Trust relations in the health services have changed from asymmetrical paternalism to symmetrical autonomy-based participation, according to a common account. The promises of personalized medicine emphasizing empowerment of the individual through active participation in managing her health, disease and well-being, is characteristic of symmetrical trust. In the influential Kantian account of autonomy, active participation in management of own health is not only an opportunity, but an obligation. Personalized medicine is made possible by the digitalization of medicine with an ensuing increased (...) tailoring of diagnostics, treatment and prevention to the individual. The ideal is to increase wellness by minimizing the layer of interpretation and translation between relevant health information and the patient or user. Arguably, this opens for a new level of autonomy through increased participation in treatment and prevention, and by that, increased empowerment of the individual. However, the empirical realities reveal a more complicated landscape disturbed by information ‘noise’ and involving a number of complementary areas of expertise and technologies, hiding the source and logic of data interpretation. This has lead to calls for a return to a mild form of paternalism, allowing expertise coaching of patients and even withholding information, with patients escaping responsibility through blind or lazy trust. This is morally unacceptable, according to Kant’s ideal of enlightenment, as we have a duty to take responsibility by trusting others reflexively, even as patients. Realizing the promises of personalized medicine requires a system of institutional controls of information and diagnostics, accessible for non-specialists, supported by medical expertise that can function as the accountable gate-keeper taking moral responsibility required for an active, reflexive trust. (shrink)

Trust can be understood as a precondition for a well-functioning society or as a way to handle complexities of living in a risk society, but also as a fundamental aspect of human morality. Interactions on the Internet pose some new challenges to issues of trust, especially connected to disembodiedness. Mistrust may be an important obstacle to Internet use, which is problematic as the Internet becomes a significant arena for political, social and commercial activities necessary for full participation in a liberal (...) democracy. The Categorical Imperative lifts up trust as a fundamental component of human ethical virtues – first of all, because deception and coercion, the antitheses of trust, cannot be universalized. Mistrust is, according to Kant, a natural component of human nature, as we are social beings dependent on recognition by others but also prone to deceiving others. Only in true friendships can this tendency be overcome and give room for unconditional trust. Still we can argue that Kant must hold that trustworthy behaviour as well as trust in others is obligatory, as expressions of respect for humanity. The Kantian approach integrates political and ethical aspects of trust, showing that protecting the external activities of citizens is required in order to act morally. This means that security measures, combined with specific regulations are important preconditions for building online trust, providing an environment enabling people to act morally and for trust-based relationships. (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)

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)

It is common to interpret Kant’s idea of public reason and the Enlightenment motto to ‘think for oneself’ as incompatible with the view that testimony and judgement of credibility is essential to rational public deliberation. Such interpretations have led to criticism of contemporary Kantian approaches to deliberative democracy for being intellectualistic, and for not considering our epistemic dependence on other people adequately. In this article, I argue that such criticism is insufficiently substantiated, and that Kant’s idea of public reason is (...) neither at odds with deference to a certain kind of authority, nor with making judgements of character in rational deliberation. This view is corroborated by recent work on Kant’s epistemology of testimony. (shrink)

Should the development of pharmacological cognitive enhancers raise worries about doping in cognitively demanding activities? In this paper, we argue against using current evidence relating to enhancement to justify a ban on cognitive enhancers using the example of chess. It is a mistake to assume that enhanced cognitive functioning on psychometric testing is transferable to chess performance because cognitive expertise is highly complex and in large part not merely a function of the sum specific sub-processes. A deeper reason to doubt (...) that pharmacological cognitive enhancers would be as significant in mind sports is the misleading parallel with physical enhancement. We will make the case that cognitive performance is less mechanical in nature than physical performance. We draw lessons from this case example of chess for the regulation of cognitive enhancement more generally in education and the professions. Premature regulation runs the risk of creating a detrimental culture of suspicion that ascribes unwarranted blame. (shrink)

The aim of this paper is to analyze the process of risk communication in the context of assisted reproduction in Latvia. The paper is based on a qualitative methodology and two types of data: media analysis and 30 semi-structured interviews (11 patients, 4 egg donors, 15 experts). The study explores a broad definition of risk communication and explores three types of risks: health, psychosocial, and moral. We ask (1), who is involved in risk communication, (2), how risks are discussed using (...) different channels of communication, and (3), what ethical problems arise during this process. In the process of analysis, we identified four types of information channels and two strategies of risk communication used by patients, as well as several ethical problems. In our view, the analysis of risk communication practices is significant to improve patient/physician relationship, as well as better meet patients' needs for comprehensive risk information. (shrink)

The food sector and health sector become more and more intertwined. This raises many possibilities, but also questions. One of them is the question of what the implication is for public trust in food and health issues. In this article, I argue that the products on the interface between food and health entails some serious questions of trust. Trust in food products and medical products is often based upon a long history of rather clear patterns of mutual expectations, yet these (...) expectations are not similar in both sectors. As long as the food sector and health sector remain distinct, these differences will not lead to problems of trust, yet when new products are introduced, like functional foods or personalized dietary advices, trust can be threatened. To prevent this, we need clarity with regard to what we can expect of these new products and of whom to expect what in this situation. This requires not␣only adequate information on operating procedures, but also a profound debate␣on responsibilities and the explication and interpretation of moral values and norms. (shrink)

MacKay’s Public Health Virtue Ethics offers a distinctive approach to public health ethics, with social structures at the forefront. MacKay’s helpful overview of the recent literature considers three distinct referents for ascribing virtues in public health ethics: (i) individuals, such as public health practitioners, (ii) social structures, such as public health institutions and policies and (iii) the communities affected by public health policy. While MacKay is interested in virtuous structures, I am interested in the structure of virtue as a precursor (...) to this approach. In this commentary, I seek to unpack the structure of virtue itself, to delineate what various accounts of public health virtues offer, including MacKay’s new account. For such clarity, I turn to David Pears’ neo-Aristotelian essay on moral courage, in which he distinguishes external goals, internal goals and countergoals. Additional virtue vocabulary advances discussion of how the moral psychology of virtue traditions can be best adapted to public health professions, policy and practice. (shrink)

This article argues that hope is of value in clinical ethics and that it can be important for clinicians to be sensitive to both the risks of false hope and the importance of retaining hope. However, this sensitivity requires an understanding of the complexity of hope and how it bears on different aspects of a well-functioning doctor-patient relationship. We discuss hopefulness and distinguish it from three different kinds of hope, or ‘hopes for’, and then relate these distinctions back to differing (...) accounts of autonomy. This analysis matters because it shows how an overly narrow view of the ethical obligations of a clinician to their patient, and autonomy, might lead to scenarios where patients regret the choices they make. (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)

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)

Medical bribery seems to be a global problem from Eastern Europe and the Balkans to China, a diffuse phenomenon, starting with morally acceptable gratitude and ending with institutional bribery. I focus my attention on Romania and analyze similar cases in Eastern European and postcommunist countries. Medical bribery can be regarded as a particular form of human transaction, a kind of primitive contract that occurs when people do not trust institutions or other forms of social contract that are meant to guarantee (...) their rights and protect their interests. Concluding with strategies to fight medical bribery, I will underline better public policies for financing health and social care, and an ethic of trust that may help to restore trustworthiness of institutions and to rebuild interpersonal trust. This should be complemented by an educational program dedicated to understanding the negative consequences and mechanisms of corruption and the importance of ethical behavior. (shrink)

Informed consent requirements for medical research have expanded over the past half-century. The Declaration of Helsinki now includes an explicit positive obligation to inform subjects about funding sources. This is problematic in a number of ways and seems to oblige researchers to disclose information irrelevant to most consent decisions. It is argued here that such a problematic obligation involves an “informational fallacy.” The aim in the second part of the paper is to provide a better approach to making sense of (...) how a failure to inform about funding sources wrongs subjects: by making appeals to obligations to refrain from misleading by omission. This alternative approach—grounded in a general obligation to refrain from misleading, an obligation that is independent of informed consent—provides a basis for a norm that protects subjects’ interests, without the informational fallacy. The approach developed here avoids the problems identified with the currently specified general obligation to inform about funding sources. (shrink)

Volume 19, Issue 6, June 2019, Page 64-66.

BackgroundBiobanks provide an important foundation for genomic and personalised medicine. In order to enhance their scientific power and scope, they are increasingly becoming part of national or international networks. Public trust is essential in fostering public engagement, encouraging donation to, and facilitating public funding for biobanks. Globalisation and networking of biobanking may challenge this trust.MethodsWe report the results of an Australian study examining public attitudes to the networking and globalisation of biobanks. The study used quantitative and qualitative methods in conjunction (...) with bioethical analysis in order to determine factors that may contribute to, and threaten, trust.ResultsOur results indicate a generally high level of trust in biobanks and in medical research more broadly. Key factors that can reduce perceived trustworthiness of biobanks are commercialisation and involvement in global networking.ConclusionsWe conclude that robust ethical oversight and governance standards can both promote trust in global biobanking and ensure that this trust is warranted. (shrink)

Trust in the "agro-food" sector has been declining in recent years reflecting a general decline of trust in traditional decision making processes. The introduction of new technologies in the production of foods re-introduces the problem of trust and highlights the parameters affecting its structure and direction. This paper discusses the issue of trust in relation to the introduction of functional foods into the market. Trust is assessed as both a philosophical and a psychological construct with particular emphasis on its communication (...) aspects. The paper ends with specific recommendations for action in the agro-food sector. (shrink)

The UK-based deliberations that led up to the legalisation of two new ‘mitochondrial donation’ techniques in 2015, and which continued after that time as regulatory details were determined, featured a division of advisory labour that is common when decisions are made about new technologies. An expert panel was convened by the Human Fertilisation and Embryology Authority, charged with assessing the scientific and technical aspects of these techniques. Meanwhile, the Nuffield Council on Bioethics addressed the ethical issues. While this division of (...) labour was undertaken in the name of thoroughness, I argue here that it can have the unintended consequence that hybrid questions that simultaneously involve ethical and technical aspects—especially questions about where to set evidential thresholds for the acceptance of new technology—do not receive enough attention. (shrink)

Patients’ trust in their physicians improves their health outcomes because of better compliance, more disclosure, stronger placebo effect, and more physicians’ trustworthy behaviors. Patients’ autonomy may also impact on health outcomes and is increasingly being emphasized in health care. However, despite the critical role of trust and autonomy, patients that naïvely trust their physicians may become overly dependent and lack the motivation to participate in medical care. In this article, we argue that increased trust does not necessarily imply decreased autonomy. (...) Furthermore, patients with high levels of trust and autonomy preferences are most likely to have the best health outcomes. We propose a framework for understanding simultaneous trust and autonomy preferences and for recognizing their interactive effects on health outcomes in the dynamic medical encounter. This framework argues that policy makers and health care providers should make efforts to foster not only patients’ trust but also their preferences for autonomy and thus gain the best position for achieving health-related goals. (shrink)

In the West, mainstream bioethicists tend to appreciate intimate relationships as a hindrance to individual autonomy. Scholars have even argued against approaching a mother to donate a kidney to save the life of her child; the request, they claim, is too manipulative and, thereby, violates her autonomy. For Chinese bioethicists, such a moral analysis is absurd. The intimate relationship between mother and child establishes strong mutual obligations. It creates mutual moral responsibilities that often require sacrifices for each other. This paper (...) argues that while aiding others is a moral duty, helping one’s family is a much stronger duty and poses no threat to one’s autonomy. For Confucianism, empathetic intimate feelings, the heart and mind of ren, rest at the root of morality. It requires that we, as moral beings, assume duties to relieve the suffering of others. The more intimate the relationship the stronger the obligation to assist. The family is a closely knitted moral community. Family members often share living resources, mutual experiences, and a sense of identity. Family members act as a social unit, and, ordinarily, mutual obligations among members have priority over duties to those outside of the family. For Confucian bioethics, family-based consent to medical treatment is regarded as natural and reasonable. Family-based decision making is a taken-for-granted norm of social life. While close family members have priority, Confucianism extends such obligations outward toward members of the extended family and the society at large. There is a general principle of gradation of love, which reflects different degrees of personal intimacy and, therefore, of moral obligation. In this fashion, Confucianism seeks to treat the whole of society as one extended family. Hence, in bioethics, mutual responsibility and family-based consent are regarded as basic principles. Through a series of case discussions, this paper illustrates that atomistic individual-based autonomy offers but a poor response to bioethical issues. (shrink)

Ethical considerations from both the clinical and public health perspectives have been used to examine whether it is ethically permissible to mandate the seasonal influenza vaccine for healthcare workers (HCWs). Both frameworks have resulted in arguments for and against the requirement. Neither perspective resolves the question fully. By adding components of justice to the argument, I seek to provide a more fulsome ethical defence for requiring seasonal influenza immunisation for HCWs. Two critical components of a just society support requiring vaccination: (...) fairness of opportunity and the obligation to follow democratically formulated rules. The fairness of opportunity is informed by Rawls’ two principles of justice. The obligation to follow democratically formulated rules allows us to focus simultaneously on freedom, plurality and solidarity. Justice requires equitable participation in and benefit from cooperative schemes to gain or profit socially as individuals and as a community. And to be just, HCW immunisation exemptions should be limited to medical contraindications only. In addition to the HCWs fiduciary duty to do what is best for the patient and the public health duty to protect the community with effective and minimally intrusive interventions, HCWs are members of a just society in which all members have an obligation to participate equitably in order to partake in the benefits of membership. (shrink)

The right not to know is a contested matter. This can be because the inversion of the normal framing of entitlement to information about one's own health is thought to be illogical and inconsistent with self-authorship and/or because the very idea of claiming a right not to know information is an inappropriate appeal to the discourse of rights that places impossible responsibilities on others. Notwithstanding, there has been a sustained increase in this kind of appeal in recent years fueled in (...) large part by the rise and rise of the importance of personal autonomy in health care ethics, and by domestic and international health law. The right not to know has been acknowledged in at least two important international legal instruments. For example, the UNESCO Universal Declaration on the Human Genome and Human Rights, Article 5c provides: “The right of every individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected.”. (shrink)

Over the last several years, as cesarean deliveries have grown increasingly common, there has been a great deal of public and professional interest in the phenomenon of women 'choosing' to deliver by cesarean section in the absence of any specific medical indication. The issue has sparked intense conversation, as it raises questions about the nature of autonomy in birth. Whereas mainstream bioethical discourse is used to associating autonomy with having a large array of choices, this conception of autonomy does not (...) seem adequate to capture concerns and intuitions that have a strong grip outside this discourse. An empirical and conceptual exploration of how delivery decisions ought to be negotiated must be guided by a rich understanding of women's agency and its placement within a complicated set of cultural meanings and pressures surrounding birth. It is too early to be 'for' or 'against' women's access to cesarean delivery in the absence of traditional medical indications – and indeed, a simple pro- or con- position is never going to do justice to the subtlety of the issue. The right question is not whether women ought to be allowed to choose their delivery approach but, rather, taking the value of women's autonomy in decision-making around birth as a given, what sorts of guidelines, practices, and social conditions will best promote and protect women's full inclusion in a safe and positive birth process. (shrink)

For decades, the greater part of efforts to improve regulatory frameworks for research ethics has focused on informed consent procedures; their design, codification and regulation. Why is informed consent thought to be so important? Since the publication of the Belmont Report in 1979, the standard response has been that obtaining informed consent is a way of treating individuals as autonomous agents. Despite its political success, the philosophical validity of this Belmont view cannot be taken for granted. If the Belmont view (...) is to be based on a conception of autonomy that generates moral justification, it will either have to be reinterpreted along Kantian lines or coupled with a something like Mill’s conception of individuality. The Kantian interpretation would be a radical reinterpretation of the Belmont view, while the Millian justification is incompatible with the liberal requirement that justification for public policy should be neutral between controversial conceptions of the good. This consequence might be avoided by replacing Mill’s conception of individuality with a procedural conception of autonomy, but I argue that the resulting view would in fact fail to support a non-Kantian, autonomy-based justification of informed consent. These difficulties suggest that insofar as informed consent is justified by respect for persons and considerations of autonomy, as the Belmont report maintained, the justification should be along the lines of Kantian autonomy and not individual autonomy. (shrink)

This study tests how various kinds of trust impact attitudes toward euthanasia among the general public. The indication that trust might have an impact on euthanasia attitudes is based on the slippery slope argument, which asserts that allowing euthanasia might lead to abuses and involuntary deaths. Adopting this argument usually leads to less positive attitudes towards euthanasia. Tying in with this, it is assumed here that greater trust diminishes such slippery slope fears, and thereby increases euthanasia acceptance.

Due to the rise of functional foods,the distinction between foods and medicines hasbecome increasingly blurred. A new EUregulation covering health claims and otherclaims on food and drink products is on thedocks. A basic motive of legal regulation oflabeling and advertising is to inform andprotect the consumer. Promotion of informedchoice and consumer protection may, however, beconflicting objectives. A further problemsprings from the fact that choice, likeconsent, is a propositional attitude andtherefore opaque. Thus it is extremelydifficult for regulators to fasten onparticular formulations (...) of claims. Despite theprofessed respect for the autonomy of theconsumer, paternalism is never far away andeasily enters in various guises. (shrink)

The clinical relationship has been underexplored in dementia care. This is in part due to the way that the clinical relationship has been articulated and understood in bioethics. Robert Veatch’s social contract model is representative of a standard view of the clinical relationship in bioethics. But dementia presents formidable challenges to the standard clinical relationship, including ambiguity about when the clinical relationship begins, how it weathers changes in narrative identity of patients with dementia, and how the intimate involvement of family (...) fits alongside a paradigmatically dyadic relationship. Drawing on work in recent feminist theory, a critique is offered of the standard clinical relationship in bioethics as underwritten by an individualistic conception of autonomy. An alternative view of the clinical relationship in dementia, one that embraces a relational account of autonomy, is put forward. (shrink)

ABSTRACT:We argue that Confucianism makes a fundamental contribution to understanding why civility is necessary for a morally decent workplace. We begin by reviewing some limits that traditional moral theories face in analyzing issues of civility. We then seek to establish a Confucian alternative. We develop the Confucian idea that even in business, humans may be sacred when they observe rituals culturally determined to express particular ceremonial significance. We conclude that managers and workers should understand that there is a broad range (...) of morally important rituals in organizational life and that managers should preserve and develop the intelligibility and integrity of many of these rituals. (shrink)

In biomedical research lack of trust is seen as a great threat that can severely jeopardise the whole biomedical research enterprise. Practices, such as informed consent, and also the administrative and regulatory oversight of research in the form of research ethics committees and Institutional Review Boards, are established to ensure the protection of future research subjects and, at the same time, restore public trust in biomedical research. Empirical research also testifies to the role of trust as one of the decisive (...) factors in research participation and lack of trust as a barrier for consenting to research. However, what is often missing is a clear definition of trust. This paper seeks to address this gap. It starts with a conceptual analysis of the term trust. It compares trust with two other related terms, those of reliance and trustworthiness, and offers a defence of Baier’s attribute of ‘good will’ a basic characteristic of trust. It, then, proceeds to consider trust in the context of biomedical research by examining two questions: First, is trust necessary in biomedical research?; and second, do increases in regulatory oversight of biomedical research also increase trust in the field? This paper argues that regulatory oversight is important for increasing reliance in biomedical research, but it does not improve trust, which remains important for biomedical research. It finishes by pointing at professional integrity as a way of promoting trust and trustworthiness in this field. (shrink)

BackgroundAs the use of AI becomes more pervasive, and computerised systems are used in clinical decision-making, the role of trust in, and the trustworthiness of, AI tools will need to be addressed. Using the case of computational phenotyping to support the diagnosis of rare disease in dysmorphology, this paper explores under what conditions we could place trust in medical AI tools, which employ machine learning.MethodsSemi-structured qualitative interviews with stakeholders who design and/or work with computational phenotyping systems. The method of constant (...) comparison was used to analyse the interview data.ResultsInterviewees emphasized the importance of establishing trust in the use of CP technology in identifying rare diseases. Trust was formulated in two interrelated ways in these data. First, interviewees talked about the importance of using CP tools within the context of a trust relationship; arguing that patients will need to trust clinicians who use AI tools and that clinicians will need to trust AI developers, if they are to adopt this technology. Second, they described a need to establish trust in the technology itself, or in the knowledge it provides—epistemic trust. Interviewees suggested CP tools used for the diagnosis of rare diseases might be perceived as more trustworthy if the user is able to vouchsafe for the technology’s reliability and accuracy and the person using/developing them is trusted.ConclusionThis study suggests we need to take deliberate and meticulous steps to design reliable or confidence-worthy AI systems for use in healthcare. In addition, we need to devise reliable or confidence-worthy processes that would give rise to reliable systems; these could take the form of RCTs and/or systems of accountability transparency and responsibility that would signify the epistemic trustworthiness of these tools. words 294. (shrink)

It is widely acknowledged that trust plays an important role for the acceptability of data sharing practices in research and healthcare, and for the adoption of new health technologies such as AI. Yet there is reported distrust in this domain. Although in the UK, the NHS is one of the most trusted public institutions, public trust does not appear to accompany its data sharing practices for research and innovation, specifically with the private sector, that have been introduced in recent years. (...) In this paper, we examine the question of, what is it about sharing NHS data for research and innovation with for-profit companies that challenges public trust? To address this question, we draw from political theory to provide an account of public trust that helps better understand the relationship between the public and the NHS within a democratic context, as well as, the kind of obligations and expectations that govern this relationship. Then we examine whether the way in which the NHS is managing patient data and its collaboration with the private sector fit under this trust-based relationship. We argue that the datafication of healthcare and the broader ‘health and wealth’ agenda adopted by consecutive UK governments represent a major shift in the institutional character of the NHS, which brings into question the meaning of public good the NHS is expected to provide, challenging public trust. We conclude by suggesting that to address the problem of public trust, a theoretical and empirical examination of the benefits but also the costs associated with this shift needs to take place, as well as an open conversation at public level to determine what values should be promoted by a public institution like the NHS. (shrink)

Communication by scientists with policy makers and attentive publics raises ethical issues. Scientists need to decide how to communicate knowledge effectively in a way that nonscientists can understand and use, while remaining honest scientists and presenting estimates of the uncertainty of their inferences. They need to understand their own ethical choices in using scientific information to communicate to audiences. These issues were salient in the Fourth Assessment of the Intergovernmental Panel on Climate Change with respect to possible sea level rise (...) from disintegration of the Greenland and West Antarctic ice sheets. Due to uncertainty, the reported values of projected sea level rise were incomplete, potentially leading some relevant audiences to underestimate future risk. Such judgments should be made in a principled rather than an ad hoc manner. Five principles for scientific communication under such conditions are important: honesty, precision, audience relevance, process transparency, and specification of uncertainty about conclusions. Some of these principles are of intrinsic importance while others are merely instrumental and subject to trade-offs among them. Scientists engaged in assessments under uncertainty should understand these principles and which trade-offs are acceptable. (shrink)

Volume 19, Issue 5, May 2019, Page 29-31.

Wearable robots and exoskeletons are relatively new technologies designed for assisting and augmenting human motor functions. Due to their different possible design applications and their intimate connection to the human body, they come with specific ethical, legal, and social issues, which have not been much explored in the recent ELS literature. This paper draws on expert consultations and a literature review to provide a taxonomy of the most important ethical, legal, and social issues of wearable robots. These issues are categorized (...) in wearable robots and the self, wearable robots and the other, and wearable robots in society. (shrink)

Should a society oriented towards justice provide parents with the possibility of enhancing their children's genes? The opposing arguments of authors in the Rawls School and of the theorist of communicative action, Jürgen Habermas, are analysed in terms of their key concepts. Their positions are then assessed from the point of view of the principles of the pedagogical task to educate towards autonomy under conditions of asymmetry. They each call for respect both of children's difference and of their dependence, and (...) they ask for parents to moderate their expectations. In the light of this, Habermas's critique of genetic intervention, based on a Kantian understanding of autonomy as the capacity to be moral, on Kierkegaard's concept of being able to be oneself, and on respect for finitude, is here to be justified. (shrink)

Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents (ethics guidelines), overseeing bodies (research ethics committees) and formal procedures (informed consent). The process of institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the research system. This article examines some limitations of this approach. (...) First, past atrocities cannot provide the necessary justification unless institutionalized distrust is a necessary or efficient means to prevent future ones – and there are several reasons to doubt this. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers – the very qualities that institutionalized distrust calls into question. Third, ethics guidelines cannot, as is sometimes assumed, educate or guide researchers in moral behaviour unless they already possess considerable capacity for moral judgment. Fourth, institutionalized distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences if their moral competence is allowed to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and are not obstructed from so doing. (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)

Compromise on moral matters attracts ambivalent reactions, since it seems at once laudable and deplorable. When a hotly-contested phenomenon like assisted dying is debated, all-or-nothing positions tend to be advanced, with little thought given to the desirability of, or prospects for, compromise. In response to recent articles by Søren Holm and Alex Mullock, in this article I argue that principled compromise can be encouraged even in relation to this phenomenon, provided that certain conditions are present . In order to qualify (...) as appropriately principled, the ensuing negotiations require disputants to observe three constraints: they should be suitably reflective, reliable and respectful in their dealings with one another. The product that will result from such a process will also need to split the difference between the warring parties. In assisted dying, I argue that a reduced offence of ‘compassionate killing’ can achieve this. I acknowledge, however, that splitting the difference can induce splitting headaches, as there remain certain questions to be answered. Hopefully, however, sufficient work is done here to defend attempts to occupy the middle ground, whether these relate to assisted dying specifically or to other disputed moral matters. (shrink)

ZusammenfassungOnora O’Neill hat 1984 den Zusammenhang zwischen grundsätzlichen Bedenken gegenüber dem ethischen Autonomiebegriff und der Kritik an der paternalistisch geprägten medizinethischen Praxis hergestellt, nicht die tatsächliche Einwilligung des konkreten Patienten zu berücksichtigen, sondern die angenommene, hypothetische Einwilligung, die ein idealisierter, völlig rationaler Patient geben würde. Im Anschluss an experimentalpsychologische Studien zur subliminalen Wahrnehmung, zu Volition und Handlungskontrolle erfahren kompatibilistische Theorien menschlicher Freiheit innerhalb der theoretischen Philosophie neue Popularität. Eine Handlung ist demnach frei, wenn sie das Resultat bestimmter Fähigkeiten einer Person (...) ist („Kompetenztheorie“). Der Artikel setzt sich mit zwei dieser Theorien, Henrik Walters Konzept „natürlicher Freiheit“ und Michael Pauens „Minimalkonzeption personaler Freiheit“ näher auseinander—und zwar vorderhand im Hinblick auf den Entwurf eines nichtidealisierten ethischen Autonomiekonzeptes. Als solches ist es an der aktualen bzw. faktischen Fähigkeit einer Person ausgerichtet, rekurrierend auf die spezifische Determiniertheit autonomer Entscheidungen und Handlungen sowie auf ein relativiertes Konzept menschlicher Vernunft. (shrink)

Onora O’Neill hat 1984 den Zusammenhang zwischen grundsätzlichen Bedenken gegenüber dem ethischen Autonomiebegriff und der Kritik an der paternalistisch geprägten medizinethischen Praxis hergestellt, nicht die tatsächliche Einwilligung des konkreten Patienten zu berücksichtigen, sondern die angenommene, hypothetische Einwilligung, die ein idealisierter, völlig rationaler Patient geben würde. Im Anschluss an experimentalpsychologische Studien zur subliminalen Wahrnehmung, zu Volition und Handlungskontrolle erfahren kompatibilistische Theorien menschlicher Freiheit innerhalb der theoretischen Philosophie neue Popularität. Eine Handlung ist demnach frei, wenn sie das Resultat bestimmter Fähigkeiten einer Person (...) ist („Kompetenztheorie“). Der Artikel setzt sich mit zwei dieser Theorien, Henrik Walters Konzept „natürlicher Freiheit“ und Michael Pauens „Minimalkonzeption personaler Freiheit“ näher auseinander—und zwar vorderhand im Hinblick auf den Entwurf eines nichtidealisierten ethischen Autonomiekonzeptes. Als solches ist es an der aktualen bzw. faktischen Fähigkeit einer Person ausgerichtet, rekurrierend auf die spezifische Determiniertheit autonomer Entscheidungen und Handlungen sowie auf ein relativiertes Konzept menschlicher Vernunft. (shrink)

ZusammenfassungOnora O’Neill hat 1984 den Zusammenhang zwischen grundsätzlichen Bedenken gegenüber dem ethischen Autonomiebegriff und der Kritik an der paternalistisch geprägten medizinethischen Praxis hergestellt, nicht die tatsächliche Einwilligung des konkreten Patienten zu berücksichtigen, sondern die angenommene, hypothetische Einwilligung, die ein idealisierter, völlig rationaler Patient geben würde. Im Anschluss an experimentalpsychologische Studien zur subliminalen Wahrnehmung, zu Volition und Handlungskontrolle erfahren kompatibilistische Theorien menschlicher Freiheit innerhalb der theoretischen Philosophie neue Popularität. Eine Handlung ist demnach frei, wenn sie das Resultat bestimmter Fähigkeiten einer Person (...) ist. Der Artikel setzt sich mit zwei dieser Theorien, Henrik Walters Konzept „natürlicher Freiheit“ und Michael Pauens „Minimalkonzeption personaler Freiheit“ näher auseinander—und zwar vorderhand im Hinblick auf den Entwurf eines nichtidealisierten ethischen Autonomiekonzeptes. Als solches ist es an der aktualen bzw. faktischen Fähigkeit einer Person ausgerichtet, rekurrierend auf die spezifische Determiniertheit autonomer Entscheidungen und Handlungen sowie auf ein relativiertes Konzept menschlicher Vernunft. (shrink)

It is generally assumed in research ethics that research participants have an unconditional right to withdraw from research without any detriment or reprisal. This paper analyses this right in the context of biobank research and argues that the traditional shape of the right in clinical research can be modified in biobank research without incurring significant ethical cost. The paper falls in three parts. The first part is a brief explication of the philosophical justification of the right to withdraw. The second (...) part presents a number of extant criticisms of the right. And the third and final part argues that although a right to withdraw is crucial in relation to biobank research, such a right has to be specified in a different way to the similar right in relation to clinical research. (shrink)