In recent years, discussion around memory modification interventions has gained attention. However, discussion around the use of memory interventions in the criminal justice system has been mostly absent. In this paper we start by highlighting the importance memory has for human well-being and personal identity, as well as its role within the criminal forensic setting; in particular, for claiming and accepting legal responsibility, for moral learning, and for retribution. We provide examples of memory interventions that are currently available for medical (...) purposes, but that in the future could be used in the forensic setting to modify criminal offenders’ memories. In this section we contrast the cases of dampening and enhancing memories of criminal offenders. We then present from a pragmatic approach some pressing ethical issues associated with these types of memory interventions. The paper ends up highlighting how these pragmatic considerations can help establish ethically justified criteria regarding the possibility of interventions aimed at modifying criminal offenders’ memories. (shrink)

Drawing on Lennart Nordenfelt’s distinction between the four distinct senses of dignity, I elucidate the meaning of dignity in the context of research involving human subjects. I acknowledge that different interpretations of the personal senses of dignity may be acceptable in human subject research, but that inherent dignity (Menschenwürde) is not open to interpretation in the same way. In order to map out the grounds for interpreting dignity, I examine the unique application of the principle of respect for dignity in (...) Canada’s research ethics guidelines. These guidelines are unique because they consider dignity to be a foundational concept and the protection of the dignity of research subjects is regarded as a measure that prevents “the impoverishment of humanity as a whole”. While the conception of humanity invoked here is incomplete, Canada’s research ethics guidelines nevertheless represent a more European approach to biomedical policy. Finally, in order to correct a pervasive blind spot in contemporary policy on research involving human subjects, I sketch a functional model for attributing inherent dignity that avoids the untenable connotations of speciesism. (shrink)

The patient–physician relationship is of primary importance for medical ethics, but it also teaches broader lessons about ethics generally. This is particularly true for the philosopher Emmanuel Levinas whose ethics is grounded in the other who “faces” the subject and whose suffering provokes responsibility. Given the pragmatic, situational character of Levinasian ethics, the “face of the other” may be elucidated by an analogy with the “face of the patient.” To do so, I draw on examples from Martin Winckler’s fictional physician (...) narratives. In addition, I explore how the standpoint of the physician conceals a related but often unacknowledged dimension of care: the obligation to nurse. For both nurse and physician, one question encapsulates Levinas’ medical ethics: “What does the patient say?” Using this as my guiding question, I examine the context within which physician, nurse, and patient meet in order to highlight their shared vulnerability and the care relationship that binds them together. (shrink)

We aim, in this paper, to discuss how far the ethical framework for assessing medical research, generalized into other institutional settings, is also appropriate for social science research, particularly qualitative research. Recently, researchers have raised concerns about ‘ethics creep’, incompatibility with participatory methodologies and the exclusion of service users. Researchers are increasingly raising questions as to whether the processes of governance and the paradigmatic assumptions pervading research ethics committees are fit for purpose when they deliberate on non-clinical research that uses (...) social science methods. We review whether ethical scrutiny by research ethics committees is asking the wrong questions and holding research to the wrong standards. (shrink)

Women recognise that labour represents a mind-altering event that may affect their ability to make and communicate decisions and choices. For this reason, birth plans and other pre-labour directives can represent a form of Ulysses contract: an attempt to make binding choices before the sometimes overwhelming circumstances of labour. These choices need to be respected during labour, but despite the reduced decisional and communicative capacity of a labouring woman, her choices, when clear, should supersede decisions made before labour.

This article presents the first thematic review of the literature on the ethical issues concerning digital well-being. The term ‘digital well-being’ is used to refer to the impact of digital technologies on what it means to live a life that is good for a human being. The review explores the existing literature on the ethics of digital well-being, with the goal of mapping the current debate and identifying open questions for future research. The review identifies major issues related to several (...) key social domains: healthcare, education, governance and social development, and media and entertainment. It also highlights three broader themes: positive computing, personalised human–computer interaction, and autonomy and self-determination. The review argues that three themes will be central to ongoing discussions and research by showing how they can be used to identify open questions related to the ethics of digital well-being. (shrink)

This article presents the first thematic review of the literature on the ethical issues concerning digital well-being. The term ‘digital well-being’ is used to refer to the impact of digital technologies on what it means to live a life that isgood fora human being. The review explores the existing literature on the ethics of digital well-being, with the goal of mapping the current debate and identifying open questions for future research. The review identifies major issues related to several key social (...) domains: healthcare, education, governance and social development, and media and entertainment. It also highlights three broader themes: positive computing, personalised human–computer interaction, and autonomy and self-determination. The review argues that three themes will be central to ongoing discussions and research by showing how they can be used to identify open questions related to the ethics of digital well-being. (shrink)

Developing technology that accounts for values has been achieved in many areas, including security, gaming, finance, engineering, and many more. The main methodological approach has been that of value sensitive design. But most of the work to date has been on the first of its three stages. The focus of this article is on advances related to its second stage, empirical investigation, and in particular the impact of contextual understanding in that stage. Although lessons can be learnt from other domains, (...) the specific context of dementia means that there are nuances to understanding values, including justice and autonomy, that differ from other areas. The integration of value considerations in the development of assistive technology in dementia is explored in two broad categories: the traditional and ongoing need for fixed decision support, and adaptable decision support technologies. For fixed decision support the A&D Benchmark is particularly useful in design. But for adaptable technologies, that benchmark requires further development, including consideration of the values of additional stakeholders, such as the general public. (shrink)

Leiter (2016) charges public philosophy with being “neoliberal”. To understand that charge better, I define, in §1, three versions of public philosophy which might be concerned and two pictures of its practice targeted by Leiter. I also compare two deliberative sites wherein those pictures may play out. In §2, I sketch how Leiter’s two paradoxes for “neoliberal” public philosophy lead to a revised public philosophy. §3 questions the paradoxes’ empirical grounding and scope. Lastly, in §4, I assume Leiter’s picture and (...) illustrate how philosophical dialogue, through appeal to personal self-image and “moral perceptions”, may still influence public discourse. I conclude that Leiter both over- and understates his case and that his conclusions require greater scrutiny. (shrink)

Patientenselbstbestimmung und Patientenverfügungen haben zunehmende Bedeutung und Beachtung erfahren. In der vorliegenden qualitativen Studie wurden 15 Patientinnen und Patienten mit amyotropher Lateralsklerose —einer unheilbaren, chronisch-degenerativen Erkrankung mit vorhersehbarer Symptomatik—interviewt, um zu erfahren, welche Werte und Kriterien sie bei prospektiven Entscheidungen am Lebensende und bei der Abfassung von PV zugrunde legen. Die Auswertung erfolgte nach der Methode der „grounded theory“. Die befragten Patientinnen und Patienten befürworteten einen Verzicht auf lebenserhaltende Behandlungen, wenn sie keine hinreichenden Lebensmöglichkeiten mehr sahen, d. h. wenn sie (...) die aktuelle Lebensqualität für unzureichend erachteten und die Chance auf Besserung als gering einschätzten. Dem Patientenwillen sprachen sie bei der Entscheidungsfindung ein Vetorecht zu. Patientenverfügungen fassten sie erst ab, als sie keine Hoffnung mehr auf Besserung ihrer Erkrankung hatten. Sie verstanden diese als Instrumente zur vorsorglichen Erklärung ihres Wunsches, auf lebensverlängernde Maßnahmen zu verzichten, wenn die LM inakzeptabel geworden sind. Damit wollten sie sich gegenüber dem Arzt absichern, den sie in der Rolle eines Anwalts des Lebens sahen und mit dem sie daher ihre Behandlungswünsche nicht besprochen haben. Trotz vorhersehbarer Symptomatik legten sie in ihren PV keine spezifischen Behandlungswünsche nieder, sondern verwendeten allgemeine Formularmuster ohne konkreten Bezug zu ihrer Erkrankung. Daher bestehen auch bei dieser Patientengruppe Zweifel, ob die PV in einer konkreten Behandlungssituation hilfreich sind. (shrink)

Patientenselbstbestimmung und Patientenverfügungen (PV) haben zunehmende Bedeutung und Beachtung erfahren. In der vorliegenden qualitativen Studie wurden 15 Patientinnen und Patienten mit amyotropher Lateralsklerose (ALS)—einer unheilbaren, chronisch-degenerativen Erkrankung mit vorhersehbarer Symptomatik—interviewt, um zu erfahren, welche Werte und Kriterien sie bei prospektiven Entscheidungen am Lebensende und bei der Abfassung von PV zugrunde legen. Die Auswertung erfolgte nach der Methode der „grounded theory“. Die befragten Patientinnen und Patienten befürworteten einen Verzicht auf lebenserhaltende Behandlungen, wenn sie keine hinreichenden Lebensmöglichkeiten (LM) mehr sahen, d. h. (...) wenn sie die aktuelle Lebensqualität für unzureichend erachteten und die Chance auf Besserung als gering einschätzten. Dem Patientenwillen sprachen sie bei der Entscheidungsfindung ein Vetorecht zu. Patientenverfügungen fassten sie erst ab, als sie keine Hoffnung mehr auf Besserung ihrer Erkrankung hatten. Sie verstanden diese als Instrumente zur vorsorglichen Erklärung ihres Wunsches, auf lebensverlängernde Maßnahmen zu verzichten, wenn die LM inakzeptabel geworden sind. Damit wollten sie sich gegenüber dem Arzt absichern, den sie in der Rolle eines Anwalts des Lebens sahen und mit dem sie daher ihre Behandlungswünsche nicht besprochen haben. Trotz vorhersehbarer Symptomatik legten sie in ihren PV keine spezifischen Behandlungswünsche nieder, sondern verwendeten allgemeine Formularmuster ohne konkreten Bezug zu ihrer Erkrankung. Daher bestehen auch bei dieser Patientengruppe Zweifel, ob die PV in einer konkreten Behandlungssituation hilfreich sind. (shrink)

As noninvasive prenatal testing is being implemented as a first-trimester prenatal screening modality in healthcare systems around the world, it raises ethical concerns. In theory, NIPT allo...

Medical practitioners are duty-bound to tell their patients the truth about their medical conditions, along with the risks and benefits of proposed treatments. Some patients, however, would rather not receive medical information. A recent response to this tension has been to argue that that the disclosure of medical information is not optional. As such, patients do not have permission to refuse medical information. In this paper I argue that, depending on the context, the disclosure of medical information can undermine the (...) patient’s ability to exercise her autonomy or have therapeutically detrimental effects. In the light of these insights I go on to develop a context-sensitive approach to medical disclosure. The advantage of this account is that it addresses concerns on both sides of the debate; whilst it acknowledges that patients do not have an exercisable ‘right not to know,’ it allows that in some cases medical information ought to be withheld. (shrink)

In medical practice, the doctrine of informed consent is generally understood to have priority over the medical practitioner’s duty of care to her patient. A common consequentialist argument for the prioritisation of informed consent above the duty of care involves the claim that respect for a patient’s free choice is the best way of protecting that patient’s best interests; since the patient has a special expertise over her values and preferences regarding non-medical goods she is ideally placed to make a (...) decision that will protect her interests. In this paper I argue against two consequentialist justifications for a blanket prioritisation of informed consent over the duty of care by considering cases in which patients have imperfect access to their overall best interests. Furthermore, I argue that there are cases where the mere presentation of choice under the doctrine of informed consent is detrimental to patient best interests. I end the paper by considering more nuanced approaches to resolving the conflict between informed consent and the duty of care and consider the option of permitting patients to waive informed consent. (shrink)

The degree and nature of patient involvement in consultations with health professionals influences problem and needs recognition and management, and public accountability. This paper suggests a framework for understanding the scope for patient involvement in such consultations. Patients are defined as co-producers of formal health services, whose potential for involvement in consultations depends on their personal rights, responsibilities and preferences. Patients' rights in consultations are poorly defined and, in the National Health Service (NHS), not legally enforceable. The responsibilities of patients (...) are also undefined. I suggest that these are not to deny, of their own volition, the rights of others, which in consultations necessitate mutuality of involvement through information-exchange and shared decision-making. Preferences should be met insofar as they do not militate against responsibilities and rights. (shrink)

Person-centered care offers a promising way to manage clinicians’ conscientious objection to providing services they consider morally wrong. Health care centered on persons, rather than patients, recognizes clinicians and patients on the same stratum. The moral interests of clinicians, as persons, thus warrant as much consideration as those of other persons, including patients. Interconnected moral interests of clinicians, patients, and society construct the clinician as a socially embedded and integrated self, transcending the simplistic duality of private conscience versus public role (...) expectations. In this milieu of blurred boundaries, person-centered care offers a constructive way to accommodate conscientious objection by clinicians. The constitutionally social nature of clinicians commits and enables them, through care mechanisms such as self-care, to optimize the quality of health care and protect the welfare of patients. To advance these conditions, it is recommended that the medical profession develop a person-centered culture of care, along with clinician virtues and skills for person-centered communication. (shrink)

BackgroundThis article aims to contribute to a better conceptualization of pain and suffering by providing non-essential and non-naturalistic definitions of both phenomena. Contributions of classical evidence-based medicine, the humanistic turn in medicine, as well as the phenomenology and narrative theories of suffering and pain, together with certain conceptions of the person beyond them are critically discussed with such purpose.MethodsA philosophical methodology is used, based on the review of existent literature on the topic and the argumentation in favor of what are (...) found as better definitions of suffering and pain.ResultsPain can be described in neurological terms but cognitive awareness, interpretation, behavioral dispositions, as well as cultural and educational factors have a decisive influence on pain perception. Suffering is proposed to be defined as an unpleasant or even anguishing experience, severely affecting a person at a psychophysical and existential level. Pain and suffering are considered unpleasant. However, the provided definitions neither include the idea that pain and suffering can attack and even destroy the self nor the idea that they can constructively expand the self; both perspectives can b e equally useful for managing pain and suffering, but they are not defining features of the same. Including the existential dimension in the definition of suffering highlights the relevance of suffering in life and its effect on one’s own attachment to the world. An understanding of pain and suffering life experiences is proposed, meaning that they are considered aspects of a person’s life, and the self is the ever-changing sum of these experiences.ConclusionsThe provided definitions will be useful to the identification of pain and suffering, to the discussion of how to relieve them, and to a better understanding of how they are expressed and experienced. They lay the groundwork for further research in all these areas, with the twofold aim of a) avoiding epistemological mistakes and moral injustices, and b) highlighting the limitations of medicine in the treatment of suffering and pain. (shrink)

Die bei Krebserkrankungen junger Frauen erforderliche Chemo- bzw. Strahlentherapie kann in der Folge bei den betroffenen Patientinnen zur Unfruchtbarkeit führen. Somit werden die Betroffenen oft gleichzeitig mit einer potentiell lebensbedrohlichen Erkrankung und einem potentiell kinderlosen Leben konfrontiert. Die derzeitigen Methoden zum Erhalt der Fertilität sind experimentell, mit therapeutischer Unsicherheit und gesundheitlichen Risiken belastet, dennoch werden sie zunehmend nachgefragt. Die mit dem Angebot fertilitätserhaltender Maßnahmen verbundene derzeitige Beratungspraxis wird in dem hier vorliegenden Beitrag aus ethischer Perspektive hinterfragt. Ausgehend von einer kritischen (...) Würdigung des nach wie vor häufig angewandten Autonomiekonzepts von Beauchamp und Childress wird diskutiert, auf welche Weise die normative Belastbarkeit der Entscheidungsfindung durch die Vulnerabilität der Patientin limitiert sein kann. Als Alternative zum Autonomiekonzept von Beauchamp und Childress wird anschließend eine Entscheidungsfindung auf der Grundlage biographischer Identität in Anlehnung an das Konzept der personalen Autonomie nach Quante erörtert. (shrink)

Problems posed by HIV/AIDS differ from those ofpast epidemics by virtue of unique propertiesof the causative agent, dramatic societalchanges of the late 20th century, and thetransition of medical practice from aprofessional ethic to a technology-dependentbusiness ethic. HIV/AIDS struck during thecoming-of-age of molecular biology and also ofbioethics, and the epidemic stimulated thegrowth of both disciplines. The number ofarticles published about AIDS and ethics (asidentified by a MEDLINE search) peaked in 1990,just before the peak incidence of AIDS in theUnited States. The character (...) of ethicaldialogue has now shifted from familiar moralquandaries such as civil liberty versus publicwelfare to concerns about vaccine trials andpublic policy toward the developing world.Physicians and other health care workers whowere involved from the onset endured somethingof an emotional roller coaster. Theircompassion-based work ethic was to a largeextent replaced by a competence-based workethic after the introduction in 1996 of highlyactive antiretroviral therapy. The abundantrecent literature on ``professionalism'' inmedicine makes scant mention of AIDS/HIV. Thedisruptive effect of AIDS/HIV on society wouldhave been substantially greater had relevanttechnology such as the ability to isolateretroviruses and potent therapy againsttuberculosis not been in place. This soberingconsideration, along with such recent events asthe use of bioterrorism against civilianpopulations, suggests new relevance forPotter's definition of ``bioethics'' as a scienceof survival in which the biology of ecosystemsmust be taken into account. (shrink)

Douglas Diekema has argued that it is not the best interest standard, but the harm principle that serves as the moral basis for ethicists, clinicians, and the courts to trigger state intervention to limit parental authority in the clinic. Diekema claims the harm principle is especially effective in justifying state intervention in cases of religiously motivated medical neglect in pediatrics involving Jehovah’s Witnesses and Christian Scientists. I argue that Diekema has not articulated a harm principle that is capable of justifying (...) state intervention in these cases. Where disagreements over appropriate care are tethered to metaphysical disagreements, it is moral-metaphysical standards, rather than merely moral standards, that are needed to provide substantive guidance. I provide a discussion of Diekema’s harm principle to the broader end of highlighting an inconsistency between the theory and practice of secular bioethics when overriding religiously based medical decisions. In a secular state, ethicists, clinicians, and the courts are purportedly neutral with respect to moral-metaphysical positions, especially regarding those claims considered to be religious. However, the practice of overriding religiously based parental requests requires doffing the mantle of neutrality. In the search for a meaningful standard by which to override religiously based parental requests in pediatrics, bioethicists cannot avoid some minimal metaphysical commitments. To resolve this inconsistency, bioethicists must either begin permitting religiously based requests, even at the cost of children’s lives, or admit that at least some moral-metaphysical disputes can be rationally adjudicated. (shrink)

This article describes and rejects three standard views of reason in secular clinical ethics. The first, instrumental reason view, affirms that reason may be used to draw conceptual distinctions, map moral geography, and identify invalid forms of argumentation, but prohibits recommendations because reason cannot justify any content-full moral or metaphysical commitments. The second, public reason view, affirms instrumental reason, and claims ethicists may make recommendations grounded in the moral and metaphysical commitments of bioethical consensus. The third, comprehensive reason view, also (...) affirms instrumental reason, but encourages ethicists to make recommendations grounded in the moral and metaphysical commitments of their private worldviews. A compatibilist view of public reason is then defended, which holds that each standard view captures an important role for reason in different aspects of secular clinical ethics. The article ends by identifying three implications for enduring theoretical debates in clinical ethics. (shrink)

What is the proper role of a clinical ethics consultant’s religious beliefs in forming recommendations for clinical ethics consultation? Where Janet Malek has argued that religious belief should have no influence on the formation of a CEC’s recommendations, Clint Parker has argued a CEC should freely appeal to all their background beliefs, including religious beliefs, in formulating their recommendations. In this paper, I critique both their views by arguing the position envisioned by Malek puts the CEC too far from religion (...) and the position envisioned by Parker puts the CEC too close. For a CEC to give recommendations about what is morally prohibited, permissible, or obligatory in the clinic, I propose a view of the CEC that is neither religious nor non-religious but quasi-religious. I argue that a quasi-religious approach avoids the problems of both religious and non-religious views while preserving their benefits. Additionally, a quasi-religious view resists the marginalization of “religious” traditions that occurs when secular ethicists come to think of their approach as somehow distinctly non-religious. (shrink)

Chronic disorders of consciousness, particularly the vegetative and the minimally conscious states, pose serious diagnostic challenges to neurologists and clinical psychologists. A look at the concept of “diagnosis” in medicine reveals its social construction: While medical categorizations are intended to describe facts in the real world, they are nevertheless dependent on conventions and agreements between experts and practitioners. For chronic disorders of consciousness in particular, the terminology has proven problematic and controversial over the years. Novel research utilizing functional brain imaging (...) has demonstrated that a substantial number of patients retain their capabilities to communicate by brain activity even when they are incapable of classic verbal and nonverbal responses due to the dysfunction of their motor behavior. Moreover, thorough diagnostic assessments constitute the foundations for suitable rehabilitation measures. Thus, ethical arguments support the claim that the potential of emerging methods for communication via brain activity should be evaluated comprehensively in patients with chronic disorders of consciousness, once the technological methodology for this endeavor progresses to a reliable and affordable stage. (shrink)

The aim of this study was to examine to what extent patients remained silent to the health care system after they experienced abusive or wrongful incidents in health care. Female patients visiting a women’s clinic in Sweden (n = 530) answered the Transgressions of Ethical Principles in Health Care Questionnaire (TEP), which was constructed to measure patients’ abusive experiences in the form of staff’s transgressions of ethical principles in health care. Of all the patients, 63.6% had, at some point, experienced (...) staff’s transgressions of ethical principles, and many perceived these events as abusive and wrongful. Of these patients, 70.3% had remained silent to the health care system about at least one transgression. This silence is a loss of essential feedback for the health care system and should not automatically be interpreted as though patients are satisfied. (shrink)

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

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)

The mere means principle says it is impermissible to treat someone as merely a means to someone else’s ends. I specify this principle with two conditions: a victim is used as merely a means if the victim does not want the treatment by the agent and the agent wants the presence of the victim’s body. This principle is a specification of the doctrine of double effect which is compatible with moral intuitions and with a restricted kind of libertarianism. An extension (...) of this mere means principle, where not only using but also considering someone as merely a means is immoral, can explain and unify other deontological principles: doing versus allowing, partiality in imperfect duties of beneficence, and the asymmetry of procreational duties. A loop trolley dilemma is often presented as a counterexample of the mere means principle, but I argue that this dilemma generates a moral illusion, comparable to perceptual illusions. (shrink)

It is widely agreed that the view of informed consent found in the regulations and guidelines struggles to keep pace with the ever-advancing enterprise of human subjects research. Over the last 10 years, there have been serious attempts to rethink informed consent so that it conforms to our considered judgments about cases where we are confident valid consent has been given. These arguments are influenced by an argument from Gopal Sreenivasan, which apparently shows that a potential participant's consent to research (...) participation can be perfectly valid even if she fails to understand the risk-benefit profile of the study. I argue that Sreenivasan's argument fails. The set of clinical trials that is supposed to be ethical in the face of this kind of ignorance is empty. However, I argue that his argument is nonetheless instructive in allowing us to identify three important but neglected areas for future conceptual research on informed consent. I close by arguing that research on these identified questions promises to yield a defensible view of consent, lessen the burden of ambiguity on researchers attempting to obtain consent to research participation, and facilitate socially valuable research. (shrink)

Prompted by developments in human genetics, a recurrent bioethical question concerns a person’s ‘right to know’ and ‘right not to know’ about genetic information held that is intrinsically related to or linked to them. In this paper, we will revisit the claimed rights in relation to two particular test cases. One concerns the rights of the 500,000 participants in UK Biobank whose biosamples, already having been genotyped, will now be exome sequenced, and the other concerns the rights of pregnant women (...) who undergo non-invasive prenatal testing —a simple blood test that can reveal genetic information about both a foetus and its mother. This two-part paper is in four principal sections. First, we sketch the relevant features of our two test cases. Secondly, we consider the significance of recent legal jurisprudence in the UK and Singapore. Thirdly, we consider how, the jurisprudence apart, the claimed rights might be grounded. Fourthly, we consider the limits on the rights. We conclude with some short remarks about the kind of genetically aware society that we might want to be and how far there is still an opportunity meaningfully to debate the claimed rights. (shrink)

The American Journal of Bioethics, Volume 12, Issue 6, Page 48-49, June 2012.

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

In der Medizinethik sind der Respekt vor der Patientenselbstbestimmung, das Nichtschadensgebot, das Handeln zum Wohl des Kranken und das Gerechtigkeitsgebot praxisrelevante Prinzipien. Anhand des Beispiels der Frühintervention und Akutbehandlung schizophrener Störungen wird aufgezeigt, dass es in der psychiatrischen Praxis zu einer Kollision dieser Prinzipien kommen kann. Der frühe Krankheitsbeginn und der häufig chronische Verlauf schizophrener Störungen führen zu großem Leid der Betroffenen und ihrer Angehörigen sowie zur ökonomischen Belastung der Solidargemeinschaft. Die negativen Folgen einer verzögerten Intervention stehen den Risiken der (...) Stigmatisierung sowie den möglichen Nebenwirkungen durch die psychotherapeutische oder psychopharmakologische Behandlung gegenüber. Es wird für eine an der konkreten Situation orientierte, lebensnahe und dynamische Ethik plädiert, die vom konkreten Fall aus diskutiert und verschiedene Perspektiven berücksichtigt – mit dem Ziel von einer Arztethik und Patientenethik zu einer Verantwortungspartnerschaft zu gelangen. (shrink)

ZusammenfassungIn der Medizinethik sind der Respekt vor der Patientenselbstbestimmung, das Nichtschadensgebot, das Handeln zum Wohl des Kranken und das Gerechtigkeitsgebot praxisrelevante Prinzipien. Anhand des Beispiels der Frühintervention und Akutbehandlung schizophrener Störungen wird aufgezeigt, dass es in der psychiatrischen Praxis zu einer Kollision dieser Prinzipien kommen kann. Der frühe Krankheitsbeginn und der häufig chronische Verlauf schizophrener Störungen führen zu großem Leid der Betroffenen und ihrer Angehörigen sowie zur ökonomischen Belastung der Solidargemeinschaft. Die negativen Folgen einer verzögerten Intervention stehen den Risiken der (...) Stigmatisierung sowie den möglichen Nebenwirkungen durch die psychotherapeutische oder psychopharmakologische Behandlung gegenüber. Es wird für eine an der konkreten Situation orientierte, lebensnahe und dynamische Ethik plädiert, die vom konkreten Fall aus diskutiert und verschiedene Perspektiven berücksichtigt – mit dem Ziel von einer Arztethik und Patientenethik zu einer Verantwortungspartnerschaft zu gelangen. (shrink)

Fulford’s discussion of ‘values-based practice’ as a model for medical ethics is deeply puzzling. First, it remains unclear what exactly he takes values to be or how tyhey can be based in clinical skills. Second, his proposal does not make it clear whose values these are supposed to be. I conclude that his attempt in effect to take the morality out of ethics fails.

Translational research in medicine requires researchers to identify the steps to transfer basic scientific discoveries from laboratory benches to bedside decision-making, and eventually into clinical practice. On a parallel track, philosophical work in ethics has not been obliged to identify the steps to translate theoretical conclusions into adequate practice. The medical ethicist A. Cribb suggested some years ago that it is now time to debate ‘the business of translational’ in medical ethics. Despite the very interesting and useful perspective on the (...) field of medical ethics launched by Cribb, the debate is still missing. In this paper, I take up Cribb’s invitation and discuss further analytic distinctions needed to base an ethics aiming to translate between theory and practice. (shrink)

Viewed in its entirety, moral philosophizing, and the moral behavior of people throughout history, presents a curious puzzle. On the one hand, interpersonal duties display a remarkably stable core content: morality the world over enjoins people to keep their word; refrain from violence, theft and cheating; and help those in need. On the other hand, the asserted motives that drive people’s moral actions evince a dazzling diversity: from empathy or sympathy, to practical or prudential reason, to custom and honor, cultural (...) identity, excellence and independence, faith and spirituality, narrative and beauty, and more besides. I term this twin phenomenon—a core of fixed moral duties driven by diverse motives—“moral motive pluralism.” In this article, I marshal evidence to show the prevalence of the phenomenon. Contrary to widespread assumptions, across generations and cultures, diverse motives drive different people to perform their moral duties. But despite this diversity, each different motive impels conscientious compliance with the same core moral duties. I argue this phenomenon undermines key types of evidence commonly employed to justify popular moral philosophies, and provides us with reason to seriously consider certain sorts of ethical theories—especially “functionalist” accounts of morality. (shrink)

Der Beitrag will der Frage nachgehen, ob innerhalb von Hospizen und Palliativstationen in Bezug auf typische Merkmale des „guten Sterbens“ jenseits von in der Literatur erhobenen Konsensen auch Dissense beobachtet werden können, wie Sterbeverläufe, die als nicht gut betrachtet werden, zu Wort kommen, und schließlich: welche ethisch beachtlichen normativen Konsequenzen sich daraus ergeben.Die Studie wird auf der Grundlage einer qualitativen Interviewstudie in der Befragung unterschiedlicher Akteursgruppen sowie im Vergleich dieser Gruppen durchgeführt.Artikuliert werden – auch dissentierende – Vorstellungen von einem guten (...) und einem schlechten Sterben, und zwar kaum von den Betroffenen und ihren Angehörigen selbst als vielmehr von den professionellen Akteuren. Die Ausprägung einer solchen Semantik hängt mit den Erfordernissen einer Praxis zusammen, die offenbar ein Rechenschaftsbedürfnis in Form von kommunikativer Vergewisserung evoziert.Eine abstrakte Bestimmung des „guten Sterbens“ steht in Gefahr, die kontextuellen Besonderheiten der damit verbundenen Praxis nicht mehr in den Blick zu bekommen, was zu in ethischer Hinsicht problematischen Situationen führen kann. (shrink)

It is very timely and highly important to think the relationship between theological and philosophical ethics. In this issue, Michael McCarthy et al. make a plea for a stronger dialogue...

Among bioethicists, and perhaps ethicists generally, the idea that we are obliged to respect autonomy is something of a shibboleth. Appeals to autonomy are commonly put to work to support legal and moral claims about the importance of consent, but they also feed a wider discourse in which the patient’s desires are granted a very high importance and medical paternalism is regarded as almost self-evidently indefensible.

Immunisation is offered to all age groups in the UK, but is mainly given to infants and school-age children. Such immunisation is not compulsory, in contrast to other countries, such as the United States. Levels of immunisation are generally very high in the UK, but the rates of immunisation vary with the public perception of the risk of side effects. This article discusses whether compulsory vaccination is acceptable by considering individual cases where parents have failed to give consent or have (...) explicitly refused consent for their children to be immunised. In particular, the rights of: a parent to rear his/her child according to his/her own standards; the child to receive health care, and the community to be protected from vaccine-preventable infectious disease are considered. The conclusion of the article is that compulsory vaccination cannot, with very few exceptions, be justified in the UK, in view of the high levels of population immunity which currently exist. (shrink)