Reconsidering paternalism in clinical research

The ethical standards that regulate clinical research have multiple rationales. Among them is the need to protect potential subjects from making imprudent decisions, which extends beyond the soft paternalistic concern to protect people from making uninformed decisions to participate in trials. This article argues that a plausible risk/benefit restriction on clinical trials is presumptively justified by hard paternalism, which in turn is supported by a deeper fairness‐based rationale. This presumptive case for hard paternalism in research is not defeated by the alleged right to participate in clinical trials, by concerns about insult or status, by the need to conduct early phase trials that promise little to no benefit to participants, or by the recognition that some potential subjects are altruistically motivated.     

Are Bans on Kidney Sales Unjustifiably Paternalistic?

This paper challenges the view that bans on kidney sales are unjustifiably paternalistic, that is, that they unduly deny people the freedom to make decisions about their own bodies in order to protect them from harm. I argue that not even principled anti‐paternalists need to reject such bans. This is because their rationale is not hard paternalism, which anti‐paternalists repudiate, but soft paternalism, which they in principle accept. More precisely, I suggest that their rationale is what Franklin Miller and Alan Wertheimer call ‘group soft paternalism’. Group soft paternalistic policies restrict the freedom of autonomous individuals, not for their own good (hard paternalism), but as an unavoidable consequence of seeking to protect other, non‐autonomous individuals from harms that they have not voluntarily chosen (soft paternalism). Group soft paternalism supports prohibiting kidney sales on three conditions: (1) that such sales are potentially harmful to vendors, (2) that many vendors would suffer impaired autonomy, and (3) that distinguishing between autonomous and non‐autonomous vendors and interfering only with the latter is unfeasible. I provide reasons for thinking that these conditions will often hold.     

Paternalism and certitude

When paternalism is deemed morally justified, weak paternalism—which restricts itself to assisting the target of paternalism realize his own preferences—is the preferred (less problematic) alternative. In determining the appropriateness of weak paternalism, the level of certitude of the paternalist regarding the correctness of her assessment of the true preferences of the one-paternalized is obviously a crucial factor. Yet in the ethics of paternalism this parameter has escaped systematic treatment. This paper aims to initiate discussion on this indispensable consideration for weak paternalism. Analysing a real-life dilemma of paternalism in healthcare, the paper focuses on the theoretical question of how the paternalist can optimize her certitude by combining personal knowledge of the individual patient with population data on treatment refusal/consent of patients facing similar decisions. The paper presents an outline of a decision-making scheme that can be valuable in medical ethics and beyond.     

Patients' prerogatives and perceptions of benefit.

Patients today demand more information about their treatment. Doctors, however, seem reluctant to cast aside ingrained habits of paternalism, believing they can best interpret therapeutic choices for their patients. Whether doctors can be more objective and effective than patients in interpreting the "probabilities" of medical evidence is open to question. On the other hand, the exercise of choice by patients may itself have a bearing on the probabilities of outcome. Involving patients more in making therapeutic choices is justified if doctors can present options in an unbiased and effective manner and if the process improves the outcome of the care delivered.     

Was bioethics founded on historical and conceptual mistakes about medical paternalism?

Bioethics has a founding story in which medical paternalism, the interference with the autonomy of patients for their own clinical benefit, was an accepted ethical norm in the history of Western medical ethics and was widespread in clinical practice until bioethics changed the ethical norms and practice of medicine. In this paper I show that the founding story of bioethics misreads major texts in the history of Western medical ethics. I also show that a major source for empirical claims about the widespread practice of medical paternalism has been misread. I then show that that bioethics based on its founding story deprofessionalizes medical ethics. The result leaves the sick exposed to the predatory power of medical practitioners and healthcare organizations with only their autonomy-based rights to non-interference, expressed in contracts, to protect them. The sick are stripped of the protection afforded by a professional, fiduciary relationship of physicians to their patients. Bioethics based on its founding story reverts to the older model of a contractual relationship between the sick and medical practitioners not worthy of intellectual or moral trust (because such trust cannot be generated by what I call 'deprofessionalizing bioethics'). On closer examination, bioethics based on its founding story, ironically, eliminates paternalism as a moral category in bioethics, thus causing bioethics to collapse on itself because it denies one of the necessary conditions for medical paternalism. Bioethics based on its founding story should be abandoned.     

Responsibility and the limits of patient choice

Patients are generally assumed to have the right to choices about treatment, including the right to refuse treatment, which is constrained by considerations of cost-effectiveness. Independently, many people support the idea that patients who are responsible for their ill health should incur penalties that non-responsible patients do not face. Surprisingly, these two areas have not received much joint attention. This paper considers whether restricting the scope of responsibility to pre-treatment decisions can be justified, or whether a demand to hold people responsible for 'usual suspect' choices such as smoking or failure to exercise commits us to also holding people responsible for their treatment choices. I argue that there is no good reason to support this restriction: those who advocate responsibility for (some) pre-treatment choices should also advocate responsibility for (some) treatment choices. However, I also note that, as with pre-treatment choices, patients may sometimes have reason to choose in ways that do not optimize their health. As such, I also consider a process, based on the idea of public reasons, for deciding which treatment choices patients cannot legitimately be held responsible for, along with a method for considering proposed changes to this category.     

The new paternalism

The author argues that the belief that patient autonomy has great moral value has justified a new form of medical paternalism which can have effects similar to those of the old rejected form. He cites the argument that "all illness represents a state of diminished autonomy" and that therefore autonomy is not overridden when physicians make all decisions. Another view is that, in some situations, withholding information may prevent patient deterioration and loss of autonomy. Abridgement of present autonomy, then, is permissible if it promotes future autonomy. Strasser also rejects physician decision making based on patients' previously communicated values or on the theory that patient values are important but not decisive. He concludes that if we "allow paternalistic practices, then we should admit that we are denying autonomy in light of some other good rather than claim that, somehow, we are respecting autonomy by abridging it."     

Humans' folk physics is sensitive to physical connection and contact between a tool and reward

Three experiments examined adult humans' folk physics (i.e., their naturally occurring understanding of the physical world) using variations of rope-and-banana problems that are used to study chimpanzees' folk physics. When presented with symbolic versions of these problems, the participants' choices were controlled by both the presence of a physical connection between a tool and reward (unlike chimpanzees' choices) and the degree of contact between these objects (more like what controls chimpanzees' choices). Similar results were obtained when actual ropes and bananas were used. We speculate that the degree of contact between a tool and a reward influenced people's behavior because contact and physical connection are often correlated in people's natural environments and because contact is a reliable predictor of physical connection.     

THE DEAD DONOR RULE,VOLUNTARY ACTIVE EUTHANASIA,AND CAPITAL PUNISHMENT

We argue that the dead donor rule, which states that multiple vital organs should only be taken from dead patients, is justified neither in principle nor in practice. We use a thought experiment and a guiding assumption in the literature about the justification of moral principles to undermine the theoretical justification for the rule. We then offer two real world analogues to this thought experiment, voluntary active euthanasia and capital punishment, and argue that the moral permissibility of terminating any patient through the removal of vital organs cannot turn on whether or not the practice violates the dead donor rule. Next, we consider practical justifications for the dead donor rule. Specifically, we consider whether there are compelling reasons to promulgate the rule even though its corresponding moral principle is not theoretically justified. We argue that there are no such reasons. In fact, we argue that promulgating the rule may actually decrease public trust in organ procurement procedures and medical institutions generally – even in states that do not permit capital punishment or voluntary active euthanasia. Finally, we examine our case against the dead donor rule in the light of common arguments for it. We find that these arguments are often misplaced – they do not support the dead donor rule. Instead, they support the quite different rule that patients should not be killed for their vital organs.     

Paternalism and the argument from illiteracy

Throughout this essay, I will consider an argument frequently used to justify paternalistic behavior toward a specific class of persons: illiterate people. The argument states that illiterate people are uneducated, lack information and understanding, and are thus unable to make decisions. Therefore, it is argued, paternalism in their case is justified. The conclusion is that illiterate persons cannot be autonomous. The justification for this view is based on an a priori attitude: since it is impossible to communicate, physicians should decide which kind of treatment the illiterate patient should receive. This argument is frequently used even though its proponents may not be aware of its implications. Given the importance and uncritical acceptance this argument has in Argentina, and also in other Latin American countries, I think it is relevant to analyze carefully what it means. I propose a thorough analysis of this argument, of its implications and an evaluation of whether it is acceptable.     

PATERNALISM AND THE ARGUMENT FROM ILLITERACY

Throughout this essay, I will consider an argument frequently used to justify paternalistic behavior toward a specific class of persons: illiterate people. The argument states that illiterate people are uneducated, lack information and understanding, and are thus unable to make decisions. Therefore, it is argued, paternalism in their case is justified. The conclusion is that illiterate persons cannot be autonomous. The justification for this view is based on an a priori attitude: since it is impossible to communicate, physicians should decide which kind of treatment the illiterate patient should receive. This argument is frequently used even though its proponents may not be aware of its implications. Given the importance and uncritical acceptance this argument has in Argentina, and also in other Latin American countries, I think it is relevant to analyze carefully what it means. I propose a thorough analysis of this argument, of its implications and an evaluation of whether it is acceptable.     

Between “Science” and “Superstition”: Moral Perceptions of Induced Abortion Among Young Adults in Vietnam

Despite the increasing use ofreproductive technologies the world over,anthropological studies have paid remarkablylimited attention to the ethical dilemmasinvolved in people's choices of suchtechnologies. Against this background, theauthor analyzes moral perceptions of inducedabortion among unmarried young adults in urbanNorth Vietnam. While the ethical aspects ofabortion are shrouded in silence in public lifein Vietnam, the young people participating inthe study expressed strong moral scepticismtowards the practice of abortion, even whileundergoing it themselves. Through the analysisof young people's experiences and perceptions,the paper demonstrates how moral ideas are tiedto particular social situations and structuredby larger socio-political circumstances. It isargued that moral notions which are dominant ina society's public sphere may not berepresentative of the moral sentiments that arelived in practice and felt in private.     

Drug addiction: the neurobiology of behaviour gone awry

Drug addiction manifests as a compulsive drive to take a drug despite serious adverse consequences. This aberrant behaviour has traditionally been viewed as bad "choices" that are made voluntarily by the addict. However, recent studies have shown that repeated drug use leads to long-lasting changes in the brain that undermine voluntary control. This, combined with new knowledge of how environmental, genetic and developmental factors contribute to addiction, should bring about changes in our approach to the prevention and treatment of addiction.     

Reconsidering counselling and consent

In the current era patient autonomy is enormously important. However, recently there has also been some movement back to ensure that trust in the doctor's skill, knowledge and virtue is not excluded in the process. These new nuances of informed consent have been referred to by terms such as beneficent paternalism, experience‐based paternalism and we would add virtuous paternalism. The purpose of this paper is to consider the history and current problematic nature of counselling and consent. Starting with the tradition founded by Hippocrates we trace and seek to understand how relevant aspects of the patient‐doctor relationship have evolved under the influences of subsequent moral theories. Finally we tentatively endorse certain modes of counselling in the current era in order to promote morally sound, good clinical practice.     

Dignity Promotion and Beneficence

The concept of dignity has occasioned a robust conversation in recent healthcare scholarship. When viewed as a whole, research on dignity in healthcare has engaged each of the four bioethical principles popularized by Beauchamp and Childress, but has paid the least attention to beneficence. In this paper, we look at dignity and beneficence. We focus on the dignity promotion component of a model of dignity derived from a grounded theory study. After describing the study and presenting a précis of the resulting model, we review the principle of beneficence and look at the ways in which the notion of dignity promotion can be used to complement our understanding of this principle. Specifically, we explore what we can learn from dignity promotion about the relational nature of beneficence in healthcare and how dignity promotion can be marshaled to help address the epistemological quandary of soft paternalism.     

The pedicled transposition of the digastric and stylohyoid muscles in the treatment of velopharyngeal incompetence. Anatomic basis and clinical application]

The anatomical basis for the application of neurovascular pedicled muscle transfers of the digastric and stylohyoid muscles in the treatment of velopharynx incompetence is described. The fact that the neurovascular pedicle is located in the cranial third of the muscle bellies provides the safety of the operative procedure. The muscles have to be dissected with respect to that. The direction in which the transferred muscles pull is described. The muscle transposition is combined with the classic Wardill-Kilner operation to lengthen the soft palate. The transferred muscles have to avoid scar contraction and shortening of the soft palate and to gain a muscular function of the soft palate. The clinical use is justified in rare cases as demonstrated in one case.     

Addiction,Voluntary Choice,and Informed Consent: A Reply to Uusitalo and Broers

In an earlier article in this journal I argued that the question of whether heroin addicts can give voluntary consent to take part in research which involves giving them a choice of free heroin does not – in contrast with a common assumption in the bioethics literature – depend exclusively on whether or not they possess the capacity to resist their desire for heroin. In some cases, circumstances and beliefs might undermine the voluntariness of the choices a person makes even if they do possess a capacity for self‐control. Based on what I took to be a plausible definition of voluntariness, I argued that the circumstances and beliefs typical of many vulnerable heroin addicts are such that we have good reasons to suspect they cannot give voluntary consent to take part in such research, even assuming their desire for heroin is not irresistible. In a recent article in this journal, Uusitalo and Broers object to this on the grounds that I misdescribe heroin addicts' options set, that the definition of voluntariness on which I rely is unrealistic and too demanding, and, more generally, that my view of heroin addiction is flawed. I think their arguments derive from a misunderstanding of the view I expressed in my article. In what follows I hope therefore to clarify my position.