In a community that takes rights seriously, consent features pervasively in both moral and legal discourse as a justifying reason: stated simply, where there is consent, there can be no complaint. However, without a clear appreciation of the nature of a consent-based justification, its integrity, both in principle and in practice, is liable to be compromised. This book examines the role of consent as a procedural justification, discussing the prerequisites for an adequate (...) class='Hi'>consent -- in particular, that an agent with the relevant capacity has made an unforced and informed choice, that the consent has been clearly signalled, and that the scope of the authorisation covers the act in question. It goes on to highlight both the Fallacy of Necessity (where there is no consent, there must be a wrong) and the Fallacy of Sufficiency (where there is consent, there cannot be a wrong). Finally, the extent to which the authority of law itself rests on consent is considered. If the familiarity of consent-based justification engenders confusion and contempt, the analysis in this book acts as a corrective, identifying a range of abusive or misguided practices that variously under-value or over-value consent, that fictionalise it or that are fixated by it, and that treat it too casually or too cautiously. In short, the analysis in Consent in the Law points the way towards recognising an important procedural justification for precisely what it is as well as giving it a more coherent application. (shrink)

The twin ideas at the heart of the social contract tradition are that persons are naturally free and equal, and that genuine political obligations must in some way be based on the consent of those obligated. The Lockean tradition has held that consent must be in the form of explicit choice; Kantian contractualism has insisted on consent as rational endorsement. In this paper I seek to bring the Kantian and Lockean contract traditions together. Kantian rational (...) class='Hi'>justification and actual choice are complementary devices through which our freedom and equality can be reconciled with moral and political authority. We should not think that there is simply one way by which relations of moral and political authority can be reconciled with our status as free and equal. I defend three distinct devices through which freedom and authority may be reconciled: justification to others, social choice and promise. All three are aspects of the ?consent tradition? broadly construed. (shrink)

BackgroundIn Saudi clinical settings, benevolent family care that reflects strongly held sociocultural values is commonly used to justify overriding respect for patient autonomy. Because the welfare of individuals is commonly regarded as inseparable from the welfare of their family as a whole, these values are widely believed to obligate the family to protect the welfare of its members by, for example, giving the family authority over what healthcare practitioners disclose to patients about their diagnoses and prognoses and preventing them from (...) making informed decisions about their healthcare.DiscussionFamily dominance over the healthcare decisions of competent patients is ethically problematic when the family prevent healthcare practitioners from disclosing diagnoses and prognoses to patients who have the capacity to consent and make decisions in their own best interests. Thus, the author holds that sociocultural values ought to be respected only when they do not prevent competent patients from knowing their diagnoses and prognoses or prevent them from making their own decisions.ConclusionHealthcare practitioners should not allow patients’ families to control what can or cannot be disclosed to competent patients. This is particularly important when patients are approaching death so that they may address their material and spiritual wishes—among other needs—as they prepare for death. Justification for this position is drawn from the Maqasid Al-Shariah-based Islamic bioethics approach, from which it is possible to argue that the harm of withholding diagnoses and prognoses from patients who are imminently dying outweighs the potential benefits. (shrink)

A very common but untested assumption is that potential children would consent to be exposed to the harms of existence in order to experience its benefits. And so, would-be parents might appeal to the following view: Procreation is all-things-considered permissible, as it is morally acceptable for one to knowingly harm an unconsenting patient if one has good reasons for assuming her hypothetical consent—and procreators can indeed reasonably rely on some notion of hypothetical consent. I argue that this (...) view is in error. My argument appeals to a consent-based version of anti-natalism advanced by Seana Valentine Shiffrin. Anti-natalism is the view that it is always wrong to bring people into existence. While, like Shiffrin, I stop short of advocating a thoroughgoing anti-natalism, I nevertheless argue that procreators cannot appeal to hypothetical consent to justify exposing children to the harms of existence. I end by suggesting a more promising route by which this justification might be achieved. (shrink)

For decades, the greater part of efforts to improve regulatory frameworks for research ethics has focused on informed consent procedures; their design, codification and regulation. Why is informed consent thought to be so important? Since the publication of the Belmont Report in 1979, the standard response has been that obtaining informed consent is a way of treating individuals as autonomous agents. Despite its political success, the philosophical validity of this Belmont view cannot be taken for granted. If (...) the Belmont view is to be based on a conception of autonomy that generates moral justification, it will either have to be reinterpreted along Kantian lines or coupled with a something like Mill’s conception of individuality. The Kantian interpretation would be a radical reinterpretation of the Belmont view, while the Millian justification is incompatible with the liberal requirement that justification for public policy should be neutral between controversial conceptions of the good. This consequence might be avoided by replacing Mill’s conception of individuality with a procedural conception of autonomy, but I argue that the resulting view would in fact fail to support a non-Kantian, autonomy-based justification of informed consent. These difficulties suggest that insofar as informed consent is justified by respect for persons and considerations of autonomy, as the Belmont report maintained, the justification should be along the lines of Kantian autonomy and not individual autonomy. (shrink)

Community engagement is increasingly defended as an ethical requirement for biomedical research. Some forms of community engagement involve asking the consent of community leaders prior to seeking informed consent from community members. Although community consent does not replace individual consent, it could problematically restrict the autonomy of community members by precluding them from research when community leaders withhold their permission. Community consent is therefore at odds with one of the central principles of bioethics: respecting autonomy. (...) This raises the question as to how community consent can be justified or even required. This paper aims to provide an answer to this question by arguing, based on the work of Taylor and Kymlicka, that community practices are important for the identity and autonomy of community members. When these practices are incompatible with a solitary focus on individual informed consent, they need to be protected by making these decision‐making practices (including asking permission to community authorities) part of the consent process. Since these decision‐making practices are important for the autonomy of community members, community consent with the goal of protecting these practices is not necessarily in conflict with autonomy. (shrink)

Informed consent is valid only if the person giving it is competent. Although allegedly informed consents are routinely tendered, there are nonetheless serious problems with the concept of competence as it stands. First, conceptual work upon competence is incomplete: the concept is unanalyzed and no logic of competence has been identified. It is thus virtually impossible to reliably discern who is competent. ;Traditional work on competence has explicated three dichotomies from which the necessary conditions for the possibility of competence (...) will be identified, viz., that competence is either a global or a specific notion; is present in varying degrees or in virtue of a threshold; and may or not include appeals to consequences. Past efforts have failed to notice a fourth dichotomy: competence as an affective or cognitive notion. Failure to designate the appropriate arms of these dichotomies is responsible for there being, at present, no reliable test for competence. The inadequacies of a highly regarded particular test for competence, the mental status examination, are examined in light of this failure. ;Competence is located within the rule-governed practice of informed consent. That practice and hence, competence, is justified through a Kantian analysis of respect for persons. This analysis reveals that the logic of competence requires assessment in terms of specific rather than global concerns; degrees of ability rather than a threshold; both cognitive and affective abilities; and no appeal to consequences. ;Based upon the analyses of consent as an example of decision making within the practice of informed consent and of respect for persons, the capacities which jointly comprise competence are identified. These are the capacities to receive, recognize, and retrieve information; to reason about, relate to oneself, and rank options; to choose among alternatives; and, under certain circumstances, to defend one's choice. ;Identification of the logic of competence and explication of and justification for the capacities that comprise competence to consent provide a conceptual foundation for the crucial concept of competence that the informed consent process currently lacks. It should facilitate construction of a test for competence. (shrink)

When formulating a policy related to food in a heterogeneous context within a nation or between nations, oppositional positions are more or less explicit, but always have to be overcome. It is interesting to note, though, that such elements as culture and religion have seldom been the focus in discussions about methods of decision-making in food policy. To handle discrepancies between oppositional positions, one solution is to narrow differences between partners, another to accept one partner or position as dominant. In (...) a solid and lasting policy, any of these options has to be agreed upon by all the partners involved. In this article, I argue that context sensitivity and a shared picture of the situation are necessary bases for a solid food policy. Two methods for policy discussion are elaborated on and religious slaughter is given as an example of a heterogeneous setting with strongly diverging ideals. Several aspects have to be respected from the outset, such as culture, religion, and value systems. This condition is partly met in a model of informed consent and in a consensus model. The informed consent model is regarded as insufficient, because it lacks both methods of dealing with hierarchies and the goal of finding a shared and nuanced picture of the situation. A consensus model meets these tasks but might on the other hand, among other things, be too difficult to follow and to administer. For both models, some difficulties with justification of decisions arise. Five essential elements emanating from a combination of these models are suggested as a basis for a decision process regarding food policies: respect for each discussion partner, context sensitivity, respect for arguments including emotions, a shared picture of the situation, and finally relating theory and practice. (shrink)

In this issue of Clinical Ethics, Jonathan Pugh rejects hypothetical consent-based conceptions of the child’s right to bodily integrity (RBI). Pugh also questions the relevance of adults’ regret of past bodily infringements in evaluating potential violations of children’s RBI. Pugh then argues that autonomy serves as the justification for our power to waive our bodily rights. Finally, Pugh claims that the child’s interest in developing the capacity for autonomy is key to evaluating potential RBI violations. In this (...) article, I challenge each of these arguments. First, I argue that it is the circumstances of parents vis-a-vis their children (rather than the difficulties in determining hypothetical agents' values) that should lead us to reject hypothetical-consent-based conceptions of the child’s RBI in favor of best-interests conceptions. Second, I argue that adults’ regret of childhood bodily interventions is highly relevant for evaluating these interventions’ permissibility. Third, I reject the claim that autonomy is the primary justification for our power to waive our bodily rights. Finally, I argue that Pugh overstates the importance of the child’s interest in developing the capacity for autonomy, at least when it comes to debates in contemporary liberal democracies over interventions in children’s bodies. (shrink)

This chapter surveys attempts to provide liberal justification for specific rights available to Indigenous citizens of democratic societies. The most important of these, by Will Kymlicka, relied on the equal right of all citizens to the good of cultural membership to argue for specific rights to protect minority cultures. After noting that Rawls’s political liberalism offers other resources to argue for specific constitutional or legal rights for colonised Indigenous citizens, the chapter turns to consider James Tully’s argument for an (...) inter-cultural constitutionalism based on the principles of recognition, consent and continuity. Finally, the chapter refers to the work of Robert A. Williams Jr in order to suggest that the conditions of a just and fair colonial constitution are similar to the conditions of a just and stable political society in which there are incommensurable comprehensive moral views. (shrink)

The legal requirements and justifications for collecting patient-identifiable data without patient consent were examined. The impetus for this arose from legal and ethical issues raised during the development of a population-based disease register. Numerous commentaries and case studies have been discussing the impact of the Data Protection Act 1998 and Caldicott principles of good practice on the uses of personal data. But uncertainty still remains about the legal requirements for processing patient-identifiable data without patient consent for research (...) purposes. This is largely owing to ignorance, or misunderstandings of the implications of the common law duty of confidentiality and section 60 of the Health and Social Care Act 2001. The common law duty of confidentiality states that patient-identifiable data should not be provided to third parties, regardless of compliance with the DPA1998. It is an obligation derived from case law, and is open to interpretation. Compliance with section 60 ensures that collection of patient-identifiable data without patient consent is lawful despite the duty of confidentiality. Fears regarding the duty of confidentiality have resulted in a common misconception that section 60 must be complied with. Although this is not the case, section 60 support does provide the most secure basis in law for collecting such data. Using our own experience in developing a disease register as a backdrop, this article will clarify the procedures, risks and potential costs of applying for section 60 support. (shrink)

The coronavirus pandemic has brought to public attention a variety of questions long debated in medical ethics, but now given both added urgency and wider publicity. Among these is triage, with its origins in deciding which individual lives are to be saved on a battlefield, but now also concerned with the allocation of scarce resources more generally. On the historical battlefield, decisions about whom to treat first – neither those who would survive without treatment, nor those who would not survive (...) even with treatment, but those who needed treatment to survive – was facilitated by military discipline and the limited effectiveness of treatments available. In the allocation of scarce resources today, by contrast, such decisions are subject to intense public and political scrutiny, and the range of effective treatments available has immeasurably diminished the proportion of ‘those who would not survive even with treatment’. If triage decisions are to be made, they now need to be justified in the arena of public opinion by moral arguments which are also politically persuasive. A number of different aspects of what is required for this endeavour are examined in the first five contributions to this issue of the Journal. In ‘Should age matter in COVID-19 triage? A deliberative study ’1, Kuylen and colleagues report on a deliberative study of public views in the UK, in which participants ‘generally accepted the need for triage but strongly rejected ’fair innings’ and ’life projects’ principles as justifications for age-based allocation,…preferring to maximise the number of lives rather than life years saved’; and concerned that in any resolution ‘utilitarian considerations of efficiency should be tempered with a concern for equality and vulnerability’. A similar concern to temper utilitarian considerations, in this case with an Aristotelian view of the common good as ‘the good life for …. (shrink)

Compared with data that is initially collected for research purposes, the mandatory authorization of a government database for secondary use deserves greater scrutiny because it consists of information that is collected initially for administrative purposes. Using the case of Taiwan’s National Health Insurance (NHI) Database as an example, this paper analyzes the ethical issues that emerge when the research participants are “participated” in studies without their consent, according to the current policy. The proponents of secondary use for research purposes (...) maintain that the authorized use of the NHI Database is necessary for public interests, while the opponents argue that the potential lack of democratic accountability and the infringement on people’s rights to privacy and information autonomy is unwarranted. Drawing on the solidarity‐based approach, this paper proposes a temporal solution as a possible reform direction for better ethical justification of the secondary use of the NHI Database. (shrink)

In a recent critique of informed consent, Robert Veatch argues that the practice is in principle unable to attain the goals for which it was developed. We argue that Veatch's focus on the theoretical impossibility of determining patients' best interests is misapplied to the practical discipline of medicine, and that he wrongly assumes that the patient-physician communication fails to provide the knowledge needed to insure the patient's best interests. We further argue that Veatch's suggested alternative, value-based patient-professional pairing, (...) is, on his own terms, impossible to implement. Finally, we reexamine the philosophical and practical justifications for informed consent and conclude that the practice should be retained. (shrink)

The necessity of consent is widely justified on the basis of the principle of respect for autonomy. Also, it is widely believed that shared decision making (SDM) is the practical device to seek patients’ consent for medical treatment. In this essay, I argue that SDM, while necessary, is insufficient for consent; because, in the paradigm of evidence-based medicine, SDM is contingent upon other practices to identify appropriate treatments that form the subjects of SDM. Indeed, case law (...) emphasises normative decision-making practices that precede SDM. Furthermore, case law supplies a nuanced understanding of SDM, which includes not only exchange of information but also attention to human vulnerability that persists despite formal retention of decision-making capacity. In addition, the law marks out a space in which people with capacity are absolutely entitled to self-determination. Thus, a four-step framework of decision making can be induced from legal doctrine. This legal framework corresponds to a construct of respect for autonomy that draws upon feminist theory. Feminist scholars have objected to the focus on individuals in traditional theories of autonomy; instead, they insist that people have to be considered in the context of their social influences and relationships. Feminists separate out four ideas of autonomy, and these ideas can be used to construct a four-layered model of respect for autonomy, in which each layer corresponds sequentially to a step in the legal framework of decision making. This model of respect for autonomy provides both conceptual clarity and theoretically robust justification for doctors’ various obligations in decision-making practices for consent. (shrink)

Purpose: The method of diagnosing diabetic retinopathy (DR) through artificial intelligence (AI)-based systems has been commercially available since 2018. This introduces new ethical challenges with regard to obtaining informed consent from patients. The purpose of this work is to develop a checklist of items to be disclosed when diagnosing DR with AI systems in a primary care setting. -/- Methods: Two systematic literature searches were conducted in PubMed and Web of Science databases: a narrow search focusing on DR (...) and a broad search on general issues of AI-based diagnosis. An ethics content analysis was conducted inductively to extract two features of included publications: (1) novel information content for AI-aided diagnosis and (2) the ethical justification for its disclosure. -/- Results: The narrow search yielded n = 537 records of which n = 4 met the inclusion criteria. The information process was scarcely addressed for primary care setting. The broad search yielded n = 60 records of which n = 11 were included. In total, eight novel elements were identified to be included in the information process for ethical reasons, all of which stem from the technical specifics of medical AI. -/- Conclusions: Implications for the general practitioner are two-fold: First, doctors need to be better informed about the ethical implications of novel technologies and must understand them to properly inform patients. Second, patient's overconfidence or fears can be countered by communicating the risks, limitations, and potential benefits of diagnostic AI systems. If patients accept and are aware of the limitations of AI-aided diagnosis, they increase their chances of being diagnosed and treated in time. (shrink)

The right to withdraw from research without penalty is well established around the world. However, it has been challenged in some corners of bioethics based on concerns about various harms—to participants, to scientific integrity, and to research bystanders—that may stem from withdrawal. These concerns have become particularly salient in emerging debates about the ethics of controlled human infection (CHI) studies in which participants are intentionally infected with pathogens, often in inpatient settings with extensive follow‐up. In this article, I provide (...) support for preserving the right to withdraw from research without penalty and demonstrate that it is also typically justified in the specific context of CHI studies. The right is well aligned with individual freedoms outside the research setting, where autonomous individuals are permitted to engage in behaviors that will foreseeably cause them harm; where they cannot be compelled to satisfy contracts for their services, nor penalized for failure to do so; and where their behavior is not constrained by public health authorities except in extreme circumstances. These freedoms are supported by U.S. law, as well as by ethical analysis that is more globally relevant. The problems associated with the right to withdraw, however, remain. The best approach to addressing them is not to restrict the right but rather to avoid initiating research when withdrawal would be especially problematic. If research proceeds, steps can still be taken to minimize participant withdrawal without infringing the right. Investigators can avoid participant surprise through informed consent focused on a study’s most burdensome aspects and promote study completion through financial incentives. Should participants nonetheless seek to withdraw, investigators may attempt to persuade them not to do so by encouraging consideration of the range of potential harms that may result. Researchers conducting CHI studies and other research from which withdrawal might be especially problematic should prepare for the possibility of participant withdrawal, respect participant requests to withdraw without penalty, and incorporate various measures to avoid such requests. (shrink)

Deep brain stimulation (DBS) as investigational intervention for symptomatic relief from Alzheimer disease (AD) has generated big expectations. Our aim is to discuss the ethical justification of this research agenda by examining the underlying research rationale as well as potential methodological pitfalls. The shortcomings we address are of high ethical importance because only scientifically valid research has the potential to be ethical. We performed a systematic search on MEDLINE and EMBASE. We included 166 publications about DBS for AD into (...) the analysis of research rationale, risks and ethical aspects. Fifty-eight patients were reported in peer-reviewed journals with very mixed results. A grey literature search revealed hints for 75 yet to be published, potentially enrolled patients. The results of our systematic review indicate methodological shortcomings in the literature that are both scientific and ethical in nature. According to our analysis, research with human subjects was performed before decisive preclinical research was published examining the specific research question at stake. We also raise the concern that conclusions on the potential safety and efficacy have been reported in the literature that seem premature given the design of the feasibility studies from which they were drawn. In addition, some publications report that DBS for AD was performed without written informed consent from some patients, but from surrogates only. Furthermore, registered ongoing trials plan to enroll severely demented patients. We provide reasons that this would violate Art. 28 of the Declaration of Helsinki, because DBS for AD involves more than minimal risks and burdens, and because its efficacy and safety are not yet empirically established to be likely. Based on our empirical analysis, we argue that clinical research on interventions of risk class III (Food and Drug Administration and European Medicines Agency) should not be exploratory but grounded on sound, preclinically tested, and disease-specific a posteriori hypotheses. This also applies to DBS for dementia as long as therapeutic benefits are uncertain, and especially when research subjects with cognitive deficits are involved, who may foreseeably progress to full incapacity to provide informed consent during the required follow-up period. (shrink)

The analysis presented here lays out the ethical warrants for requiring community oversight of health research conducted in international settings. It reviews the inadequacies with the current standards of individual informed consent and research ethics committee review, and then, shows how a broader population-based public health perspective raises new demands on justice involving due consideration of the rights, harms and benefits to the community as a whole. As developed here, an ethical standard that requires community oversight of health (...) research is justified on three principled grounds: respect for community autonomy and their right to self-determination; due consideration of the consequences of the research for the community as a whole; and, a more complete understanding of human autonomy. The paper concludes with practical recommendations regarding the composition of Community Advisory Boards to ensure that they have legitimate decision-making authority in diverse socio-cultural contexts. (shrink)

Il problema apparentemente insolubile di una giustificazione non circolare dell’induzione diverrebbe più abbordabile se invece di chiederci solo cosa ci assicura che un fenomeno osservato si riprodurrà in modo uguale in un numero potenzialmente infinito di casi futuri, ci chiedessimo anche come si spiega che esso si sia manifestato fin qui in modo identico e senza eccezioni in un numero di casi finito ma assai alto. E’ questa l’idea della giustificazione abduttiva dell’induzione, avanzata in forme diverse da Armstrong, Foster e (...) BonJour: serie talmente regolari di fenomeni sono da un punto di vista logico talmente improbabili che se il mondo fosse puramente casuale (se cioè gli eventi si presentassero con frequenza proporzionale alla loro probabilità logica) esse non potrebbero verificarsi se non per una coincidenza miracolosa. Pertanto, tali regolarità si spiegano solo assumendo che siano prodotte da meccanismi o necessità nomiche; ma se questo è il caso, è corretto concludere che tali regolarità persisteranno anche in futuro senza eccezioni, e dunque le inferenze induttive su di esse sono giustificate. Anche Kornblith argomenta dall’effettivo successo delle inferenze induttive all’esistenza di regolarità oggettive in natura; mentre Sankey parte dall’ uniformità della natura per giustificare l’induzione. Congiungendo le due argomentazioni, dunque, si ottiene di nuovo una giustificazione dell’induzione in base all’argomento del “se non è un miracolo …”. Un ostacolo su questa via è specificare in che senso la natura sia uniforme (dato che ovviamente non lo è in ogni suo aspetto) e di quali regolarità possiamo aspettarci che persistano senza eccezione anche in futuro (dato che evidentemente non tutte lo fanno: l’acqua non bolle sempre a 100°, la pressione non è sempre funzione della temperatura, e così via). Entrano qui in gioco le conoscenze di sfondo e la ripetizione delle osservazioni in condizioni diverse, che ci mostrano quali circostanze siano rilevanti al verificarsi del fenomeno dato. In tal modo, le nostre descrizioni delle regolarità naturali convergono su descrizioni che specificano sia le condizioni individualmente necessarie e congiuntamente sufficienti, sia tutti gli argomenti delle funzioni che costituiscono tali regolarità. Ciò consente di formulare i principi di Uniformità della Natura e di Induzione in modo non generico (e dunque, a seconda della formulazione, vuoto o eccessivo), ma circostanziato: così essi asseriscono, rispettivamente, che la natura è uniforme negli aspetti evidenziati dalle descrizioni su cui convergiamo grazie alle osservazioni ripetute, e che solo queste descrizioni possono essere induttivamente generalizzate. Ciò consente anche di risolvere enigmi alla Goodman, quali: poiché le osservazioni ci hanno mostrato (solo) il verificarsi di una data regolarità fino al momento presente t, come possiamo presumere che essa si verificherà anche dopo t? La risposta è che osservazioni e conoscenza di sfondo non ci dicono che vi sia alcun limite temporale tra le condizioni necessarie della regolarità data. (shrink)

Le modèle de la justice comme équité est élaboré sur des éléments centraux (en particulier: le consentement éclairé des citoyens). Les fonctions de ce modèle chez Rawls sont: un accord rationnel autour de libertés individuelles, un principe raisonnable de maximisation de la stabilité sociale et la fondation de principes, acceptables du point de vue des personnes défavorisées. Notre objectif consiste à mettre à l'épreuve une semblable conception de la justice politique libérale, avec sa composante la moins libérale : la balance (...) à partir de laquelle il est bon de punir. Constatant que la criminalisation est l'intrusion la plus importante de l'Etat dans la sphère autonome de l'individu, l'éthique ausculte les principes normatifs du droit pénal. Justifier une peine amène à des finalités de rétribution et de prévention, qui sont véhiculées par la signification de " punir ". Notre méthode se veut une pesée éthique de la signification des idées et des mots ; notre objectif général est une discussion de ce qu'est une évaluation normative par des principes et des règles. Notre approche de Rawls consiste à repositionner le cadre de ce qui peut être légitimement interdit, face à la liberté discrétionnaire de l'individu. (shrink)

What ethically justifies the provision of invasive and irreversible treatments to minors? In this commentary, I examine this question in response to Moti Gorin's article “What Is the Aim of Pediatric ‘Gender‐Affirming’ Care?,” which critiques autonomy‐based arguments for justification of gender‐affirming care in minors. Minors generally lack sufficient autonomy to make significant medical decisions or major life decisions. For this reason, parents are generally their decision‐makers, working with medical professionals to choose treatments that serve the best interests of (...) the minor. Medical care in minors is justified by beneficence, not autonomy, and this should be no different for gender‐affirming care. This severely undermines autonomy‐based arguments for provision of gender‐affirming care to minors. Given the lack of conclusive evidence for benefit, the nature of the treatment, and the fact that gender dysphoria in minors resolves spontaneously in most cases, there is presently insufficient justification for provision of such care to minors. (shrink)

What is the foundation of consent in the criminal law? Classically liberal commentators have offered at least three distinct theories. J.S. Mill contends we value consent because individuals are the best judges of their own interests. Joel Feinberg argues an individual’s consent matters because she has a right to autonomy based on her intrinsic sovereignty over her own life. Joseph Raz also focuses on autonomy, but argues that society values autonomy as a constituent element of individual (...) well-being, which it is the state’s duty to promote. The criminal law’s approach to the problem of non-contemporaneous consent—prospective consent and retrospective consent—casts a unique light on the differences among these three justifications. Peter Westen claims neither Mill’s nor Feinberg’s justifications for consent fully explains how non-contemporaneous consent is treated in the criminal law. Specifically, Mill’s “self-interest” conception explains the criminal law’s limited recognition of prospective consent, but cannot explain its total rejection of retrospective consent. Conversely, Feinberg’s “sovereign autonomy” conception explains why the criminal law rejects retrospective consent, but cannot explain why the law recognizes irrevocable prospective consent only in limited circumstances. I resolve this dilemma by explaining that Raz’s “autonomy is good” conception is consistent with both the criminal law’s limited recognition of irrevocable prospective consent and its total rejection of retrospective consent. This suggests the existing criminal law embodies Raz’s theory that it is the duty of the state to promote morality, in particular the moral good of individual well-being through living autonomously. In contrast, the criminal law’s treatment of consent would have to be modified if it were to reflect Mill’s “self-interest” conception, or Feinberg’s “sovereign autonomy” conception. (shrink)

Morality is fundamentally impartial. No one can be simply excluded from moral consideration without justification in terms of a morally relevant distinction. I claim that moral impartiality justifies establishing the presumption in favor of duties to oneself. I vindicate this claim against the challenge that there must be a morally relevant self-other distinction which explains the commonsense moral asymmetry. I show that the asymmetry can be explained instead by the presupposition of consent. I end by responding to the (...) objection that the consent-based explanation of the asymmetry condemns potential duties to oneself as practically uninteresting. (shrink)

Despite broad agreement that the vulnerable have a claim to special protection, defining vulnerable persons or populations has proved more difficult than we would like. This is a theoretical as well as a practical problem, as it hinders both convincing justifications for this claim and the practical application of required protections. In this paper, I review consent-based, harm-based, and comprehensive definitions of vulnerability in healthcare and research with human subjects. Although current definitions are subject to critique, their (...) underlying assumptions may be complementary. I propose that we should define vulnerability in research and healthcare as an identifiably increased likelihood of incurring additional or greater wrong. In order to identify the vulnerable, as well as the type of protection that they need, this definition requires that we start from the sorts of wrongs likely to occur and from identifiable increments in the likelihood, or to the likely degree, that these wrongs will occur. It is limited but appropriately so, as it only applies to special protection, not to any protection to which we have a valid claim. Using this definition would clarify that the normative force of claims for special protection does not rest with vulnerability itself, but with pre-existing claims when these are more likely to be denied. Such a clarification could help those who carry responsibility for the protection of vulnerable populations, such as Institutional Review Boards, to define the sort of protection required in a more targeted and effective manner. (shrink)

Is Female Genital Cosmetic Surgery for an adolescent with Body Dysmorphic Disorder ever ethically justified? Cosmetic genital surgery for adolescent girls is one of the most ethically controversial forms of cosmetic surgery and Body Dysmorphic Disorder is typically seen as a contraindication for cosmetic surgery. Two key ethical concerns are that Body Dysmorphic Disorder undermines whatever capacity for autonomy the adolescent has; and even if there is valid parental consent, the presence of Body Dysmorphic Disorder means that cosmetic surgery (...) will fail in its aims. In this article, we challenge, in an evidence-based way, the standard view that Body Dysmorphic Disorder is a contraindication for genital cosmetic surgery in adolescents. Our argument gathers together and unifies a substantial amount of disparate research in the context of an ethical argument. We focus on empirical questions about benefit and harm, because these are ethically significant. Answers to these questions affect the answer to the ethical question. We question the claim that there would be no benefit from surgery in this situation, and we consider possible harms that might be done if treatment is refused. For an adolescent with Body Dysmorphic Disorder, the most important thing may be to avoid harm. We find ourselves arguing for the ethical justifiability of cosmetic labioplasty for an adolescent with Body Dysmorphic Disorder, even though we recognize that it is a counter intuitive position. We explain how we reached our conclusion. (shrink)

Seventeenth century philosophers were pre-occupied with the justification for the use of coercion; the nature and scope of the citizen's duty to obey the law was a central concern. The typical philosophical accounts which attempt to articulate the conditions under which a citizen has an obligation to obey the law tend to fall into two camps: those that ground the obligation to obey the law in consent, and those that ground it in benefits received, or possibly a combination (...) of both. More recently, however, some have argued that questions about the obligation to obey the law have been eclipsed by questions about distributive justice. Many leading figures in modern analytic jurisprudence remain concerned with the nature of political obligation. Joseph Raz is a current-day theorist who has recognized the importance of this issue and the need for an answer that is not over-simplistic. Recently Raz has re-examined his account in ?The Problem of Authority: Revisiting the Service Conception, - making an exploration of his theory particularly timely. Raz argues that all governments claim morally legitimate authority, but not all of them actually possess it. His theory seeks to give us the tools by which to distinguish the legitimate claims from imposters. The complexity and flexibility of Raz's understanding of the nature and scope of the individual's obligation to obey the law accounts for its appeal. Upon closer inspection, however, difficulties emerge. I argue that Raz's theory is plagued by a deep-seated tension between his two central theses: the pre-emption thesis and the normal justification thesis. While I explore both theses in further depth, the gist of the pre-emption thesis is that it requires a pre-commitment to authority in order for the law?s mediating role to be performed. Conversely, the normal justification thesis invites a case by case assessment of the bindingness of norms. I argue that instead of offering us a unified conception of authority, Raz vacillates unstably between two models - a consent-based model and a benefits received model. I demonstrate that this tension is ineradicable because the theses are connected to divergent models of law and incompatible methodologies. (shrink)

Polygyny, the marriage of a man with more than one woman at the same time is a well-known practiced in human history. Islamic law accepts the institution of polygyny as a substitute provision if it fulfills the certain conditions and reasons, -and limited the maximum number of wives to four. Although polygyny is mubah (permissible) in Islamic law, it is not an absolute right that every man can use arbitrarily. Thus in Islamic law, the legitimacy of polygyny has been attributed (...) to the presence of two basic conditions: the observance of justice among co-wives and providing maintnance. However, the observance of these conditions that is left to the mercy of men leads to the exploitation of the right for practicing to polygyny and victimization of the first spouse. Therefore, inserting some restrictions for using this right has come to the agenda from time to time in Islamic legal history. The first legal arrangements concerning the restriction of the polygyny (taaddud al-zawjāt) in the history of Islamic law were indirectly made with the Family Law Decree of 1917 which was prepared in the last periods of the Ottoman Empire. Among the late Islamic jurists, the issue of the limitation of polygyny by public authority in Islamic law continues to be discussed. The civil laws of contemporary Muslim countries contain different regulations on the issue. In this article, the restriction of polygyny by the public authority in Islamic family law will be focused on.Summary: Polygyny, the marriage of a man with more than one woman at the same time is a well-known practiced in human history. Islamic law accepts the institution of polygyny as a substitute provision if it fulfills the certain conditions and reasons, and limited the maximum number of wives to four. Thus, relevant verses in the Qur’an (al-Nisa 4/3, 129) and the Prophet’s own practice (al-Ahzab 33/50, 51, 59 al-Tahrim 66 / 3-5) show that it is legitimate for a man to marry more than one woman (up to four) at the same time in Islamic law. Although polygyny is legally permissible (mubah) in Islamic law it is not an absolute right that every man can arbitrarily use. Thus in Islamic law, the legitimacy of polygyny has been attributed to the presence of two basic conditions: the observance of justice among co-wives and providing maintenance. On the other hand, there may be some exceptional circumstances permitting polygyny in Islamic law. For example, when female population is much more than male in the society and when a, woman is can not fulfill her family duties due to her cureless illness, polygyny is permitted in Islamic law.As it can be understood from the explanations above, polygyny in Islamic law is not a general and mandatory provision that should be applied by every man who has legal capacity to marry. On the contrary, it is an exceptional provision that is justified if there are certain conditions and justifications. According to this; polygyny is a moral and legal institution that is made up of mutual consent based on individual and social conditions and needs in Islamic law. Therefore, men do not have to marry a second woman on their current wives, as well as women have the right to say “no” to marry a married man as a second wife.When the conditions and rationales indicated in the relevant verses and doctrine are evaluated together, it can be said that in order to be able to legitimize the polygyny in Islamic law, there must be three basic conditions:(1) Observing justice among spouses, (2) Having sufficient financial power to provide maintenance for spouses, (3) Existence of individual or social need or necessity.Therefore, in order to prevent the exploitation of polygyny, which is justified under certain conditions and justifications in Islamic law, the above-mentioned conditions must be fulfilled. Otherwise, polygyny can cause some problems, unrest and injustice for individual, family and society. Hence, in the presence of certain conditions and justifications, polygyny accepted in Islamic law as a moral and legal institution aiming the elimination of individual and social arbitration.Although the legitimacy of polygyny in Islamic law depends on the existence of certain conditions and special circumstances, it is a known fact that they are not always observed in practice. It can be said that the right of polygyny is a subject of abuse in practice. Therefore, the limitation of polygyny by the public authority has come to the fore in Islamic legal history. Today, control of the public authority and inserting some restrictions of polygyny continue to be discussed among the Islamic jurists. In the past, it is possible to say that the control of the exercising of this right has been done relatively by society (social environment). However, nowadays, since the society cannot perform the control mechanism, it is brought up by the state (public authority) on behalf of the society.Among the contemporary Islamic jurists regarding the supervision or limitation of polygyny by the public authority; there are two approaches: “those who accept” and “those who do not accept” such restrictions.Islamic jurists, who accept that public authority is allowed to intervene in polygyny, grounded their views on two perspectives: The first is that the polygyny is legally permissible and the public authority has the authority to limit the permissible (mubah) in Islamic law. The second is that polygyny is restricted with the conditions in the Qur’anic verses such as “husband’s observation supervision of justice among his wives” and “having the power for ensuring the livelihood (nafaqa) of his wives” and it is more appropriate for the benefit of society and the purpose of the legislator (Shari’) to be subject to the control of the public authority whether these conditions are present or not. Islamic jurists, who do not agree that the public authority has the right to intervene in polygyny grounded their views on two perspectives as well: First, polygyny is a legitimate right mentioned in the verses in Islamic law and there is no definite proof that this can be prohibited or restricted by the public authority. Secondly, it is contrary to the verses to prohibit or limit the right that the Qur’an makes legitimate (free).Thus, it is possible to say that the opinion which accepts that the public authority has to limit polygyny is more accurate in terms today’s social conditions. Namely, polygyny is linked to two basic conditions: ”husband’s observance of justice among his wives and having the power to provide maintenance for his wives. Therefore, supervision of the public authority on checking the existence of these conditions is more appropriate for the purpose of the legislator (Shari legitimizing polygyny and social benefit.In fact, the Ottoman Family Law Decree of 1917 indirectly limited the right of the husband to marry more than one woman, giving the woman right to stipulate a condition in her marriage contract that her husband not to marry a second woman. In the 1924 Draft of Family Law Decree, which was prepared after the repeal of the Family Law Decree of 1917, but not enacted, it was proposed that the application of polygyny should be presented to the approval judge.In today’-s Muslim countries, there are three different practices: namely “completely prohibiting polygyny”, ”releasing polygyny” and “giving the court the right to monitor the existence of necessary conditions “. In countries such as Morocco, Algeria, Iraq, Syria, Indonesia, Malaysia (and Pakistan), the validity of polygyny depends on the permission and supervision of the judiciary. Some of these countries which have accepted judicial review have given the judicial control for the requirement of justice, some of them the conditions of justice and maintenance some of them for the conditions of justice, maintenance and a legitimate justification.In sum, in accordance with the provisions of the relevant verses, polygyny in Islamic law is legitimately permissible (mubah). However, the public authority has the right and authority to limit the mubah in Islamic law in the case of the elimination of damage and the necessity of the public interest. On the other hand, the public authority has the right and authority to enact the law in Islamic law by preferring one of the existing ijtihads that meet the needs of the society and conforms to the conditions of the age.According to this, when the public authority made a statutory regulation that links the use of right of polygyny to the permission of the judge, this regulation is binding on society.Therefore, in the event of such a legal arrangement, it is possible for the public authority to allow the men who comply with the conditions and not to allow the ones who are not to comply with the conditions after conducting the necessary investigation. As a matter of fact, now Family Laws of many Muslim countries now include such legal arrangements. It is also worth mentioning here that there may be a necessity for a man to marry more than one woman (up to four) at the same time in terms of social benefits, when the population of male and female in a society is excessively disproportionate. In such circumstances, it is also possible that the public authority encourages, or even mandates, the marriage of men who have fulfilled the conditions to more than one woman. (shrink)

Background: In 2006, the Centers for Disease Control and Prevention (CDC) recommended three changes to HIV testing methods in US healthcare settings: (1) an opt-out approach, (2) removal of separate signed consent, and (3) optional HIV prevention counseling. These recommendations led to a public debate about their moral acceptability. Methods: We interviewed 25 members from the fields of US HIV advocacy, care, policy, and research about the ethical merits and demerits of the three changes to HIV testing methods. We (...) performed a qualitative analysis of the participant responses in the interviews and summarized the major themes. Results: In general, arguments in favor of the methods were based upon their ultimate contribution to increasing HIV testing and permitting the consequent benefits of identifying those who are HIV infected and linking them to further care. Conclusions: The prevailing theme of ethical concern focused on suspicions that the methods might not be properly implemented, and that further safeguards might be needed. (shrink)

In ‘Three Arguments Against Prescription Requirements’, Jessica Flanigan argues that ‘prescription drug laws violate patients' rights to self-medication’ and that patients ‘have rights to self-medication for the same reasons they have rights to refuse medical treatment according to the doctrine of informed consent , claiming that the strongest of these reasons is grounded on the value of autonomy. However, close examination of the moral value of autonomy shows that rather than being the strongest justification for the DIC, respect (...) for the value of autonomy is actually the weakest, and it is dependent upon the first two well-being-based justifications for the DIC. Recognising this has important implications for Flanigan's argument against prescription requirements. (shrink)

A legitimate moral justification has to be given by justifying a norm to everyone. Achieving unanimity about norms is a moral correctness criterion for certain contract theories. What exactly is meant by unanimity? Most contract theorists quickly agree that unanimity, understood as the explicit factual agreement of everyone to a norm candidate, is de facto impossible to achieve. It is stated that the following types of consent can replace de facto unanimous consent: a) majority consent; b) (...) rational consent, c) consent based on self-interest, d) consent based on transcendental interests and e) consent based on undisputed moral principles. I want to show that unanimous consent cannot be achieved in any of these ways, and if you claim that moral norms are based on unanimity or that there are no moral norms, then you have to dismiss morality. (shrink)

In ‘Treating Adolescents Differently’, Skelton, Black, and Forsberg develop their wellbeing-based justification of the asymmetrical treatment of adolescent consent and refusal in the context of health care to justify the differential and paternalistic treatment of adolescents more generally. The core of the Skelton, Black, and Forsberg’s view is a variabilist theory of what is fundamentally and non-instrumentally prudentially good for adolescents, which includes the prudential value of what they call shielding—or the value of being insulated from full (...) responsibility for their choices. This theory of wellbeing, they argue, explains why adolescents may be treated differential and paternalistically in numerous domains. It is good for them to be shielded because it allows for a variety of freedom from making certain kinds of decisions in the absence of a safety net provided by others in supportive and caring relationships. Skelton, Black, and Forsberg argue that their account of the justification of differential and paternalistic treatment of adolescents has attractive implications for a range of cases and holds up well in the face of philosophical criticism. (shrink)

In medizinethischen Kontexten bezeichnet der Ausdruck „Odysseus-Verträge“ Selbstbindungen, die in der vorausschauenden Bitte von Patienten an ihre Ärzte bestehen, eigene spätere Behandlungspräferenzen nicht zu befolgen. Umstritten ist jedoch, ob eine vorhergehende Anweisung ein Handeln gegen den Patientenwillen in der aktualen Behandlungssituation rechtfertigt. In diesem Beitrag wird die Frage nach der Verbindlichkeit von Odysseus-Anweisungen erörtert. Zunächst wird gezeigt, dass die Befolgung einer Odysseus-Anweisung eine Form des paternalistischen Handelns darstellt und die Frage nach der Verbindlichkeit von Odysseus-Anweisungen daher in diejenige nach der (...) Rechtfertigung paternalistischen Handelns zu überführen ist . Im Folgenden wird als Rechtfertigungsmodell für paternalistisches Handeln ein Zustimmungsmodell verteidigt , dem zufolge eine paternalisierende Maßnahme durch die antizipierte spätere Zustimmung des Patienten zu dieser Maßnahme gerechtfertigt wird . Nach einer Erörterung des Einwandes, dass damit die besonderen normativen Probleme von Odysseus-Anweisungen aus dem Blick geraten , werden abschließend Fälle untersucht, in denen aufgrund eines irreversiblen Kompetenzverlustes keine spätere Zustimmung zur paternalisierenden Maßnahme mehr möglich ist. In diesen Fällen, so die These, ist ein paternalistisches Handeln gegen den aktualen Patientenwillen nicht gerechtfertigt; kommt es hier also zu einem Konflikt zwischen dem in der Vorausverfügung dokumentierten und dem aktualen Patientenwillen, ist letzterer zu respektieren .In the context of medical ethics, the term „Ulysses contract“ denotes an advance directive by means of which a patient binds himself for the future by instructing a doctor to act against his foreseen future preferences. There is some controversy, however, about whether a person’s prior decisions should be regarded as mandatory for the doctor even when they conflict with her present desires. In this contribution, I address the questions whether and under what circumstances Ulysses instructions should be regarded as binding. In Part , I attempt to show that observing a Ulysses instruction means acting paternalistically and that therefore the question whether Ulysses contracts ought to be respected should be transformed into the question how paternalistic action can be justified. Parts and are concerned with the justification of paternalistic action. On the basis of a conception of welfare as being tied to the person’s interests and preferences, I defend a consent-based model of justification . More specifically, I suggest that the patient’s anticipated later consent to a precedent paternalistic action should count as its justification . In what follows, I attempt to rebut the objection that this account does not do justice to the specific normative problems of Ulysses contracts . Finally, I examine cases in which, due to an irreversible loss of competence, a paternalistic action cannot be assented to by the patient. I argue that in these cases, acting against the patient’s present wishes cannot be justified. If in such a case a patient’s present request runs contrary to the past request expressed in the advance directive, the former should be respected. (shrink)

Informed consent is considered by many to be a moral imperative in medical research. However, it is increasingly acknowledged that in many actual instances of consent to participation in medical research, participants do not employ the provided information in their decision to consent, but rather consent based on the trust they hold in the researcher or research enterprise. In this article we explore whether trust-based consent is morally inferior to information-based consent. (...) We analyse the moral values essential to valid consent – autonomy, voluntariness, non-manipulation, and non-exploitation – and assess whether these values are less protected and promoted by consent based on trust than they are by consent based on information. We find that this is not the case, and thus conclude that trust-based consent if not morally inferior to information-based consent. (shrink)

This chapter argues that the same logic that imbues the state with the legitimate authority to punish also imposes restraints on that authority. It suggests that scholarship on punishment puts more emphasis on the political legitimacy of state punishment rather than on the moral question of what is deserved by criminals. It turns to Rousseau's social contract based justification for punishment as a crucial resource in that effort. It begins by closely examining Rousseau's claim that the criminal consents (...) to punishment, and by suggesting that his seemingly absurd and perverse claims are actually defensible. It goes on to clarify two senses in which Rousseau's understanding of consent serves to ground the rights of the guilty. First, it argues that the idea of consent itself legitimizes some punishment but also sets strict limits on when and how the state can punish. Second, it argues that Rousseau's account of welfare rights also sets a limit on when the state may rightfully punish. The final two sections of the chapter consider the role of punishment outside the social contract in Rousseau's theory and suggest an important contrast between Rousseau's and Hobbes's conceptions of punishment. (shrink)

Justifying intellectual property on the basis of labour is an understandably popular strategy, but there is a tension in basing some intellectual property claims on labour that has gone largely unnoticed in treatments of the subject: many forms of innovation cause people to lose their jobs, which seriously hampers the ability of those who lose work to productively use their own labour. This article shows that even under Lockean and other labour‐based justifications of intellectual property rights those who claim (...) property rights to innovations of this type have special obligations to compensate those who lose work because of their inventions. By examining the problem that such innovations create, I hope to contribute to larger debates about automation and the job losses it often brings. Lockean and other labour‐based theories of intellectual property are generally taken to secure strong, noninstrumental rights to intellectual property if they are successful. So, if even these theories imply that those who profit from the innovations driving automation have special obligations to those left jobless by it, that is strong evidence that they do in fact have such obligations. (shrink)

The ‘family consent’ process has been placed at the centre of Chinese clinical practice. Although there has been critical analysis of how the process functions in relation to the autonomy and rights of patients, there has been little examination of the perceptions and attitude of patients and their families and the medical professionals, in relation to moral dilemmas that arise in real cases in the bioethical discourse. When faced with a consent form in an emergency situation, the family (...) member's capacity to act is reduced, as he/she becomes enmeshed in the hospital structure of tacit, socially-imposed rules. In a questionnaires based on a real death case in 2008, 70.9% of the surveyed medical professionals (n = 3,665) disagreed with performing surgery without the consent of the family even if the patient's life was in danger, while 36.6% of the surveyed patients (n = 1,198) hold the same position. This work demonstrates the weakness of the family consent process as a safeguard of patient's autonomy. Finally, I argue that saving the patient's life should be the overriding obligation rather than the respect for the surrogate's autonomous choice at such a decisive moment. (shrink)

Journal of Social Philosophy, EarlyView.

Hypothetical contracts have been said to be not worth the paper they are not written on. This paper defends hypothetical consent theories of justice, such as Rawls's, against the view that they lack justificatory power. I argue that while hypothetical consent cannot generate political obligation, it can generate political legitimacy.

I defend a modified rights-based unjust threat account for morally justified killing in self-defense. Rights-based moral justifications for killing in self-defense presume that human beings have a right to defend themselves from unjust threats. An unjust threat account of self-defense says that this right is derived from an agent’s moral obligation to not pose a deadly threat to the defender. The failure to keep this moral obligation creates the moral asymmetry necessary to justify a defender killing the unjust (...) threat in self-defense. I argue that the other rights-based approaches explored here are unfair to the defender because they require her to prove moral fault in the threat. But then I suggest that the unjust threat account should be modified so that where the threat is non-culpable or only partially culpable, the defender should seek to share the cost and risk with the threat in order for both parties to survive. (shrink)

Scholars disagree about the proper justification of human rights and which rights qualify as human rights. While some argue for a very limited set of human rights, others defend more comprehensive accounts. In this paper I suggest that a defence of a comprehensive set of human rights can be strengthened by combining constructivist deontological and well-being based teleological justifications. To this end, I discuss two prominent proponents of constructivism and the well-being approach: Rainer Forst and Simon Caney. Forst (...) criticises teleological justifications for grounding human rights in non-universalizable conceptions of the good, such as autonomy, that can reasonably be rejected by others. Constructivism, in contrast, does not rest on any particular idea of the good life and thus allows for greater ethical plurality. I reject this specific criticism, arguing that Caney’s approach ultimately allows for the same plurality. I also highlight that constructivism on its own cannot justify rights of people who are not (yet) able to reason. The well-being approach provides substantive arguments for the rights of these individuals. However, these arguments are made with the framework provided by constructivism. I hold, contra Caney, that Forst’s right to justification is primary in that it is the unavoidable basis from which justice issues can be dealt with in a reasonable way and that the main function of human rights is to protect the equal moral status of persons. I conclude that Forst’s constructivist and Caney’s well-being approach are complementary rather than rivalrous: when combined they provide a more robust justification for a comprehensive set of human rights than considered separately. (shrink)

Background The principles of dynamic consent are based on the idea of safeguarding the autonomy of individuals by providing them with personalized options to choose from regarding the sharing and utilization of personal health data. To facilitate the widespread introduction of dynamic consent concepts in practice, individuals must perceive these procedures as useful and easy to use. This study examines the user experience of a dynamic consent-based application, in particular focusing on personalized options, and explores (...) whether this approach may be useful in terms of ensuring the autonomy of data subjects in personal health data usage. Methods This study investigated the user experience of MyHealthHub, a dynamic consent-based application, among adults aged 18 years or older living in South Korea. Eight tasks exploring the primary aspects of dynamic consent principles–including providing consent, monitoring consent history, and managing personalized options were provided to participants. Feedback on the experiences of testing MyHealthHub was gathered via multiple-choice and open-ended questionnaire items. Results A total of 30 participants provided dynamic consent through the MyHealthHub application. Most participants successfully completed all the provided tasks without assistance and regarded the personalized options favourably. Concerns about the security and reliability of the digital-based consent system were raised, in contrast to positive responses elicited in other aspects, such as perceived usefulness and ease of use. Conclusions Dynamic consent is an ethically advantageous approach for the sharing and utilization of personal health data. Personalized options have the potential to serve as pragmatic safeguards for the autonomy of individuals in the sharing and utilization of personal health data. Incorporating the principles of dynamic consent into real-world scenarios requires remaining issues, such as the need for powerful authentication mechanisms that bolster privacy and security, to be addressed. This would enhance the trustworthiness of dynamic consent-based applications while preserving their ethical advantages. (shrink)

An abundance of data unequivocally shows that exercise can be an effective tool in the fight against obesity and its associated co-morbidities. Indeed, physical activity can be more effective than widely-used pharmaceutical interventions. Whilst metformin reduces the incidence of diabetes by 31% (as compared with a placebo) in both men and women across different racial and ethnic groups, lifestyle intervention (including exercise) reduces the incidence by 58%. In this context, it is notable that a group of prominent medics and exercise (...) scientists recently sent a well-publicised letter to the General Medical Council and Medical Schools Council calling for the introduction of evidence-based lifestyle education into all medical curricula. The letter warns that there is a lack of understanding of the impact that exercise and nutrition can have on physical health amongst doctors. In the absence of an educational overhaul, the signatories warn that the government is likely to fail to reach its goal of preventing tens of thousands of premature deaths from heart disease and cancer by 2020. Whilst we agree with the need to address this apparent lack of understanding, we argue that the ethical justification of doing so is not limited to this broadly beneficence-based justification. There is also a justification grounded in the duty of non-maleficence, that is, the duty to avoid unreasonably harming patients. This duty requires that doctors refrain from (i) preventing patients from undergoing beneficial treatment without good reason, (ii) exposing patients to unreasonable risks and (iii) reducing the therapeutic effect of an effective medical intervention. This requires an understanding of the physical impact of exercise. (shrink)

The claim that indigenous communities are entitled to have intellectual property rights (IPRs) to both their plant varieties and their botanical knowledge has been put forward by writers who wish to protect the plant genetic resources of indigenous communities from uncompensated use by biotechnological transnational corporations. We argue that while it is necessary for indigenous communities to have suchrights, the entitlement argument is an unsatisfactory justification for them. A more convincing foundation for indigenous community IPRs is the autonomy theory (...) developed by Will Kymlicka. (shrink)

Adolescents are routinely treated differently to adults, even when they possess similar capacities. In this article, we explore the justification for one case of differential treatment of adolescents. We attempt to make philosophical sense of the concurrent consents doctrine in law: adolescents found to have decision-making capacity have the power to consent to—and thereby, all else being equal, permit—their own medical treatment, but they lack the power always to refuse treatment and so render it impermissible. Other parties, that (...) is, individuals who exercise parental responsibility or a court, retain the authority to consent on an adolescent’s behalf. We explore four defences of the doctrine. We reject two attempts to defend the asymmetry in the power to consent to and refuse medical treatment by reference to transitional paternalism. We then consider and reject a stage of life justification. Finally, we articulate a justification based on the distinctiveness of adolescent well-being. (shrink)

This paper demonstrates that a rationale for a circumscribed form of desire-based justification can be developed out of a contemporary Kantian account as a natural extension of that account. It maintains that certain of Christine Korsgaard's recent arguments establish only that desires must have certain features antithetical to instrumentalism in order to justify. Other arguments purport to establish the standard (stronger) result: that because desires do not have these features, they cannot justify. Her arguments for this strong result, (...) it contends, cannot be reconciled with central commitments in her epistemology and philosophy of mind. The consistent implementation of these commitments opens up a surprising space within what is still readily recognizable as a Kantian ethics--the space for desire-based justification. (shrink)

On a traditional interpretation of the substituted judgement standard a person who makes treatment decisions on behalf of a non-competent patient ought to decide as the patient would have decided had she been competent. I propose an alternative interpretation of SJS in which the surrogate is required to infer what the patient actually thought about these end-of-life decisions. In clarifying SJS it is also important to differentiate the patient's consent and preference. If SJS is part of an autonomy ideal (...) of the sort found in Kantian ethics, consent seems more important than preference. From a utilitarian perspective a preference-based reading of SJS seems natural. I argue that the justification of SJS within a utilitarian framework will boil down to the question whether a non-competent patient can be said to have any surviving preferences. If we give a virtue-ethical justification of SJS the relative importance of consent and preferences depends on which virtue one stresses-respect or care. I argue that SJS might be an independent normative method for extending the patient's autonomy, both from a Kantian and a virtue ethical perspective. (shrink)

Peter Stemmer advocates a new foundation of morality. He claims that any moral principle is justified only if every person to whom the principle applies consents to it on the basis of his or her own interests. But how can this ‘metanorm’ of unanimous consent be justified? Since Stemmer decisively rejects all objectivist foundations of morality, the only justification for his ‘metanorm’ can again be nothing but a unanimous consent. Through numerous examples I hope to have shown (...) in my article that the alleged connexion of all our moral demands with a general, unanimous consent is not realistic – no matter whether these demands are based on our spontaneous or on our well considered attitudes. And this holds no less for legal norms with their hard sanctions than for moral principles. (shrink)

The use of placebo as a control condition in clinical trials of major depressive disorder and anxiety disorders continues to be an area of ethical concern. Typically, opponents of placebo controls argue that they violate the beneficent-based, “best proven diagnostic and therapeutic method” that the original Helsinki Declaration of 1964 famously asserted participants are owed. A more consequentialist, oppositional argument is that participants receiving placebo might suffer enormously by being deprived of their usual medication(s). Nevertheless, recent findings of potential (...) for suicidality in young people treated with antidepressants, along with meta-analyses suggesting that antidepressants add no significant clinical benefit over placebos, warrant a re-evaluation of the arguments against placebo. Furthermore, the nature of placebo treatment in short-term clinical trials is often not well understood, and lack of understanding can foster opposition to it. This paper will show how scientific justifications for placebo use are morally relevant. The fundamental ethical importance of placebo controls is discussed in relation to several aspects of clinical trials, including detection of adverse events, accurate assessment of clinical benefit, advancing understanding of the heterogeneity of depression and anxiety disorders and respecting informed consent requirements. Prohibiting the use of placebo controls is morally concerning in that such prohibitions allow for the possibility of serious adverse public health consequences. Moral worries that research participants receiving placebo are being unduly jeopardised will be shown to be exaggerated, especially in relation to the net benefits for end-users to be gained from the quality of data resulting from using placebo controls. (shrink)