I outline a number of parallels between trust and distrust, emphasising the significance of situations in which both trust and distrust would be an imposition upon the (dis)trustee. I develop an account of both trust and distrust in terms of commitment, and argue that this enables us to understand the nature of trustworthiness. Note that this article is available open access on the journal website.

This paper is concerned with the moral justification for palliative sedation until death. Palliative sedation involves the intentional lowering of consciousness for the relief of untreatable symptoms. The paper focuses on the moral problems surrounding the intentional lowering of consciousness until death itself, rather than possible adjacent life-shortening effects. Starting from a Kantian perspective on virtue, it is shown that continuous deep sedation until death (CDS) does not conflict with the perfect duty of moral self-preservation because CDS does not destroy (...) capacities for agency. In addition, it is argued that CDS can frustrate the imperfect duty of self-cultivation by reducing consciousness permanently. Nevertheless, there are cases where CDS is morally acceptable, namely, cases where the agent has already permanently lost the possibility for free action in advance of sedation—for example, due to excruciating and ongoing pain. Because the latter can be difficult to diagnose properly, safeguards may be needed in order to prevent the application of CDS for the wrong reasons. (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)

This essay explores the two main objectives of Bishop’s book, which he analyzes in the context of the care for the dying: the medical metaphysics underlying medical science and biopolitics as governance of the human body. This essay discusses Bishop’s claims in view of newer developments in medicine, especially the turn to the construction of life, and confronts the concept of the patient’s sovereignty with an alternative model of vulnerable agency. In order to overcome the impasses of contemporary bioethics, the (...) essay argues that practical reason requires a two-fold ethics: first, it must develop a new hermeneutics of illness and disease, and second, in order to protect the individuals in the process of dying, moral claims concerning death must be based on the concept of human rights. (shrink)

This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue that self-testing provides a (...) specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility. (shrink)

The pandemic caused by the SARS-CoV2 novel coronavirus is creating a global crisis. There is a global ambience of uncertainty and anxiety. In addition, nations have imposed strict and restrictive public health measures including lockdowns. In this heightened time of vulnerability, public cooperation to preventive measures depends on trust and confidence in the health system. Trust is the optimistic acceptance of the vulnerability in the belief that the health system has best intentions. On the other hand, confidence is assessed based (...) on previous experiences with the health system. Trust and confidence in the health system motivate people to accept the public health interventions and cooperate with them. Building trust and confidence therefore becomes an ethical imperative. This article analyses the COVID-19 pandemic in the south Indian state of Tamil Nadu and the state’s response to this pandemic. Further, it applies the Trust-Confidence-Cooperation framework of risk management to analyse the influence of public trust and confidence on the Tamil Nadu health system in the context of the preventive strategies adopted by the state. Finally, the article proposes a six-pronged strategy to build trust and confidence in health system functions to improve cooperation to pandemic containment measures. (shrink)

COVID-19 has turned many ethical principles and presuppositions upside down. More precisely, the principle of respect for autonomy has been shown to be ill suited to face the ethical challenges posed by the current health crisis. Individual wishes and choices have been subordinated to public interests. Patients have received trial therapies under extraordinary procedures of informed consent. The principle of respect for autonomy, at least in its mainstream interpretation, has been particularly questioned during this pandemic. Further reflection on the nature (...) and value of autonomy is urgently needed. Relational autonomy has been proposed as an alternative account of autonomy that can more adequately respond to contemporary ethical issues in general and to a pandemic such as the one we are currently facing in particular. As relational autonomy is an emerging notion in current bioethics, it requires further consideration and development to be properly operationalized. This paper aims to show how six different philosophical branches––namely, philosophy of nature, philosophical anthropology, existential phenomenology, discourse ethics, hermeneutics, and cultural anthropology––have incorporated the category of relation throughout the twentieth century. We first delve into primary philosophical sources and then apply their insights to the specific field of medical ethics. Learning from the historical developments of other philosophical fields may provide illumination that will enable bioethics to experience a successful “relational turn”, which has been partially initiated in contemporary bioethics but not yet achieved. (shrink)

There are instances where the provider of an intervention, such as surgery, has failed to obtain necessary informed consent from the recipient of the intervention. Perhaps the surgeon has failed to warn the patient that she may go into a coma, or even be killed, from the surgery. Sometimes, as a result of this intervention, the recipient cannot give informed consent to researchers for the release of their personal data precisely because of the intervention. If they are in a coma, (...) they cannot be reached. Sometimes, this personal data itself can prove that the provider of the intervention failed to obtain informed consent for the intervention. For example, a personal file may include a consent form that does not include warnings about the risk of falling into a coma from the surgery. Paradoxically, those who cannot give informed consent for the disclosure of their personal data on an intervention may have been especially ill-informed about the repercussions of the intervention. In such instances, should researchers ever use the data and disclose the data in their research? In an attempt to demonstrate when this dilemma may be relevant, and how it may be solved, I will present a real-world case of this dilemma in my own empirical research on refugees who agreed to repatriate to their countries of origin from Israel. I will consider what theories on consent, if any, can help us resolve this dilemma. (shrink)

Volume 19, Issue 6, June 2019, Page 62-64.

With the hope of somehow contributing to the ongoing discussion on the topic, this paper is loosely based on the debate that emerged from Rob Sparrow's article “Should human beings have sex? Sexual dimorphism and human enhancement”. Building on some of his arguments, my claim is that we should not refer to gender when discussing not-yet-born agents. More broadly still, my intention is to provide a further analysis of the intersection of the concepts of gender and autonomy. I will begin (...) by briefly highlighting Sparrow's article and critiques, with special emphasis on the poststructuralist attack. In doing so, I will consider the differences between structuralism and poststructuralism in relation to this debate. Subsequently, I will draw a parallel between Judith Butler's notion of the performativity of gender, sex and Ronald Dworkin's distinction between zoe and bios. The next move will then be to re-divert attention to the crucial role that health plays in the discussion, suggesting that one of the substantial differences between human enhancers and non-enhancers is the ranking that health has in their corresponding scale of values. Setting the bar for how an organism functions “normally” will be the last step necessary to create the basis for my main claim: building on Butler's description of the singular agent in relation to others, I will suggest Jürgen Habermas and Onora O'Neill as credible and valuable expansions of a position willing to reconcile individual and relational autonomy, supporting this final claim with the words of Immanuel Kant. If we aim to use genetic engineering and preimplantation genetic diagnosis to prevent unhealthy children from being born – as I shall state we should – we can use this notion of normality in a way that will be accepted also by those who are historically critical of such a way of conceptualising a human being, only if we understand the parallel need for society to shift to a more inclusive and shared definition of autonomy. (shrink)

This article traces the way autonomy has become a recognised value in health care in France. In a country that based its social fundamentals on the very idea of solidarity for many years, autonomy has long been considered a foreign ‘Anglo-American principle’. Taking the example of the end-of-life debate, the article shows, however, how the use of the French term ‘accompagnement’ allowed autonomy to be redefined and to be associated with the concept of solidarity. Exploring the arguments used over the (...) past 25 years in professional guidelines, parliamentary reports, ethics committee reports, and legal texts, the authors describe the shift that took place in public and legal discourses on end-of-life care. The analysis demonstrates how the scope of autonomy has been limited by other social values, such as the protection of the dying person, in order to become an accepted social value in its own right. The example of the French end-of-life debate shows that depending on how the concept of autonomy is adapted and applied in a specific context, it can be compatible with the idea of solidarity. Such compatibility has been challenged previously in the international bioethics debate. By demonstrating the possibility of combining autonomy and solidarity, this article makes an important contribution to the international bioethics debate and to the dialogue between countries that are often perceived as significantly different. (shrink)

Data-intensive science comes with increased risks concerning quality and reliability of data, and while trust in science has traditionally been framed as a matter of scientists being expected to adhere to certain technical and moral norms for behaviour, emerging discourses of open science present openness and transparency as substitutes for established trust mechanisms. By ensuring access to all available information, quality becomes a matter of informed judgement by the users, and trust no longer seems necessary. This strategy does not, however, (...) take into consideration the networks of professionals already enabling data-intensive science by providing high-quality data. In the life sciences, biological data- and knowledge bases managed by expert biocurators have become crucial for data-intensive research. In this paper, I will use the case of biocurators to argue that openness and transparency will not diminish the need for trust in data-intensive science. On the contrary, data-intensive science requires a reconfiguration of existing trust mechanisms in order to include those who take care of and manage scientific data after its production. (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)

The United States, like other countries facing rising health care costs, is pursuing a commitment to interoperable electronic health records. Electronic records, it is thought, have the potential to reduce the risks of error, improve care coordination, monitor care quality, enable patients to participate more fully in care management, and provide the data needed for research and surveillance. Interoperable electronic health records on a national scale — the ideal of a national health information network — seem likely to magnify these (...) advantages. Thus, the recent economic stimulus package contains considerable funding for the development of “health information technology architecture that will support the nationwide electronic exchange and use of health information in a secure, private, and accurate manner.”. (shrink)

Nocebo effects occur when an adverse effect on the patient arises from the patient's own negative expectations. In accordance with informed consent, providers often disclose information that results in unintended adverse outcomes for the patient. While this may adhere to the principle of autonomy, it violates the doctrine of “primum non nocere,” given that side-effect disclosure may cause those side effects. In this article we build off previous work, particularly by Wells and Kaptchuk and by Cohen :3–11.[Taylor & Francis Online], (...) [Web of Science ®] [Google Scholar]), to suggest ethical guidelines that permit nondisclosure in the case when a nocebo effect is likely to occur on of the basis of nonmaleficence. We accept that that autonomy vis-à-vis informed consent must be forestalled, but salvage much of its role by elaborating a practical clinical approach to postencounter follow-up. In doing so, we reconcile a clinically practicable process of determining conditions of disclosure with long-standing ethical commitments to patients. (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)

The philosophy of trust is a relatively small subfield. Nonetheless, it contains within it many important insights. Our contention in this paper is that careful study of this subfield can b...

In this paper I explore the politics of trust in the clinical testing of pharmaceuticals in the US. Specifically, I analyze trust in terms of its institutional manifestations in the pharmaceutical clinical trials industry. In the process of testing new drugs, pharmaceutical companies must (1) protect their proprietary information from the clinicians who conduct their studies, and (2) find a way to ensure human subjects’ compliance to study protocols. Concern with these two critical issues leads drug companies to approach clinicians (...) and research subjects with an attitude of mistrust and the desire to exert control over their activities. This orientation results in an institutionalization of mistrust that structures the relationships and activities required for the clinical development of new pharmaceutical products. (shrink)

Increasingly, bioethicists defend informed consent as a safeguard for trust in caretakers and medical institutions. This paper discusses an ‘ideal type’ of that move. What I call the trust-promotion argument for informed consent states:1. Social trust, especially trust in caretakers and medical institutions, is necessary so that, for example, people seek medical advice, comply with it, and participate in medical research.2. Therefore, it is usually wrong to jeopardise that trust.3. Coercion, deception, manipulation and other violations of standard informed consent requirements (...) seriously jeopardise that trust.4. Thus, standard informed consent requirements are justified.This article describes the initial promise of this argument, then identifies challenges to it. As I show, the value of trust fails to account for some commonsense intuitions about informed consent. We should revise the argument, commonsense morality, or both. (shrink)

We begin with our reasons for seeking to bring Kant to bear on contemporary information and computing ethics (ICE). We highlight what each contributor to this special issue draws from Kant and then applies to contemporary matters in ICE. We conclude with a summary of what these chapters individually and collectively tell us about Kant’s continuing relevance to these contemporary matters – specifically, with regard to the issues of building trust online and regulating the Internet; how far discourse contributing to (...) deliberative democracy online may include storytelling and appeals to the emotions; and whether or not search engine algorithms should be made public. We further highlight how certain chapters – especially as they incorporate more recent philosophical traditions such as phenomenology and cognitive psychology – develop a Kantian approach (or at least one that is both inspired by while simultaneously transforming Kant) to ethical issues in ICE, including the ethical implications of the on-going blurring of the border between the real and the virtual; designing software in light of distributed ethical responsibility; and trust-building in e-Science collaborations. (shrink)

The global increase in patients with chronic conditions has led to increased interest in ethical issues regarding such conditions. A basic biomedical principle—respect for autonomy—is being reexamined more critically in its clinical implications. New accounts of this basic principle are being proposed. While new accounts of respect for autonomy do underpin the design of many public programs and policies worldwide, addressing both chronic disease management and health promotion, the risk of applying such new accounts to clinical setting remain understudied. However, (...) the application of new accounts of respect for autonomy to clinical settings could support disrespectful attitudes toward or undue interference with patients with chronic conditions. Reconsidering autonomy and respect using Kantian accounts, this paper proposes respect for persons as an alternative basic bioethical principle to respect for autonomy. Unlike the principle of respect for persons in the Belmont Report, our principle involves respecting any patient’s decisions, behaviors, emotions, or life-style regardless of his or her “autonomous” capabilities. Thus, attitudes toward patients should be no different irrespective of the assessment of their decisional or executive capabilities. (shrink)

Health services internationally struggle to ensure health care is “person-centered” (or similar). In part, this is because there are many interpretations of “person-centered care” (and near synonyms), some of which seem unrealistic for some patients or situations and obscure the intrinsic value of patients’ experiences of health care delivery. The general concern behind calls for person-centered care is an ethical one: Patients should be “treated as persons.” We made novel use of insights from the capabilities approach to characterize person-centered care (...) as care that recognizes and cultivates the capabilities associated with the concept of persons. This characterization unifies key features from previous characterisations and can render person-centered care applicable to diverse patients and situations. By tying person-centered care to intrinsically valuable capability outcomes, it incorporates a requirement for responsiveness to individuals and explains why person-centered care is required independently of any contribution it may make to health gain. (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)

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)

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)

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)

Biobanks are increasingly being linked together into global networks in order to maximise their capacity to identify causes of and treatments for disease. While there is great optimism about the potential of these biobank networks to contribute to personalised and data-driven medicine, there are also ethical concerns about, among other things, risks to personal privacy and exploitation of vulnerable populations. Concepts drawn from theories of globalisation can assist with the characterisation of the ethical implications of biobank networking across borders, which (...) can, in turn, inform more ethically sophisticated responses. Using the China Kadoorie Biobank as a case study, we show how distinguishing between the subnational, transnational, supranational and extranational spheres of operation and influence can help researchers, institutions and regulators to understand and manage the ethical issues raised by the globalisation of biobanking. (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)

Codes of ethics currently offer no guidance to scientists acting in capacity of expert. Yet communicating their expertise is one of the most important activities of scientists. Here I argue that expert communication has a specifically ethical dimension, and that experts must face a fundamental trade-off between "actionability" and "transparency" when communicating. Some recommendations for expert communication are suggested.

The general expectation that patients should be willing to trust nurses is rarely explored or challenged despite claims of diminishing public trust in social and professional institutions. Everyday meanings of trust take account of circumstance and suggest that our understanding of what it means to trust is contextually bound. However, in the context of health care, to trust implies a particular understanding which becomes apparent when abuses of this trust are reported and acknowledged as scandals. The predominant assumption in the (...) literature that trust is something that occurs between equally competent adults cannot explain trust in nursing precisely because of the unequal power relationships between patients on the one hand and healthcare professionals on the other. Moreover, the tendency to conflate terms such as trust, reliance, confidence and so on suggests that confusion permeates discussions of trust in nursing. In this paper, I argue in support of Annette Baier’s requirement of good will (or lack of ill will) as the essential feature of trust, and outline how this account (i) enables us to make the necessary distinctions between trust on the one hand and ‘trust pretenders’ on the other; and (ii) lays the foundations for understanding trust in relationships, such as those between patients and nurses, where power differentials exist. (shrink)

There are ethical guidelines that form the foundation of the traditional doctor–patient relationship in medicine. Health care providers are under special obligations to their patients. These include obligations to disclose information, to propose alternative treatments that allow patients to make decisions based on their own values, and to have special concern for patients’ best interests. Furthermore, patients know that these obligations exist and so come to their physicians with a significant level of trust. In this sense, therapeutic medicine significantly differs (...) from straightforward business practices such as the buying and selling of houses, cars, cell phones, etc. However, we argue that this relationship differs when medicine is used for enhancement rather than therapy. When patients seek enhancements they are not as vulnerable as when they are ill. And in an enhancement setting, physicians have little role outside of medical risks to discuss motivation and alternatives. Therefore, we conclude that a more reasonable alternative may be for doctors and patients to use ethical norms associated more with straightforward business practices, specifically sales. We believe that full disclosure of this different set of norms will benefit both physicians and patients. (shrink)

Autonomy in bioethics is coming under sustained criticism from a variety of perspectives. The criticisms, which target personal or individual autonomy, are largely justified. Moral conceptions of autonomy, such as Kant’s, on the other hand, cannot simply be applied in bioethical situations without moralizing care provision and recipience. The discussion concludes with a proposal for re-thinking autonomy by focusing on what different agents count as reasons for choosing one rather than another course of action, thus recognising their involvement in the (...) decision process. (shrink)

The involvement of children in non-beneficial clinical research is extremely important for improving pediatric care, but its ethical acceptability is still disputed. Therefore, various pro-research justifications have been proposed throughout the years. The present essay aims at contributing to the on-going discussion surrounding children’s participation in non-beneficial clinical research. Building on Wendler’s ‘contribution to a valuable project’ justification, but going beyond a risk/benefit analysis, it articulates a pro-research argument which appeals to a phenomenological view on the body and vulnerability. It (...) is claimed that children’s bodies are not mere physical objects, but body-subjects due to which children, as persons, can contribute to research that may hold no direct clinical benefit to them even before they can give informed consent. (shrink)

Empirical evidence suggests that some health professionals believe consent procedures for the emerging technology of non-invasive prenatal diagnosis (NIPD) should become less rigorous than those currently used for invasive prenatal testing. In this paper, we consider the importance of informed consent and informed choice procedures for protecting autonomy in those prenatal tests which will give rise to a definitive result. We consider whether there is anything special about NIPD that could sanction a change to consent procedures for prenatal diagnosis or (...) otherwise render informed decision-making less important. We accept the claim that the absence of risk of miscarriage to some extent lessens the gravity of the decision to test compared with invasive methods of testing. However, we also claim that the definitive nature of the information received, and the fact that the information can lead to decisions of great significance, makes NIPD an important choice. This choice should only be made by means of a rigorous and appropriately supported decision-making process (assuming that this is what the pregnant woman wants). We conclude that, on balance, consent procedures for NIPD should mirror those for invasive testing, albeit without the need to emphasise procedure-related risk. (shrink)

Although bioethics is a lively and expanding interdisciplinary field, there is not enough research about the patient‐doctor relationship, a central issue in philosophy of medicine. This article surveys the state of the field, paying attention to recent work by Alfred Tauber, and supplementing it with insights from Hans Jonas's philosophy of technology in order to propose a principle of responsible autonomy for health care. Based on a comparative look across different sub‐fields in bioethics, the resulting model claims that physician responsibility (...) is essential to professional integrity, providing an alternative to other active trends emphasizing patient autonomy, such as Robert Veatch's contractual model. (shrink)

Growing attention is being paid to the importance of trust, and its corollaries such as mistrust and distrust, in health service and the central place they have in assessments of quality of care. Although initially focussing on doctor-patient relationships, more recent literature has broadened its remit to include trust held in more abstract entities, such as organisations and institutions. There has consequently been growing interest to develop rigorous and universal measures of trust.

Libertarian paternalism's notion of “nudging” refers to steering individual decision making so as to make choosers better off without breaching their free choice. If successful, this may offer an ideal synthesis between the duty to respect patient autonomy and that of beneficence, which at times favors paternalistic influence. A growing body of literature attempts to assess the merits of nudging in health care. However, this literature deals almost exclusively with health policy, while the question of the potential benefit of nudging (...) for the practice of informed consent has escaped systematic analysis. This article focuses on this question. While it concedes that nudging could amount to improper exploitation of cognitive weaknesses, it defends the practice of nudging in a wide range of other conditions. The conclusion is that, when ethically legitimate, nudging offers an important new paradigm for informed consent, with a special potential to overcome the classical dilemma between paternalistic beneficence and respect for autonomy. (shrink)

Autonomy is a concept that holds much appeal to social and legal philosophers. Within a medical context, it is often argued that it should be afforded supremacy over other concepts and interests. When respect for autonomy merely requires non-intervention, an adult’s right to refuse treatment is held at law to be absolute. This apparently simple statement of principle does not hold true in practice. This is in part because an individual must be found to be competent to make a valid (...) refusal of consent to medical treatment, and capacity to decide is not an absolute concept. But further to this, I argue that there are three relevant understandings of autonomy within our society, and each can demand in differing cases that different courses of action be followed. Judges, perhaps inadvertently, have been able to take advantage of the equivocal nature of the concept to come tacitly to decisions that reflect their own moral judgments of patients or decisions made in particular cases. The result is the inconsistent application of principle. I ask whether this is an unforeseen outcome or if it reflects a wilful disregard for equal treatment in favour of silent moral judgments in legal cases. Whatever the cause, I suggest that once this practice is seen to occur, acceptable justification of it in some cases is difficult to find. (shrink)

The author examines whether Kantian ethics would condone the use of pharmaceutical drugs to enhance one’s moods and cognitive abilities. If key assumptions concerning safety and efficacy, non-addictiveness, non-coercion, and accessibility are not met, Kantian ethics would consider mood and cognitive enhancement to be impermissible. But what if these assumptions are granted? The arguments for the permissibility of neuroenhancement are stronger than those against it. After giving a general account of Kantian ethical principles, the author argues that, when these assumptions (...) are granted, Kantian ethics no longer justifies the prohibition of neuroenhancement, and responds to two objections. (shrink)

We tend to think that the difficulties in bioethics spring from the novel and alarming issues that arise due to discoveries in the new biosciences and biotechnologies. But many of the crucial difficulties in bioethics arise from the assumptions we make about ethics. This paper offers a brief overview of bioethics, and relates ethical ‘principlism’ to ‘ethical fundamentalism’. It then reviews some alternative approaches that have emerged during the second phase of bioethics, and argues for a neo-Aristotelian approach. Misconceptions about (...) ethical principles and ethical reasoning not only distort our views of the business of bioethics, but they also prevent us from facing up to the formidable problems posed by ethical pluralism in so-called liberal societies. (shrink)

In 2007, the Ethics and Governance Council of the UK Biobank commissioned a Report on ‘Concepts of Public Good and Pubic Interest in Access Policies’. This study considered the Biobank’s role as a ‘public good’ in respect to supporting and promoting health throughout society. However, the conditions under which access by third parties to UK Biobank are justified in the public interest have not been well considered. In this article, I propose to analyse the conditions that should allow such access. (...) My argument develops UK Biobank’s function as a ‘public good’ and in terms of its responsibilities as a public health institution; both to protect the rights of the participants and in having a role in reinforcing public goals. Although these two tasks may conflict, it is possible that resolute opposition to some third-party access demands—if properly justified in terms of a public interest—will be damaging to, rather than protective of, participants’ rights. To illustrate my argument, I consider the appropriate response to an extraordinary public emergency , such as a serious criminal investigation or disaster response, in terms of an ethical access policy. (shrink)

BackgroundBeta thalassemia major is a severe inherited form of hemolytic anemia that results from ineffective erythropoiesis. Allogenic hematopoietic stem cell transplantation (HSCT) remains the only potentially curative therapy. Unfortunately, the subgroup of adult thalassemia patients with hepatomegaly, portal fibrosis and a history of irregular iron chelation have an elevated risk for transplantation-related mortality that is currently estimated to be about 29 percent.DiscussionThalassemia patients may be faced with a difficult choice: they can either continue conventional transfusion and iron chelation therapy or (...) accept the high mortality risk of HSCT in the hope of obtaining complete recovery.Throughout the decision making process, every effort should be made to sustain and enhance autonomous choice. The concept of conscious consent becomes particularly important. The patient must be made fully aware of the favourable and adverse outcomes of HSCT. Although it is the physician's duty to illustrate the possibility of completely restoring health, considerable emphasis should be put on the adverse effects of the procedure. The physician also needs to decide whether the patient is eligible for HSCT according to the "rule of descending order". The patient must be given full details on self-care and fundamental lifestyle changes and be fully aware that he/she will be partly responsible for the outcome.SummaryOnly if all the aforesaid conditions are satisfied can it be considered reasonable to propose unrelated HSCT as a potential cure for high risk thalassemia patients. (shrink)

In medical practice, the doctrine of informed consent is generally understood to have priority over the medical practitioner’s duty of care to her patient. A common consequentialist argument for the prioritisation of informed consent above the duty of care involves the claim that respect for a patient’s free choice is the best way of protecting that patient’s best interests; since the patient has a special expertise over her values and preferences regarding non-medical goods she is ideally placed to make a (...) decision that will protect her interests. In this paper I argue against two consequentialist justifications for a blanket prioritisation of informed consent over the duty of care by considering cases in which patients have imperfect access to their overall best interests. Furthermore, I argue that there are cases where the mere presentation of choice under the doctrine of informed consent is detrimental to patient best interests. I end the paper by considering more nuanced approaches to resolving the conflict between informed consent and the duty of care and consider the option of permitting patients to waive informed consent. (shrink)