might involve selfishly ignoring their audience’s needs. Why do we care so much about an artist’s sincerity, rather than merely trusting them to make good art? We emphasize sincerity when wish to encourage originality, rather than to demand success along predictable lines. And we ask for sincerity when our goal is to discover a shared sensibility. In moral life, we often try to force convergence through coordinated effort. But in aesthetic life, we often hope for the lovely discovery that our sensibilities were similar all along. And for that we need to ask for sincerity, rather than overt coordination. (shrink)

There has recently been an expansion of anti-abortion measures in the United States. Within these various measures there is a divide over certain exceptions: some States permit abortion for pregnancies caused by rape while other States do not. This paper explores the underlying moral justification for such exceptions. I argue that within the dominant moral framework for reproductive ethics these exceptions are incoherent by their own lights. But this is not a defense of an exceptionless anti-abortion position. Rather, because the (...) typical way of making such exceptions is incoherent, this shows why the anti-abortion movement is dangerous: as these incoherencies are acknowledged, this may lead to ever stricter measures being put in place. I end by suggesting that those who are sympathetic to these exceptions should find it easier to move to a pro-choice position rather than to a more extreme, exceptionless one. (shrink)

Our technological lifeworld has become an info-computational media populated by data and algorithms, an artificial environment for life and shared experiences. In this chapter, I tried to sketch three new assumptions for bioethics – it is hardly possible to substantiate ethical guidelines or an idea of normativity in an aprioristic manner; moral status is a function of data entities, not something solely human; agency is plural and thus is shared or sometimes delegated – in order to chart a proposal for (...) a posthuman bioethics. Posthuman is perhaps not the best expression available, but it covers the idea of a shift from a world centered on self-contained and exclusively human agency to a more comprehensive and relational way of thinking. The “posthuman” label should be understood as a rebuttal of biocentrism and anthropocentrism by moving closer to conceptions we encounter in population ethics or in discourse about biosocial and technical systems. Posthuman bioethics is “environmentalist” without losing the humanistic stance. The question regarding how suitable an infocentric bioethics is in practice remains to be settled. The moral principles in bioethics could be reconceived as relying on these new assumptions, in a postindividualistic manner that accepts formal primacy of causal digital artifacts in affording actions in a world of ambient algorithmic intelligence. (shrink)

One of the main difficulties in assessing artificial intelligence (AI) is the tendency for people to anthropomorphise it. This becomes particularly problematic when we attach human moral activities to AI. For example, the European Commission’s High-level Expert Group on AI (HLEG) have adopted the position that we should establish a relationship of trust with AI and should cultivate trustworthy AI (HLEG AI Ethics guidelines for trustworthy AI, 2019, p. 35). Trust is one of the most important and defining activities in (...) human relationships, so proposing that AI should be trusted, is a very serious claim. This paper will show that AI cannot be something that has the capacity to be trusted according to the most prevalent definitions of trust because it does not possess emotive states or can be held responsible for their actions—requirements of the affective and normative accounts of trust. While AI meets all of the requirements of the rational account of trust, it will be shown that this is not actually a type of trust at all, but is instead, a form of reliance. Ultimately, even complex machines such as AI should not be viewed as trustworthy as this undermines the value of interpersonal trust, anthropomorphises AI, and diverts responsibility from those developing and using them. (shrink)

Ensuring patient participation in healthcare decision making remains a difficult task. Factors such as a lack of time in the consultation, medical objectivation, or the difficulties of translating individual patient experience into the treatment plan have been shown to limit patient contributions. Little research attention has focused however on how emotions experienced by both the patient and the healthcare provider may affect the ability of the patient to participate. In this research, patient’s and healthcare provider’s emotions were identified and analysed. (...) The research method showed fear as a prominent emotion experienced. This included patient’s fears both inside and outside the consultation, as well as the healthcare provider’s fears in their professional practice. Using Martha Nussbaum’s cognitive-evaluative theory of emotions as an additional means of analysis, the research looked at what this emotion could show about the importance of the object of this fear to the person’s eudaimonia (flourishing). At the end of the article, several solutions were proposed to help mitigate this fear to keep it from becoming a destructive force in the healthcare provider—patient relationship. (shrink)

BackgroundInternationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records to be fully engaged with their care. While research has been conducted on the impact of patient access to outpatient and primary care records and to patient portals, there is no such review looking at access to hospital medical records in real time, nor an ethical analysis of (...) the issues involved in such a change in process.MethodsThis study employed a systematic review framework in two stems, to integrate literature identified from two searches: Medline, CINAHL and Scopus databases were conducted, (for (1) hospitalised patients, patient access to records and its effects on communication and trust within the doctor-patient relationship; and (2) patient access to medical records and the ethical implications identified). The qualitative and quantitative results of both searches were integrated and critically analysed.Results3954 empirical and 4929 ethical studies were identified; 18 papers representing 16 studies were identified for review (12 empirical and 6 ethical). The review reveals a consensus that our current approach to giving information to patients – almost exclusively verbally – is insufficient; that patient access to notes is a welcome next step for patient-centred care, but that simply allowing full access, without explanation or summary, is also insufficient. Several ethical implications need to be considered: increased information could improve patient trust and knowledge but might transfer an (unwelcome) sense of responsibility to patients; doctors and patients have conflicting views on how much information should be shared and when; sharing written information might increase the already significant disparity in access to health care, and have unforeseen opportunity costs. The impact on medical practice of sharing notes in real time will also need to be evaluated.ConclusionsThe review presents encouraging data to support patient access to medical notes. However, sharing information is a critical part of clinical practice; changing how it is done could have significant empirical and ethical impacts; any changes should be carefully evaluated. (shrink)

According to most accounts of trust, you can only trust other people (or groups of people). To trust is to think that another has goodwill, or something to that effect. I sketch a different form of trust: the unquestioning attitude. What it is to trust, in this sense, is to settle one’s mind about something, to stop questioning it. To trust is to rely on a resource while suspending deliberation over its reliability. Trust lowers the barrier of monitoring, challenging, checking, (...) and questioning. Trust sets up open pipelines between yourself and parts of the external world. Trust permits external resources to have a similar relationship to one as one’s internal cognitive faculties. This creates efficiency, but at the price of exquisite vulnerability. We must trust in this way because we are cognitively limited beings in a cognitively overwhelming world. Crucially, we can hold the unquestioning attitude towards objects and technologies. When I trust my climbing rope, I stop worrying about its reliability. When I trust my online calendaring system, I simply go to the events indicated, without question. But, one might worry, how could one ever hold such a normatively loaded attitude as trust towards mere objects? How could it ever make sense to feel betrayed by an object? Trust is our engine for expanding and outsourcing our agency — for binding external processes into our practical selves. Thus, we can be betrayed by our smartphones in the same way that we can be betrayed by our memory. When we trust, we try to make something a part of our agency, and we are betrayed when our part lets us down. To unquestioningly trust something is to let it in—to attempt to bring it inside one’s practical functioning. This suggests a new form of gullibility: agential gullibility, which occurs when agents too hastily and carelessly integrate external resources into their own agency. (shrink)

Through the vehicle of Nicolas Sarkozy’s so-called “Dakar Address” we will analyse the West’s persisting lack of insight into the need for a Western decolonization. We will try to identify the dangers that come from this refusal, such as the abidance in colonial patterns, the enduring self-understanding as superior com-pared to Africa, and the persisting unwillingness to accept the colonial guilt. Decolonization has to be understood as a two-fold business. Decolonization is over-coming endured and perpetrated violence. It is not only (...) important that the colonial oppressed regain strength, it is equally important that the perpetrator of colonial violence understand their excess of violence and work on effecting its return impossible. We explain how Western thinking remains dangerous and untrustwor-thy if it refuses its own decolonization. Finally, we will draw attention to a fundamental pattern of Western thought that clashes with the fundamental values of the West: contempt. In a final step we suggest how this contempt can be overcome through desuperiorisation and the establishment of elative ethics. (shrink)

Experimental design is one aspect of a scientific method. A well-designed, properly conducted experiment aims to control variables in order to isolate and manipulate causal effects and thereby maximize internal validity, support causal inferences, and guarantee reliable results. Traditionally employed in the natural sciences, experimental design has become an important part of research in the social and behavioral sciences. Experimental methods are also endorsed as the most reliable guides to policy effectiveness. Through a discussion of some of the central concepts (...) associated with experimental design, including controlled variation and randomization, this chapter will provide a summary of key ethical issues that tend to arise in experimental contexts. In addition, by exploring assumptions about the nature of causation and by analyzing features of causal relationships, systems, and inferences in social contexts, this chapter will summarize the ways in which experimental design can undermine the integrity of not only social and behavioral research but policies implemented on the basis of such research. (shrink)

The concept of autonomy plays a central role in bioethics,1 but there is no consensus as to how we should understand it beyond a general notion of self-determination. The conception of autonomy deployed in applied ethics2 can have crucial ramifications when it is applied in real-world scenarios, so it is important to be clear. However, this clarity is often lacking when autonomy is discussed in the bioethics literature. In this paper we outline three different conceptions of autonomy, and argue that (...) a substantive, perfectionist approach meets the theoretical requirements for an account of autonomy and also provides practical guidance. As Rebecca Walker argues, bioethics requires a more conceptually adequate account... (shrink)

Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes. With this in mind, the Science and Values Working Group of the COST Action CHIP ME ‘Citizen's Health through (...) public-private Initiatives: Public health, Market and Ethical perspectives’ identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals’ trust in research. We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment. (shrink)

Misconceived Consent: Miguel has stage IV lung cancer. He has nearly exhausted his treatment options when his oncologist, Dr. Llewellyn, tells him about an experimental vaccine trial that may boost his immune response to kill cancer cells. Dr. Llewellyn provides Miguel with a consent form that explains why the study is being conducted, what procedures he will undergo, what the various risks and benefits are, alternative sources of treatment, and so forth. She even sits down with him, carefully talks through (...) the most important points, and gives him time to ask questions. Though it is a Phase 1 study and the chance that he will benefit is very low, Miguel happily agrees to take part. A week later, after the first experimental injection, she asks him if he is worried about the risks. “Risks?” he asks. “I’m sure this is safe—you’re a doctor, after all!”. (shrink)

Respect for autonomy and beneficence are frequently regarded as the two essential principles of medical ethics, and the potential for these two principles to come into conflict is often emphasised as a fundamental problem. On the one hand, we have the value of beneficence, the driving force of medicine, which demands that medical professionals act to protect or promote the wellbeing of patients or research subjects. On the other, we have a principle of respect for autonomy, which demands that we (...) respect the self-regarding decisions of individuals. As well as routinely coming into opposition with the demands of beneficence in medicine, the principle of respect for autonomy in medical ethics is often seen as providing protection against beneficial coercion (i.e. paternalism) in medicine. However, these two values are not as straightforwardly opposed as they may appear on the surface. In fact, the way that we understand autonomy can lead us to implicitly sanction a great deal of paternalistic action, or can smuggle in paternalistic elements under the guise of respect for autonomy. -/- This paper is dedicated to outlining three ways in which the principle of respect for autonomy, depending on how we understand the concept of autonomy, can sanction or smuggle in paternalistic elements. As the specific relationship between respect for autonomy and beneficence will depend on how we conceive of autonomy, I begin by outlining two dominant conceptions of autonomy, both of which have great influence in medical ethics. I then turn to the three ways in which how we understand or employ autonomy can increase or support paternalism: firstly, when we equate respect for autonomy with respect for persons; secondly, when our judgements about what qualifies as an autonomous action contain intersubjective elements; and thirdly, when we expect autonomy to play an instrumental role, that is, when we expect people, when they are acting autonomously, to act in a way that promotes or protects their own wellbeing. I then provide a proposal for how we might work to avoid this. I will suggest that it may be impossible to fully separate paternalistic elements out from judgements about autonomy. Instead, we are better off looking at why we are motivated to use judgements about autonomy as a means of restricting the actions of patients or research subjects. I will argue that this is a result of discomfort about speaking directly about our beneficent motivations in medical ethics. Perhaps we can reduce the incentive to smuggle in these beneficent motivations under the guise of autonomy by talking directly about beneficent motivations in medicine. This will also force us to recognise paternalistic motivations in medicine when they appear, and to justify paternalism where it occurs. (shrink)

Human rights have increasingly been put forward as an important framework for bioethics. In this paper, it is argued that human rights offer a potentially fruitful approach to understanding the notion of Respect for Persons in bioethics. The idea that we are owed a certain kind of respect as persons is relatively common, but also quite often understood in terms of respecting people’s autonomous choices. Such accounts do however risk being too narrow, reducing some human beings to a second-class moral (...) status. This paper puts forward a political approach to our standing as persons and a strongly pluralistic account of human rights that lays the ground for a more broadly applicable conception of Respect for Persons. It is further argued that this model also provides an example of a more general approach to philosophical ethics, an approach which is here called taxonomical pluralism. When it comes to Respect for Persons specifically, this principle is developed in terms of five distinct core concerns. (shrink)

The debate on the ‘right to know’ has simmered on for over 30 years. New examples where a right to be informed is contrasted to a right to be kept in ignorance occasionally surface and spark disagreement on the extent to which patients and research subjects have a right to be self-determining concerning the health related information they receive. Up until now, however, this debate has been unsatisfactory with regard to the question what type of rights—if any—are in play here (...) and to what extent they can provide a normative basis for informed consent. This paper provides an analysis of informed consent in the context of ‘epistemic interventions’: interventions which involve the communication of information. First, I offer an analysis of the concept of a ‘right not to know’ in the context of consent to epistemic interventions. I argue that the scope of the consent is determined by the extent to which this intervention can be seen as an infringement of the private sphere. After that I show how this analysis affects the scope and standards of informed consent. (shrink)

In the first part of the paper, three objections to the precautionary principle are outlined: the principle requires some account of how to balance risks of significant harms; the principle focuses on action and ignores the costs of inaction; and the principle threatens epistemic anarchy. I argue that these objections may overlook two distinctive features of precautionary thought: a suspicion of the value of “full scientific certainty”; and a desire to distinguish environmental doings from allowings. In Section 2, I argue (...) that any simple distinction between environmental doings and allowings is untenable. However, I argue that the appeal of such a distinction can be captured within a relational account of environmental equity. In Section 3 I show how the proposed account of environmental justice can generate a justification for distinctively “precautionary” policy-making. (shrink)

Where ethical or regulatory questions arise about an individual’s interests in accessing bioinformation about herself, the value of this information has traditionally been construed in terms of its clinical utility. It is increasingly argued, however, that the “personal utility” of findings should also be taken into account. This article characterizes one particular aspect of personal utility: that derived from the role of personal bioinformation in identity construction. The suggestion that some kinds of information are relevant to identity is not in (...) itself new. However, the account outlined here seeks to advance the debate by proposing a conception of the relationship between bioinformation and identity that does not depend on essentialist assumptions and applies beyond the narrow genetic contexts in which identity is customarily invoked. The proposal is that the identity-value of personal bioinformation may be understood in terms of its instrumental role in the construction of our narrative identities, specifically that its value lies in helping us to develop self-narratives that support us in navigating our embodied existences. I argue that this narrative conception provides useful insights that are pertinent to the ethical governance of personal bioinformation. It illuminates a wider range of ethical considerations in relation to information access; it accounts for variations in the utility of different kinds of information; and it highlights that the context in which information is conveyed can be as important as whether it is disclosed at all. These arguments are illustrated using an example drawn from psychiatric neuroimaging research. (shrink)

In this article, we seek to contribute to the debate on the requirement of disclosure in the context of informed consent for research. We defend the subjective standard of disclosure and describe ways to implement this standard in research practice. We claim that the researcher should make an effort to find out what kinds of information are likely to be relevant for those consenting to research. This invites researchers to take empirical survey information seriously, attempt to understand the cultural context, (...) talk to patients to be better able to understand what can be potentially different concerns and interests prevalent in the target population. The subjective standard of disclosure should be seen as a moral ideal that perhaps can never be perfectly implemented but still can and should be used as a normative ideal guiding research practice. In the light of these discussions, we call for more empirical research on what considerations are likely to be perceived as relevant by potential research participants recruited from different socio-economic and cultural groups. (shrink)

Bioethics can be considered as a topic, an academic discipline, a field of study, an enterprise in persuasion. The historical specificity of the forms bioethics takes is significant, and raises questions about some of these approaches. Bioethics can also be considered as a governance practice, with distinctive institutions and structures. The forms this practice takes are also to a degree country specific, as the paper illustrates by drawing on the author’s UK experience. However, the UNESCO Universal Declaration on Bioethics can (...) provide a starting point for comparisons provided that this does not exclude sensitivity to the socio-political context. Bioethics governance practices are explained by various legitimating narratives. These include response to scandal, the need to restrain irresponsible science, the accommodation of pluralist views, and the resistance to the relativist idea that all opinions count equally in bioethics. Each approach raises interesting questions and shows that bioethics should be studied as a governance practice as a complement to other approaches. (shrink)

The authors interpret the data to mean that patients think that their physicians should make relevant decisions in Learning Health System based trials, and label that as being of 'utmost importance'. However, the patients themselves (in the excerpts provided) emphasize that trust in physicians is instrumental for obtaining protection of patient's bests interests (which seems to be of utmost importance for patients). Furthermore, the perceived bias regarding outcome certainty deserves more discussion. Namely, the decision to defer to physician's opinion is (...) linked to perceived certainty of best clinical outcomes and instrumental for protection of best interest, while it lacks appreciation of the level of uncertainty that exists in clinical decision-making. Finally, a discussion on what are the implications of patient perspectives for individual, vs. relational autonomy is something the authors don't pursue, but instead use "physician-patient autonomy" throughout the paper. (shrink)

IntroductionExtended decision -making through the use of proxy decision -makers has been enshrined in a range of International Codes, Professional Guidance and Statute,For example, the UK Mental Capacity Act section 9.1; The General Medical Council ; the US National Guardianship Association ; Nuffield Council on Bioethics ; CIOMS-WHO section 6. Court cases such as Re Quinlan in the US have also contributed to establishing the groundings for the legal status of the proxy, albeit in terms of who might be suitable (...) as a proxy in cases where there was no clear appointment of them by a still competent individual. and is now widely seen as a useful means through which we can exercise control over decisions that affect our lives when we have lost capacity to make these decisions for ourselves.I will here limit myself to discussion of proxy consent for adults appointed prior to the loss of competence by the person they are acting as proxy for. The issue of p. (shrink)

The consolidation of the interdisciplinary field of bioethics in Europe and in the United States was accompanied by harsh criticisms by the social sciences; criticisms that have endured and been reshaped from the late twentieth century until the present. This article begins with a critical discussion of the myopia detected in a bioethical thought that has systematically disregarded its origins, both cultural and social. I claim that this deficit could be rectified if social scientists, in general, and sociologists, in particular, (...) were to move away from the periphery, which they still occupy today, and take up a central position in the area of bioethics. In order to analyze the distant and controversial relationship between the social sciences and bioethics, I proceed to an analysis of their various approaches, respectively guided by descriptive and normative ethics. The specific intersection of sociologists with bioethical thought will be scrutinized, in accordance with an analytical continuum that illustrates an evolution from a collaborative position to a free and independent position adopted by the social scientists. The article concludes by presenting a suggestion regarding the integration of the sociological imagination in the processes of ethical deliberation on the moral problems that emerge in biomedical research and clinical practice. In this context, further epistemological reflection is invited regarding the influence of socio-cultural sources of morality relating to the manner in which such problems have been challenged by the bioethical imagination. (shrink)

There is all over the world a sort of fever affecting all the research fields related, closely or somewhat loosely,with human health issues. Some of them – cloning, therapeutic cloning, stem cell therapy, human enhancement, etc. – arise fierce and controversial public debates. At the same time, a concern can be felt worldwide that tomorrow’s medicine might well become more and more « dual », the advanced health devices threatening to become the privilege of a small whealthy minority, or at (...) least excluding the vast majority of the poor and the low middle class. Furthermore, there are even greater disparities between wealthy and poor nations in access to health care and in the level of protection available to members of the latter’s population in a medical context. The theme of rationing health care has been ongoingly gaining in prevalence over the two to three last decades in the public debates, causing many to express worries about the ability of our health system to provide both efficiency and justice in health care. But, among all the new health care devices, are there not some which could be efficient both in terms of improvement of the management of patients’ health and of a just allocation of care ? Besides, not only emerge concerns linked with the development of new technologies in health care, but also in connection with the impact of social-political transformations onto the medical relationship : what are in this context the doctor-patient relationship in regard to autonomy and gender ? Should we be free to use or not to use these new technologies ? Might not the « quest for perfection » develop into a duty of perfection ? And, with the improvement of the therapeutic power to prolong human life, are we to think of assisted suicide as the future of death ? These are some of the issues that this conference wants to adress from an ethical perspective and with rigour. To enrich our discussions also medical and life science praticioners willing to reflect ethically on moral questions of health issues in their professional life and politicians faced with ethical decisions in the domain of health are welcome to participate. (shrink)

Does the fact that humans are vulnerable, needy and dependent beings play an important role in Kantian ethics? It is sometimes claimed that it cannot and does not. I argue that it can and does. I distinguish between broad (all persons are vulnerable) and narrow (only some persons are vulnerable) senses of vulnerability, and explain the role of vulnerability in both senses in Kantian ethics. The basis of this argument is to show that the core normative focus of Kantian ethics (...) is on the dignity that human beings have in virtue of their capacity for rational agency. This implies that the empirical conditions under which human beings can acquire, sustain, exercise, and develop their rational capacities are of core moral importance in Kantian ethics. This explains why human vulnerabilities, including the vulnerability of human bodies, are important in Kantian ethics, since rational capacities in human agents (and the bodies those rational capacities depend upon) are highly vulnerable in all persons (vulnerability in the broad sense) and especially vulnerable in some sub-groups of persons (vulnerability in the narrow sense). (shrink)

Ordinary Language Philosophy has largely fallen out of favour, and with it the belief in the primary importance of analyses of ordinary language for philosophical purposes. Still, in their various endeavours, philosophers not only from analytic but also from other backgrounds refer to the use and meaning of terms of interest in ordinary parlance. In doing so, they most commonly appeal to their own linguistic intuitions. Often, the appeal to individual intuitions is supplemented by reference to dictionaries. In recent times, (...) Internet search engine queries for expressions of interest have become quite popular. Apparently, philosophers attempt to surpass the limits of their own linguistic intuitions by appealing to experts or to factual uses of language. I argue that this attempt is commendable but that its execution is wanting. Instead of appealing to dictionaries or Internet queries, philosophers should employ computer-based linguistic corpora in order to confirm or falsify hypotheses about the factual use of language. This approach also has some advantages over methods employed by experimental philosophers. If the importance of ordinary language is stressed, the use of linguistic corpora is hardly avoidable. (shrink)

This is the second in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. This paper examines the role of ethics committees in assessing the science of the research it reviews. While ethics committees are not specifically constituted to review the science of a project, they must nevertheless assess the social benefits of research (...) and, in this context, have an important role in checking that the science has been properly peer-reviewed. (shrink)

This article offers a critical analysis of David Miller’s proposal that liberal immigration policies should be conceptualized in terms of a quasi-contract between receiving nations and immigrant groups, designed to ensure both that cultural diversity does not undermine trust among citizens and that immigrants are treated fairly. This proposal fails to address sufficiently two related concerns. Firstly, an open-ended, quasi-contractual requirement for cultural integration leaves immigrant groups exposed to arbitrary critique as insufficiently integrated and unworthy of trust as citizens. Secondly, (...) the focus on national culture instead of citizenship obfuscates the close link between political membership and political trustworthiness. An examination of two models of interpersonal trust, affective and cognitive,shows that there is no room for the mid-way position associated with a quasi-contract. The effect of grounding political trust in a shared national culture instead of democratic institutions is to normalize the domination of immigrants and citizens alike. (shrink)

The new dilemmas and responsibilities which arise in bioethics both because of the unprecedented pace of scientific development and of growing moral pluralism are more and more difficult to grapple with. At the ‘global’ level, the call for the universal nature at least of some fundamental moral values and principles is often being contended as a testament of arrogance, if not directly as a new kind of subtler imperialism. The human rights framework itself, which provided the basis for the most (...) relevant international declarations and documents, is not exempt from the charge. However, the refusal of a top-down conception of the universal as a sort of product for exportation should not be confused with a relativistic landscape, where all the cows can be indifferently black or white. This contribution aims at outlining an approach, which reconciles universalism as enshrined in founding human rights declarations with respect for cultural diversity. In order to do so, two conceptual frameworks are discussed: the ‘tool-kit’ model and the morals/ethics difference. The example of the right to quality health care confirms the argument that striking a balance between cherishing pluralism and defending some fundamental rights and obligations does not amount to an assertion of moral imperialism. (shrink)

Health-related quality of life measures aim to assess patients’ subjective experience in order to gauge an increasingly wide variety of health care issues such as patient needs; satisfaction; side effects; quality of care; disease progression and cost effectiveness. Their popularity is undoubtedly due to a larger initiative to provide patient-centered care. The use of patient perspectives to guide health care improvements and spending is rooted in the idea that we must respect patients as self-determining agents. In this paper I look (...) at the two main orientations to quality of life measurement: standardized and individualized measures. I argue that while these measures are attempts to provide for patient self-determination, they both fail to do so. In their place I suggest a new approach which overcomes their respective difficulties: a dialogic approach. (shrink)

In this paper I shed light on the connection between respect, trust and patients’ satisfaction with their medical care. Using data collected in interviews with 49 women who had managed, or were in the process of managing, their risk of ovarian cancer using prophylactic surgery or ovarian screening, I examine their reported dissatisfaction with medical encounters. I argue that although many study participants appeared to mistrust their healthcare professionals’ (HCPs) motives or knowledge base, their dissatisfaction arose not from a lack (...) of trust, but from HCPs’ failure to treat them as persons or take their concerns seriously. I conclude by describing how respect, as evidenced by “being taken seriously”, is important for the development of trusting Patient–HCP relationships. (shrink)

Für die Argumentation von Moralphilosophen, die die Legalisierung der aktiven Sterbehilfe befürworten, spielt das Autonomieprinzip eine wichtige Rolle. Ihrer Auffassung nach verlangt der Respekt vor der Autonomie, die Entscheidung eines schwer kranken Menschen gegen die Fortsetzung des Lebens vorbehaltlos anzuerkennen. Dagegen haben verschiedene Theoretiker auf Gefahren hingewiesen, die die rechtliche Zulassung der Tötung auf Verlangen für die individuelle Autonomie mit sich bringt. Sobald der Kranke über die Möglichkeit der aktiven Sterbehilfe verfüge, falle ihm die Verantwortung für die Inanspruchnahme von Pflegeleistungen (...) zu. In der Folge könne u. a. von Seiten der Familie die Forderung an ihn gestellt werden, den vom Gesetzgeber eröffneten Ausweg zu nutzen und sie von der Last seiner Pflege zu befreien. Die Bedenken erscheinen insofern berechtigt, als Formen sozialen Zwangs vorstellbar sind, die eine freie Entscheidung des Patienten verhindern. Allerdings vermag weder das Verbot noch die Zulassung der aktiven Sterbehilfe eine autonome Entscheidung aller Individuen zu gewährleisten. Die Abwägung der Risiken, mit denen beide Optionen behaftet sind, spricht im Ergebnis für die Legalisierung der Tötung auf Verlangen. (shrink)

Freud (and later commentators) have failed to explain how the origins of psychoanalytical theory began with a positivist investment without recognizing a dual epistemological commitment: simply, Freud engaged positivism because he believed it generally equated with empiricism, which he valued, and he rejected ‘philosophy’, and, more specifically, Kantianism, because of the associated transcendental qualities of its epistemology. But this simple dismissal belies a deep investment in Kant’s formulation of human reason, in which rationality escapes natural cause and thereby bestows humans (...) with cognitive and moral autonomy. Freud also segregated human rationality: he divided the mind between (1) an unconscious grounded in the biological and thus subject to its own laws, and (2) a faculty of autonomous reason, lodged in consciousness and free of natural forces to become the repository of interpretation and free will. Psychoanalysis thus rests upon a basic Kantian construction, whereby reason, through the aid of analytic techniques, provides a detached scrutiny of the natural world, i.e. the unconscious mental domain. Further, sovereign reason becomes the instrument of self-knowing in the pursuit of human perfection. Herein lies the philosophical foundation of psychoanalytic theory, a beguiling paradox in which natural cause and autonomous reason — determinism and freedom — are conjoined despite their apparent logical exclusion. (shrink)

The origins of professional ethical codes and oaths are explored. Their legitimacy and usefulness within the profession are questioned and an alternative ethical source is suggested. This source relies on a commonly shared, naturally knowable set of principles known as common morality.