A critique of the principle of ‘respect for autonomy’, grounded in African thought

I give an account how the principle of ‘respect for autonomy’ dominates the field of bioethics, and how it came to triumph over its competitors, ‘respect for persons’ and ‘respect for free power of choice’. I argue that ‘respect for autonomy’ is unsatisfactory as a basic principle of bioethics because it is grounded in too individualistic a worldview, citing concerns of African theorists and other communitarians who claim that the principle fails to acknowledge the fundamental importance of understanding persons within the nexus of their communal relationships. I defend the claim that ‘respect for persons’ is a more appropriate principle, as it is able to acknowledge both individual decision making and the essential relationality of persons. I acknowledge that my preference for ‘respect for persons’ is problematic because of the important debate around the definition of ‘personhood’ in bioethics discourse. Relying on Thaddeus Metz's conception of moral status, I propose a relational definition of personhood that distinguishes between persons with agency and persons without agency, arguing that we have different moral obligations to these distinct categories of persons. I claim that this conception of personhood is better able to accommodate our moral intuitions than conventional approaches, and that it is able to do so without being speciesist or question‐begging.     

Sick autonomy

Complex social and economic forces have placed patient autonomy at the center of medical ethics, and thereby displaced an older ethic of physician beneficence. This development arose, and is sustained, by waning trust in the traditional doctor-patient relationship. As patients have increasingly become clients and consumers, a contract basis for medical care has put the ancient covenant of care in jeopardy. Here, a philosophical approach to harmonize the apparent conflicting claims of patient autonomy and physician beneficence is offered by demonstrating that autonomy need not be understood as protecting a threatened identity. If persons are regarded as atomistic, certain defensive notions of individualistic rights-based autonomy prevail; if a relational construction of personal identity is employed instead, then respect for autonomy becomes part of a wider morality of relationship and care. By reconfiguring trust within this latter understanding of personhood, bioethics better balances its concerns over choices and actions with those of relationship and responsibility. Neither atomistic autonomy nor the ethics of responsibility can claim hegemony, for they are mutually interdependent, and a complete account of medicine's moral axis requires that they be integrated. This reorientation is crucial for reasserting the ethos of clinical medicine, whose fundamental mandate remains the care of others.     

African communal basis for autonomy and life choices

I argue that the metaphysical capacity of autonomy is not intrinsically valuable; it is valuable only when used in relation to a community's values and instrumentally for making the proper choices that will promote one's own and the community's well‐being. I use the example of the choice to take one's life by suicide to illuminate this view. I articulate a plausible African conception of personhood as a basis for the idea of relational autonomy. I argue that this conception is better understood as a social‐moral thesis, and not a metaphysical thesis. A metaphysical thesis gives an account of the abstract nature of an atomic individual, his agency, and rational choice. The social‐moral thesis indicates that personhood and autonomy are positive and relational to the life plans, well‐being, material conditions, and the best means for achieving them that are made available and possible by harmonious living in a community. This idea of autonomy is not just having the capacity of freewill; it also involves how such freewill is used, in terms of how an individual's choices are guided by internalized communal values.     

POSTNATAL REPRODUCTIVE AUTONOMY: PROMOTING RELATIONAL AUTONOMY AND SELF-TRUST IN NEW PARENTS

New parents suddenly come face to face with myriad issues that demand careful attention but appear in a context unlikely to provide opportunities for extended or clear-headed critical reflection, whether at home with a new baby or in the neonatal intensive care unit. As such, their capacity for autonomy may be compromised. Attending to new parental autonomy as an extension of reproductive autonomy, and as a complicated phenomenon in its own right rather than simply as a matter to be balanced against other autonomy rights, can help us to see how new parents might be aided in their quest for competency and good decision making. In this paper I show how a relational view of autonomy – attentive to the coercive effects of oppressive social norms and to the importance of developing autonomy competency, especially as related to self-trust – can improve our understanding of the situation of new parents and signal ways to cultivate and to better respect their autonomy.     

Relational autonomy,care, and Jehovah's Witnesses in Germany

Drawing from an ethics of care, relational approaches to autonomy have recently emerged in bioethics. Unlike individual autonomy with its emphasis on patients’ rights, choice, and self‐determination which has been the hallmark of bioethics consistent with the ideology of individualism in neoliberal democracies in Western countries, relational autonomy highlights the relatedness, interdependency, and social embeddedness of patients. By examining the mediating role that male Hospital Liaison Committee members in Germany play in facilitating care that supports Jehovah's Witnesses’ refusal of blood transfusions, this article moves beyond ‘dyadic relations’ and contexts of caregiving. It also contributes to a deeper understanding of care and relational conceptualizations of Witness patients’ autonomy globally.     

Concepts and models of aging well

For a few years, the image associated with the ageing process has been more positive: expressions such as < successful aging >, < well aging > or < healthy aging > are more frequently used in relation to aging. However, there is still a lack of consensus on this appealing and challenging concept. Therefore, we present an overview of its definition, psychosocial determinants and conceptual models. We report that the meaning of the concept varies according to the cultural context (individualistic/relational societies), to the actors' perspectives (researcher/elderly) and according to the dominant approach (biomedical/holistic). Several models have also been identified: some are specific to a scientific domain and rely on a unique marker of well aging; others are multicriterion and embrace a broader field. Psychosocial factors are the most frequent determinants addressed by models. Among these factors, social and personal resources can be mobilized and learned, contrarily to the less modifiable personality traits. In summary, the < well aging > framework offers a unique opportunity to identify and to reinforce positive aspects in the aging process. However, the integration of the various models, more complementary than opposite, into only one meta-model remains a task to be done by researchers for a better effectiveness of < well aging > promotion programs.     

Research, Informed Consent, and the Limits of Disclosure

According to this paper, respect for informed consent implies that subjects should often be told a good deal more than ethical guidelines explicitly or implicitly require. Unless subjects are informed of the researchers' personal characteristics, views, and sponsors whenever they would be likely to consider them significant, their autonomy is being overridden. However, overriding subjects' autonomy is sometimes required by the interests of researchers in not being discriminated against or suffering intrusions into their privacy. This paper resolves the conflict between informed consent and the interests of researchers by recommending that (i) subjects generally should be told of the personal characteristics of researchers when relevant as part of the researchers' job and (ii) that subjects should be told of researchers' views when conceptually connected to the research and (iii) that subjects should almost always be told about sponsorship. While the paper explicitly limits the role of informed consent, these recommendations go significantly beyond most guidelines in their requirements about what information should be disclosed.     

Knowledge, Power, and the Individual in Subarctic Hunting Societies

Northern Athapaskan and Algonquian hunting people balance individual autonomy and the interdependence of community living. For many, knowledge and personal autonomy represent personal power. This article argues that culturally constructed knowledge both empowers and informs subarctic people. Their knowledge may be viewed as a form of social theory. A survey of the literature on subarctic ethnography suggests that social scientists have informed and empowered their own theoretical understanding through an understanding of the native thoughtworld.     

Gender context of personalism in bioethics

Personalism is one of the philosophical perspectives which hold that the reality in person and the human person has the highest intrinsic value. This paper makes reference to Louis Janssens' eight criteria in adequate consideration of the human person but further argues that there is need to consider people as situated agents especially within gender relational perspectives. The paper identifies gender as an important social construction that shapes the consideration of the human persons within socio-spatial spheres. The main crux of the paper is that there is a gender context of personalism and this has profound implications for bioethical agendas. Gender is part of the human condition, especially when we philosophically or sociologically engage the notion of equity and equality within the social system, because social realities in the relational perspective are not impartial, impersonal and equal. Gender does not determine morality but it plays a role in morality and expectations from moral agents. Women have been categorised as a sociological group because their integrity, freedom/autonomy and dignity (which are basic concerns of bioethics) are capable of being threatened. A gender perspective provides important incentives for moral theory which searches for possible conceptual imbalances or blind spots in ethical reflections. The paper refers to Sen's faces of gender inequality and expands on the notion that natality inequality is one of the fundamental levels of gender inequality, which in turn is the primary starting agenda in bioethics. The paper avers that the recognition of the fundamental importance of gender to the organization of social reality and the development of personal identities have important practical implications for bioethics.     

Monuments, power and personhood in the British Neolithic

Recent research on British Neolithic monuments describes how the ordering of space within these sites contributed to the production and maintenance of dominant discourses. This article argues that aspects of this work are implicitly built on conceptions of personhood specific to post-Enlightenment thought, resulting in a somewhat static and one-dimensional conception of power relations during the period. One way out of this problem is provided by anthropological and feminist literature in which an alternative characterization of the self as inherently fluid and relational has been outlined. This facilitates a shifting and contextual conception of power relations which can be reconciled more easily with the evidence from Neolithic monuments for the continuous creation and reinterpretation of spatial meanings.     

Relational Capacity: Broadening the Notion of Decision-Making Capacity in Paediatric Healthcare

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties.     

Prenatal testing: Does reproductive autonomy succeed in dispelling eugenic concerns?

Traditionally, two main rationales for the provision of prenatal testing and screening are identified: the expansion of women’s reproductive choices and the reduction of the burden of disease on society. With the number of prenatal tests available and the increasing potential for their widespread use, it is necessary to examine whether the reproductive autonomy model remains useful in upholding the autonomy of pregnant women or whether it allows public health considerations and even eugenic aims to be smuggled in under the smokescreen of autonomy. In this article I argue that if we are serious about upholding women’s autonomy in the context of prenatal testing, what is needed is a model based on a more robust conception of reproductive autonomy, such as the one defended by Josephine Johnston and Rachel Zacharias as ‘reproductive autonomy worth having’. While Johnston and Zacharias put forward a basic outline of this conception, I apply it to the specific case of prenatal testing and show how it responds to objections levelled against the reproductive autonomy model. I argue that adopting this kind of conception is necessary to avoid fundamental challenges to women’s autonomy when it comes to prenatal screening and testing.     

FINDING AUTONOMY IN BIRTH

Over the last several years, as cesarean deliveries have grown increasingly common, there has been a great deal of public and professional interest in the phenomenon of women 'choosing' to deliver by cesarean section in the absence of any specific medical indication. The issue has sparked intense conversation, as it raises questions about the nature of autonomy in birth. Whereas mainstream bioethical discourse is used to associating autonomy with having a large array of choices, this conception of autonomy does not seem adequate to capture concerns and intuitions that have a strong grip outside this discourse. An empirical and conceptual exploration of how delivery decisions ought to be negotiated must be guided by a rich understanding of women's agency and its placement within a complicated set of cultural meanings and pressures surrounding birth. It is too early to be 'for' or 'against' women's access to cesarean delivery in the absence of traditional medical indications – and indeed, a simple pro- or con- position is never going to do justice to the subtlety of the issue. The right question is not whether women ought to be allowed to choose their delivery approach but, rather, taking the value of women's autonomy in decision-making around birth as a given, what sorts of guidelines, practices, and social conditions will best promote and protect women's full inclusion in a safe and positive birth process.     

Conceptualizing the Person: Hierarchical Society and Individual Autonomy in India

Explanations by social scientists of the Indian person have emphasized the subordination of the individual to caste and family and the compelling influence of hierarchy for explaining motivations for behavior. They have asserted there is no room for individuation and personal autonomy in Indian society. If correct, personal goals should be rare among Indians, rebellion against family and caste should be unusual, and deviation from the etiquette of hierarchy should be infrequent. Based on 23 life histories, the findings of this article contradict this view. As Indians age, achieving a degree of autonomy is an increasingly important theme in adult life and is closely associated with rebellions against hierarchy and with these Indians' perception of responsibility for how their lives turn out. The article concludes that hierarchy has been given such a dominant role in describing Indian society that the significance of personal explanations of autonomy and motivation has been discounted.     

CHALLENGING THE RHETORIC OF CHOICE IN PRENATAL SCREENING

Prenatal screening, consisting of maternal serum screening and nuchal translucency screening, is on the verge of expansion, both by being offered to more pregnant women and by screening for more conditions. The Society of Obstetricians and Gynaecologists of Canada and the American College of Obstetricians and Gynecologists have each recently recommended that screening be extended to all pregnant women regardless of age, disease history, or risk status. This screening is commonly justified by appeal to the value of autonomy, or women's choice. In this paper, I critically examine the value of autonomy in the context of prenatal screening to determine whether it justifies the routine offer of screening and the expansion of screening services. I argue that in the vast majority of cases the option of prenatal screening does not promote or protect women's autonomy. Both a narrow conception of choice as informed consent and a broad conception of choice as relational reveal difficulties in achieving adequate standards of free informed choice. While there are reasons to worry that women's autonomy is not being protected or promoted within the limited scope of current practice, we should hesitate before normalizing it as part of standard prenatal care for all.     

The Individualist Model of Autonomy and the Challenge of Disability

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision.     

À propos de quelques questions éthiques soulevées par la maladie d’Alzheimer

This paper tackles two ethical problems often raised by Alzheimer’s disease and associated disorders: the issue of diagnosis disclosure and the issue of autonomy (or consent). The first part of the paper begins with a critical analysis of the literature on diagnosis disclosure. The authors try to understand why the problem is such a hotly debated issue. They then propose some theoretical and practical perspectives. For example, they suggest that one should allow the patients themselves to designate the persons who should be informed about their health status. They also wonder whether it is really coherent to communicate the diagnosis without discussing its known consequences. The second part of the paper begins with an analytical presentation of the problems one encounters when attempting to respect the autonomy of alzheimer patients. Then the authors discuss the interests and the limits of the proposed solutions to these problems. Finally, they discuss the analyses by two contemporary philosophers (Dworkin and Jaworska) concerning the question: to what extent does Alzheimer’s disease undermine the capacity for autonomy?     

On Taylor's justification of medical informed consent

In contemporary Western biomedical ethics, informed consent practices are commonly justified in terms of the intrinsic value of patient autonomy. James Stacey Taylor maintains that this conception of the moral grounding of medical informed consent is mistaken. On the basis of his reasoning to that effect, Taylor argues that medical informed consent is justified by the instrumental value of personal autonomy. In this article, I examine whether Taylor's justification of medical informed consent is plausible.     

DIAGNOSTIC SELF‐TESTING: AUTONOMOUS CHOICES AND RELATIONAL RESPONSIBILITIES

Diagnostic self‐testing devices are being developed for many illnesses, chronic diseases and infections. These will be used in hospitals, at point‐of‐care facilities and at home. Designed to allow earlier detection of diseases, self‐testing diagnostic devices may improve disease prevention, slow the progression of disease and facilitate better treatment outcomes. These devices have the potential to benefit both the individual and society by enabling individuals to take a more proactive role in the maintenance of their health and by helping society improve health and reduce health costs. However, the full implications of future home‐based diagnostic technology for individuals and society remain unclear due to their novelty. We argue that the development of diagnostic tools, especially for home use, will heighten a number of ethical challenges. This paper will explore some of the ethical implications of home‐based self‐testing diagnostic devices for the autonomous and relational dimensions of the person. This will be facilitated by examining the impact of diagnostic devices for individual autonomy, for the delivery of accurate diagnosis and for the personal significance of the information for the user. The latter will be examined using Charles Taylor's view of personhood and his emphasis on human agency and interpretation. While the ethical issues are not necessarily new, the development of home‐based self‐testing diagnostic devices will make issues regarding autonomy, accuracy of information and personal significance more and more demanding. This will be the case particularly when an individual's autonomous choices come into conflict with the person's relational responsibilities.     

Consent, Autonomy, and the Benefits of Healthy Limb Amputation: Examining the Legality of Surgically Managing Body Integrity Identity Disorder in New Zealand

Upon first consideration, the desire of an individual to amputate a seemingly healthy limb is a foreign, perhaps unsettling, concept. It is, however, a reality faced by those who suffer from body integrity identity disorder (BIID). In seeking treatment, these individuals request surgery that challenges both the statutory provisions that sanction surgical operations and the limits of consent as a defence in New Zealand. In doing so, questions as to the influence of public policy and the extent of personal autonomy become important. Beyond legal issues, BIID confronts dominant conceptions of bodily integrity, medical treatment, and ethical obligations. This paper seeks to identify the relevant public policy concerns raised by BIID in New Zealand and the limits of autonomy, before moving on to consider how BIID sufferers may legally seek the treatment they require and how a doctor might be protected from criminal proceedings for assault for performing this treatment. It will be argued that it is possible to legally consent to the amputation of a healthy limb as medical treatment and that public perception should not be allowed to take precedence over this right.