The legal basis of informed consent in Texas may on first examination suggest an unqualified affirmation of persons as the source of authority over themselves. This view of individuals in the practice of informed consent tends to present persons outside of any social context in general and outside of their families in particular. The actual functioning of law and medical practice in Texas, however, is far more complex. This study begins with a brief overview of the roots of Texas law (...) and public policy regarding informed consent. This surface account is then contrasted with examples drawn from the actual functioning of Texas law: Texas legislation regarding out-of-hospital do-not-resuscitate (DNR) orders. As a default approach to medical decision-making when patients lose decisional capacity and have failed to appoint a formal proxy or establish their wishes, this law establishes a defeasible presumption in favor of what the law characterizes as “qualified relatives” who can function as decision-makers for those terminal family members who lose decisional capacity. The study shows how, in the face of a general affirmation of the autonomy of individuals as if they were morally and socially isolated agents, space is nevertheless made for families to choose on behalf of their own members. The result is a multi-tier public morality, one affirming individuals as morally authoritative and the other recognizing the decisional standing of families. (shrink)

Decision making for incompetent patients is a much-discussed topic in bioethics. According to one influential decision making standard, the substituted judgment standard, the decision that ought to be made for the incompetent patient is the decision the patient would have made, had he or she been competent. Although the merits of this standard have been extensively debated, some important issues have not been sufficiently explored. One fundamental problem is that the substituted judgment standard, as commonly formulated, is indeterminate in content (...) and thus offers the surrogate little or no guidance. What the standard does not specify is just how competent one should imagine the patient to be, and what else one ought to envision about the patient’s hypothetical outlook and the circumstances surrounding his or her decision making. The article discusses this problem of underdetermined decision conditions. (shrink)

This paper explores the value of respect for personal autonomy in relation to clearly immoral and irrational acts committed freely and intentionally by competent people. Following Berlin's distinction between two kinds of liberty and Darwall's two kinds of respect, it is argued that coercive suppression of nonautonomous, irrational, and self-harming acts of competent persons is offensive to their human dignity, but not disrespectful of personal autonomy. Irrational and immoral choices made by competent people may claim only the negative liberty to (...) be left alone. Lives disposed to autonomy are worthy of solidarity and active support in addition to the right of free choice and action. Autonomous premeditated desires (distinguished from mere consent) may embody transcendental choices, which transcend consideration of physical and psychological well-being. Choices made by incompetent persons (e.g., children and the mentally disabled) are not related to autonomy, but to self-directedness. The value of human dignity confers protection to self-directedness, but not at the expense of other vital interests. (shrink)

Over the last decade, several European countries and the Council of Europe itself have strongly supported the use of advance directives as a means of protecting patients’ autonomy, and adopted specific norms to regulate this matter. However, it remains unclear under which conditions those regulations should apply to people who are placed in correctional settings. The issue is becoming more significant due to the increasing numbers of inmates of old age or at risk of suffering from mental disorders, all of (...) whom might benefit from using advance directives. At the same time, the closed nature of prisons and the disparate power relationships that characterise them mean that great caution must be exercised to prevent care being withdrawn or withheld from inmates who actually want to receive it. This paper explores the issue of prisoners’ advance directives in the European context, starting with the position enshrined in international and European law that prisoners retain all their human rights, except the right to liberty, and are therefore entitled to self-determination regarding health care decisions. (shrink)

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

This essay explores three issues in respect for autonomy that pose unfinished business for the concept. By this, I mean that the dialogue over them is ongoing and essentially unresolved. These are: whether we ought to respect persons or their autonomous choices; the role of relational autonomy; and whether nonhuman animals can be autonomous. In attending to this particular set of unfinished business, I highlight some critical moral work left aside by the concept of respect for autonomy as understood in (...) Beauchamp and Childress’ Principles of Biomedical Ethics. Specifically, while significant pragmatic traction is gained by the authors’ focus on autonomous choice, carving such a focus out from the broader questions of moral respect and the autonomy of the person leaves aside a number of questions that we might have thought a view about respect for autonomy in biomedicine ought to answer. These include: How should physicians respond when autonomous patients make decisions that appear nonautonomous? What is the impact of the view that autonomy is “relational” for cross-cultural differences in how autonomy is respected? If chimpanzees can be autonomous, what does that mean for how they should be treated? (shrink)

Christopher Boorse’s biostatistical theory of medical disorder claims that biological part-dysfunction (i.e., failure of an internal mechanism to perform its biological function), a factual criterion, is both necessary and sufficient for disorder. Jerome Wakefield’s harmful dysfunction analysis of medical disorder agrees that part-dysfunction is necessary but rejects the sufficiency claim, maintaining that disorder also requires that the part-dysfunction causes harm to the individual, a value criterion. In this paper, I present two considerations against the sufficiency claim. First, I analyze Boorse’s (...) central argument for the sufficiency claim, the “pathologist argument,” which takes pathologists’ intuitions about pathology as determinative of medical disorder and conclude that it begs the question and fails to support the sufficiency claim. Second, I present four counterexamples from the medical literature in which salient part-dysfunctions are considered nondisorders, including healthy disease carriers, HIV-positive status, benign mutations, and situs inversus totalis, thus falsifying the sufficiency claim and supporting the harm criterion. (shrink)

Wakefield’s harmful dysfunction analysis asserts that the concept of medical disorder includes a naturalistic component of dysfunction and a value component, both of which are required for disorder attributions. Muckler and Taylor, defending a purely naturalist, value-free understanding of disorder, argue that harm is not necessary for disorder. They provide three examples of dysfunctions that, they claim, are considered disorders but are entirely harmless: mild mononucleosis, cowpox that prevents smallpox, and minor perceptual deficits. They also reject the proposal that dysfunctions (...) need only be typically harmful to qualify as disorders. We argue that the proposed counterexamples are, in fact, considered harmful; thus, they fail to disconfirm the harm requirement: incapacity for exertion is inherently harmful, whether or not exertion occurs, cowpox is directly harmful irrespective of indirect benefits, and colorblindness and anosmia are considered harmful by those who consider them disorders. We also defend the typicality qualifier as viably addressing some apparently harmless disorders and argue that a dysfunction’s harmfulness is best understood in dispositional terms. (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)

In this article, I consider whether the advance directive of a person in minimally conscious state ought to be adhered to when its prescriptions conflict with her current wishes. I argue that an advance directive can have moral significance after its issuer has succumbed to minimally conscious state. I also defend the view that the patient can still have a significant degree of autonomy. Consequently, I conclude that her advance directive ought not to be applied. Then I briefly assess whether (...) considerations pertaining to respecting the patient's autonomy could still require obedience to the desire expressed in her advance directive and arrive at a negative answer. (shrink)

The past decade has seen a burgeoning of scholarly interest in conscientious objection in health care. Specifically, several commentators have discussed the implications that conscientious objection has for the delivery of timely, efficient, and nondiscriminatory medical care. In this paper, I discuss the main argument put forward by the most prominent critics of conscientious objection—what I call the Professional Duty Argument or PDA. According to proponents of PDA, doctors should place patients’ well-being and rights at the center of their professional (...) practice. Doctors should be prepared to set their personal moral or religious beliefs aside where these beliefs conflict with what is legal and considered good medical practice by relevant professional associations. Conscientious objection, on this account, should be heavily restricted, if even allowed at all. I discuss two powerful objections against PDA. The first objection, which I call the fallibility objection, notes that law and professional codes of conduct are fallible guides for ethical conduct and that conscientious objection has in the past and continues today to provide a check on aberrations in law and professional convention. The second, which I call the professional discretion objection, states that restrictions on conscientious objection undermine one of the cornerstones of good medical practice, namely, a practitioner’s right to independent professional judgment. I argue that these two objections give us reason to retain conscience clauses in professional codes of conduct. (shrink)

The received view in medical contexts is that informed consent is both necessary and sufficient for patient autonomy. This paper argues that informed consent is not sufficient for patient autonomy, at least when autonomy is understood as a "relational" concept. Relational conceptions of autonomy, which have become prominent in the contemporary literature, draw on themes in the thought of Charles Taylor. I first identify four themes in Taylor's work that together constitute a picture of human agency corresponding to the notion (...) of agency implicit in relational accounts of autonomy. Drawing on these themes, I sketch two arguments against the position that informed consent secures autonomy. The first is that informed consent is an "opportunity" concept whereas autonomy is an "exercise" concept; the second is that informed consent requires merely weak evaluation and not strong evaluation. On Taylor's analysis of agency, strong evaluation is required for agency and for autonomy. (shrink)

The Substituted Judgment Standard for surrogate decision-making dictates that a surrogate, when making medical decisions on behalf of an incapacitated patient, ought to make the decision that the patient would have made if the patient had decisional capacity. Despite its intuitive appeal, however, SJS has been the target of a variety of criticisms. Most objections to SJS appeal to epistemic difficulties involved in determining what a patient would have decided in a given case. In this article, I offer an alternative (...) standard for surrogate decision-making that avoids these difficulties. I then offer an account of its theoretical underpinnings which shows that it preserves the central moral justification for SJS, namely, respect for patient autonomy. (shrink)

One way in which bioethicists can benefit the medical community is by clarifying the concept of disorder. Since insurance companies refer to the DSM for whether a patient should receive assistance, one must consider the consequences of one’s concept of disorder for who should be provided with care. I offer a refinement of Jerome Wakefield’s hybrid concept of disorder, the harmful dysfunction analysis. I criticize both the factual component and the value component of Wakefield’s account and suggest how they might (...) be improved. I propose that the factual component should be statistical variation analyzed in multilevel and chronological compilations of physiological data. I propose that the value component should prioritize the individual’s authority regarding the experience of suffering from a physiological condition. My account preserves the insight of using a factual and a value component while avoiding the problems that Wakefield’s original account faces. (shrink)

Two clusters of essays in this issue of The Journal of Medicine and Philosophy provide a critical gaze through which to explore central moral, phenomenological, ontological, and political concerns regarding human moral agency and personal responsibility. The first cluster challenges common assumptions in bioethics regarding the voluntariness of human actions. The second set turns the debate towards morally responsible choice within the requirements of distributive justice. The force of their collective analysis leaves us with a well-founded basis critically to approach (...) any account of bioethics or health policy that is insufficiently attentive to the central challenges of human freedom and responsible free choice. (shrink)

In an article in this journal, Christopher Cowley argues that we have ‘misunderstood the special nature of medicine, and have misunderstood the motivations of the conscientious objectors’. We have not. It is Cowley who has misunderstood the role of personal values in the profession of medicine. We argue that there should be better protections for patients from doctors' personal values and there should be more severe restrictions on the right to conscientious objection, particularly in relation to assisted dying. We argue (...) that eligible patients could be guaranteed access to medical services that are subject to conscientious objections by: removing a right to conscientious objection; selecting candidates into relevant medical specialities or general practice who do not have objections; demonopolizing the provision of these services away from the medical profession. (shrink)

This article provides analysis of the mechanisms and outputs involved in language-use mediated by a neuroprosthetic device. It is motivated by the thought that users of speech neuroprostheses require sufficient control over what their devices externalize as synthetic speech if they are to be thought of as responsible for it, but that the nature of this control, and so the status of their responsibility, is not clear.

Conceptions of individual autonomy and of rational autonomy have played large parts in twentieth century moral philosophy, yet it is hard to see how either could be basic to morality. Kant's conception of autonomy is radically different. He predicated autonomy neither of individual selves nor of processes of choosing, but of principles of action. Principles of action are Kantianly autonomous only if they are law-like in form and could be universal in scope; they are heteronomous if, although law-like in form, (...) they cannot have universal scope. Puzzles about claims linking morality, reason and autonomy are greatly reduced by recognising the distinctiveness of Kantian autonomy. (shrink)

Conceptions of individual autonomy and of rational autonomy have played large parts in twentieth century moral philosophy, yet it is hard to see how either could be basic to morality. Kant's conception of autonomy is radically different. He predicated autonomy neither of individual selves nor of processes of choosing, but of principles of action. Principles of action are Kantianly autonomous only if they are law-like in form and could be universal in scope; they are heteronomous if, although law-like in form, (...) they cannot have universal scope. Puzzles about claims linking morality, reason and autonomy are greatly reduced by recognising the distinctiveness of Kantian autonomy. (shrink)

Conceptions of individual autonomy and of rational autonomy have played large parts in twentieth century moral philosophy, yet it is hard to see how either could be basic to morality. Kant's conception of autonomy is radically different. He predicated autonomy neither of individual selves nor of processes of choosing, but of principles of action. Principles of action are Kantianly autonomous only if they are law-like in form and could be universal in scope; they are heteronomous if, although law-like in form, (...) they cannot have universal scope. Puzzles about claims linking morality, reason and autonomy are greatly reduced by recognising the distinctiveness of Kantian autonomy. (shrink)

This article seeks to explore and analyze the relationship between autonomy and trust, and to show how these findings could be relevant to medical ethics. First, I will argue that the way in which so-called “relational autonomy theories” tie the notions of autonomy and trust together is not entirely satisfying Then, I will introduce the so-called Encapsulated Interest Account as developed by Russell Hardin. This will bring out the importance of the reasons for trust. What good reasons do we have (...) for trusting someone? I will criticize Hardin’s business model as insufficiently robust, especially in the context of health care, and then turn to another source of trust, namely, love. It may seem that trust-through-love is much better suited for the vulnerability that is often involved in health care, but I will also show that it has its own deficiencies. Good health care should therefore pay attention to both models of trust, and I will offer some tentative remarks on how to do this. (shrink)

According to one influential view, requirements to elicit consent for medical interventions and other interactions gain their rationale from the respect we owe to each other as autonomous, or self-governing, rational agents. Yet the popular presumption that consent has a central role to play in legitimate intervention extends beyond the domain of cases where autonomous agency is present to cases where far from fully autonomous agents make choices that, as likely as not, are going to be against their own best (...) interest. The question how we should understand the rationale for eliciting consent in this range of ‘non-ideal’ cases is comparatively ill understood. In this paper, I explore the prospects of accounting for consent requirements in such ‘non-ideal’ cases by appealing to a set of agency-based interests; including an interest in playing a meaningful part in joint decisions affecting ourselves and others. (shrink)

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

If bioethical questions cannot be resolved in a widely acceptable manner by rational argument, and if they can be regulated only on the basis of political decision-making, then bioethics belongs to the political sphere. The particular kind of politics practiced in any given society matters greatly: it will determine the kind of bioethical regulation, legislation, and public policy generated there. I propose approaching bioethical questions politically in terms of decisions that cannot be “correct” but that can be “procedurally legitimate.” Two (...) procedures in particular can deliver legitimate bioethical decisions, once combined: expert bioethics committees and deliberative democracy. Bioethics so understood can exceed bioethics as a moral project or as a set of administrative principles to regulate medical practice; it can now aspire to a democratic project that involves ordinary citizens as far as reasonably possible. I advance this argument in four steps: (1) using the example of human germline gene editing, (2) I propose a general understanding of proceduralism, and (3) then combine two types and (4) conclude with a defense of majoritarian proceduralism. I develop this argument in terms of one example: germline gene editing. (shrink)

Although the principle of respect for personal autonomy has been the subject of debate for almost 40 years, the conversation has often suffered from lack of clarity regarding the philosophical traditions underlying this principle. In this article, I trace a genealogy of autonomy, first contrasting Kant’s autonomy as moral obligation and Mill’s teleological political liberty. I then show development from Mill’s concept to Beauchamp and Childress’ principle and to Julian Savulescu’s non-teleological autonomy sketch. I argue that, although the reach for (...) a new principle to guide choices in physician–patient relationships can rightfully be seen as important, the notion that is now called autonomy within bioethics has corollaries that undermine critical aspects of medical care. As such, there is need for a richer account of the interplay between the free choice of patients and the informed recommendations of doctors. (shrink)

The challenge in maintaining patient autonomy regarding medical decision-making and confidentiality lies not only in control over information transferred to and regarding patients, but in the ambiguity of autonomy itself. post-modernity is characterized by the recognition of not just numerous accounts of autonomy, but by the inability in a principled fashion to select one as canonical. Autonomy is understood as a good, a right-making condition, and an element of human flourishing. In each case, it can have a different content, depending (...) in part on whether it is given a nomological or a volitional construal. Different accounts of autonomy can lead to strikingly different understandings of appropriate behavior, including the argument that one ought on behalf of autonomy to liberate individuals from the sense of autonomy they themselves affirm. In the face of competing accounts of moral probity, autonomy in a secular morality and bioethics must by default be understood in terms of the permission of patients, which makes space for numerous moral accounts and different communal construals of free choice, which in turn will legitimate different practices of informing patients and maintaining confidentiality. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

This review essay examines H. Tristram Engelhardt, Jr.'s The Foundations of Bioethics, a contemporary nonfeminist text in mainstream biomedical ethics. It focuses upon a central concept, Engelhardt's idea of the moral community and argues that the most serious problem in the book is its failure to take account of the political and social structures of moral communities, structures which deeply affect issues in biomedical ethics.