The rapid advancement of digital health innovation, including Artificial Intelligence (AI), is transforming healthcare. The growing role the European Union (EU) plays in regulating the use of AI in healthcare renders national laws insufficient to safeguard patients from unique AIrelated risks. This underscores the urgent need for the recognition of a canon of patients' rights in the scope of EU law. This paper proposes the blueprint for an EU Charter for Digital Patients' Rights, consolidating and adapting existing (...) class='Hi'>rights for patients to address these specific challenges. Traditional patients' rights such as the right to privacy and the right to informed consent are interpreted in light of the challenges posed by AI. It also proposes novel rights for patients, such as the right not to be subject to automated medical decision-making and the right to meaningful human contact. This paper highlights the EU's central role in protecting patients' rights and outlines strategies for effective implementation. This comprehensive approach aims to address the current shortcomings and enhance the legal framework governing digital health in Europe. (shrink)

Physicians, so it will be argued have by virtue of their profession a weightier obligation than patients to disclose their HIV infection, and also have a duty to refrain from performing exposure-prone invasive procedures. This argument supports both the AMA and CDC guidelines on HIV infected health care workers (HCWS), while undermining the recommendations against disclosure suggested by the National Commission on AIDS (NCA). The argument is divided into three parts. First, a distinction is made between entrenched and fuzzy roles. (...) Second, the physician-patient relationship is described as essentially fiduciary rather than businesslike or merely contractual. Third, the conflict between patients' and physicians' right to know is portrayed as one between patients' and physicians' right to life. Last, given the the probability of infection from seropositive patients to seronegative physicians, and, conversely, is roughly the same, it is recommended as a fair social policy that whenever an invasive procedure occurs, both physicians and patients have a duty to disclose any serious infection that may jeopardize their lives. (shrink)

Subjective rights enjoy limited import in Kelsenian theory for whereas the concept of duty underlies every legal norm, that of rights is merely possible and only emerges when the imposition of the sanction attached to the breach of the duty is made dependent upon a subject's will to bring legal action. The presence of secondary norms establishing certain duties of medical professionals on informed consent displays the existence of correlative reflex rights of patients. Yet, together with secondary (...) norms, Western legal systems typically institute norms of competence enabling patients to take legal action when those duties correlative to their reflex right to informed consent have been infringed. Thus, informed consent constitutes a set of subjective legal positions of patients and medical professionals. Despite its excessive formalism and questionable neutrality, the Kelsenian approach permits to define and clearly distinguish patients' genuine rights from mere aspirations devoid of legal basis. (shrink)

Many participants in debates about the morality of assisted dying maintain that individuals may only turn to assisted dying as a ‘last resort’, i.e., that a patient ought to be eligible for assisted dying only after she has exhausted certain treatment or care options. Here I argue that this last resort condition is unjustified, that it is in fact wrong to require patients to exhaust a prescribed slate of treatment or care options before being eligible for assisted dying. The (...) last resort condition effectively pits one right of patients, their right to refuse medical treatment or interventions, against another patient right acknowledged by advocates of assisted dying, the right to die. Drawing on an analogy with the legal notion of an unconstitutional condition, I argue that the last resort condition unjustly demands that an arguably more fundamental right—the right to refuse medical treatment or intervention—be foregone in order to acquire a less fundamental right—the right to die. I then address three rationales for the last resort condition and find that they subject individuals to arbitrarily stringent standards for exercising the right to die, standards to which those who seek to end their lives by voluntarily ending life-sustaining treatments are not subject. Subjecting those who seek assisted dying to the last resort condition therefore wrongfully infringes on their right to refuse medical treatment or interventions. (shrink)

There are two main questions that any account of corporate lawyers’ moral obligations needs to answer: (1) Do corporate lawyers have moral obligations to third parties? and (2) In cases of conflict between obligations to the corporation and obligations to third parties, which should prevail? This Article offers answers to these questions in the context of lawyers working in medical corporations. I argue that lawyers do have moral obligations to third parties, and that in cases where patients’ rights are (...) being violated by a medical company, patients’ rights should prevail. Consequently, attorney–client confidentiality rules should be relaxed to allow for attorney disclosures in egregious cases of potential harm to third parties. (shrink)

There is significant controversy over whether patients have a ‘right not to know’ information relevant to their health. Some arguments for limiting such a right appeal to potential burdens on others that a patient’s avoidable ignorance might generate. This paper develops this argument by extending it to cases where refusal of relevant information may generate greater demands on a publicly funded healthcare system. In such cases, patients may have an ‘obligation to know’. However, we cannot infer from the fact (...) that a patient has an obligation to know that she does not also have a right not to know. The right not to know is held against medical professionals at a formal institutional level. We have reason to protect patients’ control over the information that they receive, even if in individual instances patients exercise this control in ways that violate obligations. (shrink)

In this short paper I will discuss the ambiguous and, even, controversial term ‘right to die’ in the context of the euthanasia debate and, in particular, in the case of passive euthanasia. First I will present the major objections towards the moral legitimacy of a right to die, most of which I also endorse myself; then I will investigate whether the right to die could acquire adequate moral justification in the case of passive euthanasia. In the light of the Kantian (...) tradition I will argue that since rights are understood as based upon duties, the right to die should also presuppose a corresponding duty, which to me could be either an imperfect, solidarity-related duty, or an autonomy-related one, at least as far as the unwanted prolongation of life is concerned. I will conclude with the view that the right to die could actually be considered a legitimate one in the case of passive euthanasia, when the application of life-supporting techniques is against the wishes and the best interests of the patient. (shrink)

New technologies such as smart sensors improve rehabilitation processes and thereby increase older adults’ capabilities to participate in social life, leading to direct physical and mental health benefits. Wearable smart sensors for home use have the additional advantage of monitoring day-to-day activities and thereby identifying rehabilitation progress and needs. However, identifying and selecting rehabilitation priorities is ethically challenging because physicians, therapists, and caregivers may impose their own personal values leading to paternalism. Therefore, we develop a discussion template consisting of a (...) series of adaptable questions for the patient–physician encounter based on the capability approach. The goal is to improve geriatric rehabilitation and thereby increase participation in social life and well-being. To achieve this goal, we first analyzed what is considered important for participation on basis of the capability approach, human rights, and ethics of care. Second, we conducted an ethical analysis of each of the four identified dimensions of participation: political, economic, socio-cultural, and care. To improve compliance with rehabilitation measures, health professionals must align rehabilitation measures in an open dialogue with the patient’s aspiration for participation in each dimension. A discussion template based on the capability approach allows for a proactive approach in patient information and stimulates a critical assessment of treatment alternatives while reducing the risk of imposing personal values. (shrink)

In this paper, I would like to argue that brain-dead small children have a natural right not to be invaded by other people even if their organs can save the lives of other suffering patients. My basic idea is that growing human beings have the right to grow in the form of wholeness, and dying human beings also have the right to die in the form of wholeness; in other words, they have the right to be protected from outside invasion, (...) unless they have declared their wish to abandon that right beforehand. I call this the principle of wholeness. Natural rights, which were discussed by Hobbes and Locke in the 17th century, have to be extended to include the right to grow and die in the form of wholeness in the age of scientific civilization, where peripheral human lives are being threatened by aggressive biomedicine and other advanced technologies. (shrink)

In this chapter, our focus is the role played by notions of rationality in the diagnosis of mental disorders, and in the practice of overriding patient autonomy in psychiatry. We describe and evaluate different hypotheses concerning the relationship between rationality and diagnosis, raising questions about what features underpin psychiatric categories. These questions reinforce widely held concerns about the use of diagnosis as a justification for overriding autonomy, which have motivated a shift to mental incapacity as an alternative justification. However, (...) this approach too has recently been criticized from a mental disability rights perspective. Our analysis of the relationship between mental capacity and rationality is used to illuminate these concerns, and to investigate further the relationship between rationality and psychiatric diagnosis. (shrink)

Torture is unethical and usually counterproductive. It is prohibited by international and national laws. Yet it persists: according to Amnesty International, torture is widespread in more than a third of countries. Physicians and other medical professionals are frequently asked to assist with torture. -/- Medical complicity in torture, like other forms of involvement, is prohibited both by international law and by codes of professional ethics. However, when the victims of torture are also patients in need of treatment, doctors can find (...) themselves torn. To accede to the requests of the torturers may entail assisting or condoning terrible acts. But to refuse care to someone in medical need may seem like abandoning a patient and thereby fail to exhibit the beneficence expected of physicians. -/- In this paper, we argue that this dilemma is real and that sometimes the right thing for a doctor to do, overall, is to be complicit in torture. Though complicity in a wrongful act is itself prima facie wrongful, this judgment may be outweighed by other factors. We propose three criteria for analyzing how those factors apply to particular cases of medical complicity in torture. (shrink)

Care is more than dispensing pills or cleaning beds. It is about responding to the entire patient. What is called “bedside manner” in medical personnel is a quality of treating the patient not as a mechanism but as a being—much like the caregiver—with desires, ideas, dreams, aspirations, and the gamut of mental and emotional character. As automata, answering an increasing functional need in care, are designed to enact care, the pressure is on their becoming more humanlike to carry (...) out the function more effectively. The question becomes not merely whether the care automaton can effect good bedside manner but whether the patient’s response is not feeling deceived by the humanlikeness. It seems the device must be designed either to effect explicit mere human-“likeness,” thus likely undermining its bedside-manner potential, or to fool the patient completely. Neither option is attractive. This article examines the social problems of designing maximally humanlike care automata and how problems may start to erode the human rights of users/patients. The article then investigates the alternatives for dealing with this problem, whether by industrial and professional self-regulation or public-policy initiatives. It then frames the problem in the broader historical perspective in terms of previous bans, moratoria, and other means of control of hazardous and potentially rights-violating techniques and materials. (shrink)

Shared Decision Making (‘SDM’) is one of the most significant developments in Western health care practices in recent years. Whereas traditional models of care operate on the basis of the physician as the primary medical decision maker, SDM requires patients to be supported to consider options in order to achieve informed preferences by mutually sharing the best available evidence. According to its proponents, SDM is the right way to interpret the clinician-patient relationship because it fulfils the ethical imperative of (...) respecting patient autonomy. However, there is no consensus about how decisions in SDM contexts relate to the principle of respect for autonomy. In response, I demonstrate that in order to make decisions about what treatment they will or will not receive, patients will be required to meet different conditions depending on the approach proponents of SDM take to understanding personal autonomy. Due to the fact that different conceptions of autonomy yield different obligations, I argue that if physicians and patients satisfied all the conditions described in standard accounts of SDM, then SDM would undermine patient autonomy. (shrink)

Patients are generally assumed to have the right to choices about treatment, including the right to refuse treatment, which is constrained by considerations of cost‐effectiveness. Independently, many people support the idea that patients who are responsible for their ill health should incur penalties that non‐responsible patients do not face. Surprisingly, these two areas have not received much joint attention. This paper considers whether restricting the scope of responsibility to pre‐treatment decisions can be justified, or whether a demand to hold people (...) responsible for 'usual suspect' choices such as smoking or failure to exercise commits us to also holding people responsible for their treatment choices. I argue that there is no good reason to support this restriction: those who advocate responsibility for (some) pre‐treatment choices should also advocate responsibility for (some) treatment choices. However, I also note that, as with pre‐treatment choices, patients may sometimes have reason to choose in ways that do not optimize their health. As such, I also consider a process, based on the idea of public reasons, for deciding which treatment choices patients cannot legitimately be held responsible for, along with a method for considering proposed changes to this category. (shrink)

According to many of its proponents, shared decision making ("SDM") is the right way to interpret the clinician-patient relationship because it respects patient autonomy in decision-making contexts. In particular, medical ethicists have claimed that SDM respects a patient's relational autonomy understood as a capacity that depends upon, and can only be sustained by, interpersonal relationships as well as broader health care and social conditions. This paper challenges that claim. By considering two primary approaches to relational autonomy, this (...) paper argues that standard accounts of SDM actually undermine patient autonomy. It also provides an overview of the obligations generated by the principle of respect for relational autonomy that have not been captured in standard accounts of SDM and which are necessary to ensure consistency between clinical practice and respect for patient autonomy. (shrink)

It is widely accepted among medical ethicists that competence is a necessary condition for informed consent. In this view, if a patient is incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient. We call this the competence model. According to a recent report of the United Nations (UN) High Commissioner for Human Rights, article 12 of the UN Convention on (...) the Rights of Persons with Disabilities (CRPD) presents a wholesale rejection of the competence model. The High Commissioner here adopts the interpretation of article 12 proposed by the Committee on the Rights of Persons with Disabilities. On this interpretation, CRPD article 12 renders it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired decision-making capacity and demands the replacement of all regimes of substitute decision-making by supported decision-making. In this paper, we explicate six adverse consequences of CRPD article 12 for persons with mental disabilities and propose an alternative way forward. The proposed model combines the strengths of the competence model and supported decision-making. (shrink)

“Bodily autonomy” has received significant attention in bioethics, medical ethics, and medical law in terms of the general inviolability of a patient’s bodily sovereignty and the rights of patients to make choices (e.g., reproductive choices) that concern their own body. However, the role of the body in terms of how it can or does contribute to a patient’s capacity for, or exercises of their autonomy in clinical decision-making situations has not been explicitly addressed. The approach to autonomy (...) in this paper is aligned with traditional theories that conceive autonomy in terms of an individual’s capacities for, and exercises of rational reflection. However, at the same time, this paper extends these accounts by arguing that autonomy is, in part, embodied. Specifically, by drawing on phenomenological conceptions of the experience of autonomy, we argue that, in principle, the body is a necessary component of the capacity for autonomy. Secondly, through the presentation of two different cases, we highlight ways in which a patient’s body can contribute to the autonomy of treatment choices. Ultimately, we hope to encourage others to explore additional conditions under which a concept of embodied autonomy should be employed in medical decision making, how its underlying principles might be operationalised in clinical situations, and its consequences for approaches to patient autonomy in healthcare practice, policy, and law. (shrink)

The current debate on closed-loop brain devices (CBDs) focuses on their use in a medical context; possible criminal justice applications have not received scholarly attention. Unlike in medicine, in criminal justice, CBDs might be offered on behalf of the State and for the purpose of protecting security, rather than realising healthcare aims. It would be possible to deploy CBDs in the rehabilitation of convicted offenders, similarly to the much-debated possibility of employing other brain interventions in this context. Although such use (...) of CBDs could in principle be consensual, there are significant differences between the choice faced by a criminal offender offered a CBD in the context of criminal justice, and that faced by a patient offered a CBD in an ordinary healthcare context. Employment of CBDs in criminal justice thus raises ethical and legal intricacies not raised by healthcare applications. This paper examines some of these issues under three heads: autonomy, human rights, and accountability. (shrink)

As the aim of the responsible robotics initiative is to ensure that responsible practices are inculcated within each stage of design, development and use, this impetus is undergirded by the alignment of ethical and legal considerations towards socially beneficial ends. While every effort should be expended to ensure that issues of responsibility are addressed at each stage of technological progression, irresponsibility is inherent within the nature of robotics technologies from a theoretical perspective that threatens to thwart the endeavour. This is (...) because the concept of responsibility, despite being treated as such, is not monolithic: rather this seemingly unified concept consists of converging and confluent concepts that shape the idea of what we colloquially call responsibility. From a different perspective, robotics will be simultaneously responsible and irresponsible depending on the particular concept of responsibility that is foregrounded: an observation that cuts against the grain of the drive towards responsible robotics. This problem is further compounded by responsible design and development as contrasted to responsible use. From a different perspective, the difficulty in defining the concept of responsibility in robotics is because human responsibility is the main frame of reference. Robotic systems are increasingly expected to achieve the human-level performance, including the capacities associated with responsibility and other criteria which are necessary to act responsibly. This subsists within a larger phenomenon where the difference between humans and non-humans, be it animals or artificial systems, appears to be increasingly blurred, thereby disrupting orthodox understandings of responsibility. This paper seeks to supplement the responsible robotics impulse by proposing a complementary set of human rights directed specifically against the harms arising from robotic and artificial intelligence technologies. The relationship between responsibilities of the agent and the rights of the patient suggest that a rights regime is the other side of responsibility coin. The major distinction of this approach is to invert the power relationship: while human agents are perceived to control robotic patients, the prospect for this to become reversed is beginning. As robotic technologies become ever more sophisticated, and even genuinely complex, asserting human rights directly against robotic harms become increasingly important. Such an approach includes not only developing human rights that ‘protect’ humans but also ‘strengthen’ people against the challenges introduced by robotics and AI [This distinction parallels Berlin’s negative and positive concepts of liberty ], by emphasising the social and reflective character of the notion of humanness as well as the difference between the human and nonhuman. This will allow using the human frame of reference as constitutive of, rather than only subject to, the robotic and AI technologies, where it is human and not technology characteristics that shape the human rights framework in the first place. (shrink)

In this essay, by example of the physician-patient relationship and drawing on the work of D.W. Winnicott, I explore what may be possible together in relationships, and in the pursuit of health and flourishing, at understanding what we need, and getting ourselves and the other “right”—what we are afraid of and how we get each other wrong, and the distance or gap between “what has been” and “what might be.” In pursuit of these questions, I consider what both physicians (...) and patients might endeavor to do together to address this distance: to recognize and respond to each other, and to identify and address common needs and felt distances. And, how, along the way, we may be able to better identify and understand fundamental challenges to all relationships. Finally, I ask the reader to imagine a physician-patient encounter (and all relationships) as vulnerable possibilities. And I suggest a method for a way forward. While we may not always get what we want in a relationship, perhaps our earnest effort at knowing together will open a potential space for us to get what we need. This is where I imagine that the physician-patient relationship begins: where all relationships begin. (shrink)

Despite its prevalence today, the practice of purely performative resuscitation (PPR)—paradigmatically, the ‘slow code’—has attracted more critics in bioethics than defenders. The most common criticism of the slow code is that it’s fundamentally deceptive or harmful, while the most common justification offered is that it may benefit the patient’s loved ones, by symbolically honoring the patient or the care team’s relationship with the family. I argue that critics and defenders of the slow code each have a point. Advocates (...) of the slow code are right that not all PPR is wrongly deceptive or harmful to the patient or his family, and that the symbolic aspect of medicine is itself morally significant. But the critics are also correct: slow codes are prima facie wrong. I argue that pursuing a slow code amounts to treating the patient as a tool for others’ benefit—hence, treating him as an object—and that this instrumentalizing quality constitutes one core prima facie wrong of the practice. I also build a case for the idea that the slow code may not always be all-things-considered wrong, specifying certain limited conditions under which acts of PPR might ultimately be permissible. Thus, the symbolic dimension of medical treatment is indeed morally important, both in morally favorable and in morally problematic respects—namely, in its symbolic denial of the patient’s humanity. (shrink)

It is commonly accepted that clinicians are ethically obligated to disclose their use of medical machine learning systems to patients, and that failure to do so would amount to a moral fault for which clinicians ought to be held accountable. Call this ‘the disclosure thesis.’ Four main arguments have been, or could be, given to support the disclosure thesis in the ethics literature: the risk-based argument, the rights-based argument, the materiality argument and the autonomy argument. In this article, I (...) argue that each of these four arguments are unconvincing, and therefore, that the disclosure thesis ought to be rejected. I suggest that mandating disclosure may also even risk harming patients by providing stakeholders with a way to avoid accountability for harm that results from improper applications or uses of these systems. (shrink)

This paper argues that assessing personal responsibility in healthcare settings for the allocation of medical resources would be too privacy-invasive to be morally justifiable. In addition to being an inappropriate and moralizing intrusion into the private lives of patients, it would put patients’ sensitive data at risk, making data subjects vulnerable to a variety of privacy-related harms. Even though we allow privacy-invasive investigations to take place in legal trials, the justice and healthcare systems are not analogous. The duty of doctors (...) and healthcare professionals is to help patients as best they can—not to judge them. Patients should not be forced into giving up any more personal information than what is strictly necessary to receive an adequate treatment, and their medical data should only be used for appropriate purposes. Medical ethics codes should reflect these data rights. When a doctor asks personal questions that are irrelevant to diagnose or treat a patient, the appropriate response from the patient is: ‘none of your business’. (shrink)

Cotard syndrome is a clinical condition defined by the presence of nihilistic delusions. We report two patients with Cotard syndrome in whom anti-NMDAR encephalitis (ANMDARE) was confirmed. Both cases showed features of affective psychosis, developed catatonic syndrome, and worsened after the use of antipsychotics. 18F-FDG PET brain studies showed a bilateral hemispheric pattern of hypometabolism in posterior regions, mainly in the cingulate cortex and in the medial aspects of parietal and occipital lobes. A more severe hypometabolism was observed in the (...) right hemisphere of both patients. Both cases remitted with the use of specific immunotherapy for ANMDARE. (shrink)

The standard of care in the United States favors stabilizing any adult who arrives in an emergency department after a failed suicide attempt, even if he appears decisionally capacitated and refuses life-sustaining treatment. I challenge this ubiquitous practice. Emergency clinicians generally have a moral obligation to err on the side of stabilizing even suicide attempters who refuse such interventions. This obligation reflects the fact that it is typically infeasible to determine these patients’ level of decisional capacitation—among other relevant information—in this (...) unique setting. Nevertheless, I argue, stabilizing suicide attempters over their objection sometimes violates a basic yet insufficiently appreciated right of theirs—the right against bodily invasion. In such cases, it is at least prima facie wrong to stabilize a patient who wants to die even if they lack a contrary advance directive or medical order and suffer from no terminal physical illness. (shrink)

Over the course of the past several decades, Kant scholars have made significant headway in showing that emotions play a more significant role in Kant's ethics than has traditionally been assumed. Closer attention has been paid to the Metaphysics of Morals (MS) where Kant provides important insights about the value of moral sentiments and the role they should play in our lives. One particularly important discussion occurs in sections 34 and 35 of the Doctrine of Virtue where Kant claims we (...) have a duty to use sympathetic feelings "as a means of promoting active and rational benevolence" (MS 6:457). Kant labels this the "duty of humanity," and he suggests that nature has implanted sympathetic feelings in us "to do what the representation of duty alone might not accomplish" (ibid.). Commentators have rightly highlighted these remarks as prime evidence that feelings do play a positive role in Kant's ethics after all. (shrink)

Health data processing fields face ethical and legal problems regarding fundamental rights. As we know, patients can benefit in the Digital Era from having health or medical information available, and medical decisions can be more effective with a better understanding of clinical histories, medical and health data thanks to the development of Artificial Intelligence, Internet of Things and other Digital technologies. However, at the same time, we need to guarantee fundamental rights, including privacy ones. The complaint about ethical (...) and legal requirements – including constitutional ones – is particularly relevant in the processing of health data. This paper is focused on the problem of the consent required to the processing of health data and the exceptions established in the new European Union General Data Regulation, which cover the processing of this special data -within other aims- for scientific, historical and statistical research as legitimate purposes, which include biomedical research. The conclusion is that these open concepts are problematic both for the protection of privacy rights and for the legal security/certainty of research. On one hand there are several interpretation problems, regarding the processing of health data and the protection of information privacy. On the other hand, professionals must follow the Multilevel legal framework and to guarantee fundamental rights in the processing of health data, so there are also problems of interpretation for researchers. Therefore, we need a clearer legal framework for biomedical research. (shrink)

Innovative practice occurs when a clinician provides something new, untested, or nonstandard to a patient in the course of clinical care, rather than as part of a research study. Commentators have noted that patients engaged in innovative practice are at significant risk of suffering harm, exploitation, or autonomy violations. By creating a pathway for harmful or nonbeneficial interventions to spread within medical practice without being subjected to rigorous scientific evaluation, innovative practice poses similar risks to the wider community of (...) patients and society as a whole. Given these concerns, how should we control and oversee innovative practice, and in particular, how should we coordinate innovative practice and clinical research? In this article, I argue that an ethical approach to overseeing innovative practice must encourage the early transition to rigorous clinical research without delaying or deferring the development of beneficial innovations or violating the autonomy rights of clinicians and their patients. (shrink)

Stephen L. Pepper argues that lawyers and clients often act together in ways that their moral convictions would prevent them from acting individually. In an attempt to address this problem, I explore the nature of the attorney's responsibility to help her client reach autonomous decisions. To do this, I review the work of some prominent medical ethicists on a parallel to Pepper's problem in doctor-patient relationships.

What process ought to guide decision making for pediatric patients? The prevailing view is that decision making should be informed and guided by the best interest of the child. A widely discussed structural model proposed by Buchanan and Brock focuses on parents as surrogate decision makers and examines best interests as guiding and/or intervention principles. Working from two recent articles by Ross on “constrained parental autonomy” in pediatric decision making (which is grounded in the Buchanan and Brock model), I discuss (...) (supportively) features of Ross’s effort visa-vis the best interest standard. I argue that any pediatric decision-making model that brackets or formally limits an engagement with the child patient assumes too much. Further, any model that under appreciates the place of parents and their autonomy, and the dynamic parent-child relationship, misses an opportunity to broaden the clinical encounter by considering questions of justice for the child (Rawls) and within a family (Ross). In this context, I focus on the child’s emerging and ongoing emotional and intellectual development and autonomy—their capabilities and identifying primary goods. (shrink)

While there is a prolific debate surrounding the issue of conscientious objection of individuals towards performing certain clinical acts, this debate ignores the fact that there are other reasons why clinicians might wish to object providing specific services. This paper briefly discusses the idea that healthcare workers might object to providing specific services because they are against their professional judgement, they want to maintain a specific reputation, or they have pragmatic reasons. Reputation here is not simply understood as being in (...) good standing with a professional body. Rather, reputation is treated in the sense that a craftsman might wish to be known for providing a specific type, quality, and style of service. Professionalism is understood as acting according to the philosophical and scientific principles that are the basis of healthcare (such as acting for the benefit of the patient’s health and following well- evidenced treatment pathways). (shrink)

Patient autonomy has a critical role in making decisions in medical practice and it is accepted by international conventions on health care and various national medical codes. However, pertaining to terminally ill patients, this right becomes very problematic in regards to end of life decisions. Utilitarian ethicists motivated by materialistic worldview and individualism have made patient autonomy based arguments for the permissibility of active euthanasia. An appraisal of pro-euthanasia arguments that include the best interest, golden rule, and autonomy (...) is made in this paper. The best interest and golden rule arguments are based on subjective moral judgment thus failing the universalization test. The argument from autonomy is unconvincing because of the confounded autonomy of the terminally ill patients. (shrink)

Patients in Quebec can legally obtain medical assistance in dying (MAID) if they are able to give informed consent, have a serious and incurable illness, are at the end of their lives and are in a situation of unbearable suffering. Since the Supreme Court of Canada’s 2015 Carter decision, access to MAID, under certain conditions, has become a constitutional right. Quebec physicians are now likely to receive requests for MAID from their patients. The Quebec and Canadian laws recognize a physician’s (...) right to conscientious objection, but this right is contested both in the medical ethics literature and in the public sphere. This paper presents the results of a qualitative study conducted with twenty Quebec physicians who did not integrate MAID into their medical practice, either because they were opposed to or deeply ambivalent about MAID. The interviews aimed to explore the reasons – religious and secular – for opposition to or ambivalence towards MAID. The secular reasons given by participants were grouped into four main categories: 1) the ends of medicine and professional identity, 2) the philosophy of palliative medicine and resource allocation in palliative care, 3) benevolent paternalism, the “good death”, and the interests of future selves, 4) the risk of a slippery slope and the protection of vulnerable people. (shrink)

This paper argues, against the prevailing view, that consent to privacy policies that regular internet users usually give is largely unproblematic from the moral point of view. To substantiate this claim, we rely on the idea of the right not to know (RNTK), as developed by bioethicists. Defenders of the RNTK in bioethical literature on informed consent claim that patients generally have the right to refuse medically relevant information. In this article we extend the application of the RNTK to online (...) privacy. We then argue that if internet users can be thought of as exercising their RNTK before consenting to privacy policies, their consent ought to be considered free of the standard charges leveled against it by critics. (shrink)

A dogma accepted in many ethical, religious, and legal frameworks is that the reasons behind conscientious objection (CO) in healthcare cannot be evaluated or judged by any institution because conscience is individual and autonomous. This paper shows that this background view is mistaken: the requirement to reveal and explain the reasons for conscientious objection in healthcare is ethically justified and legally desirable. Referring to real healthcare cases and legal regulations, this paper argues that these reasons should be evaluated either ex (...) ante or ex post and defends novel conceptual claims that have not been analyzed in the debates on CO. First, a moral threshold requirement: CO is only justified if the reasons behind a refusal are of a moral nature and meet a certain threshold of moral importance. Second, this paper considers the rarely discussed conceptual similarities between CO in healthcare and the legal regulations concerning military refusals that place the burden of proof on conscientious objectors. This paper concludes that conscientious objection in healthcare can be accommodated only in some cases of destroying or killing human organisms. (shrink)

The context of international health research involving human subjects, and this should appear obvious, is the human community. As such, basic questions of how human beings should be treated by other human beings, particularly in situations of unequal power – e.g., in the form of control, choice, or opportunity – lay at the foundations of related ethical discourse when ethics are discussed at all. I trace a narrative that follows upon a recent revision process of international guidelines for biomedical research (...) involving human subjects. I focus in particular upon the issue of a standard of care. In the second section, I draw upon philosophers John Rawls, Claudia Card, and Allen Buchanan to discuss concerns regarding the 'least advantaged members of society' in the context of global inequality. The paper includes reflections upon pedagogy in courses focused upon international health research involving human subjects. (shrink)

There is wide consensus among bioethicists about the importance of autonomy when determining whether or not a patient has the right to refuse life-saving treatment (LST). In this context, autonomy has typically been understood in terms of the patient’s ability to make an informed decision. According to the traditional view, decision-making capacity (DMC) is seen as both necessary and sufficient for the right to refuse LST. Recently, this view has been challenged by those who think that considerations of (...) authenticity and putative counterexamples should lead us to revise the traditional account. In this paper, we respond to these revisionist arguments, and we defend the traditional view according to which we have autonomy-based reasons to respect a patient’s decision to refuse LST if and only if she has DMC. (shrink)

Every year, hundreds of patients in England die whilst waiting for a kidney transplant, and this is evidence that the current system of altruistic-based donation is not sufficient to address the shortage of kidneys available for transplant. To address this problem, we propose a monopsony system whereby kidney donors can opt-in to receive financial compensation, whilst still preserving the right of individuals to donate without receiving any compensation. A monopsony system describes a market structure where there is only one ‘buyer’—in (...) this case the National Health Service. By doing so, several hundred lives could be saved each year in England, wait times for a kidney transplant could be significantly reduced, and it would lessen the burden on dialysis services. Furthermore, compensation would help alleviate the common disincentives to living kidney donation, such as its potential associated health and psychological costs, and it would also help to increase awareness of living kidney donation. The proposed system would also result in significant cost savings that could then be redirected towards preventing kidney disease and reducing health disparities. While concerns about exploitation, coercion, and the ‘crowding out’ of altruistic donors exist, we believe that careful implementation can mitigate these issues. Therefore, we recommend piloting financial compensation for living kidney donors at a transplant centre in England. (shrink)

In this chapter, I describe my “post-diagnosis” experiences as the parent of an autistic child, those years in which I tried, but failed, to make sense of the overwhelming and often nonsensical information I received about autism. I argue that immediately after being given an autism diagnosis, parents are pressured into making what amounts to a life-long commitment to a therapy program that (they are told) will not only dramatically change their child, but their family’s financial situation and even their (...) entire mode of existence. Moreover, despite information overload, many treatment programs for autism rely on empty jargon and make completely unrealistic promises, so parents are left feeling overwhelmed and panicked. Even well respected therapy programs encourage parents to spend liberally. Indeed, autistic therapists, who help construct what I refer to as the Culture of Autism, advise parents to commit to a minimum of 35 to 45 hours of intensive therapy every week. The implications are clear: for a parent who works full-time, their autistic child becomes a second full-time job. Autism is big business right now, and therapists are pushing parents to the brink of desperation. So it is not too surprising that there is a desperate cry for a more permanent solution—which is why researchers seek to cure autism. But there are two ways to conceptualize cure. A Therapeutic Cure model (TC) conceives of a cure as a beneficial treatment for the patient that eliminates or ameliorates the harms of the disease or condition. But the notion of a therapeutic cure for autism is highly implausible, given the complexities of autism. Indeed, at this point, the vast majority of researchers have come to the conclusion that the idea of a therapeutic cure for autism is simply a non-starter. Therefore the bulk of research seeking a cure for autism focuses instead on a second approach, which I refer to as the Negative Eugenics Cure model (NEC). With this model, the intention is to eliminate the disease or condition without regard for the health or well-being of the organism carrying the disease or condition. So, with regard to autism, researchers are focusing on identifying genetic markers for autism that can be detected in utero, or in embryos, so that autistic fetuses can be eliminated and autism eradicated by preventing the existence of autistic individuals. I review both models and argue that both fail to provide convincing arguments that the “solution” either offers is desirable. Both rest on the assumption that autism renders a life not worth living which, all things considered, is false. Instead of pushing to cure autism, an idea pervasive in this Culture of Autism, I contend that autistics are individuals with lives worth living. Moreover, rather than expend millions on research to search for the means to eliminate autism, we should instead expend our resources to ensure autistic individuals have access to support they may need. If the phenomenology of autism were better understood and appreciated, the panicked demand for a cure for autism might abate and perhaps autism could be seen as having value in and of its own right. (shrink)

Formal clinical trials of pig-to-human organ transplant—known as xenotransplantation—may begin this decade, with the first trials likely to consist of either adult renal transplants or pediatric cardiac transplant patients. Xenotransplantation as a systematic scientific study only reaches back to the latter half of the 20th century, with episodic xenotransplantation events occurring prior to that. As the science of xenotransplantation has progressed in the 20th and 21st centuries, the public's knowledge of the potential therapy has also increased. With this, there have (...) been shifting ethical stances toward xenotransplantation in key areas, such as religious and public viewpoints towards xenotransplantation, animal rights, and public health concerns. This review provides a historical–ethical account of xenotransplantation and details if or how viewpoints have shifted over time. (shrink)

Importance: Patients with remitted major depressive disorder (MDD) were previously found to display abnormal functional magnetic resonance imaging connectivity (fMRI) between the right superior anterior temporal lobe (RSATL) and the subgenual cingulate cortex and adjacent septal region (SCSR) when experiencing self-blaming emotions relative to emotions related to blaming others (eg, "indignation or anger toward others"). This finding provided the first neural signature of biases toward overgeneralized self-blaming emotions (eg, "feeling guilty for everything"), known to have a key role in cognitive (...) vulnerability to MDD. It is unknown whether this neural signature predicts risk of recurrence, a crucial step in establishing its potential as a prognostic biomarker, which is urgently needed for stratification into pathophysiologically more homogeneous subgroups and for novel treatments. -/- Objective: To use fMRI in remitted MDD at baseline to test the hypothesis that RSATL-SCSR connectivity for self-blaming relative to other-blaming emotions predicts subsequent recurrence of depressive episodes. -/- Design, setting, and participants: A prospective cohort study from June 16, 2011, to October 10, 2014, in a clinical research facility completed by 75 psychotropic medication-free patients with remitted MDD and no relevant comorbidity. In total, 31 remained in stable remission, and 25 developed a recurring episode over the 14 months of clinical follow-up and were included in the primary analysis. Thirty-nine control participants with no personal or family history of MDD were recruited for further comparison. -/- Main outcomes and measures: Between-group difference (recurring vs stable MDD) in RSATL connectivity, with an a priori SCSR region of interest for self-blaming vs other-blaming emotions. -/- Results: We corroborated our hypothesis that during the experience of self-blaming vs other-blaming emotions, RSATL-SCSR connectivity predicted risk of subsequent recurrence. The recurring MDD group showed higher connectivity than the stable MDD group (familywise error-corrected P < .05 over the a priori SCSR region of interest) and the control group. In addition, the recurring MDD group also exhibited RSATL hyperconnectivity with the right ventral putamen and claustrum and the temporoparietal junction. Together, these regions predicted recurrence with 75% accuracy. -/- Conclusions and relevance: To our knowledge, this study is the first to provide a robust demonstration of an fMRI signature of recurrence risk in remitted MDD. Additional studies are needed for its further optimization and validation as a prognostic biomarker. (shrink)

A morally acceptable course of AI development should avoid two dangers: creating unaligned AI systems that pose a threat to humanity and mistreating AI systems that merit moral consideration in their own right. This paper argues these two dangers interact and that if we create AI systems that merit moral consideration, simultaneously avoiding both of these dangers would be extremely challenging. While our argument is straightforward and supported by a wide range of pretheoretical moral judgments, it has far-reaching moral implications (...) for AI development. Although the most obvious way to avoid the tension between alignment and ethical treatment would be to avoid creating AI systems that merit moral consideration, this option may be unrealistic and is perhaps fleeting. So, we conclude by offering some suggestions for other ways of mitigating mistreatment risks associated with alignment. (shrink)

The conjunction of wireless computing, ubiquitous Internet access, and the miniaturisation of sensors have opened the door for technological applications that can monitor health and well-being outside of formal healthcare systems. The health-related Internet of Things (H-IoT) increasingly plays a key role in health management by providing real-time tele-monitoring of patients, testing of treatments, actuation of medical devices, and fitness and well-being monitoring. Given its numerous applications and proposed benefits, adoption by medical and social care institutions and consumers may be (...) rapid. However, a host of ethical concerns are also raised that must be addressed. The inherent sensitivity of health-related data being generated and latent risks of Internet-enabled devices pose serious challenges. Users, already in a vulnerable position as patients, face a seemingly impossible task to retain control over their data due to the scale, scope and complexity of systems that create, aggregate, and analyse personal health data. In response, the H-IoT must be designed to be technologically robust and scientifically reliable, while also remaining ethically responsible, trustworthy, and respectful of user rights and interests. To assist developers of the H-IoT, this paper describes nine principles and nine guidelines for ethical design of H-IoT devices and data protocols. (shrink)

The psychological and neurobiological processes underlying moral judgement have been the focus of many recent empirical studies1–11. Of central interest is whether emotions play a causal role in moral judgement, and, in parallel, how emotion-related areas of the brain contribute to moral judgement. Here we show that six patients with focal bilateral damage to the ventromedial prefrontal cortex (VMPC), a brain region necessary for the normal generation of emotions and, in particular, social emotions12–14, produce an abnor- mally ‘utilitarian’ pattern of (...) judgements on moral dilemmas that pit compelling considerations of aggregate welfare against highly emotionally aversive behaviours (for example, having to sacrifice one person’s life to save a number of other lives)7,8. In contrast, the VMPC patients’ judgements were normal in other classes of moral dilemmas. These findings indicate that, for a selective set of moral dilemmas, the VMPC is critical for normal judgements of right and wrong. The findings support a necessary role for emotion in the generation of those judgements. (shrink)

El consentimiento informado del paciente se inserta en el ámbito de su autonomía decisoria. Aunque presenta un sustrato corporal, este aparece combinado con elementos de índole moral que presuponen una noción concreta de persona como libre y autónoma. Tanto de las definiciones doctrinales como del material normativo se desprende que se trata de una posición jurídica subjetiva del paciente, alternativamente calificada como una “pretensión” o “derecho subjetivo en sentido estricto”, en términos hohfeldianos; un “derecho negativo de defensa”, o una “inmunidad”. (...) En España, el Tribunal Constitucional ha vinculado el consentimiento informado del paciente al derecho fundamental a la integridad física y moral (15 CE), lo cual permite plantear el análisis en clave iusfundamental. Con todo, se advierten dudas e incompatibilidades entre la explicación habitual del consentimiento informado, su fundamento constitucional y su regulación jurídica. El objetivo del presente libro consiste en proporcionar una definición integral del consentimiento informado como derecho subjetivo del paciente y como manifestación de un derecho fundamental, a partir de una óptica poliédrica que aporta certeza en la práctica asistencial y jurídica. // The patient's right to informed consent is inserted within the scope of his decisional autonomy. Although it has a bodily background, it is combined with features of moral nature, which presupposes a concrete notion of the person as free and autonomous. Both, doctrinal approaches and normative legal material show that it is a subjective legal position of the patient, being alternatively qualified as a Hohfeldian “claim” or a “subjective right in a strict sense”; a "negative right" or an "immunity." The Spanish Constitutional Court has linked the informed consent of the patient to the fundamental right to physical and moral integrity (15 CE), which allows us to propose a fundamental rights-based analysis. Nonetheless, doubts and inconsistencies are perceived between the customary explanation of informed consent, its constitutional foundation and its legal regulation. The aim of this book is to provide a comprehensive definition of informed consent as subjective right of the patient and expression of a fundamental right, from a multi-fold perspective that provides certainty in both legal and health care practice. (shrink)

How many factors, i.e. departures from normality, are necessary to explain a delusion? Maher’s classic one-factor theory argues that the only factor is the patient’s anomalous experience, and a delusion arises as a normal explanation of this experience. The more recent two-factor theory, on the other hand, contends that a second factor is also needed, with reasoning abnormality being a potential candidate, and a delusion arises as an abnormal explanation of the anomalous experience. In the past few years, although (...) there has been an increasing number of scholars offering a variety of arguments in defence of Maher’s one-factor theory, these arguments have not been adequately addressed by two-factor theorists. This paper aims to address this gap by critically examining the arguments on three crucial issues: the intelligibility of delusions, the dissociation between anomalous experiences and delusions, and the empirical evidence of a second factor. I will argue that the Maherian notion of anomalous experience is not sufficient for explaining delusions and the two-factor theory is on the right track in its search for the missing factor in the aetiology of delusions. (shrink)

This paper motivates the idea that social robots should be credited as moral patients, building on an argumentative approach that combines virtue ethics and social recognition theory. Our proposal answers the call for a nuanced ethical evaluation of human-robot interaction that does justice to both the robustness of the social responses solicited in humans by robots and the fact that robots are designed to be used as instruments. On the one hand, we acknowledge that the instrumental nature of robots and (...) their unsophisticated social capabilities prevent any attribution of rights to robots, which are devoid of intrinsic moral dignity and personal status. On the other hand, we argue that another form of moral consideration—not based on rights attribution—can and must be granted to robots. The reason is that relationships with robots offer to the human agents important opportunities to cultivate both vices and virtues, like social interaction with other human beings. Our argument appeals to social recognition to explain why social robots, unlike other technological artifacts, are capable of establishing with their human users quasi-social relationships as pseudo-persons. This recognition dynamic justifies seeing robots as worthy of moral consideration from a virtue ethical standpoint as it predicts the pre-reflective formation of persistent affective dispositions and behavioral habits that are capable of corrupting the human user’s character. We conclude by drawing attention to a potential paradox drawn forth by our analysis and by examining the main conceptual conundrums that our approach has to face. (shrink)

How does doubt come about? What are the mechanisms responsible for our inclinations to reassess propositions and collect further evidence to support or reject them? In this paper, I approach this question by focusing on what might be considered a distorting mirror of unreasonable doubt, namely the pathological doubt of patients with obsessive–compulsive disorder (OCD). Individuals with OCD exhibit a form of persistent doubting, indecisiveness, and over-cautiousness at pathological levels (Rasmussen and Eisen in Psychiatr Clin 15(4):743–758, 1992; Reed in Obsessional (...) experience and compulsive behaviour: a cognitive-structural approach, Academic Press, Cambridge, 1985; Tolin et al. in Cogn Ther Res 27(6):657–669, 2003). I argue that the failure in OCD is of an affective nature, involving both excessive epistemic anxiety and hyperactive feelings of uncertainty. I further argue that our adaptive disposition to inquire about the right matters—that is, about propositions which are both epistemically risky and imply harmful possibilities—might depend on these affective mechanisms. (shrink)

Decision-making capacity (DMC) plays an important role in clinical practice—determining, on the basis of a patient’s decisional abilities, whether they are entitled to make their own medical decisions or whether a surrogate must be secured to participate in decisions on their behalf. As a result, it’s critical that we get things right—that our conceptual framework be well-suited to the task of helping practitioners systematically sort through the relevant ethical considerations in a way that reliably and transparently delivers correct verdicts (...) about who should and should not have the authority to make their own medical decisions. Unfortunately, however, the standard approach to DMC does not get things right. It is of virtually no help in identifying and clarifying the relevant ethical considerations. And, embedded in the prevailing anti-paternalist paradigm, DMC assessments obfuscate and distort the underlying ethical justification for granting or withholding decisional authority. Here, we describe the core commitments of the standard approach to DMC and then highlight three problems with it. We then argue that these problems are significant enough that they call for more than merely tinkering and fine tuning—variations of the standard approach cannot adequately address them. Instead, we should ditch DMC. (shrink)