This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK’s National Health Service. We explore two aspects of consent: first, (...) how healthcare professionals consider the act of ‘consenting’ patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process. Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients’ understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients’ decision-making. Rather, decision-making is socially contextualised – also based on factors outside of information provision. A more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed. (shrink)

A central tenet of medical ethics holds that it is permissible to perform a medical intervention on a competent individual only if that individual has given informed consent to the intervention. However, in some circumstances it is tempting to say that the moral reason to obtain informed consent prior to administering a medical intervention is outweighed. For example, if an individual’s refusal to undergo a medical intervention would lead to the transmission of a dangerous infectious disease to other members of (...) the community, one might claim that it would be morally permissible to administer the intervention even in the absence of consent. Indeed, as we shall discuss below, there are a number of examples of public health authorities implementing compulsory or coercive measures for the purposes of infectious disease control (IDC). The plausibility of the thought that non-consensual medical interventions might be justified when performed for the purpose of IDC raises the question of whether such interventions might permissibly be used to realize other public goods. In this article we focus on one possibility: whether it could be permissible to non-consensually impose certain interventions that alter brain states or processes through chemical or physical means on serious criminal offenders. We shall suggest that some such interventions might be permissible if they safely and effectively serve to facilitate the offender’s rehabilitation and thereby prevent criminal recidivism. (shrink)

It has become increasingly common to point out that African morality is under-represented in ethical theorizing. However, it is less common to find arguments that this under-representation is unjustified. This latter claim tends to be simply assumed. In this paper I draw together arguments for this claim. In doing so, I make the case that the relative lack of attention paid to African moral ideas conflicts with epistemic and ethical values. In order to correct these shortcomings, moral theorists, broadly construed (...) as including descriptive and normative disciplines, have a duty to engage with and actively explore African moral ideas. I claim that Moral Foundations Theory is well suited to a descriptive exploratory project, and could provide a significant contribution to normative, African-derived moral theories that could be epistemically and ethically superior to their Western counterparts. (shrink)

This article analyzes certain aspects of the structure of bioethics as a discipline. It begins by arguing that bioethics is an academic discipline of a pragmatic nature and then puts forward a classification of the main problems, issues, and concerns in bioethics, using this classification as a way to outline the limits and framework of the field. Pushing further, it contends that comprehensive treatment of any topic in bioethics requires that three normative dimensions be taken into account. It concludes that (...) the classification of the issues and analysis of each issue's normative dimensions can provide valuable contributions toward understanding the sui generis structure of bioethics as a pragmatic discipline. (shrink)

With developed country governments and high resource institutions engaging in research in low- and middle-income countries, we argue that these entities have a moral obligation to help build and strengthen research infrastructure and capacity so local scientists and institutions can adequately conduct studies to understand and resolve the health burdens in low and middle income countries. We explore the moral justifications and motivations behind engaging in research capacity strengthening in the health sector in LMIC at multiple levels. In highlighting these (...) issues, this paper aims to initiate a global discourse around why capacity development in LMIC has a moral basis at the individual, institutional and system levels. (shrink)

The article raises the issue of ‘the right to be ill’, formulated by Tadeusz Kielanowski, a Polish physician and humanist. According to him, the right to health should be supplemented by the principle which would serve the protection of people with diseases or disabilities. One-sided interpretation of ‘the right to health’ may result in various forms of intolerance and discrimination. This paper presents what dangers Kielanowski recognized and explains why his approach was considered to be a novelty; what the idea (...) of ‘the right to be ill’ is, how the need for it is substantiated. This idea is considered in the context of human rights and it constitutes a starting point for the reflection on social phenomena connected with medicine. Taking into account the changes in medical ethics and culture which have taken place in the recent decades the question has been asked—is it worth talking about the right to be ill these days? Giving positive answers to this question, the spheres and issues that have been presented can be analyzed and assessed from the perspective of the right to be ill. (shrink)

The internet of things is increasingly spreading into the domain of medical and social care. Internet-enabled devices for monitoring and managing the health and well-being of users outside of traditional medical institutions have rapidly become common tools to support healthcare. Health-related internet of things (H-IoT) technologies increasingly play a key role in health management, for purposes including disease prevention, real-time tele-monitoring of patient’s functions, testing of treatments, fitness and well-being monitoring, medication dispensation, and health research data collection. H-IoT promises many (...) benefits for health and healthcare. However, it also raises a host of ethical problems stemming from the inherent risks of Internet enabled devices, the sensitivity of health-related data, and their impact on the delivery of healthcare. This paper maps the main ethical problems that have been identified by the relevant literature and identifies key themes in the on-going debate on ethical problems concerning H-IoT. (shrink)

Whether sociology should be part of bioethics has been extensively debated and critiqued. Feminist bioethics has long recognized the role of empirical work in bioethical inquiry; however, much feminist work in bioethics has been sidelined due to critiques of the role of social and sociological theory in bioethics research. In this essay, I examine how sociology plays a much deeper role in bioethical inquiry beyond the contribution of empirical methods. Building on these approaches, I show, through a case study, how (...) social and sociological theory play as vital a role in conducting comprehensive bioethical inquiry as sociological methods and methodology, and thus should no longer be sidelined in empirical bioethics. (shrink)

Non-medical sex selection is premised on the notion that the sexes are not interchangeable. Studies of individuals who undergo sex selection for non-medical reasons, or who have a preference for a son or daughter, show that they assume their child will conform to the stereotypical roles and norms associated with their sex. However, the evidence currently available has not succeeded in showing that the gender traits and inclinations sought are caused by a “male brain” or a “female brain”. Therefore, as (...) far as we know, there is no biological reason why parents cannot have the kind of parenting experience they seek with a child of any sex. Yet gender essentialism, a set of unfounded assumptions about the sexes which pervade society and underpin sexism, prevents parents from realising this freedom. In other words, unfounded assumptions about gender constrain not only a child’s autonomy, but also the parent’s. To date, reproductive autonomy in relation to sex selection has predominantly been regarded merely as the freedom to choose the sex of one’s child. This paper points to at least two interpretations of reproductive autonomy and argues that sex selection, by being premised on gender essentialism and/or the social pressure on parents to ensure their children conform to gender norms, undermines reproductive autonomy on both accounts. (shrink)

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

This article reports a survey of nurses in different cultural settings to reveal their perceptions of ethical role responsibilities relevant to nursing practice. Drawing on the Confucian theory of ethics, the first section attempts to understand nursing ethics in the context of multiple role relationships. The second section reports the administration of the Role Responsibilities Questionnaire (RRQ) to a sample of nurses in China (n = 413), the USA (n = 163), and Japan (n = 667). Multidimensional preference analysis revealed (...) the patterns of rankings given by the nurses to the statements they considered as important ethical responsibilities. The Chinese nurses were more virtue based in their perception of ethical responsibilities, the American nurses were more principle based, and the Japanese nurses were more care based. The findings indicate that the RRQ is a sensitive instrument for outlining the embedded sociocultural factors that influence nurses’ perceptions of ethical responsibilities in the realities of nursing practice. This study could be important in the fostering of partnerships in international nursing ethics. (shrink)

Critics of industrial animal agriculture have argued that its practices are cruel, inhumane, or otherwise degrading to animals. These arguments sometimes form the basis of a larger case for the complete abolition of animal agriculture, while others argue for more modest welfare-based reforms that allow for certain types of industrial farming. This paper defends industrial farming against the charge of cruelty. As upsetting as certain practices may seem, I argue that they need not be construed as cruel or inhumane. Any (...) link between industrial farming and cruelty or inhumanity is contingent on certain cultural, behavioral, and psychological facts that are person-dependent. For many people working in animal agriculture, these facts do not obtain. To be sure, industrial animal agriculture has real moral hazards that must be carefully avoided, but all that this shows is that working with animals is not for everyone. (shrink)

In a recent paper, Schaefer et al. proposed to enhance autonomy via improving reasoning abilities through cognitive enhancement [1]. While initially their idea additionally seems to elegantly avoid objections against genetic enhancements based on the value of autonomy, we want to draw attention to several problems their approach poses. First, we will show that it is not at all clear that safe and meaningful methods to genetically or pharmaceutically enhance cognition will be feasible any time soon. Second, we want to (...) provide a deeper discussion of the role of cognition and reasoning abilities in philosophical concepts of autonomy, as discussed in the mentioned paper. In doing so, we wish to demonstrate that using reasoning abilities as the common denominator in different accounts of autonomy in the context of enhancement does not do justice to the highly complex interrelations between cognition, reasoning abilities and autonomy. Neither should this way of arguing be accepted as a basis to call for practical outcomes, such as funding research into e. g. genetic cognitive enhancements, if the examined concepts of autonomy are taken seriously. (shrink)

Respect for personal autonomy in decision making is one of the four ethical principles in medical circumstances. This paper aims to present evidence that can be considered good exemplars in the clarification of the ethical viewpoints of the western and Shi’i Islamic perspectives on this issue. The method followed was originally a search in international indexing services in April 2016. Our findings point towards various controversies on individuals’ autonomy lead to different decision making outcomes by health workers in both different (...) traditions. We concluded that although Shi’i Islamic jurisprudence does not seem to allow for personal autonomy in the sense it is understood in a western context, evidence indicates that Shi’i Islamic jurisprudence respects personal autonomy. (shrink)

This essay concerns itself with the methodology of practical ethics. There are a variety of methods employed in ethics. Although none have been firmly established as dominant, it is generally agreed that casuistry, or the case-based method, is one important strategy commonly used for resolving ethical issues. Casuists compare the case under consideration to a relevantly similar precedent case in which judgements have already been made, and they use these earlier judgements to determine the proper resolution of the present case. (...) In this article, I try to provide a better understanding of the nature of contemporary casuistry. To accomplish this, I explain the basic features of casuistic reasoning. The second section focuses on the logic of casuistry. By assessing casuistic reasoning from the logical viewpoint, casuistry can be reconstructed as a logically correct method of reasoning. The third section looks at casuistry from the epistemic point of view and investigates the justificatory force of casuistic reasoning. Finally, in the fourth section, I show the usefulness of formal casuistry. (shrink)

A growing number of professional associations and occupational groups are creating codes of ethics with the goal of guiding their members, protecting service users, and safeguarding the reputation of the profession. There is a great deal of literature dealing with the question to what extent ethical codes can achieve their desired objectives. The present paper does not contribute to this debate. Its aim is rather to investigate how rational it is to comply with codes of conduct. It is natural and (...) virtually inevitable for a reflective person to ask why one should pay any attention to ethical codes, in particular if following a code is not in one’s own interest. In order to achieve the aim of this paper, I shall (in “Quasi-reasons for complying with an ethical code” section) discuss reasons that only appear to be reasons for complying with a code. In “Code-independent reasons” section, I shall present genuine practical reasons that, however, turn out to be reasons of the wrong kind. In “Code-dependent reasons” section finally presents the most important reasons for complying with ethical codes. The paper argues that while ethical codes do not necessarily yield reasons for action, professionals can have genuine reasons for complying with a code, which may, however, be rather weak and easily overridden by reasons for deviating from the code. (shrink)

The rapid advance of life science within the context of increased international concern over the potential misuse of findings has resulted in the lack of agreement on the issues of responsibility, control and collaboration. This progress of knowledge outpaces the efforts of creating moral and legal guidelines for the detection and minimization of the risks in the research process. There is a need to identify and address normative aspects of dual-use research. This paper focuses on the issues of safety and (...) global collaboration in life science research by highlighting the importance of openness, enabling policies and cooperative governance. These safeguards are believed to reduce the risks related to the misuse of science while enabling the important research to move forward. The paper addresses the need for a better definition of dual use concept and, based on the historical precedents, explores the moral concerns and governmental strategies of dual-use research. The three necessary moves in addressing the issue of security in life sciences are suggested: the move from constraining to enabling types of policies, the move from secrecy to openness, and the move from segregation to integration of the public voice. (shrink)

Providing proper protection of confidentiality, by preventing personal data from falling into the hands of third parties, is one of the core responsibilities of researchers towards research participants. However, even if researchers do their best in this regard, it does not guarantee that breaches of confidentiality will be avoided. This paper addresses the case of small qualitative studies, arguing that researchers cannot guarantee their informants’ confidentiality, since that confidentiality may be compromised by actions taken by the informants themselves. In order (...) to reduce the risk of this specific threat to confidentiality, additional precautions need to be taken. Some potential solutions to the problem are suggested and discussed. (shrink)

This paper describes the approach of empirical ethics, a form of ethics that integrates non-positivist ethnographic empirical research and philosophy. Empirical ethics as it is discussed here builds on the ‘empirical turn’ in epistemology. It radicalizes the relational approach that care ethics introduced to think about care between people by drawing in relations between people and technologies as things people relate to. Empirical ethics studies care practices by analysing their intra-normativity, or the ways of living together the actors within these (...) practices strive for or bring about as good practices. Different from care ethics, what care is and if it is good is not defined beforehand. A care practice may be contested by comparing it to alternative practices with different notions of good care. By contrasting practices as different ways of living together that are normatively oriented, suggestions for the best possible care may be argued for. Whether these suggestions will actually be put to practice is, however, again a relational question; new actors need to re-localize suggestions, to make them work in new practices and fit them in with local intra-normativities with their particular routines, material infrastructures, know-how and strivings. (shrink)

Empathy is a thing constantly asked for and stressed as a central skill and character trait of the good physician and nurse. To be a good doctor or a good nurse one needs to be empathic—one needs to be able to feel and understand the needs and wishes of patients in order to help them in the best possible way, in a medical, as well as in an ethical sense. The problem with most studies of empathy in medicine is that (...) empathy is poorly defined and tends to overlap with other related things, such as emotional contagion, sympathy, or a caring personality in general. It is far from clear how empathy fits into the general picture of medical ethics and the framework of norms that are most often stressed there, such as respect for autonomy and beneficience. How are we to look upon the role and importance of empathy in medical ethics? Is empathy an affective and/or cognitive phenomenon only, or does it carry moral significance in itself as a skill and/or virtue? How does empathy attain moral importance for medicine? In this paper I will attempt to show that a comparison with the Aristotelian concept of phronesis makes it easier to see what empathy is and how it fits into the general picture of medical ethics. I will argue that empathy is a basic condition and source of moral knowledge by being the feeling component of phronesis, and, by the same power, it is also a motivation for acting in a good way. (shrink)

Patient’s decision making competence is a widely discussed subject. Issues of competence, autonomy, well-being and protection of the patient come up every day. In this article we analyse what role PDMC plays in Dutch legislation and what dilemmas healthcare professionals may experience, notably in patients suffering from Korsakoff’s syndrome. Dilemmas emerge if professionals want to meet the requirements mentioned in Dutch law and the desires of their patients. The autonomy of the patient and the healthcare professionals’ duty to take care (...) of their patient’s best interests, create a tension and lead to uncomfortable situations. Healthcare professionals describe difficulty finding a balance between these issues and assessing the degree of mental competence still present. In long term care situations, quality of the relationship between healthcare professionals and their patients seems to be of much more importance in decision making on minor issues of competence than simply relying on legal or house rules. In being committed to their cases, professionals will be more sensitive to individuals habits, abilities, welfare and dignity, which will make it easier to decide on issues of competence, and to find creative solutions to their dilemmas. (shrink)

Virtue ethics has long provided fruitful resources for the study of issues in medical ethics. In particular, study of the moral virtues of the good doctor—like kindness, fairness and good judgement—have provided insights into the nature of medical professionalism and the ethical demands on the medical practitioner as a moral person. Today, a substantial literature exists exploring the virtues in medical practice and many commentators advocate an emphasis on the inculcation of the virtues of good medical practice in medical education (...) and throughout the medical career. However, until very recently, no empirical studies have attempted to investigate which virtues, in particular, medical doctors and medical students tend to have or not to have, nor how these virtues influence how they think about or practise medicine. The question of what virtuous medical practice is, is vast and, as we have written elsewhere, the question of how to study doctors’ moral character is fraught with difficulty. In this paper, we report the results of a first-of-a-kind study that attempted to explore these issues at three medical schools in the United Kingdom. We identify which character traits are important in the good doctor in the opinion of medical students and doctors and identify which virtues they say of themselves they possess and do not possess. Moreover, we identify how thinking about the virtues contributes to doctors’ and medical students’ thinking about common moral dilemmas in medicine. In ending, we remark on the implications for medical education. (shrink)

Conscience and conscientious objections are important issues in medical law and ethics. However, discussions tend to focus on a particular type of conscience-based claim. These types of claims are based upon predictable, generalizable rules in which an individual practitioner objects to what is otherwise standard medical treatment. However, not all conscience based claims are of this type. There are other claims which are based not on an objection to a treatment in general but in individual cases. In other words, these (...) cases may involve practices which the doctor does not usually object to but does so in this instance on these facts. This paper will explore these types of conscience-based claims in two ways. First, it will explore whether these types of individualised conscience-based claims are really conscience claims at all. Second, it will explore how these claims interact with the other sorts of judgements we expect doctors to make in these cases. (shrink)

This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer. 50 were invited to participate. 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees’ experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as ‘common sense’; the idea (...) of choice around the decision was negated and replaced by a moral imperative to be tested. Those who did not follow ‘common sense’ were judged to be imprudent. Family members who declined testing were discussed negatively by participants. The article addresses what is ethically problematic about how test decliners were discussed and whether these ethical concerns extend to others who are offered genetic testing. Discussions showed that genetic testing was viewed as both an autonomous choice and a responsibility. Yet the apparent conflict between the right to autonomy and the moral imperative of responsibility allowed participants to defend test decliners’ decisions by expressing a preference for or defending choice over responsibility. The ‘right not to know’ seemed an important moral construct to help ethically manage unpopular decisions made by close family who declined testing. In light of this research, the erosion of the ‘right not to know’ in the genomic age could have subtle yet profound consequences for family relationships. (shrink)

Gain-of-function research involves experimentation that aims or is expected to increase the transmissibility and/or virulence of pathogens. Such research, when conducted by responsible scientists, usually aims to improve understanding of disease causing agents, their interaction with human hosts, and/or their potential to cause pandemics. The ultimate objective of such research is to better inform public health and preparedness efforts and/or development of medical countermeasures. Despite these important potential benefits, GOF research can pose risks regarding biosecurity and biosafety. In 2014 the (...) administration of US President Barack Obama called for a “pause” on funding of GOF experiments involving influenza, SARS, and MERS viruses in particular. With announcement of this pause, the US Government launched a “deliberative process” regarding risks and benefits of GOFR to inform future funding decisions—and the US National Science Advisory Board for Biosecurity was tasked with making recommendations to the US Government on this matter. As part of this deliberative process the National Institutes of Health commissioned this Ethical Analysis White Paper, requesting that it provide review and summary of ethical literature on GOFR, identification and analysis of existing ethical and decision-making frameworks relevant to the evaluation of risks and benefits of GOFR, decision-making about the conduct of GOF studies, and the development of US policy regarding GOFR, and development of an ethical and decision-making framework that may be considered by NSABB when analyzing information provided by GOFR risk-benefit assessment, and when crafting its final recommendations. The ethical and decision-making framework ultimately developed is based on the idea that there are numerous ethically relevant dimensions upon which any given case of GOFR can fare better or worse : research imperative, proportionality, minimization of risks, manageability of risks, justice, good governance, evidence, and international outlook and engagement. Rather than drawing a sharp bright line between GOFR studies that are ethically acceptable and those that are ethically unacceptable, this framework is designed to indicate where any given study would fall on an ethical spectrum—where imaginable cases of GOFR might range from those that are most ethically acceptable, at one end of the spectrum, to those that are most ethically problematic or unacceptable, at the other. The aim should be that any GOFR pursued should be as far as possible towards the former end of the spectrum. (shrink)

When clinical ethics committee members discuss a complex ethical dilemma, what use do they have for normative ethical theories? Members without training in ethical theory may still contribute to a pointed and nuanced analysis. Nonetheless, the knowledge and use of ethical theories can play four important roles: aiding in the initial awareness and identification of the moral challenges, assisting in the analysis and argumentation, contributing to a sound process and dialogue, and inspiring an attitude of reflexivity. These four roles of (...) ethical theory in clinical ethics consultation are described and their significance highlighted, while an example case is used as an illustration throughout. (shrink)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity (...) is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

One of the key learning objectives in any health professional course is to develop ethical and judicious practice. Therefore, it is important to address how medical and pharmacy students respond to, and deal with, ethical dilemmas in their clinical environments. In this paper, we examined how students communicated their resolution of ethical dilemmas and the alignment between these communications and the four principles developed by Beauchamp and Childress. Three hundred and fifty-seven pharmacy and medical students (overall response rate=63%) completed a (...) questionnaire containing four clinical case scenarios with an ethical dilemma. Data were analysed using multiple methods. The findings revealed that 73% of the qualitative responses could be exclusively coded to one of the ‘four principles’ determined by the Beauchamp and Childress' framework. Additionally, 14% of responses overlapped between the four principles (multiple codes) and 13% of responses could not be coded using the framework. The subsequent subgroup analysis revealed different response patterns depending on the case being reviewed. The findings showed that when students are faced with challenging ethical dilemmas their responses can be aligned with the Beauchamp and Childress framework, although more contentious dilemmas involving issues of law are less easily categorised. The differences between year and discipline groups show students are developing ethical frames of reference that may be linked with their teaching environments and their levels of understanding. Analysis of these response patterns provides insight into the way students will likely respond in ‘real’ settings and this information may help educators prepare students for these clinical ethical dilemmas. (shrink)

The U.S. health care system is ostensibly market based and therefore at least partially reliant on competition and consumer demand to regulate costs. Yet information about an essential feature of market transactions—costs—is typically obscure to patients until long after treatment. When discussing what must be disclosed for informed consent, the same list of required information is often mentioned regardless of the health care system in question, and information about costs rarely merits a place within this list. However, our assumptions about (...) what a moral principle requires need to be responsive to the realities of the health care system in which the principle is applied.This paper explores the moral foundations of disclosure and informed consent to argue that, in a market‐based system of the sort found in the United States, these same considerations support a requirement to disclose out‐of‐pocket costs before patients receive care. Next, I consider two objections to this view: first, that health care practitioners should focus solely on medical considerations in their encounters with patients and, second, that disclosing out‐of‐pocket costs would be too difficult to be mandated. I argue that medical and financial interests are inseparable within the U.S. health care system. If the difficulties in disclosing costs are deemed insurmountable, then the current system may prove unsustainable, both morally and financially, since we face the same practical impediments to implementing any meaningful consumer‐driven, market‐based health care reform. Finally, I explore some of the consequences of failing to disclose costs. The requirements of disclosing costs can be supported by the principle of respect for autonomy, regardless of the consequences, but in light of the consequences of the decision of whether to disclose, a concern about justice provides further support. (shrink)

Brain–computer interfacing technologies are used as assistive technologies for patients as well as healthy subjects to control devices solely by brain activity. Yet the risks associated with the misuse of these technologies remain largely unexplored. Recent findings have shown that BCIs are potentially vulnerable to cybercriminality. This opens the prospect of “neurocrime”: extending the range of computer-crime to neural devices. This paper explores a type of neurocrime that we call brain-hacking as it aims at the illicit access to and manipulation (...) of neural information and computation. As neural computation underlies cognition, behavior and our self-determination as persons, a careful analysis of the emerging risks of malicious brain-hacking is paramount, and ethical safeguards against these risks should be considered early in design and regulation. This contribution is aimed at raising awareness of the emerging risk of malicious brain-hacking and takes a first step in developing an ethical and legal reflection on those risks. (shrink)

This paper argues for the superiority of natural law theory over consent -based approaches to sexual morality. I begin by criticizing the “consenting adults” sexual ethic that is dominant in contemporary Western culture. I then argue that natural law theory provides a better account of sexual morality. In particular, I will defend the “perverted faculty argument”, according to which it is immoral to use one’s bodily faculties contrary to their proper end.

In the field of health technology assessment, there are several approaches that can be used for ethical analysis. However, there is a scarcity of literature that critically evaluates and compares the strength and weaknesses of these approaches when they are applied in practice. In this paper, we analyse the applicability of some selected approaches for addressing ethical issues in HTA in the field of complex health interventions. Complex health interventions have been the focus of methodological attention in HTA. However, the (...) potential methodological challenges for ethical analysis are as yet unknown.Six of the most frequently described and applied ethical approaches in HTA were critically assessed against a set of five characteristics of complex health interventions: multiple and changing perspectives, indeterminate phenomena, uncertain causality, unpredictable outcomes, and ethical complexity. The assessments are based on literature and the authors’ experiences of developing, applying and assessing the approaches.The Interactive, participatory HTA approach is by its nature and flexibility, applicable across most complexity characteristics. Wide Reflective Equilibrium is also flexible and its openness to different perspectives makes it better suited for complex health interventions than more rigid conventional approaches, such as Principlism and Casuistry. Approaches developed for HTA purposes are fairly applicable for complex health interventions, which one could expect because they include various ethical perspectives, such as the HTA Core Model® and the Socratic approach.This study shows how the applicability for addressing ethical issues in HTA of complex health interventions differs between the selected ethical approaches. Knowledge about these differences may be helpful when choosing and applying an approach for ethical analyses in HTA. We believe that the study contributes to increasing awareness and interest of the ethical aspects of complex health interventions in general. (shrink)

Making decisions is an important component of everyday living, and issues surrounding autonomy and self-determination are crucial for persons with intellectual disabilities. Adults with intellectual disabilities are characterized by the limitations in their intellectual functioning and in their adaptive behavior, which compromises three skill types, and this starts before the age of 18. Though persons with intellectual disabilities are characterized by having these limitations, they are thought to face significant decisionmaking challenges due to their disability. Moving away from this generalization, (...) Article 12 of the United Nations Convention on the Rights of Persons with Disabilities addresses this issue of decision-making for persons with disabilities, recognizing the right to legal capacity. (shrink)

Until the mid-20th century, biomedical research centered on the study of specific diseases, concerned with short periods of time and small groups of living research participants. However, the growth of longitudinal population studies and long-term biobanking now forces the research community to examine the possibility of the death of their research participants.The death of a research participant raises numerous ethical and legal issues, including the return of deceased individuals’ research results to related family members. As with the return of individual (...) research results for living research participants, the question of the obligation to return a deceased person’s research results to family members has yet to be settled. This question is particularly acute in the context of genetic research since the research results from one individual may have health implications for all biological relatives. (shrink)

Research drawn from data contained in medical records is a common and immensely important means of scientific investigation in epidemiology and health services research. It provides valuable knowledge regarding risk factors for disease, the safety of pharmaceuticals and medical procedures, and the quality of medical care. Electronic information technology has greatly enhanced the capability of conducting research using medical records, but it has also generated increasing concern about invasions of privacy. Both practical and scientific considerations militate against soliciting consent for (...) population-based observational research. Retrospective review of existing medical records, especially with large samples, poses insuperable barriers to locating human subjects in order to obtain their informed consent. When efforts are made to obtain informed consent for prospective research drawn from disease and treatment registries, mounting evidence has accumulated that substantial selection biases are introduced into the data, as those who consent are not necessarily representative of the population of relevant patients. (shrink)

Interest in the ethics of research on human subjects, stimulated by atrocious human experimentation during WWII and the resultant Nuremberg Code, has been sustained by examples of unethical research in many countries and by proliferation of codes and guidelines. Such interest has intensified in recent years in association with expanding international collaborative research endeavors. The ongoing controversy in international research ethics takes place at two levels. At the practical level it is about the competing concerns of those predominantly interested in (...) doing research to advance knowledge and those who, while supporting the need for research, are more acutely aware of the potential to exploit vulnerable participants, especially in developing countries. At the level of theory the controversy pits ethical universalism against moral relativism.In her recent review of agreements and controversies in international research ethics, Ruth Macklin has concluded that, despite seeming agreement on several issues, many different viewpoints persist. In her view it is unlikely that these will be resolved easily. (shrink)

In a familiar moral dilemma faced by physicians who care for the dying, some patients who are within days or hours of death may experience suffering in a degree that cannot be relieved by ordinary levels of analgesia. In such cases, it may sometimes be possible to honor a competent patient's request for pain relief only by giving an injection of narcotics in a dosage so large that the patient's death is thereby hastened. Doctors rightly worry that taking an action (...) likely to result in a patient's death may violate the Hippocratic injunction against the direct killing of anyone in their care. (shrink)

This article contributes to the development of a professional responsibility theory of public relations ethics. Toward that end, we examine the roles of a public relations practitioner as a professional, an institutional advocate, and the public conscience of institutions served. In the article, we review previously suggested theories of public relations ethics and propose a new theory based on the public relations professional's dual obligations to serve client organizations and the public interest.

During the past ten years Integrative Social Contracts Theory (ISCT) has become part of the repertoire of specialized decision-oriented theories in the business ethics literature. The intention here is to (1)␣provide a brief overview of the structure and strengths of ISCT; (2) identify recurring themes in the extensive commentary on the theory including brief mention of how ISCT has been applied outside the business ethics literature; (3) describe where research appears to be headed; and (4) specify challenges faced by those (...) who seek to reform ISCT. Key themes in the critiquing literature relate to (a) the identification process for hypernorms; (b) justification of the recognition of hypernorms; (c) proposals for considering meso or meta norms; (d)␣clarification of the relationship between stakeholder concepts and ISCT; (e) problems with potentially unoccupied moral free space; (f) sources of ethical obligation within the ISCT framework; and (g) the potential role for concepts of stakeholder dialogue and engagement. (shrink)

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

In a recent paper, Levy, Gadd, Kerridge, and Komesaroff attempt to defend the ethicality of homeopathy by attacking the utilitarian ethical framework as a basis for medical ethics and by introducing a distinction between evidence-based medicine and modern science. This paper demonstrates that their argumentation is not only insufficient to achieve that goal but also incorrect. Utilitarianism is not required to show that homeopathic practice is unethical; indeed, any normative basis of medical ethics will make it unethical, as a defence (...) of homeopathic practice requires the rejection of modern natural sciences, which are an integral part of medical ethics systems. This paper also points out that evidence-based medicine lies at the very core of modern science. Particular arguments made by Levy et al. within the principlist medical ethics normative system are also shown to be wrong. (shrink)

This article develops a eudaimonistic account of professional virtue. Using the case of teaching, the article argues that professional virtue requires that role holders care about the ends of their work. Care is understood in terms of an investment of the self. Virtuous role holders are invested in their practice in a way that makes professional excellence part of their own good. Failure to care about the ends of professional practice reveals a lack of appreciation of the value of professional (...) work. This ‘investment view’ is contrasted with the currently popular ‘key goods view’, which claims that professional virtues require a profession-specific teleological structure. Unlike ordinary virtues, which are governed by eudaimonia or human flourishing, professional virtues are allegedly derived from professional ends, like health or education. The article argues that this delivers an unconvincing criterion for determining the merits of character traits. (shrink)

Decisions about long-term ventilation in children can be clinically contentious and ethically challenging. In this article, the relevant legal, professional and moral principles inherent in such cases are explored. We commend the central importance of deliberation in the assessment of best interests, and propose a practical framework to assist the parent–clinical team to reach decisions in as transparent and equitable a manner as possible.

In an earlier paper, I defended the moral permissibility of eating meat against sentience-based arguments for moral vegetarianism. The crux of my argument was that sentience is not an intrinsically morally salient property, and that animals lack moral status because they lack a root capacity for rational agency. Accordingly, it is morally permissible to consume meat even if doing so is not strictly necessary for our nutrition. This paper responds to critiques of my argument by Bruers :705–717, 2015) and Erdös. (...) I then show that their criticisms are easily dispatched and therefore fail to undermine my defense of meat consumption. (shrink)

Implantable brain–computer interface technology is an expanding area of engineering research now moving into clinical application. Ensuring meaningful informed consent in implantable BCI research is an ethical imperative. The emerging and rapidly evolving nature of implantable BCI research makes identification of risks, a critical component of informed consent, a challenge. In this paper, 6 core risk domains relevant to implantable BCI research are identified—short and long term safety, cognitive and communicative impairment, inappropriate expectations, involuntariness, affective impairment, and privacy and security. (...) Work in deep brain stimulation provides a useful starting point for understanding this core set of risks in implantable BCI. Three further risk domains—risks pertaining to identity, agency, and stigma—are identified. These risks are not typically part of formalized consent processes. It is important as informed consent practices are further developed for implantable BCI research that attention be paid not just to disclosing core research risks but exploring the meaning of BCI research with potential participants. (shrink)

Liberal proponents of genetic engineering maintain that developing human germline modification technologies is morally desirable because it will result in a net improvement in human health and well-being. Skeptics of germline modification, in contrast, fear evolutionary harms that could flow from intervening in the human germline, and worry that such programs, even if well intentioned, could lead to a recapitulation of the scientifically and morally discredited projects of the old eugenics. Some bioconservatives have appealed as well to the value of (...) retaining our “given” human biological nature as a reason for restraining the development and use of human genetic modification technologies even where they would tend to increase well-being. In this article, I argue that germline intervention will be necessary merely to sustain the levels of genetic health that we presently enjoy for future generations—a goal that should appeal to bioliberals and bioconservatives alike. This is due to the population-genetic consequences of relaxed selection pressures in human populations caused by the increasing efficacy and availability of conventional medicine. This heterodox conclusion, which I present as a problem of intergenerational justice, has been overlooked in medicine and bioethics due to certain misconceptions about human evolution, which I attempt to rectify, as well as the sordid history of Darwinian approaches to medicine and social policy, which I distinguish from the present argument. (shrink)

BackgroundPatient autonomy is a fundamental, yet challenging, principle of professional medical ethics. The idea that individual patients should have the freedom to make choices about their lives, including medical matters, has become increasingly prominent in current literature. However, this has not always been the case, especially in communist countries where paternalistic attitudes have been interwoven into all relationships including medical ones. Patients’ expectations and the role of the doctor in the patient-physician relationship are changing. Croatia, as a transitional country, is (...) currently undergoing this particular process.MethodsQualitative research was conducted by means of six focus group discussions held in the years 2012 and 2013 in Croatia. Focus groups were held separately with each of the following: first year and final year medical students, physicians engaged in medical ethics education, physicians practicing in a clinical hospital, family medicine residents and individuals representing patients with chronic disease. This research specifically addresses issues related to patient autonomy, in particular, the principles of truth telling, confidentiality, and informed consent. All focus group discussions were audio taped and then transcribed verbatim and systematized according to acknowledged qualitative analysis methods.Results and discussionPatient autonomy is much more than a simple notion defined as the patient’s right to make treatment decisions independently. It has to be understood in context of the broader socio-cultural setting. At present, both patients and medical doctors in Croatia are increasingly appreciating the importance of promoting the principle of autonomy in medical decision-making. However, the current views of medical students, physicians and patients reveal inconsistencies.Conclusions Knowing how to respect the various facets of patients’ autonomy should be part of physician’s professional duties, and also be reflected in his or her core clinical competencies. For this reason greater importance should be dedicated to patient autonomy issues in medical education in Croatia. (shrink)

The aim of this paper is to provide a conceptual framework that will help in understanding and evaluating, along social and ethical lines, the issue of killing day-old male chicks and two alternative directions of responsible innovations to solve this issue. The following research questions are addressed: Why is the killing of day-old chicks morally problematic? Are the proposed alternatives morally sound? To what extent do the alternatives lead to responsible innovation? The conceptual framework demonstrates clearly that there is a (...) moral “lock-in”, and why the killing of day-old chicks is indeed an issue. Furthermore, it is shown that both alternative directions address some important objections with regard to the killing of day-old chicks, but that they also raise new dilemmas. It also becomes clear that the framework enables and secures anticipation, reflection, deliberation with and responsiveness to stakeholders, the four dimensions of responsible innovation, in a structured way. (shrink)