We argue that the current ethical and regulatory framework for permissible risk levels in pediatric research can be helpfully understood in terms of children’s moral right to adequate protection from harm. Our analysis provides a rationale for what we propose as the highest level of permissible risk in pediatric research without the prospect of direct benefit: what we call “relatively minor” risk. We clarify the justification behind the usual standards of “minimal risk” and “a minor increase over minimal risk” and (...) explain why it is permissible to impose any risks at all on child participants who do not stand to benefit directly from enrollment in research. Finally, we illuminate some aspects of the concept of “best interests.”. (shrink)

Although advance directives are widely believed to be a key way to safeguard the autonomy of incompetent medical patients, significant questions exist about their moral authority. The main philosophical concern involves cases in which an incompetent patient no longer possesses the desires on which her advance directive was based. The question is, does that entail that prior expressions of medical choices are no longer morally binding? I believe that the answer is “yes.” I argue that a patient’s autonomy is not (...) respected by honoring the desires she used to have but no longer does. I also consider and reject the view that honoring an advance directive that reflects the patient’s previous values must be in that patient’s best interests. If that is correct, then advance directives in the kind of case at issue are not morally binding. (shrink)

Three common ethical principles for establishing the limits of parental authority in pediatric treatment decision making are the harm principle, the principle of best interest, and the threshold view. This paper consider how these principles apply to a case of a premature neonate with multiple significant comorbidities whose mother wanted all possible treatments, and whose health care providers wondered whether it would be ethically permissible to allow him to die comfortably despite her wishes. Whether and how these principles help to (...) understand what was morally right for the child is questioned. The paper concludes that the principles were of some value in understanding the moral geography of the case, but that the case reveals common bioethical principles for medical decision making are problematically value-laden because they are inconsistent with the widespread moral value of medical vitalism. (shrink)

On the standard view we assess a person’s competence by considering her relevant abilities without reference to the actual decision she is about to make. If she is deemed to satisfy certain threshold conditions of competence, it is still an open question whether her decision could ever be overruled on account of its harmful consequences for her (‘hard paternalism’). In practice, however, one normally uses a variable, risk dependent conception of competence, which really means that in considering whether or not (...) to respect a person’s decision-making authority we weigh her decision on several relevant dimensions at the same time: its harmful consequences, its importance in terms of the person’s own relevant values, the infringement of her autonomy involved in overruling it, and her decision-making abilities. I argue that we should openly recognize the multi-dimensional nature of this judgment. This implies rejecting both the threshold conception of competence and the categorical distinction between hard and soft paternalism. (shrink)

The United Nations Convention on the Rights of Persons with Disabilities urges and requires changes to how signatories discharge their duties to people with intellectual disabilities, in the direction of their greater recognition as legal persons with expanded decision-making rights. Australian jurisdictions are currently undertaking inquiries and pilot projects that explore how these imperatives should be implemented. One of the important changes advocated is to move from guardianship models to supported or assisted models of decision-making. A driving force behind these (...) developments is a strong allegiance to the social model of disability, in the formulation of the Convention, in inquiries and pilot projects, in implementation and in the related academic literature. Many of these instances suffer from confusing and misleading statements and conceptual misinterpretations of certain elements such as legal capacity, decision-making capacity, and support for decision-making. This paper analyses some of these confusions and their possible negative implications for supported decision-making instruments and those whose interests these instruments would serve, and advises a more incremental development of existing guardianship regimes. This provides a more realistic balance between neglecting the real limits of those with mental disabilities and thereby ignoring their identity and particularity, and continuing to bring them equally and fully into society. (shrink)

Part of the standard protection of decisionally incapacitated research subjects is a prohibition against enrolling them unless surrogate decision makers authorize it. A common view is that surrogates primarily ought to make their decisions based on what the decisionally incapacitated subject would have wanted regarding research participation. However, empirical studies indicate that surrogate predictions about such preferences are not very accurate. The focus of this article is the significance of surrogate accuracy in the context of research that is not expected (...) to benefit the research subject. We identify three morally relevant asymmetries between being enrolled and not being enrolled in such non-beneficial research, and conclude that when there is a non-negligible probability that surrogates’ predictions are wrong, it will generally be better to err on the side of not authorizing enrollment. (shrink)

Pediatric participation in non-therapeutic research that poses greater than minimal risk has been the subject of considerable thought-provoking debate in the research ethics literature. While the need for more pediatric research has been called morally imperative, and concerted efforts have been made to increase pediatric medical research, the importance of protecting children from undue research risks remains paramount.United States research regulations are derived largely from the deliberations and report of the National Commission for the Protection of Human Subjects of Biomedical (...) and Behavioral Research. The authors of this report specifically designated children as a vulnerable population and suggested additional protections, most of which became U.S. law. One of the more contested sets of regulations surrounds non-therapeutic research, e.g., research that does not offer the potential for direct benefit to participants. Federal regulations allow local Institutional Review Boards to approve non-therapeutic research posing a minor increase above minimal risk when it involves children who have the disease or medical condition that the research addresses. (shrink)

The genetic testing and screening of children has been fraught with controversy since Robert Guthrie developed the bacterial inhibition assay to test for phenylketonuria and advocated for rapid uptake of universal newborn screening in the early 1960s. Today with fast and affordable mass screening of the whole genome on the horizon, the debate about when and in what scenarios children should undergo genetic testing and screening has gained renewed attention. United States professional guidelines — both the American College of Medical (...) Genetics /American Society of Human Genetics statement and the American Academy of Pediatrics Statement on the genetic testing of children and the new AAP and ACMG joint policy statement and technical report — as well as the old UK guidelines by the Working Part of the Clinical Genetics Society and the new United Kingdom guidelines by the British Society of Human Genetics all give the same answer: genetic testing and screening should only be done if it is in the child’s best interest. (shrink)

Physicians treating newly incapacitated patients often must navigate surrogate decision-makers through a difficult course of treatment decisions. Such a process can be complex. Physicians must not only explain the medical facts and prognosis to the surrogate, but also attempt to ensure that the surrogate arrives at decisions that are consistent with the patient's own values and wishes. Where these values and wishes are unknown, physicians must help surrogates make decisions that reflect the patient's best interests.

A governing principle in medical ethics is respect for patient autonomy. This principle is commonly drawn upon in order to argue for the permissibility of assisted dying. In this paper I explore the proper role that respect for patient autonomy should play in this context. I argue that the role of autonomy is not to identify a patient’s best interests, but instead to act as a side-constraint on action. The surprising conclusion of the paper is that whether or not it (...) is in the best interests for the patient to die is a morally objective matter. This allows for the possibility that it can be in the best interests of the patient to die even if she autonomously considers it to be in her best interest to continue living. I argue that concerns about ‘mandatory’ euthanasia can be met when patient autonomy is respected as a side-constraint on action. Ultimately, this means that assisted dying is permissible, not because the autonomous patient views her suffering to be unbearable, but because it is in her objective best interests and she permitted it via her consent. (shrink)

In this chapter, I consider the idea that physician-assisted death might come into question in the cases of psychiatric patients who are incapable of making autonomous choices about ending their lives. I maintain that the main arguments for physician-assisted death found in recent medical ethical literature support physician-assisted death in some of those cases. After assessing several possible criticisms of what I have argued, I conclude that the idea that physicianassisted death can be acceptable in some cases of psychiatric patients (...) who lack autonomy ought to be taken into account in assessing the moral and legal acceptability of physician-assisted death. (shrink)

The connections between medicine and well-being are myriad. This paper focuses on the place of well-being in clinical medicine. It is here that different views of well-being, and their connection to concepts like “autonomy” and “authenticity”, both illuminate and are illuminated by looking closely at the kinds of interactions that routinely take place between clinicians, patients, and family members. -/- In the first part of the paper, I explore the place of well-being in a paradigmatic clinical encounter, one where a (...) competent patient interacts with a clinician. The main question here is how, or even whether, the pursuit of patient well-being – however we construe it – figures into a paradigmatic clinical encounter. In the second part of the paper, I consider what I will call a marginal clinical encounter – one where the patient is, as Agnieska Jaworska (1999) puts it, at the “margins of agency” – to theorize about the nature of well-being and to show how different theories of well-being can have dramatic consequences for clinical decision-making. (shrink)

IntroductionExtended decision -making through the use of proxy decision -makers has been enshrined in a range of International Codes, Professional Guidance and Statute,For example, the UK Mental Capacity Act section 9.1; The General Medical Council ; the US National Guardianship Association ; Nuffield Council on Bioethics ; CIOMS-WHO section 6. Court cases such as Re Quinlan in the US have also contributed to establishing the groundings for the legal status of the proxy, albeit in terms of who might be suitable (...) as a proxy in cases where there was no clear appointment of them by a still competent individual. and is now widely seen as a useful means through which we can exercise control over decisions that affect our lives when we have lost capacity to make these decisions for ourselves.I will here limit myself to discussion of proxy consent for adults appointed prior to the loss of competence by the person they are acting as proxy for. The issue of p. (shrink)

In this article, I argue that persons suffering from Body Integrity Identity Disorder (BIID) can give informed consent to surgical measures designed to treat this disorder. This is true even if the surgery seems radical or irrational to most people. The decision to have surgery made by a BIID patient is not necessarily coerced, incompetent or uninformed. If surgery for BIID is offered, there should certainly be a screening process in place to insure informed consent. It is beyond the scope (...) of this work, however, to define all the conditions that should be placed on the availability of surgery. However, I argue, given the similarities between BIID and gender dysphoria and the success of such gatekeeping measures for the surgical treatment of gender dysphoria, it is reasonable that similar conditions be in place for BIID. Once other treatment options are tried and gatekeeping measures satisfied, A BIID patient can give informed consent to radical surgery. (shrink)

An increasing number of children are adopted in the United States from countries where both medical care and environmental conditions are extremely poor. In response to worries about the accuracy of medical histories, prospective adoptive parents increasingly request genetic testing of children prior to adoption. Though a general consensus on the ethics of pre-adoption genetic testing (PAGT) argues against permitting genetic testing on children available for adoption that is not also permitted for children in general, a view gaining traction argues (...) for expanding the tests permitted. The reasoning behind this view is that the State has a duty to provide a child with parents who are the best “match,” and thus all information that advances this end should be obtained. While the matching argument aims to promote the best interests of children, I show how it rests on the claim that what is in the best interests of children available for adoption is for prospective adoptive parents to have their genetic preferences satisfied such that the “genetics” of the children they end up adopting accurately reflects those preferences. Instead of protecting a vulnerable population, I conclude, PAGT contributes to the risks of harm such children face as it encourages people with strong genetic preferences to adopt children whose genetic backgrounds will always be uncertain. (shrink)

Editorial introduction to series of papers resulting from a European Commission Project on mental capacity.

It has recently been proposed to incorporate the use of a “Patient Preference Predictor” (PPP) into the process of making treatment decisions for incapacitated patients. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Including a PPP in the shared decision-making process between clinicians and surrogates has the potential to better realize important ethical goals for making treatment decisions (...) for incapacitated patients. However, developing and implementing a PPP poses significant practical challenges. The present paper discusses these practical challenges and considers ways to address them. (shrink)

The standard approach to treatment decision making for incapacitated patients often fails to provide treatment consistent with the patient’s preferences and values and places significant stress on surrogate decision makers. These shortcomings provide compelling reason to search for methods to improve current practice. Shared decision making between surrogates and clinicians has important advantages, but it does not provide a way to determine patients’ treatment preferences. Hence, shared decision making leaves families with the stressful challenge of identifying the patient’s preferred treatment (...) option. To address this concern, the present paper proposes to incorporate the use of a “Patient Preference Predictor” (PPP) into the shared decision-making process between surrogates and clinicians. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Use of a PPP is likely to increase the chances that incapacitated patients are treated consistent with their preferences and values and might reduce the stress and burden on their surrogates. Including a PPP in the shared decision-making process therefore has the potential to realize important ethical goals for making treatment decisions for incapacitated patients. The present paper justifies this approach on conceptual and normative grounds. (shrink)

Ordinary Language Philosophy has largely fallen out of favour, and with it the belief in the primary importance of analyses of ordinary language for philosophical purposes. Still, in their various endeavours, philosophers not only from analytic but also from other backgrounds refer to the use and meaning of terms of interest in ordinary parlance. In doing so, they most commonly appeal to their own linguistic intuitions. Often, the appeal to individual intuitions is supplemented by reference to dictionaries. In recent times, (...) Internet search engine queries for expressions of interest have become quite popular. Apparently, philosophers attempt to surpass the limits of their own linguistic intuitions by appealing to experts or to factual uses of language. I argue that this attempt is commendable but that its execution is wanting. Instead of appealing to dictionaries or Internet queries, philosophers should employ computer-based linguistic corpora in order to confirm or falsify hypotheses about the factual use of language. This approach also has some advantages over methods employed by experimental philosophers. If the importance of ordinary language is stressed, the use of linguistic corpora is hardly avoidable. (shrink)

Ethical and legal discourse pertaining to the ability to consent to treatment and research in England operates within a dualist framework of “competence” and “capacity”. This is confusing, as while there exists in England two possible senses of legal capacity – “first person” legal capacity and “delegable” legal capacity, currently neither is formulated to bear a necessary relationship with decision-making competence. Notwithstanding this, judges and academic commentators frequently invoke competence to consent in discussions involving the validity of offering or withholding (...) consent as a synonym for legal capacity to consent. I argue that this gives rise to a conflation, jeopardising clarity and consistency in law. This is somewhat less problematic in instances of “first-person” legal capacity that are heavily informed by criteria for decision-making competence than in the second sense of legal capacity, which is qualitatively different from decision-making competence, or with first-person legal capacity when defined in different terms from competence. The paper concludes by proposing that the soundest resolution to this problem is by making decision-making competence a necessary and sufficient condition of first-person legal capacity, affording a more scrupulous distinction between the two different forms of legal capacity that exist. (shrink)

Demographischer Wandel und medizinischer Fortschritt haben zur Folge, dass immer mehr Patienten außerstande sind, selbstbestimmt über eine medizinische Behandlung zu entscheiden. Dann sind andere gefordert, unter Berücksichtigung von Wohl und Willen des Patienten stellvertretend zu entscheiden. Dabei bieten sich drei Entscheidungskriterien an: Paternalismus, substitutive Autonomie (mutmaßlicher Wille) und prospektive Autonomie (vorausverfügter Wille). Keines dieser Kriterien garantiert für sich genommen eine optimale Entscheidung. Realistisch ist nur ein integratives Modell, das diese Kriterien pragmatisch verbindet. Je klarer im Einzelfall die Evidenz für den (...) autonomen Patientenwillen ist, desto mehr Gewicht sollte ihm eingeräumt werden. Dabei lassen sich konkrete Schritte benennen, wie die Evidenz für eine autonome Willensbekundung beurteilt werden kann. Obgleich stellvertretende Entscheidungen in der medizinischen Praxis oft von Ärzten, professionellen Betreuern und Richtern getroffen werden, gibt es überzeugende Gründe für die These, dass der nächste Angehörige am besten geeignet ist, prima facie als stellvertretender Entscheidungsträger zu fungieren. (shrink)

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

Legal restrictions of the right to self-determination increasingly pretend to be compatible with the liberal concept of autonomy: they act upon a ‘soft’ or autonomy-orientated paternalistic rationale. Conventional liberal critique of paternalism turns out to be insensitive to the intricate normative problems following from ‘soft’ or ‘libertarian’ paternalism. In fact, these autonomy-oriented forms of paternalism could actually be even more problematic and may infringe liberty rights even more intensely than hard paternalistic regulation. This paper contributes to the systematic differentiation of (...) soft and hard paternalism by discussing the (legal) concept of autonomy and elaborates the moral and legal limits of autonomy-orientated paternalism. (shrink)

Decisions concerning children in the health care setting have engendered significant controversy and sparked ethics policies and statements, legal action, and guidelines regarding who ought to make decisions involving children and how such decisions ought to be made. Traditionally, parents have been the default decision-makers for children not only with regard to health care but with regard to other matters, such as religious practice and education. In recent decades, there has been a steady trend away from the view that parents (...) are in authority over their children and toward the view that children are rights-bearers who should be granted greater authority over themselves. The mature minor doctrine refers to the decision to grant mature minors the authority to make decisions traditionally reserved for their parents. This essay (1) documents the trend towards expanding the understanding of some minors as “mature” and hence as having the right and authority to give informed consent, (2) examines the reasons for which some commentators have a special interest in expanding the mature minor doctrine to the research setting and allowing minors to enroll in research without parental permission, and (3) defends the view that the mature minor doctrine, regardless of its application to clinical health care decisions, ought to be set aside in the research setting in favor of greater parental involvement. (shrink)

The paper investigates whether it is plausible to hold the late stage demented criminally responsible for past actions. The concern is based on the fact that policy makers in the United States and in Britain are starting to wonder what to do with prison inmates in the later stages of dementia who do not remember their crimes anymore. The problem has to be expected to become more urgent as the population ages and the number of dementia patients increases. This paper (...) argues that the late-stage demented should not be punished for past crimes. Applicable theories of punishment, especially theories with an appropriate expressivist, or communicative element, fail to justify the imprisonment of the late-stage demented. Further imprisonment would require a capacity for comprehension on the part of the punished, and, under certain narrowly specified conditions, even a capacity to be at least in principle capable of recalling the crime again. (shrink)

This articles assesses the arguments that bioethicists have presented for the view that patient’ autonomy has value over and beyond its instrumental value in promoting the patients’ wellbeing. It argues that this view should be rejected and concludes that patients’ autonomy should be taken to have only instrumental value in medicine.

Rapid advances in neuroscience may enable us to identify the neural correlates of ordinary decision making. Such knowledge opens up the possibility of acquiring highly accurate information about people’s competence to consent to medical procedures and to participate in medical research. Currently we are unable to determine competence to consent with accuracy and we make a number of unrealistic practical assumptions to deal with our ignorance. Here I argue that if we are able to detect competence to consent and if (...) we are able to develop a reliable neural test of competence to consent, then these assumptions will have to be rejected. I also consider and reject three lines of argument that might be developed by a defender of the status quo in order to protect our current practices regarding judgments of competence in the face of the availability of information about the neural correlates of ordinary human decision making. (shrink)

In the USA and England and Wales, involuntary treatment for mental illness is subject to the constraint that it must be necessary for the health or safety of the patient, if he poses no danger to others. I will argue against this necessary condition of administering treatment and propose that the category of individuals eligible for involuntary treatment should be extended. I begin by focusing on the common disorder of schizophrenia and proceed to demonstrate that it can be a considerable (...) harm to a person's life without causing the person to be a danger to himself. I illuminate this claim by constructing a thought experiment concerning a person who slips on a banana peel and falls into a malfunctioning version of Robert Nozick's experience machine. I propose that the reasons why we should remove the person from the machine are the same reasons why we should administer involuntary treatment to individuals with schizophrenia. I rebut three objections to the analogy and conclude that if we believe that we have a duty to provide treatment for reasons relating to a person's wellbeing, it follows that we should reject the health or safety requirement and instead broaden the category of individuals who are eligible for involuntary treatment. (shrink)

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)

"Best interests" is widely accepted as the appropriate foundation principle for medico-legal decisions concerning treatment withdrawal from patients in persistent vegetative state (PVS). Its application appears to progress logically from earlier use regarding legally incompetent patients. This author argues, however, that such confidence in the relevance of the principle of best interests to PVS is misplaced, and that current construction in this context is questionable on four specific grounds. Furthermore, it is argued that the resulting legal inconsistency is distorting both (...) the principle itself and, more particularly, individual patient interests. (shrink)

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

A review of medical ethics literature relating to the importance of the participation of patients in decision-making introduces the role of rights-based mediation as a voluntary process now being developed innovatively in America. This is discussed in relation to the theory of communicative ethics and moral personhood. References are then made to the work of medical ethics committees and the role of mediation within these. Finally it is suggested that mediation is part of an eirenic ethic already being used informally (...) in good patient care, and that there is a case for developing it further. (shrink)

Background Making the right decisions, while simultaneously showing respect for patient autonomy, represents a great challenge to nursing home staff in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation to dying patents in end-of-life. Objectives To study how physicians and nurses protect nursing home patients' autonomy in end-of-life decisions, and how they justify their practice. Design A qualitative descriptive design with analysis of the content of transcribed in-depth interviews with physicians and nurses. Participants Nine physicians and ten nurses in (...) 10 nursing homes in Norway. Results and interpretations Assessment of the patient's competence to consent to treatment is almost absent. The physicians build their practice on the principles of beneficence and nonmaleficence. Nurses tend to trust the patients' rejection of life support, even when the patients have difficulty speaking or suffer from dementia. Relatives were, according to the health personnel, included in decision-making processes to a very limited extent. However, futile life support is sometimes provided contrary to the physicians' judgement of what constitutes the patient's best interest on occasions when they are pressurised by next of kin. Conclusions The study reveals a need to improve decision-making routines according to ethical ideals and legislation. Conflicts between relatives and healthcare professionals in the decision-making process deflect the focus from searching for the best possible treatment for the terminal patient. Further discussion is required as to whether the concept of autonomy is applicable in situations in which the patient is impaired and dying. (shrink)

An axiom of medical research ethics is that a protocol is moral only if it has a “favorable risk-benefit ratio”. This axiom is usually interpreted in the following way: a medical research protocol is moral only if it has a positive expected value -- that is, if it is likely to do more good (to both subjects and society) than harm. I argue that, thus interpreted, the axiom has two problems. First, it is unusable, because it requires us to know (...) more about the potential outcomes of research than we ever could. Second, it is false, because it conflicts with the so-called “soft paternalist” principles of liberal democracy. In place of this flawed rule I propose a new way of making risk-benefit assessments, one that does comport with the principles of liberalism. I argue that a protocol is moral only if it would be entered into by competent subjects who are informed about the protocol. The new rule this eschews all pseudo-utilitarian calculation about the protocol’s likely harms and benefits. (shrink)

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

“Informed consent” is a legal instrument that allows individuals to define their own interests and to protect their bodily privacy. In current medical practice, patients who have consented to surgery are considered to have implied consent to anaesthesia, even though anaesthesia is associated with its own particular set of risks and consequences that are quite separate from those associated with surgery. In addition, anaesthetists often perform interventions that are the only medical treatment received by a patient. Anaesthetists, therefore, should always (...) obtain separate consent for anaesthesia, and should regard the process of consent as a stimulus for active, fluid reciprocal discussion with patients about treatment options. (shrink)

Dr Andorno and I have corresponded for some time on the question of a right not to know information. I enjoyed reading his paper and I am struck by the degree of agreement that we share. We both agree—for example, that unsolicited knowledge can be a burden which can significantly compromise an individual’s psychological integrity. We both share a desire to respect individual self determination. Also we each consider it reasonable for individuals to choose not to receive potentially harmful information. (...) I have already made these arguments, and more, elsewhere,1 but my starting point has not been autonomy, as advocated by Andorno, but rather privacy. In essence, my argument is that individuals enjoy, and are entitled to enjoy, a measure of psychological privacy which can be invaded by unwarranted disclosures of information.The reason that I prefer privacy to autonomy is not because I have any wish to “deny people the right to self determination”2 but rather because I perceive deficiencies in the autonomy model. Indeed, my approach and that of Andorno are not mutually exclusive; it is simply that my approach is broader and encompasses some of the harder cases which an autonomy based approach cannot help us to resolve. Thus, most of the substance of Andorno’s approach is subsumed within my model. I have—for example, no disagreement whatsoever with the view that if you have an indication that an individual would not wish to know then this wish should be respected. One might even establish novel means of discerning individuals’ wishes by establishing a register to record advance refusals, as Andorno …. (shrink)

The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient’s relatives who, (...) without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be “activated” by the individual’s explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons. (shrink)

I will argue that there are difficulties with the application of the four principles approach to incompetent children. The most important principle – respect for autonomy – is not directly applicable to incompetent children and the most appropriate modification of the principle for them is not clear. The principle of beneficence – that one should act in the child’s interests – is complicated by difficulties in assessing what a child’s interests are and to which standard of interests those choosing for (...) children should be held. A further problem with the four principles approach is that parental authority does not follow clearly from the four principles. (shrink)

I examine how co-parents should handle differing commitments about how to raise their child. Via thought experiment and the examination of our practices and affective reactions, I argue for a thesis about the locus of parental authority: that parental authority is invested in full in each individual parent, meaning that that the command of one parent is sufficient to bind the child to act in obedience. If this full-authority thesis is true, then for co-parents to command different things would be (...) for them to contest one another’s authority. The only course that respects the authority of both parents is for co-parents to agree to command the same thing. Further, what is commanded must not result from a ‘capitulation’ by one co-parent, rather, it should result from a compromise. Parental authority involves a duty to deliberate about which commands it is best to give the child. If a command results from a capitulation, one parent will rightly think of themselves as not having fulfilled their parental duty. Parental compromises are not best understood as bargains or conflicts, but by the metaphor of gifts given by each parent out of respect for the other’s authority. (shrink)

In many Western jurisdictions, the law presumes that adult persons, and sometimes children that meet certain criteria, are capable of making their own health care decisions; for example, consenting to a particular medical treatment, or consenting to participate in a research trial. But what exactly does it mean to say that a subject has or lacks the requisite capacity to decide? This last question has to do with what is commonly called “decisional capacity,” a central concept in health care law (...) and ethics, and increasingly an independent topic of philosophical inquiry. (shrink)