The past few years has seen a resurgence in the public interest in space flight and travel. Spurred mainly by the likes of technology billionaires like Elon Musk and Jeff Bezos, the topic poses both unique scientific as well as ethical challenges. This paper looks at the concept of generation ships, conceptual behemoth ships whose goal is to bring a group of human settlers to distant exoplanets. These ships are designed to host multiple generations of people who will be born, (...) live, and die on these ships long before it reaches its destination. This paper takes reproductive ethics as its lens to look at how genetic enhancement interventions can and should be used not only to ensure that future generations of offspring on the ships, and eventual exoplanet colonies, live a minimally good life but that their births are contingent on them living genuinely good and fulfilling lives. The paper makes the further claim that if such a thesis holds, it also does so for human enhancement on Earth. (shrink)

It is widely assumed that the use of deception in research is always inconsistent with obtaining valid consent. In addition, guidelines and regulations permit research without valid consent only when it poses no greater than minimal risk. Current practice thus prohibits studies that use deception and pose greater than minimal risk, including studies that rely on deceptive methods to evaluate experimental treatments. To assess whether these prohibitions are justified, the present paper evaluates five arguments that might be thought to support (...) the assumption that deception is always inconsistent with valid consent. Analysis of these arguments reveals that deception is frequently, but not always, inconsistent with obtaining valid consent for research. This conclusion suggests that, in order to avoid unnecessarily blocking valuable research, current policies and practice should be revised to recognize the conditions under which the use of deception can be consistent with obtaining research participants’ valid consent. (shrink)

What proper role should considerations of risk, particularly to research subjects, play when it comes to conducting research on human enhancement in the military context? We introduce the currently visible military enhancement techniques (1) and the standard discussion of risk for these (2), in particular what we refer to as the ‘Assumption’, which states that the demands for risk-avoidance are higher for enhancement than for therapy. We challenge the Assumption through the introduction of three categories of enhancements (3): therapeutic, preventive, (...) and pure enhancements. This demands a revision of the Assumption (4), alongside which we propose some further general principles bearing on how to balance risks and benefits in the context of military enhancement research. We identify a particular type of therapeutic enhancements as providing a more responsible path to human trials of the relevant interventions than pure enhancement applications. Finally, we discuss some possible objections to our line of thought (5). While acknowledging their potential insights, we ultimately find them to be unpersuasive, at least provided that our proposal is understood as fully non-coercive towards the candidates for such therapeutic enhancement trials. (shrink)

In _Pharmaceutical Freedom_ Professor Flanigan argues we ought to grant people self-medication rights for the same reasons we respect people’s right to give (or refuse to give) informed consent to treatment. Despite being the most comprehensive argument in favour of self-medication written to date, Flanigan’s _Pharmaceutical Freedom_ leaves a number of questions unanswered, making it unclear how the safe-guards Flanigan incorporates to protect people from harming themselves would work in practice. In this paper, I extend Professor Flanigan’s account by discussing (...) a hypothetical case to illustrate how these safe-guards could work together to protect people from harms caused by their own ignorance or incompetence. (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)

When are we morally obligated as a society to help the homeless, and is coercive interference justified when help is not asked for, even refused? To answer this question, we propose a comprehensive taxonomy of different types of homelessness and argue that different levels of autonomy allow for interventions with varying degrees of pressure to accept help. There are only two categories, however, where paternalism proper is allowed, be it heavily qualified. The first case is the homeless person with severely (...) diminished autonomy as a result of mental illness, and the second case is the homeless person who runs a risk of serious and imminent harm to self. In the first case, namely, that of soft paternalism, we argue that coercive intervention in the case of a refusal to accept help should be focused on the provision of housing that meets basic needs—needs that we outline in the article. In the case of imminent and severe harm to self, the case of hard paternalism, we argue that forced intervention can only be allowed if it is temporary and local, namely focused on getting someone out of harm’s way. (shrink)

In light of the variety of uses of the term autonomy in recent bioethics literature, in this paper, I suggest that competence, not being as contested, is better placed to play the anti-paternalistic role currently assigned to autonomy. The demonstration of competence, I will argue, can provide individuals with robust spheres of non-interference in which they can pursue their lives in accordance with their own values. This protection from paternalism is achieved by granting individuals rights to non-interference upon demonstration of (...) competence. In this paper, I present a risk-sensitive account of competence as a means of grounding rights to non-interference. On a risk-sensitive account of competence individuals demonstrate their competence by exercising three capacities to the extent necessary to meet a threshold determined by the riskiness of the decision. These three capacities are the capacity to acquire knowledge, use instrumental rationality, and form and revise a life plan. (shrink)

The notion of respect for autonomy dominates bioethical discussion, though what qualifies precisely as autonomous action is notoriously elusive. In recent decades, the notion of autonomy in medical contexts has often been defined in opposition to the notion of autonomy favoured by theoretical philosophers. Where many contemporary theoretical accounts of autonomy place emphasis on a condition of “authenticity”, the special relation a desire must have to the self, bioethicists often regard such a focus as irrelevant to the concerns of medical (...) ethics, and too stringent for use in practical contexts. I argue, however, that the very condition of authenticity that forms a focus in theoretical philosophy is also essential to autonomy and competence in medical ethics. After tracing the contours of contemporary authenticity-based theories of autonomy, I consider and respond to objections against the incorporation of a notion of authenticity into accounts of autonomy designed for use in medical contexts. By looking at the typical problems that arise when making judgments concerning autonomy or competence in a medical setting, I reveal the need for a condition of authenticity—as a means of protecting choices, particularly high-stakes choices, from being restricted or overridden on the basis of intersubjective disagreement. I then turn to the treatment of false and contestable beliefs, arguing that it is only through reference to authenticity that we can make important distinctions in this domain. Finally, I consider a potential problem with my proposed approach; its ability to deal with anorexic and depressive desires. (shrink)

The idea of a patient's best interests raises issues in prudential value theory–the study of what makes up an individual's ultimate (nonmoral) good or well‐being. While this connection may strike a philosopher as obvious, the literature on the best interests standard reveals almost no engagement of recent work in value theory. There seems to be a growing sentiment among bioethicists that their work is independent of philosophical theorizing. Is this sentiment wrong in the present case? Does value theory make a (...) significant difference in interpreting best interests? In pursuing this question, I begin with a quick sketch of broad kinds of value theories, identifying representatives that are plausible enough to count as contenders. I then explore what each account suggests in (1) neonatal treatment decisions, and (2) decisions for patients in persistent vegetative states. I conclude that while these accounts converge somewhat in their interpretations of best interests, they also have importantly different implications. (shrink)

Government food and beverage policies can play an important role in promoting public health. Few people would question this assumption. Difficult questions can arise, however, when policymakers, public health officials, citizens, and businesses deliberate about food and beverage policies, because competing values may be at stake, such as public health, individual autonomy, personal responsibility, economic prosperity, and fairness. An ethically justified policy strikes a reasonable among competing values by meeting the following criteria: the policy serves important social goal; the policy (...) is likely to be effective at achieving those goal; less burdensome options are not likely to be effective at achieving the goals; the policy is fair. (shrink)

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I (...) present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

In the literature three mechanisms are commonly distinguished to make decisions about the care of incompetent patients: A living will, a substituted judgment by a surrogate (who may or may not hold the power of attorney ), and a best interest judgment. Almost universally, the third mechanism is deemed the worst possible of the three, to be invoked only when the former two are unavailable. In this article, I argue in favor of best interest judgments. The evermore common aversion of (...) best interest judgments entails a risk that health care providers withdraw from the decision-making process, abandoning patients (or their family members) to these most difficult of decisions about life and death. My approach in this article is primarily negative, that is, I criticize the alleged superiority of the living will and substituted judgment. The latter two mechanisms gain their alleged superiority because they are supposedly morally neutral, whereas the best interest judgment entails a value judgment on behalf of the patient. I argue that on closer inspection living wills and substituted judgments are not morally neutral; indeed, they generally rely on best interest judgments, even if those are not made explicit. (shrink)

With the waves of reform occurring in mental health legislation in England and other jurisdictions, mental capacity is set to become a key medico-legal concept. The concept is central to the law of informed consent and is closely aligned to the philosophical concept of autonomy. It is also closely related to mental disorder. This paper explores the interdisciplinary terrain where mental capacity is located. Our aim is to identify core dilemmas and to suggest pathways for future interdisciplinary research. The terrain (...) can be separated into three types of discussion: philosophical, legal and psychiatric. Each discussion approaches mental capacity and judgmental autonomy from a different perspective yet each discussion struggles over two key dilemmas: whether mental capacity and autonomy is/should be a moral or a psychological notion and whether rationality is the key constitutive factor. We suggest that further theoretical work will have to be interdisciplinary and that this work offers an opportunity for the law to enrich its interpretation of mental capacity, for psychiatry to clarify the normative elements latent in its concepts and for philosophy to advance understanding of autonomy through the study of decisional dysfunction. The new pressures on medical and legal practice to be more explicit about mental capacity make this work a priority. (shrink)

Für viele liberale Denker fällt die religiöse Erziehung der eigenen Kinder unter die Erziehungsautorität der Eltern. Das heißt, dass die Eltern für ihre Kinder entscheiden sollen, ob Letztere religiös erzogen werden und welche Religion hierbei unter Umständen zugrunde liegen soll. In diesem Aufsatz wird ein Argument von Matthew Clayton kritisch diskutiert, das dieses traditionell liberale Verständnis der Erziehungsautorität infrage stellt. Clayton geht von Rawls‘ Rechtfertigungsmodell legitimer Autorität aus, nach dem staatliche Autorität durch öffentlich zugängliche Gründe zu rechtfertigen ist. Clayton wendet (...) dieses sogenannte Prinzip der Legitimität auf den Bereich der Familie an, woraus für ihn folgt, dass die religiöse Erziehung von Kindern auf einer illegitimen Ausübung von Autorität beruht, wenn Eltern ihre Kinder so beeinflussen wollen, dass diese die von ihnen bevorzugten religiösen Überzeugungen annehmen. Für Clayton muss die legitime Ausübung der Erziehungsautorität der Eltern auf die zukünftige Zustimmung, seinen retrospektiven „consent“, Bezug nehmen. Am Ende des Aufsatzes wird – unter Berücksichtigung von Clayton-Kritikern – untersucht, ob es Formen religiöser Erziehung gibt, die vereinbar sind mit dem Prinzip der Legitimität. (shrink)

This contribution sets out to criticize the prominent metaphor of “death while alive” in the context of dementia. We first explain the historical origin and development as well as the philosophical premises of the image. We then take a closer look at its implications for understanding dementia and societal attitudes and behaviours towards those affected. In doing so, we adopt a life course perspective that seeks to account for the ethical significance of the temporal extension and structure of human life. (...) According to this perspective, individual existence in time is characterized by normative standards of age-appropriate behavior, evaluative standards of a good life, and teleological notions of successful development which require theoretical analysis and ethical discussion. Such a perspective can contribute significantly to spelling out the implications of the metaphor of death while alive and to criticizing their problematic aspects. Indeed, it makes clear that this metaphor aligns dementia with a different point in the human life course, thus ultimately framing it as a kind of deviation from the biographical norm, a disruption in an assumed temporal order of existence. At the same time, the life course perspective can help to understand why this conception involves ethically problematic distortions and blind spots. The resulting considerations allow conclusions with regard to medical and care ethical debates about self-determination, surrogate decision making, and advance directives in the context of dementia. Furthermore, on a theoretical-conceptual level, they also illustrate the importance of a biography- and culture-sensitive approach to philosophical and ethical reasoning in biomedicine and the life sciences. (shrink)

Two practical measures that have been introduced in an effort to stop sports parents from behaving badly will be critically discussed. The first measure is known under the slogan quiet weekends'. These prohibit parents from attending games in which their child is participating. Although this strategy calls attention to an important issue, it is unfair. The second, and far more elaborate, measure is to have a set of ethical guidelines informing parents how they should behave towards their child and others (...) in the context of sport. Two central values tend to run through these guidelines: namely parental concern for the child's autonomy and parental concern for the child's well-being. These values are discussed as I apply them to cases in what can be called a grey area, where it is not obvious what is morally right or wrong. In the concluding discussion a tentative checklist will be presented which good sports parents can use when they are confronted with ethical issues. (shrink)

A growing number of bioethics papers endorse the harm threshold when judging whether to override parental decisions. Among other claims, these papers argue that the harm threshold is easily understood by lay and professional audiences and correctly conforms to societal expectations of parents in regard to their children. English law contains a harm threshold which mediates the use of the best interests test in cases where a child may be removed from her parents. Using Diekema9s seminal paper as an example, (...) this paper explores the proposed workings of the harm threshold. I use examples from the practical use of the harm threshold in English law to argue that the harm threshold is an inadequate answer to the indeterminacy of the best interests test. I detail two criticisms: First, the harm standard has evaluative overtones and judges are loath to employ it where parental behaviour is misguided but they wish to treat parents sympathetically. Thus, by focusing only on ‘substandard’ parenting, harm is problematic where the parental attempts to benefit their child are misguided or wrong, such as in disputes about withdrawal of medical treatment. Second, when harm is used in genuine dilemmas, court judgments offer different answers to similar cases. This level of indeterminacy suggests that, in practice, the operation of the harm threshold would be indistinguishable from best interests. Since indeterminacy appears to be the greatest problem in elucidating what is best, bioethicists should concentrate on discovering the values that inform best interests. (shrink)

Health care decision making has changed profoundly during the past several decades. Advances in scientific knowledge, technology, and professional skill enable medical providers to extend and enhance life by increasing the ability to cure disease, manage disability, and palliate suffering. Ironically, the same interventions can prolong painful existence and protract the dying process. Recognizing that medical interventions, especially lifesustaining measures, are not always medically appropriate or even desired by a patient or family, health care professionals endeavor to determine who should (...) make health care decisions and according to what standards. The importance that Western culture places on individual rights and self-determination is reflected in the growing advocacy for patient autonomy and the discrediting of physician paternalism. However, the question of autonomy becomes more complex when patients lack the capacity to decide for themselves.Advance directives represent one response to the dilemma of decision making for incapacitated patients. The original advance directive, the living will, is a written list of instructions reflecting the individual's wishes about care, usually at the end of life. (shrink)

Patients who are incompetent need a surrogate decision maker to make treatment decisons on their behalf. One of the main ethical questions that arise in this context is what standard ought to govern such decision making. According to the Substituted Judgment Standard, a surrogate ought to make the decision that the patient would have made, had he or she been competent. Although this standard has sometimes been criticized on the grounds of being difficult to apply, it has found wide appeal, (...) since it it is alleged to protect incompetent patients? right to autonomy. The main purpose of the thesis is to evaluate SJS, from a conceptual and ethical perspective. It argues that the traditional formulation of SJS is seriously incomplete, and discusses alternative ways of completing it. Moreover, it questions the received view on how SJS should be morally justified, by offering arguments against the view that decision making in accordance with this standard extends the patient's opportunities for self-determination. Instead it suggests a virtue-ethical approach according to which the moral point of SJS-based decision making is not to protect the patient's interests, but to express respect for person. The thesis also critically assesses empirical studies according to which surrogates often fail to correctly predict patients? actual treatment preferences. It is shown that such results cannot, for a number of reasons, support the conclusion drawn that surrogates are ill-equipped to make decisions that comply with SJS. (shrink)

The national standards for clinical ethics consultation set forth by the American Society for Bioethics and Humanities endorse an “ethics facilitation” approach, which characterizes the role of the ethicist as one skilled at facilitating consensus within the range of ethically acceptable options. To determine the range of ethically acceptable options, ASBH recommends the standard model of decision-making, which is grounded in the values of autonomy, beneficence, nonmaleficence, and justice. H. Tristram Engelhardt Jr. has sharply criticized the standard model for presuming (...) contentful moral claims in circumscribing the range of ethically acceptable options, which, he argues, cannot be rationally justified in a pluralistic context. Engelhardt’s solution is a secular clinical ethics based on a contentless principle of permission. The first part of this article lays out Engelhardt’s negative claim, that reason cannot establish contentful moral claims, and his positive claim, that secular clinical ethics ought to be based on a contentless principle of permission. The second part critiques these negative and positive claims. The purpose of this paper is to defend secular clinical ethics expertise—defined as the ability of ethicists to offer justified moral recommendations grounded in consensus positions endorsed by the American Society for Bioethics and Humanities—from the radical critiques of Engelhardt, who argues that no moral or metaphysical claims, and hence no bioethical consensus, can be rationally justified. Engelhardt’s critiques have caused some to worry that secular clinical ethics is in a state of theoretical crisis; this article concludes that Engelhardt’s view is an unstable basis for that worry. (shrink)

This book sheds light on various ethical challenges military and humanitarian health care personnel face while working in adverse conditions. Contexts of armed conflict, hybrid wars or other forms of violence short of war, as well as natural disasters, all have in common that ordinary circumstances can no longer be taken for granted. Hence, the provision of health care has to adapt, for example, to a different level of risk, to scarce resources, or uncommon approaches due to external incentives or (...) requirements. This affects the practice of health care as well as its ethics. This book offers a panoramic overview on various challenges healthcare faces in extraordinary situations and provides new insights from practitioners’ as well as from academic scholars’ perspectives. (shrink)

After describing the disorder of psychopathy, I examine the theories and the evidence concerning the psychopaths’ deficient moral capacities. I first examine whether or not psychopaths can pass tests of moral knowledge. Most of the evidence suggests that they can. If there is a lack of moral understanding, then it has to be due to an incapacity that affects not their declarative knowledge of moral norms, but their deeper understanding of them. I then examine two suggestions: it is their deficient (...) practical reason or their stunted emotions that are at fault. The evidence supports both explanations. I conclude with an overview of the debate concerning whether they are morally or legally responsible for their actions. (shrink)

Carson and Flood (2017) present an interesting argument regarding a duty to vaccinate as a social obligation. Their argument is based on Catholic social teaching, and particularly on the moral prec...

Allen Buchanan and Daniel Brock, in a widely influential account, Deciding for Others (1990), advocate a sliding scale approach to the determination of whether a patient is competent to make a decision regarding his/her health care. An analysis of two critiques of their position (Beauchamp and Childress (1994), Wicclair (1991 a,b)) reveals a tacit presumption by all of these authors that the greater cognitive challenge often posed by high risk therapies constitutes grounds for an elevated standard of competence. This presumption (...) cannot be consistently maintained in cases where the patient's decision involves experimental therapies. It implies either that informed consent can never take place in such situations, or, perhaps even more counter-intuitively, that a lower standard of competency should be used than when the patient is asked to choose only among standard therapies. (shrink)

Quality improvement mechanisms increasingly use outcome measures to evaluate health care providers. This move toward outcome measures is a radical departure from the traditional focus on process measures. More radical still is the proposal to shift from relatively simple and proximal measures of outcome, such as mortality, to complex outcomes, such as quality of life. While the practical, scientific, and ethical issues associated with the use of outcomes such as mortality and morbidity to compare health care providers have been well (...) rehearsed, the specific concerns associated with the use of quality of life measures in quality of care research have received little attention. As with much research on quality of life there is a tendency to assume that the disadvantages are outweighed by the general virtue of “listening” to patients. In this paper we disagree with this assumption and argue that quality of life is a process, not an outcome. (shrink)

The prescription of practice guidelines for consent in neonatal care that are appropriate for all interventions faces substantial problems. Current practice varies widely. Consent in neonatal care is compromised by postnatal constraints on information sharing and decision-making. Empirical research shows marked individual and cultural variation in the degree to which parents want to contribute to decision-making on behalf of their infants. Conflict between the parents’ wishes and the infant’s best interests could arise if consent for a recommended intervention were refused, (...) and parental refusal of consent may have to be overridden. Consent to an appropriate package of care (such as special, intensive or palliative care) may be morally preferable to a universal requirement to seek consent for all individual interventions entailed by that package. (shrink)

This paper discusses the use of deep brain stimulation for the treatment of neurological and psychiatric disorders in children. At present, deep brain stimulation is used to treat movement disorders in children and a few cases of deep brain stimulation for psychiatric disorders in adolescents have been reported. Ethical guidelines on the use of deep brain stimulation in children are therefore urgently needed. This paper focuses on the decision-making process, and provides an ethical framework for (future) treatment decisions in pediatric (...) deep brain stimulation. I defend a shared decision-making model in case of deep brain stimulation for neurological and psychiatric disorders in children. To protect the vulnerable child patient, a dual consent process is needed where parents or parental guardians give their consent, and the child gives his/her assent. (shrink)

OBJECTIVES: To study empirically whether ethical theory (from the mainstream principles-based, virtue-based, and feminist schools) usefully describes the approaches doctors and nurses take in everyday patient care. DESIGN: Ethnographic methods: participant observation and interviews, the transcripts of which were analysed to identify themes in ethical approaches. SETTING: A British old-age psychiatry ward. PARTICIPANTS: The more than 20 doctors and nurses on the ward. RESULTS: Doctors and nurses on the ward differed in their conceptions of the principles of beneficence and respect (...) for patient autonomy. Nurses shared with doctors a commitment to liberal and utilitarian conceptions of these principles, but also placed much greater weight on relationships and character virtues when expressing the same principles. Nurses also emphasised patient autonomy, while doctors were more likely to advocate beneficence, when the two principles conflicted. CONCLUSION: The study indicates that ethical theory can, contrary to the charges of certain critics, be relevant to everyday health care-if it (a) attends to social context and (b) is flexible enough to draw on various schools of theory. (shrink)

When scientific research collides with social values, science's right to self-governance becomes an issue of paramount concern. In this article, I develop an account of scientific autonomy within a framework of public oversight. I argue that scientific autonomy is justified because it promotes the progress of science, which benefits society, but that restrictions on autonomy can also be justified to prevent harm to people, society, or the environment, and to encourage beneficial research. I also distinguish between different ways of limiting (...) scientific autonomy, and I argue that government involvement in scientific decision-making should usually occur through policies that control the process of science, rather than policies that control the content of science. (shrink)

A psychedelic renaissance is currently taking place in mental healthcare. The number of psychedelic-assisted therapy trials is growing steadily, and some countries already grant psychiatrists special permission to use psychedelics in non-research contexts under certain conditions. These clinical advances must be accompanied by ethical inquiry. One pressing ethical question involves whether patients can even give informed consent to psychedelic-assisted therapy: the treatment’s transformative nature seems to block its assessment, suggesting that patients are unable to understand what undergoing psychedelic-assisted therapy actually (...) means for them and whether it aligns with their values. The present paper argues that patients often have sufficient knowledge to give informed consent because they know that they want to change their negative status quo and that psychedelic-assisted therapy offers an effective way to do so. Accordingly, patients can understand what the transformative nature of psychedelic-assisted therapy means for them and a make a value-aligned choice even if they are unable to anticipate the manifestation of a psychedelic experience. (shrink)

The question of what makes someone the same person through time and change has long been a preoccupation of philosophers. In recent years, the question of what makes ordinary or lay people judge that someone is—or isn’t—the same person has caught the interest of experimental psychologists. These latter, empirically oriented researchers have sought to understand the cognitive processes and eliciting factors that shape ordinary people’s judgments about personal identity and the self. Still more recently, practitioners within an emerging discipline, experimental (...) philosophical bioethics or “bioxphi”—the focus of this chapter—have adopted a similar aim and employed similar methodologies, but with two distinctive features: (a) a special concern for enhanced ecological validity in the examples and populations studied; and (b) an interest in contributing to substantive normative debates within the wider field of bioethics. Our aim in this chapter is to sample illustrative work on personal identity in bioxphi, explore how it relates to studies in psychology covering similar terrain, and draw out the implications of this work for matters of bioethical concern. In pursuing these issues, we highlight recent work in bioxphi that includes the perceived validity of advance directives following neurodegeneration, the right of psychologically altered study participants to withdraw from research, how drug addiction may cause one to be regarded by others as “a completely different person,” the effect of deep-brain stimulation on perceptions of the self, and the potential influence of moral enhancement interventions on intuitive impressions of a person’s character. (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)

The paper analyses the application of the best interest standard in the medical care of extremely preterm babies. It proposes that as long as the parents base their decision on a well-founded medical opinion regarding the neonate’s diagnosis and prognosis and are not victims of superstition or prejudice, medical professionals are obligated to respect the parents’ informed consent, even if the professionals disagree with the parents’ opinion. In their assessments of the neonate’s interest, medical professionals can be primarily guided by (...) their judgment regarding its diagnosis and prognosis. By contrast, the personal involvement of the parents in the decision-making process, their values and the family-specific context of the infant’s possible future makes their opinion regarding the infant’s interests significantly more convincing than the opinions of other persons involved. (shrink)

Background: Current practice relies on patient-designated and next-of-kin surrogates, in consultation with clinicians, to make treatment decisions for patients who lose the ability to make their own decisions. Yet there is a paucity of data on whether this approach is consistent with patients' preferences regarding who they want to make treatment decisions for them in the event of decisional incapacity. Methods: Self-administered survey of patients at a tertiary care center. Results: Overall, 1169 respondents completed the survey (response rate = 59.8%). (...) Of the 229 respondents who had previously designated a surrogate, 78.2% wanted their surrogate to make treatment decisions in the event of decisional incapacity, whereas 21.8% wanted their doctors to make treatment decisions. Of the 822 respondents who had not designated a surrogate, 66.1% wanted their family to make treatment decisions, whereas 33.9% wanted their doctors to make treatment decisions. The most common explanation provided for why respondents wanted their surrogate or family to make treatment decisions for them in the event of decisional incapacity was the belief that loved ones knew the patient's treatment preferences. Conclusions: Contrary to current practice, 33.9% of respondents who had not designated a surrogate and 21.8% of those who had designated a surrogate indicated that they wanted their doctors to make treatment decisions for them in the event of decisional incapacity. Moreover, many of those who wanted their surrogates or family members to make treatment decisions explained this preference by citing a belief that loved ones knew the patient's treatment preferences. This belief is undermined by prior research that suggests that surrogates and family members frequently are unable to predict which treatments their charges would want. Future research should assess these two concerns with current practice and, where necessary, identify approaches to address them. (shrink)

This paper scrutinizes the tension between individuals’ rights and paternalism. I will argue that no normative account that includes rights of individuals can justify hard paternalism since the infringement of a right can only be justified with the right or interest of another person, which is never the case in hard paternalism. Justifications of hard paternalistic actions generally include a deviation from the very idea of having rights. The paper first introduces Tom Beauchamp as the most famous contemporary hard paternalist (...) by outlining his moral theory (principlism) and showing why it, as it stands, has to allow for hard paternalism. Secondly, the paper focuses on the notion of rights within principlism. I will employ traditional theories of rights to make sense of rights in principlism. Unfortunately, this attempt fails. In the third part, then, I claim that rights can only be limited with reference to the rights or interests of others. This structure is the very point of rights, it is their bite. I will argue for this claim and show its implications. The most important implication is that not only principlism, but every normative theory that includes rights of individuals, has to abolish hard paternalism. (shrink)

Viele Menschen halten Patientenverfügungen für ein geeignetes Mittel, um selbstbestimmt zu entscheiden, wie mit ihnen im Fall schwerer Demenz umgegangen werden soll. Die meisten Bioethiker stimmen ihnen zu: Demenzverfügungen seien Ausdruck der „verlängerten Autonomie“ der Patientin. Doch ob sie recht haben, ist unklar. Dem viel beachteten Identitätseinwand zufolge sind die Ausstellerin der Verfügung und ihre schwer demente Nachfolgerin numerisch verschieden: Sie sind zwei und nicht eins. Wenn das stimmt, kann die Ausstellerin nicht verfügen, wie mit ihr im Falle schwerer Demenz (...) umgegangen werden soll. Die Demenzverfügung ist ungültig. In meinem Aufsatz möchte ich eine neue Replik auf diesen Einwand vorstellen. Ihr Ansatzpunkt ist der menschliche Organismus, den wir sehen, wenn wir in den Spiegel blicken. Er kann schwer dement werden, und auch er hat die Patientenverfügung unterschrieben. Warum sollte sie dann ungültig sein? Auf den ersten Blick hat diese Replik eine Reihe von Vorzügen. Insbesondere akzeptiert sie die populären Annahmen, auf denen der Identitätseinwand basiert. Bei näherem Hinsehen zeigen sich jedoch Probleme, die so gravierend sind, dass wir von ihr Abstand nehmen sollten. (shrink)

In their account of the value of parental permission, Navin and Wasserman see families as “collective agents” who “form identities” and have interests as a “family unit” that sometimes justify subo...

In the last few decades, great progress has been made in both genetic and genomic research. The development of the Human Genome Project has increased our knowledge of the genetic basis of diseases and has given a tremendous momentum to the development of new technologies that make widespread genetic testing possible and has increased the availability of previously inaccessible genetic information. Two examples of this exponential evolution are the increasing implementation of next-generation sequencing technologies in the clinical context and the (...) expanding commercial offer of genetic tests directly-to-consumers.Firstly, the rapid development of next generation sequencing technologies has substantially reduced both the cost and the time required to sequence an entire human genome. These technologies are increasingly being used in the clinical setting with the goal of diagnosing conditions of presumed genetic origin that cannot be explained by targeted sequencing approaches. (shrink)

A primary goal of clinical practice is to respect patient autonomy. To promote this goal for patients who have lost the ability to make their own decisions, commentators recommend that surrogates make their treatment decisions based on the substituted judgment standard. This standard is commonly interpreted as directing surrogates to make the decision the patient would have made in the circumstances, if the patient were competent. However, recent commentators have argued that this approach—attempting to make the decision the patient would (...) have made if competent—is theoretically problematic, practically infeasible, and ignores the interests of the patient9s family and loved ones. These commentators conclude that the substituted judgment standard should be revised significantly, or abandoned altogether. While this response would avoid the cited problems, it also would require substantial changes to clinical practice and would raise significant problems of its own. The present paper thus considers the possibility that the criticisms do not point to problems with the substituted judgment standard itself; instead, they point to problems with the way it is most commonly interpreted. This analysis suggests that the substituted judgment standard need not be dramatically revised or abandoned. Instead, it should be interpreted in a way that effectively promotes respect for the autonomy of incompetent patients. The ‘endorsed life’ interpretation described here helps clinicians and surrogates to achieve this important goal. To clarify this approach, we explain how it differs from three other recently proposed alternatives to the standard interpretation of the substituted judgment standard. (shrink)

The increasing implementation of next-generation sequencing technologies in the clinical context and the expanding commercial offer of genetic tests directly-toconsumers has increased the availability of previously inaccessible genetic information. A particular concern in both situations is how the volume of novel information will affect the processing of genetic and genomic information from minors. For minors, it is argued that in the provision of genetic testing, their “right not to know” should be respected as much as possible. Testing a minor early (...) in life eliminates the possibility for the minor to make use of his or her “right not to know.” The article discusses the theoretical underpinnings of the right not know, analyzes reasons why various direct-to-consumer companies process samples from minors, and discusses the right not to know in relation to common complex disorders in a pediatric population. (shrink)

The medical assessments of criminal responsibility and competence to consent to treatment are performed, developed and debated in distinct domains. In this paper I try to connect these domains by exploring the similarities and differences between both assessments. In my view, in both assessments a decision-making process is evaluated in relation to the possible influence of a mental disorder on this process. I will argue that, in spite of the relevance of the differences, both practices could benefit from the recognition (...) of this similarity. For cooperative research could be developed directed at elucidating exactly how various mental disturbances can affect decision-making processes. (shrink)