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.     

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.     

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.     

A more-than-human approach to bioethics: The example of digital health

Digital health technologies are often advocated as a way of helping people monitor, promote and manage their health, care for others and reduce the burden on healthcare systems. Yet these technologies have also been subject to criticism for limiting human flourishing and exacerbating socioeconomic disadvantage. Bioethical appraisals of digital health technologies tend to take a conventional risk-benefit approach, positioning the human subject as a rational, autonomous agent who is acted on by technologies. In this paper, I present a case for adopting an alternative more-than-human perspective on bioethics. A more-than-human approach considers human-technological assemblages and agencies as distributed, relational, situated and emergent. To illustrate the insights that this perspective can offer, I draw on the findings of four empirical projects I have conducted on people’s use of digital devices and platforms used for health-related purposes, including social media groups and online forums, mobile apps and wearable devices. I conclude with the argument that a more-than-human approach to bioethics can begin to incorporate a new ‘zoë ethics’ that can acknowledge and address the deeper affective, multisensory and relational dimensions of humans’ encounters with and enactments of material things and nonhuman creatures.     

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.     

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.     

Medicare prospective payment--the ethical implications of converging clinical and financial decisions in long-term care

The principles of bioethics indicate that Prospective Payment has a moral dimension. Because Prospective Payment unifies clinical and financial decisions, it poses problems for long-term care facilities, especially those motivated by a humanitarian mission rather than financial considerations. This article outlines how Prospective Payment conflicts with the ethical principles of respect for persons, autonomy, justice, promise keeping, and fidelity.     

Savior Siblings,Parenting and the Moral Valorization of Children

Philosophy has long been concerned with ‘moral status’. Discussions about the moral status of children, however, seem often to promote confusion rather than clarity. Using the creation of ‘savior siblings’ as an example, this paper provides a philosophical critique of the moral status of children and the moral relevance of parenting and the role that formative experience, regret and relational autonomy play in parental decisions. We suggest that parents make moral decisions that are guided by the moral significance they attach to children, to sick children and most importantly, to a specific sick child (theirs). This moral valorization is rarely made explicit and has generally been ignored by both philosophers and clinicians in previous critiques. Recognizing this, however, may transform not only the focus of bioethical discourse but also the policies and practices surrounding the care of children requiring bone marrow or cord blood transplantation by better understanding the values at stake behind parental decision making.     

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.     

How infectious diseases got left out--and what this omission might have meant for bioethics

In this article, we first document the virtually complete absence of infectious disease examples and concerns at the time bioethics emerged as a field. We then argue that this oversight was not benign by considering two central issues in the field, informed consent and distributive justice, and showing how they might have been framed differently had infectiousness been at the forefront of concern. The solution to this omission might be to apply standard approaches in liberal bioethics, such as autonomy and the harm principle, to infectious examples. We argue that this is insufficient, however. Taking infectious disease into account requires understanding the patient as victim and as vector. Infectiousness reminds us that as autonomous agents we are both embodied and vulnerable in our relationships with others. We conclude by applying this reunderstanding of agency to the examples of informed consent and distributive justice in health care.     

Autonomy, interdependence, and assisted suicide: respecting boundaries/crossing lines

Western philosophy has been powerfully influenced by a paradigm of personal agency that is linked to an individualistic conception of autonomy. This essay contrasts this conception with an alternative understanding that recognizes a social component built into the very meaning of autonomy. After reviewing feminist critiques of the dominant conception of autonomy, I develop the broad outlines of a relational view and apply this reconceptualization to a concrete situation in order to show how this altered view reconfigures understanding of the participants' relationships and each of their personal perspectives. The situation chosen, physician-assisted suicide, is intended principally to illustrate one respect in which a relational conception of autonomy reframes a controversial moral issue and reveals perspectives toward it that are likely to be obscured when autonomy is viewed through the lens of the dominant individualistic conception. My principal aim is to show that when autonomy is understood relationally, respecting others' autonomy is likely to be a far more complex issue than is apparent within the standard conception, both for those with professional responsibilities and often for personal intimates as well.     

Lessons from Queer Bioethics: A Response to Timothy F. Murphy

‘Bioethics still has important work to do in helping to secure status equality for LGBT people’ writes Timothy F. Murphy in a recent Bioethics editorial. The focus of his piece, however, is much narrower than human rights, medical care for LGBT people, or ending the HIV/AIDS pandemic. Rather, he is primarily concerned with sexuality and gender identity, and the medical intersections thereof (i.e. DSM diagnosis; access to SrS or ARTs). It is the objective of this response to provide an alternate account of bioethics from a Queer perspective. I will situate Queer bioethics within Queer studies, and offer three ‘lessons’ that bioethics can derive from this perspective. These are not definitive rules for Queer bioethics, since it is a field which fundamentally opposes categorizations, favoring pastiche over principles. These lessons are exploratory examples, which both complement and contradict LGBT bioethics. My latter two lessons – on environmental bioethics and disability – overlap with some of Murphy's concerns, as well as other conceptions of LGBT bioethics. However, the first lesson takes an antithetical stance to Murphy's primary focus by resisting all forms of heteroconformity and disavowing reproduction as consonant with Queer objectives and theory. The first lesson, which doubles as a primer in Queer theory, does heavy philosophical lifting for the remainder of the essay. This response to Timothy F. Murphy, whose work is certainly a legacy in bioethics, reveals the multiplicity of discourses in LGBT/Queer studies, many of which are advantageous – even essential – to other disciplines like bioethics.     

An economic theory of patient decision-making

Patient autonomy, as exercised in the informed consent process, is a central concern in bioethics. The typical bioethicist's analysis of autonomy centers on decisional capacity--finding the line between autonomy and its absence. This approach leaves unexplored the structure of reasoning behind patient treatment decisions. To counter that approach, we present a microeconomic theory of patient decision-making regarding the acceptable level of medical treatment from the patient's perspective. We show that a rational patient's desired treatment level typically departs from the level yielding an absence of symptoms, the level we call ideal. This microeconomic theory demonstrates why patients have good reason not to pursue treatment to the point of absence of physical symptoms. We defend our view against possible objections that it is unrealistic and that it fails to adequately consider harm a patient may suffer by curtailing treatment. Our analysis is fruitful in various ways. It shows why decisions often considered unreasonable might be fully reasonable. It offers a theoretical account of how physician misinformation may adversely affect a patient's decision. It shows how billing costs influence patient decision-making. It indicates that health care professionals' beliefs about the 'unreasonable' attitudes of patients might often be wrong. It provides a better understanding of patient rationality that should help to ensure fuller information as well as increased respect for patient decision-making.     

Cruel choices: autonomy and critical care decision-making

Although autonomy is clearly still the paradigm in bioethics, there is increasing concern over its value and feasibility. In agreeing with those concerns, I argue that autonomy is not just a status, but a skill, one that must be developed and maintained. I also argue that nearly all health-care interactions do anything but promote such decisional skills, since they rely upon assent, rather than upon genuinely autonomous consent. Thus, throughout most of their medical lives, patients are socialised to be heteronomous, rather than autonomous. Yet, at the worst possible time--critical care decision-making--when life and death consequences are attached to the choices, the paradigm shifts and real consent is sought, even demanded, thereby making an often traumatic situation even harder. I go on, though, to also reject paternalistic models of beneficence as an alternative. Rather, I conclude that the problem is so fundamental in healthcare that a genuine solution would require a radical restructuring. I recommend steps that can be taken in the interim to improve the situation and to move toward such a restructuring.     

Moral dilemmas in (not) treating patients who feel they are a burden

Working as clinical ethicists in an academic hospital, we find that practitioners tend to take a principle‐based approach to moral dilemmas when it comes to (not) treating patients who feel like a burden, in which respect for autonomy tends to trump other principles. We argue that this approach insufficiently deals with the moral doubts of professionals with regard to feeling that you are a burden as a motive to decline or withdraw from treatment. Neither does it take into adequately account the specific needs of the patient that might underlie their feeling of being a burden to others. We propose a care ethics approach as an alternative. It focuses on being attentive and responsive to the caring needs of those involved in the care process—which can be much more specific than either receiving or withdrawing from treatment. This approach considers these needs in the context of the patient's identity, biography and relationships, and regards autonomy as relational rather than as individual. We illustrate the difference between these two approaches by means of the case of Mrs K. Furthermore, we show that a care ethics approach is in line with interventions that are found to alleviate feeling a burden and maintain that facilitating moral case deliberation among practitioners can supports them in taking a care ethics approach to moral dilemmas in (not) treating patients who feel like a burden.     

The responsibilities of the engaged bioethicist: Scholar,advocate, activist

The work of a bioethicist carries distinctive responsibilities. Alongside those of any worker, there are responsibilities associated with giving guidance to practitioners, policy makers and the public. In addition, bioethicists are professionally exposed to and required to identify situations of moral trouble, and as a result may find themselves choosing to work as advocates or activists, with responsibilities that are distinct from those generally acknowledged within academia. The requirement for bioethics to make normative judgements entails taking a stance, which means there cannot be a sharp line between ‘academic’ or ‘objective’ bioethics, and advocacy/activism, but a continuum of bioethicists’ engagement and an associated continuum of responsibilities.     

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.     

African Bioethics vs. Healthcare Ethics in Africa: A Critique of Godfrey Tangwa

It is nearly two decades now since the publication of Godfrey Tangwa's article, ‘Bioethics: African Perspective’, without a critical review. His article is important because sequel to its publication in Bioethics, the idea of ‘African bioethics’ started gaining some attention in the international bioethics literature. This paper breaks this relative silence by critically examining Tangwa's claim on the existence of African bioethics. Employing conceptual and critical methods, this paper argues that Tangwa's account of African bioethics has some conceptual, methodic and substantive difficulties, which altogether do not justify the idea of African bioethics, at least for now. Contra Tangwa, this article establishes that while African bioethics remains a future possibility, it is more cogent that current efforts in the name of ‘African bioethics’ be primarily re‐intensified towards ‘Healthcare ethics in Africa’.     

The injustice of unsafe motherhood

This paper presents an overview of the dimensions of unsafe motherhood, contrasting data from economically developed countries with some from developing countries. It addresses many common factors that shape unsafe motherhood, identifying medical, health system and societal causes, including women's powerlessness over their reproductive lives in particular as a feature of their dependent status in general. Drawing on perceptions of Jonathan Mann, it focuses on public health dimensions of maternity risks, and equates the role of bioethics in conscientious medical care to that of human rights in public health care. The microethics of medical care translate into the macroethics of public health, but the transition compels some compromise of personal autonomy, a key feature of Western bioethics, in favour of societal analysis. Religiously-based morality is seen to have shaped laws that contribute to unsafe motherhood. Now reformed in former colonizing countries of Europe, many such laws remain in effect in countries that emerged from colonial domination. UN conferences have defined the concept of 'reproductive health' as one that supports women's reproductive self-determination, but restrictive abortion laws and practices epitomize the unjust constraints to which many women remain subject, resulting in their unsafe motherhood. Pregnant women can be legally compelled to give the resources of their bodies to the support of others, while fathers are not legally compellable to provide, for instance, bone-marrow or blood donations for their children's survival. Women's unjust legal, political, economic and social powerlessness explains much unsafe motherhood and maternal mortality and morbidity.     

Together we lived,and alone you died: Loneliness and solidarity in Gaza

This essay discusses and weaves together three interrelated topics: loneliness as a neglected bioethics problem, solidarity as one potential solution to loneliness, and the Israeli‐Palestinian Conflict as a neglected bioethics problem in which loneliness is stark. I first present and define various kinds of loneliness, focusing on ethical loneliness, defined as suffering injustice without a proper repair process. I next discuss current health conditions in Gaza, focusing on healthcare providers who, according to the UN, are being intentionally targeted by Israel. I explain how the various kinds of loneliness are reflected among people in Gaza. I lastly relate together the notions of solidarity, responsibility and personal autonomy, arguing that bioethicists and healthcare providers have a duty to support the people in Gaza, stemming from solidarity and an extended responsibility perspective.