The conduct of prior ethics review of human research projects helps to protect vulnerable groups or populations from potential negative impacts of research. Contemporary considerations in human research considers the concept of vulnerability in terms of access to research opportunities, impacts on the consenting process, selection bias, and the generalisability of results. Recent work questions the validity of using enumerated lists as a check box approach to protect research participants from exploitation. Through the use of broad categories to treat cohorts (...) of human research participants as homogenous classes and label some participants as vulnerable merely because they are members of a particular class, some ethics reviewers have used the National Statement on Ethical Conduct in Human Research to strip individuals of their “ethical equality”. Labelling people as vulnerable does not help researchers or human research ethics committee members develop an understanding of the complexities of applying the principles of respect and of justice in ethical decision-making. Conversely, defining specific cohorts of research participants as needing nuanced ethical consideration, due to their vulnerable nature, may imply that other population groups need not be considered vulnerable. We contend that this assumption is erroneous. This paper explores the way that human research ethics guidance documents treat vulnerability within the Australian context and draws on contemporary discussion to focus an alternative perspective based on the principles in the National Statement on Ethical Conduct in Human Research for researchers and human research ethics committee members to consider. (shrink)

Personal autonomy is often lauded as a key value in contemporary Western bioethics. Though the claim that there is an important relationship between autonomy and rationality is often treated as uncontroversial in this sphere, there is also considerable disagreement about how we should cash out the relationship. In particular, it is unclear whether a rationalist view of autonomy can be compatible with legal judgments that enshrine a patient's right to refuse medical treatment, regardless of whether the reasons underpinning the choice (...) are known and rational, or indeed whether they even exist. Jonathan Pugh brings recent philosophical work on the nature of rationality to bear on the question of how we should understand personal autonomy in contemporary bioethics. In doing so, he develops a new framework for thinking about the concept of autonomy, one that is grounded in an understanding of the different roles that rational beliefs and rational desires have to play in it. Pugh's account allows for a deeper understanding of d the relationship between our freedom to act and our capacity to decide autonomously. His rationalist perspective is contrasted with other prominent accounts of autonomy in bioethics, and the revisionary implications it has for practical questions in biomedicine are also outlined. (shrink)

Most people who defend physician-assisted death (PAD) endorse the Joint View, which holds that two conditions—autonomy and welfare—must be satisfied for PAD to be justified. In this paper, we defend an Autonomy Only view. We argue that the welfare condition is either otiose on the most plausible account of the autonomy condition, or else is implausibly restrictive, particularly once we account for the broad range of reasons patients cite for desiring PAD, such as “tired of life” cases. Moreover, many of (...) the common objections to an Autonomy Only view fail once we understand the extent of the autonomy condition’s requirements—in particular, the importance of one’s values for autonomous choices. If our view is correct, then the scope of permissible PAD is broader than is currently accepted in both the philosophical literature and the law, and therefore poses an important challenge to this widely accepted view on justified PAD. (shrink)

This article defends ‘relational theorizing’ in bioethics and public health ethics and describes its importance. It then offers an interpretation of solidarity and care understood as normatively patterned and psychologically and socially structured modes of relationality; in a word, solidarity and care understood as ‘practices.’ Solidarity is characterized as affirming the moral standing of others and their membership in a community of equal dignity and respect. Care is characterized as paying attention to the moral being of others and their needs, (...) suffering, and vulnerability. The wager of relational theorizing in health care and public health is that substantive ethical visions of solidarity and care will provide support for more just and egalitarian health care and public health policies. (shrink)

The ethical principle of autonomy is among the most fundamental in ethics, and it is particularly salient for those in public health, who must constantly balance the desire to improve health outcomes by changing behavior with respect for individual freedom. Although there are some areas in which there is a genuine tension between public health and autonomy—childhood vaccine mandates, for example—there are many more areas where not only is there no tension, but public health and autonomy come down to the (...) same thing. These areas of overlap are often rendered invisible by a thin understanding of autonomy. Better integrating newer theoretical insights about autonomy into applied ethics can make discussions of public health ethics more rigorous, incisive, and effective. Even more importantly, bringing modern concepts of autonomy into public health ethics can showcase the many areas in which public health and autonomy have the same goals, face the same threats, and can be mutually advanced by the same kinds of solutions. This article provides a schema for relational autonomy in a public health context and gives concrete examples of how autonomy can be served through public-health interventions. It marshals insights from sociology, psychology, and philosophy to advance a theory of autonomy and coercion that recognizes three potential threats to autonomy: threats to choice sets, threats to knowledge, and threats to preferences. (shrink)

Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit (...) and critically reflect upon the current definitions of decision-making capacity. For this purpose, we propose to see capacity through the lens of essential contestability as it warns us against any reification of what it means to have capacity. Currently, capacity is often perceived of as a mental or cognitive ability which somehow resides within the person, obscuring the fact that capacity is not just an objective property which can be assessed, but always operates within a dominant cultural framework that “creates” that same capacity and defines the threshold between capable and incapable in a specific situation. Defining capacity as an essentially contested concept means using it in a questioning mode and giving space to alternative interpretations that might inform and advance the debate surrounding decision-making. (shrink)

The use of artificial intelligence in healthcare contexts is highly controversial for the (bio)ethical conundrums it creates. One of the main problems arising from its implementation is the lack of transparency of machine learning algorithms, which is thought to impede the patient’s autonomous choice regarding their medical decisions. If the patient is unable to clearly understand why and how an AI algorithm reached certain medical decision, their autonomy is being hovered. However, there are alternatives to prevent the negative impact of (...) AI opacity in shared (healthcare professional–patient) decision-making processes, and benefit from the high accuracy of such systems. Despite these ethical issues, this paper advocates for its usage and also defends the positive role that it could have in enhancing patients’ autonomy. I advocate for a system where the implementation of AI is only partial, and humans will remain in control of oversighting algorithm interpretation of medical images and patients’ data. (shrink)

The COVID-19 pandemic has highlighted the difficult task of balancing access to misinformation with respect for patient decision-making. Due to its innate antagonism, the paradigm of “physician paternalism” versus “patient autonomy” may not adequately capture the clinical relationship. The authors hypothesized that most patients would, in fact, prefer significant physician input as opposed to unopinionated information when making medical decisions. There is a lack of empirical data corroborating this in the United States. To that end, a survey was distributed to (...) 650 individuals through Amazon Mechanical Turk, of which 499 responses met pre-determined quality criteria. Most respondents believed their doctor's insight would be better than their own if injured or gravely ill. When asked to affirm preferences separately, a significantly higher proportion of respondents preferred guidance from their doctor when making medical decisions compared to being presented with unopinionated information ( p < 0.001). Encouragingly, 93.1% believed that the doctor's primary goal was their health. When asked directly to compare physician guidance to unopinionated information, 69.1% respondents stated they would prefer physician guidance. We found a consistent association between educational/economic background and affirmative responses ( p < 0.001), suggesting particular attention should be paid to patients that are disadvantaged with respect to these demographic factors. The belief in a shared goal, and a consistent preference for physician input, suggests that patients endorse a more collaborative view of the clinical dynamic than is suggested by the paternalism-autonomy paradigm. This pilot study suggests physicians should not be afraid to communicate conviction with regard to treatment decisions. (shrink)

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental and (...) child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (shrink)

Consumer-targeted sleep tracking applications (STA) that run on mobile devices (e.g., smartphones) promise to be useful tools for the individual user. Assisted by built-in and/or external sensors, these apps can analyze sleep data and generate assessment reports for the user on their sleep duration and quality. However, STA also raise ethical questions, for example, on the autonomy of the sleeping person, or potential effects on third parties. Nevertheless, a specific ethical analysis of the use of these technologies is still missing (...) so far. The aim of the current analysis is to identify the characteristics of sleep tracking apps and to explore the specific ethical aspects associated with this form of self-tracking. Firstly, the field of mobile health applications was screened for STA to explore their typical functions and target user groups. Secondly, an ethical analysis was conducted focusing on the three ethical dimensions: (1) medicalization, (2) vulnerability, and (3) relationality. The analysis indicates that these three normative dimensions are decisive for assessing STA and that the ethical profile of this technology varies greatly depending on the respective user group. As the three dimensions medicalization, vulnerability, and relationality play a distinguishing role in the use of STA, they should be especially addressed in responsible development and implementation of STA. In addition, the analysis helps to evaluate the use of STA, in terms of different risks for specific user groups, the sensitive contexts of usage, and potential interference with the intimacy of third parties. (shrink)

Developed in the past two decades, the clustered regularly interspaced short palindromic repeats‐associated protein 9 (CRISPR‐Cas9) technique offers greater accessibility and efficiency in editing genes. Its immediate success has transformed medical research and treatment in productive ways, but has also left questions about ethical consequences in its wake. These are questions familiar to bioethical inquiry. How do we balance short‐term and long‐term benefits and risks? How do we promote just and equitable access to new medical interventions? How do we protect (...) respect for individual autonomy? These questions require a balance between protecting individuals' liberties and the good of the communities in which they live. In this essay, I am interested in how the principle of respect for autonomy can be interpreted in light of CRISPR‐Cas9. I argue that a relational autonomy framework forges a middle ground between the need to respect individual freedom to pursue genetic treatments and the need to acknowledge the networks of dependence that define our moral worlds. I identify three thematic areas that relational autonomy brings into greater focus: the importance of trust, the acknowledgment of vulnerability/dependence, and the promotion of justice. Autonomy understood relationally allows us to see individual freedom as tethered to communal well‐being. (shrink)

Resident-to-resident aggression is quite prevalent in long-term care settings. Within popular and empirical accounts, this form of aggression is most commonly attributed to the actions of an aberrant individual living with dementia characterized as the “violent resident.” It is often a medical diagnosis of dementia that is highlighted as the ultimate cause of aggression. This neglects the fact that acts of aggression are influenced by broader structural conditions. This has ethical implications in that the emphasis on individual aberration informs public (...) policy strategies for prevention with a focus on restricting the freedom of individuals using behavioural modification, drugs, or other restraints with the intent to protect others from harm. A more ethical approach requires attention to the structural conditions of long-term care that both foster aggression and constrain prevention efforts. To this end, we turn to a model of relational citizenship that offers a theory of embodied selfhood and relationality as essential to human dignity, thus entailing human rights protections. The application of an ethic based on this model offers a more holistic prevention strategy for resident-to-resident aggression by drawing attention to the critical need and obligation to promote human flourishing through system level efforts. (shrink)

It is widely accepted that children enjoy some form of a right to bodily integrity. However, there is little agreement about the precise nature and scope of this right. This paper offers a conceptual analysis of the child's right to bodily integrity, in order to further elucidate the relationship between the child's right to bodily integrity and considerations of autonomy. Following a discussion of Leif Wenar's work on the structure and justification of rights, I first explain how the adult's right (...) to bodily integrity can be distilled into separate elements that may plausibly be justified by different moral considerations. In particular, I claim that this analysis suggests that whilst the adult's right to bodily integrity is not wholly reducible to bodily autonomy, autonomy nonetheless remains entwined with our understanding of this right in a number of ways. On the basis of this discussion, I go on to outline three important complexities that arise when we consider the child's right to bodily integrity, before particularly focusing on the question of how third parties should determine whether or not to perform a physical interference upon a child who lacks decision-making capacity. Here, I raise some objections to Earp and Mazor's recent attempts to answer this question, before briefly defending an ‘autonomy-based interests’ account of permissible interference, an account that shares in what I take to be the spirit, if not the precise letter, of these earlier views. (shrink)

At healthcare facilities worldwide, women during childbirth undergo medical procedures they haven’t consented to and experience mistreatment and disrespect. This phenomenon is recognized as obstetric violence (OV), a distinct form of gender violence. The resulting trauma carries both immediate and long-term implications, making it vital to address for promoting women’s health. OV is partly shaped by a narrow, paternalistic conception of vulnerability. A flawed conception of the vulnerability of pregnant women and fetuses has opened the door to medical control and (...) coercion during childbirth. In this paper we examine what role notions of vulnerability play in perpetuating OV and consider recent attitudinal shifts in research ethics as a model for addressing it. (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)

BackgroundRespect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients’ preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of ‘relational autonomy’ may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative (...) care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.Main bodyHere, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.ConclusionThis article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices. (shrink)

Autonomy of people on the autism-spectrum has only been very rarely conceptually explored. Autism spectrum is commonly considered a hetereogenous disorder, and typically described as a behaviorally-defined neurodevelopmental disorder associated with the presence of social-communication deficits and restricted and repetitive behaviors. Autism research mainly focuses on the behavior of autistic people and ways to teach them skills that are in line with social norms. Interventions such as therapies are being justified with the assumption that autists lack the capacity to be (...) self-reflective and to be “author of their lives”. We question this assumption, as some empirical research shows that autists are aware of their strengths and are critical about social norms, we take this as a starting point to reconsider the beliefs about autistic people’s capacities. As a theoretical framework, we draw on Berlin’s idea of positive and negative liberty as he clearly distinguishes between one’s own developed preferences and the simple absence of interference. By drawing on the concept of positive liberty, we illustrate that a lot of autists are aware of their own needs, and usually do not deny their own needs, values and interests. This makes them less prone than non-autistic people to adapt their preferences to external influences, which might be seen as sticking to an authentic way of living. Our analysis shows that many autists are hindered to be autonomous due to unjustified interference, unreflected assumptions about their self-determination, or by paternalistic actions. These observations contribute to a better understanding when help and interference are justified and a more differentiated understanding of autonomy of autistic people. (shrink)

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at (...) an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangibl... (shrink)

In this paper, I summarize the medical evidence regarding the auditory and non-auditory effects of noise and analyse the ethics of noise and personal autonomy in the social environment using a variety of case studies. Key to this discussion is the fact that, contrary to the traditional definition of noise, sound can be noise without being annoying, as the evidence shows that some sounds can harm without being perceived. Ultimately, I develop a theory of ‘noisy autonomy’ with which to guide (...) us in discussing the public health ethics of noise and other sounds. (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)

Excellent patient care within the emergency department requires interdisciplinary training, teamwork, and communication to manage the chaos of the environment. Specifically, invasive procedures required to manage airway, breathing, and circulation via intubation, chest compressions, and establishing intravenous access can provide a direct benefit to save lives but also have the potential to harm both patients and health care clinicians alike; emergency health care clinicians can be exposed to significant amounts of blood and body fluids as well as other threats of (...) physical and psychological harm. The ethical components of care in this environment are often under‐recognized due to the need for rapid patient assessment and immediate action. Moreover, challenges to practice that can include lack of qualified personnel, equipment, and other resources to provide safe care to a large volume of patients can lead to moral distress in ED staff. Because the ED is a high‐uncertainty, high‐acuity environment, continuing interprofessional communication, collaboration, and planning is critical. Opportunities for multidisciplinary policy dialogue and the development of professional guidelines can make the ED a safer environment for both patients and providers. (shrink)

_GPs serve in a double role of treatment provider and expert in certain social insurance systems, such as the Norwegian one. Some physicians assert that the ethical obligations of the two roles conflict with each other. The objective of this article is to show that social insurance medical ethics, which are based on recognised principles of medical ethics, unite the physicians’ obligations associated with these roles. The method applied is a medical ethics conceptual analysis. The material consists of literature on (...) normative SIME. The study shows that SIME expands the role of the treatment provider to a wider societal context. Here, physicians should attempt to balance the perspectives of sympathy with empathy, as treatment providers, with the impartiality in their role as experts. Five principles of medical ethics are fundamental. Respect for human dignity is the overarching principle of medical ethics. The four others are nonmaleficence, beneficence, autonomy, and social justice. The article discusses two areas where it is asserted that the roles of treatment provider and expert conflict with each other: the application of beneficence and justice, and the duty of confidentiality versus the duty to provide information to the National Insurance service. The study concludes that there are no basic ethical conflicts between the two roles. The ethical problems that may arise when exercising this duality should be viewed in the same way as other ethical problems in medicine. Actual application and balancing of the principles may necessitate negotiations between patients and physicians. _ _Keywords_: dual roles, professionalism, deliberation, impartiality, medical principle ethics, values of welfare state. (shrink)

In Moral Case Deliberation, healthcare professionals discuss ethically difficult patient situations in their daily practice. There is a lack of knowledge regarding the content of MCD and there is a need to shed light on this ethical reflection in the midst of clinical practice. Thus, the aim of the study was to describe the content of healthcare professionals’ moral reasoning during MCD. The design was qualitative and descriptive, and data consisted of 22 audio-recorded inter-professional MCDs, analysed with content analysis. The (...) moral reasoning centred on how to strike the balance between personal convictions about what constitutes good care, and the perceived dissonant care preferences held by the patient. The healthcare professionals deliberated about good care in relation to demands considered to be unrealistic, justifications for influencing the patient, the incapacitated patient’s nebulous interests, and coping with the conflict between using coercion to achieve good while protecting human dignity. Furthermore, as a basis for the reasoning, the healthcare professionals reflected on how to establish a responsible relationship with the vulnerable person. This comprised acknowledging the patient as a susceptible human being, protecting dignity and integrity, defining their own moral responsibility, and having patience to give the patient and family time to come to terms with illness and declining health. The profound struggle to respect the patient’s autonomy in clinical practice can be understood through the concept of relational autonomy, to try to secure both patients’ influence and at the same time take responsibility for their needs as vulnerable humans. (shrink)

Autonomy and consent have been central values in Western moral and political thought for centuries. One way of understanding the bioethical models that started to develop, especially in the 1970s, is that they were about the fusion of a long-standing professional ethics with the core values underpinning modern political institutions. That there was a need for this kind of fusion is difficult to dispute, especially since the provision of health care has in most developed countries become an ever more important (...) concern of our political institutions, with governments playing a significant role in regulating and facilitating the provision of health care and in many countries even largely organizing it. There is, nevertheless, still room for dispute about how best to achieve this fusion and how to best think about autonomy and consent in a biomedical context. The simplest model we can have is probably about how being a person is largely about having the capacity of autonomous choice and that the main mode through which we exercise autonomy is by providing informed consent. Yet, liberal democracy's core idea that human beings have a high and equal value is also found in other accounts of the person. The human-rights framework provides an alternative model for thinking about personhood and about patient care. The human-rights approach is grounded, not in an account of autonomy, but in an account of the moral and political personhood that people possess merely by being human beings. In this approach, values like dignity and integrity, both highly relevant in a bioethical context, are identified as distinct values rather than being derived from and therefore reduced to respect for autonomous choice. The human-rights approach can supplement the problematic notion of autonomy that has been central to bioethics by placing this notion in a broader, strongly pluralistic framework. (shrink)

In this paper I discuss the important yet overlooked role played by time in public health ethics, clinical ethics, and personal ethics, and present an exploratory analysis of temporal inequalities and temporal autonomy.

Efforts to improve public health, both in the context of infectious diseases and non-communicable diseases, will often consist of measures that confer risk on some persons to bring about benefits to those same people or others. Still, it is unclear what exactly justifies implementing such measures that impose risk on some people and not others in the context of public health. Herein, we build on existing autonomy-based accounts of ethical risk imposition by arguing that considerations of imposing risk in public (...) health should be centered on a relational autonomy and relational justice approach. Doing so better captures what makes some risk permissible and others not by exploring the importance of power and context in such deliberations. We conclude the paper by applying a relational account of risk imposition in the cases of (a) COVID-19 measures and (b) the regulation of sugar-sweetened beverages to illustrate its explanatory power. (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)

Noninvasive prenatal screening using cell-free DNA, which analyzes placental DNA circulating in maternal blood to provide information about fetal chromosomal disorders early in pregnancy and without risk to the fetus, has been hailed as a potential “paradigm shift” in prenatal genetic screening. Commercial provision of cell-free DNA screening has contributed to a rapid expansion of the tests included in the screening panels. The tests can include screening for sex chromosome anomalies, rare subchromosomal microdeletions and aneuploidies, and most recently, the entire (...) fetal genome. The benefits of this screening tool are generally framed, by both providers and commercial laboratories, as enhancing reproductive autonomy and choice by providing an earlier, simpler, and more accurate screening while potentially reducing the need for invasive follow-up testing. The majority of the literature has explored these issues empirically or conceptually from a European or North American vantage point, one that assumes normative priorities such as individual reproductive autonomy and the clinical availability of maternal health care or prenatal screening programs within which cell-free DNA screening is offered. While its implementation has raised both challenges and opportunities, very little is known about real-world experiences and the implications of the rapid introduction of cell-free DNA screening outside of North America and Europe, especially in low- and middle-income countries. To begin addressing this gap in knowledge, we organized a four-day international workshop to explore the ethical, legal, social, economic, clinical, and practical implications of the global expansion of cell-free DNA screening. We describe eight key insights that arose from the workshop. (shrink)

Background Best interests is a ubiquitous principle in medical policy and practice, informing the treatment of both children and adults. Yet theory underlying the concept of best interests is unclear and rarely articulated. This paper examines bioethical literature for theoretical accounts of best interests to gain a better sense of the meanings and underlying philosophy that structure understandings. Methods A scoping review of was undertaken. Following a literature search, 57 sources were selected and analysed using the thematic method. Results Three (...) themes emerged. The first placed best interests within the structure of wider theory, noting relationships with consequentialism, deontology, prudential value theory, rights and political philosophy. The second mapped a typology of processes of decision-making, among which best interests was ambiguously positioned. It further indicated factors that informed best interests decision-making, primarily preferences, dignity and quality of life. The final theme considered best interests from a relational perspective. Conclusions Characterisation of best interests as strictly paternalist and consequentialist is questionable: while accounts often suggested a consequentialist basis for best interests, arguments appeared philosophically weak. Deontological accounts, found in law and Kantianism, and theories of political liberalism influenced accounts of best interests, with accounts often associating best interests with negative patient preferences (i.e. individual refusals). There was much more emphasis on negative interests than positive interests. Besides preference, factors like dignity and quality of life were held to inform best interests decisions, but generally were weakly defined. To the extent that preferences were unable to inform decision making, decisions were either made by proxy authority or by an intersubjective process of diffuse authority. Differing approaches reflect bifurcations in liberal philosophy between new liberalism and neo-liberalism. Although neither account of authority appears dominant, bias to negative interests suggests that bioethical debate tends to reflect the widespread ascendancy of neo-liberalism. This attitude was underscored by the way relational accounts converged on private familial authority. The visible connections to theory suggest that best interests is underpinned by socio-political trends that may set up frictions with practice. How practice negotiates these frictions remains a key question. (shrink)

Nursing and bioethics have a lot in common because they share concerns about life and death, illness and health, the rights of individuals and communities, ethical patient care, health care delivery, and public health. Nurses and bioethicists contribute to ethical practice, ethics scholarship, and health policy‐making in a variety of ways. Some nurses have bioethics education or experience, some bioethicists study or collaborate closely with nurses, and some of us proudly identify as both bioethicists and as nurses. Despite certain shared (...) and interwoven aims, bioethicists and nurses often accomplish their goals in dissimilar ways, have diverse educational and training trajectories as well as distinct roles and responsibilities, and are viewed differently within health care organizations. Yet the work of bioethics and nursing can be, and in my view should more often be, synergistic. That synergism may be especially critical in the arena of health policy and ethics. Nurses can bring extraordinary insights and real‐world experiences to the policy table but are not always considered essential contributors. (shrink)

Health promotion involves social and environmental interventions designed to benefit and protect health. It often harmfully impacts the environment through air and water pollution, medical waste, g...

Through an exploration of the experience of severe and profound intellectual disability, this essay will attempt to expose the predominant, yet usually obscured, medical anthropology of the child and examine its effects on pediatric bioethics. I will argue that both modern western society and modern western medicine do, actually, have a robust notion of the child, a notion which can find its roots in three influential thinkers: Aristotle, Immanuel Kant and Jean Piaget. Together, these philosophers offer us a compelling vision: (...) the child is primarily a future rational, autonomous adult. While this tacit understanding has arguably widespread effects on such things as our concept of good parenting, of proper schooling, and so on, I will focus on the effect is has on the treatment of children with severe developmental disabilities. When examined in light of this population, the dominant medical anthropology of the child will be shown to be deficient. Instead, I argue for an expansion—indeed, a full reimagining—of our notions of childhood, not only to re-infuse dignity into the lives of children with SDD, but to better represent the goods of childhood, generally. (shrink)

Consider that an individual improves her capacities by neuroscientific means. It turns out that, besides altering her in the way(s) she intended, the enhancement also changes her personality in significant way(s) she did not foresee. Yet the person endorses her new self because the neuroenhancement she underwent changed her. Can the person’s approval of her new personality be autonomous? While questions of autonomy have already gathered a significant amount of attention in philosophical literature on human enhancement, the problem just described—henceforth (...) referred to as the question whether selfvalidating neuroenhancement can be autonomous—would not appear to have received due consideration. This article takes a step towards remedying the shortage. I start by explicating the main points of departure of its argument. In the subsequent sections of the article, I consider several possible reasons for deeming self-validating neuroenhancement incompatible with autonomy. On the basis of the consideration, I propose that self-validating neuroenhancement can be autonomous. (shrink)

ZusammenfassungDer vorliegende Beitrag erläutert anhand ausgewählter Beispiele das Potential von Dystopien für die Bioethik. Hierfür werden bestehende Ansätze narrativer Ethik kritisch rekonstruiert und erweitert. Mittels eines Theorieangebots aus der Literaturwissenschaft wird vorgeschlagen, moralische Überzeugungen, die Dystopien motivieren, in kohärentistische Reflexions- und Begründungsverfahren einzubeziehen. Weiterhin wird systematisch herausgearbeitet, welches Potential Dystopien durch sozio-kulturell dichte Szenarien, einen zeitgeschichtlichen Kontext und durch eine Sensibilisierung für die moralische Relevanz der Sprache für die bioethische Forschung bieten. Die dargestellten methodologischen Überlegungen bieten zum einen praktische Bezugspunkte (...) für didaktische Ansätze und zum anderen für die öffentliche Deliberation. Die Analyse zeigt jedoch auch, dass Dystopien jenseits einer Illustration oder Warnung eigene moralische Positionen zur Diskussion stellen. (shrink)