Clinicians cannot obtain valid consent to treatment because they cannot guess which treatment option will serve a particular patient's best interests. These guesses could be made more accurately if patients were paired with providers who share their deep values.

This essay illustrates what the Chinese family-based and harmony-oriented model of medical decision making is like as well as how it differs from the modern Western individual-based and autonomy-oriented model in health care practice. The essay discloses the roots of the Chinese model in the Confucian account of the family and the Confucian view of harmony. By responding to a series of questions posed to the Chinese model by modern Western scholars in terms of the basic individualist concerns and values (...) embedded in the modern Western model, we conclude that the Chinese people have justifiable reasons to continue to apply the Chinese model to their contemporary health care and medical practice. (shrink)

In most, if not all, jurisdictions with active organ transplantation programs, there is a persistent desire to increase donation rates because the demand for transplantable organs exceeds the supply. China, in particular, faces an extraordinary gap between the number of organs donated by deceased donors and the number of people seeking one or more transplants. China might look to Western countries with higher donation rates to determine how best to introduce Western practices into the Chinese system. In attempting to increase (...) its organ donation rate, China must not only ensure that its organ donation system reflects different Chinese cultural values, but also that it avoids the ethical problems of the United States and of other Western systems. This article examines four such problems. They concern the family, obtaining permission for organ donation, the definition and diagnosis of “brain death,” and trust. Revisions to the Chinese system should involve a careful look to China and Chinese cultural resources rather than to Western models. (shrink)

The Western focus on personal autonomy as the normative basis for securing persons’ consent to their treatment renders this autonomy-based approach to informed consent vulnerable to the charge that it is based on an overly atomistic understanding of the person. This leads to a puzzle: how does this generally-accepted atomistic understanding of the person fits with the emphasis on familial consent that occurs when family members are provided with the opportunity to veto a prospective donor’s wish to donate after she (...) has died and her organs are being considered for harvesting? It is argued in this paper that this charge can be met and this puzzle dissolved once it is recognized that autonomy is an inherently social concept. (shrink)

Published in the American Journal of Bioethics.

The notion of respect for autonomy dominates bioethical discussion, though what qualifies precisely as autonomous action is notoriously elusive. In recent decades, the notion of autonomy in medical contexts has often been defined in opposition to the notion of autonomy favoured by theoretical philosophers. Where many contemporary theoretical accounts of autonomy place emphasis on a condition of “authenticity”, the special relation a desire must have to the self, bioethicists often regard such a focus as irrelevant to the concerns of medical (...) ethics, and too stringent for use in practical contexts. I argue, however, that the very condition of authenticity that forms a focus in theoretical philosophy is also essential to autonomy and competence in medical ethics. After tracing the contours of contemporary authenticity-based theories of autonomy, I consider and respond to objections against the incorporation of a notion of authenticity into accounts of autonomy designed for use in medical contexts. By looking at the typical problems that arise when making judgments concerning autonomy or competence in a medical setting, I reveal the need for a condition of authenticity—as a means of protecting choices, particularly high-stakes choices, from being restricted or overridden on the basis of intersubjective disagreement. I then turn to the treatment of false and contestable beliefs, arguing that it is only through reference to authenticity that we can make important distinctions in this domain. Finally, I consider a potential problem with my proposed approach; its ability to deal with anorexic and depressive desires. (shrink)

The concept of autonomy as self-sovereignty is developed in this essay through an examination of the thought of American transcendentalist philosophers Emerson and Thoreau. It is conceived as the quality of living in accordance with one’s inner nature or genius. This conception is grounded in a transcendentalist moral anthropology that values independence, self-reliance, spirituality, and the capacity to find beauty in the world. Though still exerting considerable popular and academic influence, both the concept of autonomy as self-sovereignty and the underlying (...) anthropology diverge in important ways from counterparts that are prominent in contemporary bioethics. Autonomy as self-sovereignty calls into question the manifold ways that patients (and citizens) are brought to heel by institutional (and political) values they do not themselves affirm. It also emphasizes the inevitable deep plurality of moral visions of health and appropriate healthcare, rejecting tendencies (strong in mainstream bioethics) to regard “health” as a univocal concept or healthcare as a basic need, to attempt to conform “reasonable” clinical decision-making to a single model, and to appoint government as a guarantor of access to healthcare or a regulator of healthcare standards. Autonomy as self-sovereignty, like its competitors, can justify itself only in question-begging terms. Still, bioethics might do well to recognize it within the mix of moral visions. (shrink)

Paternal authority is recommended as a valid Christian resource for conflict resolution in biomedical (and other inner-familial) decision making. Its bases are explored in view of the two-fold creation account in Genesis, interpreted in the light of the Pauline theology. In addition, a theological account is proposed that portrays the taxis between husband and wife as a condition under which humans can seek to emulate the inner-Trinitarian love. The relationship between that love (as portrayed in St. Basil’s On the Holy (...) Spirit), the love between God and man, and the love between the sexes (as further extended to the children in a family that constitutes a “small church”), is described in terms of an interplay between the Divine offer of grace and the human response of obedience. In framing their marital love according to the model of Christ and His Church, couples can also profit from the ascetical therapy predicted for their fallen nature in the “curse” that drove our forefathers from Paradise. (shrink)

The failure to maintain a canonical Christian understanding of the family as a microcosm of the church oriented toward deification instead of a microcosm of society aimed at social ends has opened Christians up to an uncritical adoption of non-Christian approaches in medical decision making. This article begins by identifying the Christian family crisis not as a liberal versus conservative debate centered on the form and function of the family, but more fundamentally as an ecclesial versus sociological understanding of the (...) Christian family. The article presents a historical sketch of the circumstances that have led to this contemporary crisis in the Western Christian family, followed by an analysis that provides a canonical account of the Christian family as exemplified in the thought of Gregory the Theologian. This article concludes by looking at the specific issue of labor and delivery in the United States, and the implications for a canonical Christian understanding of labor and delivery in light of contemporary medical practices. (shrink)

Truth-telling to competent patients is widely affirmed as a cardinal moral and biomedical obligation in contemporary Western medical practice. In contrast, Chinese medical ethics remains committed to hiding the truth as well as to lying when necessary to achieve the family's view of the best interests of the patient. This essay intends to provide an account of the framing commitments that would both justify physician deception and have it function in a way authentically grounded in the familist moral concerns of (...) Confucianism. It reflects on the moral conditions and possibilities for sustaining a Confucian understanding of truth-telling and consent in mainland China. (shrink)

This paper explores organ donation through the perspective of Reconstructionist Confucianism. I argue that for organ donation in China to be morally permissible, public policy must conform to the norms of Confucian benevolence. Reconstructionist Confucianism appreciates benevolence as an objectively important feature of morality deeply connected to moral rules governing propriety, integrity, righteousness, and human freedom. Here, benevolence involves sincere affection for another as an intrinsic good, rather than as a means to achieve other purposes. It requires developing self-restraint and (...) proper respect for others. As I argue, family-based consent is essential for ensuring that organ donation conforms to such an understanding of benevolence and is, thereby, compatible with Confucian culture. Consequently, legislation in China should solidify family-based consent for organ donation to consolidate a benevolent family environment as the basis of morality, law, and social existence. (shrink)

On what basis should we judge whether a parent’s medical decision for their child is morally acceptable? In a recent article, Johan Bester attempts to answer this question by defending a version of the Best Interest Standard for parental decision making. The purpose of this paper is to identify a number of problems faced by Bester’s version of BIS and to suggest ways to redress these problems. Accordingly, we intend to advance the project of formulating a method for guiding parents’ (...) medical decision making for their children. We argue that Bester’s standard fails to accommodate the autonomy of the child and that his criteria for assessing the reasonableness of the parents’ argument for their decision is too weak. We conclude that properly addressing these worries renders his test otiose and that it ought to be replaced with the three commonly held principles of bioethics—the principles of autonomy, beneficence, non-maleficence—and a standard of reasonableness. (shrink)

The advanced donation program was proposed in 2014 to allow an individual to donate a kidney in order to provide a voucher for a kidney in the future for a particular loved one. In this article, we explore the logistical and ethical issues that such a program raises. We argue that such a program is ethical in principle but there are many logistical issues that need to be addressed to ensure that the actual program is fair to both those who (...) do and do not participate in this program. (shrink)

Public surveys conducted in many countries report widespread willingness of individuals to donate a kidney while alive to a family member or close friend, yet thousands suffer and many die each year while waiting for a kidney transplant. Advocates of financial incentive programs or “regulated markets” in kidneys present the problem of the kidney shortage as one of insufficient public motivation to donate, arguing that incentives will increase the number of donors. Others believe the solutions lie—at least in part—in facilitating (...) so-called “altruistic donation;” harnessing the willingness of relatives and friends to donate by addressing the many barriers which serve as disincentives to living donation. Strategies designed to minimize financial barriers to donation and the use of paired kidney exchange programs are increasingly enabling donation, and now, an innovative program designed to address what has been termed “chronologically incompatible donation” is being piloted at the University of California, Los Angeles, and elsewhere in the United States. In this program, a person whose kidney is not currently required for transplantation in a specific recipient may instead donate to the paired exchange program; in return, a commitment is made to the specified recipient that priority access for a living-donor transplant in a paired exchange program will be offered when or if the need arises in the future. We address here potential ethical concerns related to this form of organ “banking” from living donors, and argue that it offers significant benefits without undermining the well-established ethical principles and values currently underpinning living donation programs. (shrink)

This essay indicates that Confucian family-based ethics is by no means a stumbling block to organ donation in China. We contend that China should not change to an opt-out consent system in order to enhance donation because a “hard” opt-out system is unethical, and a “soft” opt-out system is unhelpful. We argue that the recently-introduced familist model of motivation for organ donation in mainland China can provide a proper incentive for donation. This model, and the family priority right that this (...) model supports, is ethically justifiable in terms of Confucian family-based ethics. (shrink)

The essays in this issue of The Journal of Medicine and Philosophy explore an innovative voucher program for encouraging kidney donation. Discussions cluster around a number of central moral and political/theoretical themes: What are the direct and indirect health care costs and benefits of such a voucher system in human organs? Do vouchers lead to more effective and efficient organ procurement and allocation or contribute to greater inequalities and inefficiencies in the transplantation system? Do vouchers contribute to the inappropriate commodification (...) of human body parts? Is there a significant moral difference between such a voucher system and a market in human organs for transplantation? This paper argues that while kidney vouchers constitute a step in the right direction, fuller utilization of market-based incentives, including, but not limited to, barter exchanges, would save more lives and further reduce human suffering. (shrink)

China is developing an ethical and sustainable organ donation and procurement system based on voluntary citizen donation. The gift-of-life metaphor has begun to dominate public discussion and education about organ donation. However, ethical and legal problems remain concerning this “gift-of-life” discourse: In what sense are donated organs a “gift-of-life”? What constitutes the ultimate worth of such a gift? On whose authority should organs as a “gift-of-life” be donated? There are no universal answers to these questions; instead, responses must be compatible (...) with local cultural values. This paper argues that from a Confucian point of view, organs should be viewed as a gift from the donor’s family, and that final dispositional authority should also rest with the donor’s family. The worth of such a “gift” rests on the virtue of ren, the origin of which is family love. Ultimately, I will argue that a family-based consent model for deceased organ donation is not merely justified, but morally required in the Chinese cultural context. (shrink)

In light of the variety of uses of the term autonomy in recent bioethics literature, in this paper, I suggest that competence, not being as contested, is better placed to play the anti-paternalistic role currently assigned to autonomy. The demonstration of competence, I will argue, can provide individuals with robust spheres of non-interference in which they can pursue their lives in accordance with their own values. This protection from paternalism is achieved by granting individuals rights to non-interference upon demonstration of (...) competence. In this paper, I present a risk-sensitive account of competence as a means of grounding rights to non-interference. On a risk-sensitive account of competence individuals demonstrate their competence by exercising three capacities to the extent necessary to meet a threshold determined by the riskiness of the decision. These three capacities are the capacity to acquire knowledge, use instrumental rationality, and form and revise a life plan. (shrink)

To be an autonomous agent is to determine one’s own path in life. However, this cannot plausibly be seen as a one-off affair. An autonomous agent does not merely set herself on a particular course and then lock the steering wheel in place, so to speak, but must maintain some form of ongoing control over her direction in life—must keep her eyes on the road and her hands on the wheel. Circumstances often change in important and unexpected ways, after all, (...) and it is reasonable to think that a crucial part of autonomy consists of the ability and disposition to recognize and properly respond to such changes. This implies, I contend, that a patient whose initial decision to undergo a given treatment satisfied plausible requirements of autonomy, but who is now unable to recognize that available evidence indicates the need to reconsider her medical situation and options has come to lack autonomy with respect to her desire to continue that treatment. However, and despite its importance with respect to both theoretical understandings of autonomy and applications of the concept to clinical ethics, this ongoing aspect of autonomy has received little attention. This paper aims to go some way toward remedying that. I first critically review two of the few theories of autonomy that do address “evidence-responsiveness” so as to identify and elaborate what I take to be the most promising way in which to account for this aspect of autonomy. After considering and responding to a possible objection to the evidence-responsiveness condition I propose, I conclude by discussing its clinical implications. That condition, I argue, is not merely theoretically sound, but can and should be applied to clinical practice. (shrink)

Organ procurement policy from the recently deceased recasts families into gatekeepers of a scarce medical resource. To the frustration of organ procurement teams, families do not always authorize organ donation. As a result, efforts to increase the number of organs available for transplantation often seek to limit the authority of families to refuse organ retrieval. For example, in some locales if a deceased family member has satisfied the legal conditions for first-person prior assent, a much looser and easier standard to (...) satisfy than informed consent, organ retrieval may proceed despite the family’s objections. Some countries have replaced voluntary consent to organ donation with forms of organ conscription. Often referred to under the misnomer “presumed consent,” such policies legalize the harvesting of organs at death, unless individuals exercise official options to opt out. As this article explores, however, there are good grounds for affirming the authority of the family to consent to or to deny organ donation on behalf of recently deceased family members, as well as to reject first-person assent and “presumed consent” policies of organ procurement. Insofar as individuals have failed clearly and competently to provide informed consent to organ donation, moral authorization for the use of the person and his body ought to be grounded on the foundational authority of the family, rather than the state’s supposed interests in obtaining organs for transplantation. (shrink)

This paper asks whether investigation into the ontology of the extended family can help us to think about and resolve questions concerning the nature of the family’s decision-making authority where organ donation is concerned. Here, “extended family” refers not to the multigenerational family all living at the same time, but to the family extended past its living boundaries to include the dead and the not yet living. How do non-existent members of the family figure into its ontology? Does an answer (...) to this question help to resolve questions about the distribution of authority within the extended family? (shrink)

The family, like so many other modern institutions, often looks more like an arena of competing wills than an ordered life in common. If we hope, therefore, to protect the special role that parents should have in relation to their children, and that the family in general should have in relation to its members, we will need a much more developed account of the goods that are at stake and why we think they are important enough to require authority, even (...) when members of the family oppose the decisions of that authority. This essay develops an older account of authority, one rooted in the thought of Aristotle and St. Thomas Aquinas, and applies this account to our present difficulties concerning the authority of the family over its members in health care decision making. (shrink)

The United Nations Convention on the Rights of the Child risks harm to adolescents insofar as it encourages not only poor decision making by adolescents but also parenting styles that will have an adverse impact on the development of mature decision-making capacities in them. The empirical psychological and neurophysiological data weigh against augmenting and expression of the rights of children. Indeed, the data suggest grounds for expanding parental authority, not limiting its scope. At the very least, any adequate appreciation of (...) the moral claims regarding the authority of parents with respect to the decision-making capacity of adolescents needs to be set within an understanding of the psychological and neurophysiological facts regarding the development of adolescent decision-making capacity. (shrink)

In Roper v. Simmons (2005) the United States Supreme Court announced a paradigm shift in jurisprudence. Drawing specifically on mounting scientific evidence that adolescents are qualitatively different from adults in their decision-making capacities, the Supreme Court recognized that adolescents are not adults in all but age. The Court concluded that the overwhelming weight of the psychological and neurophysiological data regarding brain maturation supports the conclusion that adolescents are qualitatively different types of agents than adult persons. The Supreme Court further solidified (...) its position regarding adolescents as less than fully mature and responsible decisionmakers in Graham v. Florida (2010) and Miller v. Alabama (2012). In each case, the Court concluded that the scientific evidence does not support the conclusion that children under 18 years of age possess adult capacities for personal agency, rationality, and mature choice. This study explores the implications of the Supreme Court decisions in Roper v. Simmons, Graham v. Florida, and Miller v. Alabama for the “mature minor” standard for medical decision making. It argues that the Supreme Court’s holdings in Roper, Graham, and Miller require no less than a radical reassessment of how healthcare institutions, courts of law, and public policy are obliged to regard minors as medical decisionmakers. The “mature minor” standard for medical decision making must be abandoned. (shrink)

Traditionally, physicians and parents made decisions about children’s health care based on western practices. More recently, with legal and ethical development of informed consent and recognition for decision making, children are becoming active participants in their care. The extent to which this is happening is however blurred by lack of clarity about what children — of diverse levels of cognitive development — are capable of understanding. Moreover, when there are multiple surrogate decision makers, parental and professional conflict can arise concerning (...) children’s ‘best interest’. Giving children a voice and offering choice promotes their dignity and quality of life. Nevertheless, it also presents with many challenges. Case studies using pseudonyms and changed situational identities are used in this article to illuminate the complexity of ethical challenges facing nurses in end-of-life care with children and families. (shrink)

Moral and legal notions engaged in clinical ethics should not only possess analytic clarity but a sound basis in empirical findings. The latter condition brings into question the expansion of the mature minor exception. The mature minor exception in the healthcare law of the United States has served to enable those under the legal age to consent to medical treatment. Although originally developed primarily for minors in emergency or quasi-emergency need for health care, it was expanded especially from the 1970s (...) in order to cover unemancipated minors older than 14 years. This expansion initially appeared plausible, given psychological data that showed the intellectual capacity of minors over 14 to recognize the causal connection between their choices and the consequences of their choices. However, subsequent psychological studies have shown that minors generally fail to have realistic affective and evaluative appreciations of the consequences of their decisions, because they tend to over-emphasize short-term benefits and underestimate long-term risks. Also, unlike most decisionmakers over 21, the decisions of minors are more often marked by the lack of adequate impulse control, all of which is reflected in the far higher involvement of adolescents in acts of violence, intentional injury, and serious automobile accidents. These effects are more evident in circumstances that elicit elevated affective responses. The advent of brain imaging has allowed the actual visualization of qualitative differences between how minors versus persons over the age of 21 generally assess risks and benefits and make decisions. In the case of most under the age of 21, subcortical systems fail adequately to be checked by the prefrontal systems that are involved in adult executive decisions. The neuroanatomical and psychological model developed by Casey, Jones, and Summerville offers an empirical insight into the qualitative differences in the neuroanatomical and neuropsychological bases of adolescent versus adult decision making. These and other data, as well as developing law bearing on the culpability of juvenile criminal offenders, argue for critically re-evaluating the expansion of the mature minor exception with regard to medical decision making, as well as in support of a rebuttable presumption in favor of treating minors as immature decisionmakers. The clinical ethics of adolescent medical decision making will need foundationally to be reconsidered. (shrink)

This study explores the ways in which adolescents, even so-called “mature minors”, lack adequate development of the intellectual, affective, and emotional capacities necessary morally to consent to medical research on their own behalf. The psychological and neurophysiological data regarding brain maturation supports the conclusion that adolescents are qualitatively different types of agents than mature adults. They lack full adult maturity and personal agency. As a result, in addition to the usual requirements for IRB approval, one or both parents, or a (...) legal guardian, should provide informed consent for minor children to participate in medical research. (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)

As medical technology continues to improve, more people will live longer lives with multiple chronic illnesses with increasing cumulative debilitation, including cognitive dysfunction. Combined with the aging of society in most developed countries, an ever-growing number of patients will require surrogate decision-makers. While advance care planning by patients still capable of expressing their preferences about medical interventions and end-of-life care can improve the quality and accuracy of surrogate decisions, this is often not the case, not infrequently leading to demands for (...) ineffective, inappropriate and prolonged interventions. In 1980 LaFollette called for the licensing of prospective parents, basing his argument on the harm they can do to vulnerable people. In this paper, I apply his arguments to surrogate decision-makers for cognitively incapacitated patients, rhetorically suggesting that we require potential surrogates to qualify for this position by demonstrating their ability to make reasonable and rational decisions for others. I employ this theoretical approach to argue that the loose criteria by which we authorize surrogates’ generally unchallenged power should be reconsidered. (shrink)

In the West, mainstream bioethicists tend to appreciate intimate relationships as a hindrance to individual autonomy. Scholars have even argued against approaching a mother to donate a kidney to save the life of her child; the request, they claim, is too manipulative and, thereby, violates her autonomy. For Chinese bioethicists, such a moral analysis is absurd. The intimate relationship between mother and child establishes strong mutual obligations. It creates mutual moral responsibilities that often require sacrifices for each other. This paper (...) argues that while aiding others is a moral duty, helping one’s family is a much stronger duty and poses no threat to one’s autonomy. For Confucianism, empathetic intimate feelings, the heart and mind of ren, rest at the root of morality. It requires that we, as moral beings, assume duties to relieve the suffering of others. The more intimate the relationship the stronger the obligation to assist. The family is a closely knitted moral community. Family members often share living resources, mutual experiences, and a sense of identity. Family members act as a social unit, and, ordinarily, mutual obligations among members have priority over duties to those outside of the family. For Confucian bioethics, family-based consent to medical treatment is regarded as natural and reasonable. Family-based decision making is a taken-for-granted norm of social life. While close family members have priority, Confucianism extends such obligations outward toward members of the extended family and the society at large. There is a general principle of gradation of love, which reflects different degrees of personal intimacy and, therefore, of moral obligation. In this fashion, Confucianism seeks to treat the whole of society as one extended family. Hence, in bioethics, mutual responsibility and family-based consent are regarded as basic principles. Through a series of case discussions, this paper illustrates that atomistic individual-based autonomy offers but a poor response to bioethical issues. (shrink)

Standard models of adolescent risk taking posit that the cognitive abilities of adolescents and adults are equivalent, and that increases in risk taking that occur during adolescence are the result of socio emotional differences in impulsivity, sensation seeking, and lack of self-control. Fuzzy-trace theory incorporates these socio emotional differences. However, it predicts that there are also cognitive differences between adolescents and adults, specifically that there are developmental increases in gist-based intuition that reflects understanding. Gist understanding, as opposed to verbatim-based analysis, (...) generally has been hypothesized to have a protective effect on risk taking in adolescence. Gist understanding is also an essential element of informed consent regarding risks in medical decision- making. Evidence thus supports the argument that adolescents’ status as mature minors should be treated as an exception rather than a presumption, because accuracy in verbatim analysis is not mature gist understanding. Use of the exception should be accompanied by medical experts’ input on the bottom-line gist of risks involved in treatment. (shrink)

US Supreme Court rulings concerning sanctions for juvenile offenders have drawn on the science of brain development and concluded that adolescents are inherently less mature than adults in ways that render them less culpable. This conclusion departs from arguments made in cases involving the mature minor doctrine, in which teenagers have been portrayed as comparable to adults in their capacity to make medical decisions. I attempt to reconcile these apparently incompatible views of adolescents’ decision-making competence. Adolescents are indeed less mature (...) than adults when making decisions under conditions that are characterized by emotional arousal and peer pressure, but adolescents aged 15 and older are just as mature as adults when emotional arousal is minimized and when they are not under the influence of peers, conditions that typically characterize medical decision-making. The mature minor doctrine, as applied to individuals 15 and older, is thus consistent with recent research on adolescent development. (shrink)