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.     

Values at stake: autonomy, responsibility, and trustworthiness in relation to genetic testing and personalized nutrition advice

Personalized nutrition has the potential to enhance individual health control. It could be seen as a means to strengthen people’s autonomy as they learn more about their personal health risks, and receive dietary advice accordingly. We examine in what sense personalized nutrition strengthens or weakens individual autonomy. The impact of personalized nutrition on autonomy is analyzed in relation to responsibility and trustworthiness. On a societal level, individualization of health promotion may be accompanied by the attribution of extended individual responsibility for one’s health. This constitutes a dilemma of individualization, caused by a conflict between the right to individual freedom and societal interests. The extent to which personalized nutrition strengthens autonomy is consequently influenced by how responsibility for health is allocated to individuals. Ethically adequate allocation of responsibility should focus on prospective responsibility and be differentiated with regard to individual differences concerning the capacity of adults to take responsibility. The impact of personalized nutrition on autonomy also depends on its methodological design. Owing to the complexity of information received, personalized nutrition through genetic testing (PNTGT) is open to misinterpretation and may not facilitate informed choices and autonomy. As new technologies, personalized nutrition and PNTGT are subject to issues of trust. To strengthen autonomy, trust should be approached in terms of trustworthiness. Trustworthiness implies that an organization that develops or introduces personalized nutrition can show that it is competent to deal with both the technical and moral dimensions at stake and that its decisions are motivated by the interests and expectations of the truster.     

Self-Determination vs. Family-Determination: Two Incommensurable Principles of Autonomy

Most contemporary bioethicists believe that Western bioethical principles, such as the principle of autonomy, are universally binding wherever bioethics is found. According to these bioethicists, these principles may be subject to culturally-conditioned further interpretations for their application in different nations or regions, but an 'abstract content' of each principle remains unchanged, which provides 'an objective basis for moral judgment and international law'. This essay intends to demonstrate that this is not the case. Taking the principle of autonomy as an example, this essay argues that there is no such shared 'abstract content' between the Western bioethical principle of autonomy and the East Asian bioethical principle of autonomy. Other things being equal, the Western principle of autonomy demands self-determination, assumes a subjective conception of the good and promotes the value of individual independence, whilst the East Asian principle of autonomy requires family-determination, presupposes an objective conception of the good and upholds the value of harmonious dependence. They differ from each other in the most general sense and basic moral requirement.     

Self-determination vs. family-determination: two incommensurable principles of autonomy: a report from East Asia

Most contemporary bioethicists believe that Western bioethical principles, such as the principle of autonomy, are universally binding wherever bioethics is found. According to these bioethicists, these principles may be subject to culturally-conditioned further interpretations for their application in different nations or regions, but an 'abstract content' of each principle remains unchanged, which provides 'an objective basis for moral judgment and international law'. This essay intends to demonstrate that this is not the case. Taking the principle of autonomy as an example, this essay argues that there is no such shared 'abstract content' between the Western bioethical principle of autonomy and the East Asian bioethical principle of autonomy. Other things being equal, the Western principle of autonomy demands self-determination, assumes a subjective conception of the good and promotes the value of individual independence, whilst the East Asian principle of autonomy requires family-determination, presupposes an objective conception of the good and upholds the value of harmonious dependence. They differ from each other in the most general sense and basic moral requirement.     

Bioethics and conflicts of interest

Bioethics has been subject to considerable social criticism in recent years. One criticism that has caused particular discomfort in the bioethics community is that bioethicists, because of the way their work is funded, are involved in profound conflicts of interest that undermine their title to be considered independent moral commentators on developments in biomedicine and biotechnology. This criticism draws its force from the assumption that bioethics is, or ought to be, a type of normative social criticism. Versions of this criticism come from both the political left and right. For instance, such criticisms include allegations that bioethics is inherently socially conservative, that it is inherently “pro-technology”, that it lays spurious claims to moral and social authority and expertise, that its focus on autonomy links it to neoliberal theories of choice, and that it is an ideological mystification of real social relationships and political power. This commentary paper analyses the problem of bioethical conflict of interest, and argues that the types of conflict of interest facing bioethics are inherent to the role of “public intellectual” that bioethicists generally wish to assume. The paper defends this conception of the role of the bioethicist, arguing that bioethicists should be interested and openly so.     

Women’s empowerment and rural revolution: rethinking “failed development”

One of the most frequently advanced explanations of the Maoists’ popularity in rural Nepal links dissatisfaction with the State to forms of consciousness and changes in expectations that are products and processes of development. Such theories often attribute popular support for the insurrection to frustrated desires stemming from “failed” or “incomplete” development. Against this, others suggest that it was the very “success” of empowerment programs which aimed to raise participants’ consciousness of oppression and its roots that inspired villagers to embrace revolutionary action. This paper argues that, despite their differences, both hypotheses reflect assumptions about gendered selfhood and political action that limit their recognition of what motivates Maoist sympathies. Extended research with women in Gorkha—a district where female support for the rebels is said to be especially strong—reveals that Gorkhali women’s support for the rebels is not inspired primarily by the desire for greater autonomy, choice or absolute liberation from social constraints, all of which ideals valorize a culturally specific vision of individual agency. Rather, women there report a sense of self that defines itself through social relations and commitments and which values the common good over individual self-interest, which they associate with an unjust state. The disjuncture between Gorkhali women’s own understandings of self and society and prevailing theories of what motivates people to rebel highlights the modernist assumptions that underlie—and potentially distort—otherwise diverse scholarly perspectives. Likewise, it implies that rebellions may be less about consciousness and more about morality than either “failed” or “successful” theories presume.     

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.     

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.     

Rethinking counselling in prenatal screening: An ethical analysis of informed consent in the context of non-invasive prenatal testing (NIPT)

Informed consent is a key condition for prenatal screening programmes to reach their aim of promoting reproductive autonomy. Reaching this aim is currently being challenged with the introduction of non-invasive prenatal testing (NIPT) in first-trimester prenatal screening programmes: amongst others its procedural ease—it only requires a blood draw and reaches high levels of reliability—might hinder women’s understanding that they should make a personal, informed decision about screening. We offer arguments for a renewed recognition and use of informed consent compared to informed choice, and for a focus on value-consistent choices and personalized informational preferences. We argue for a three-step counselling model in which three decision moments are distinguished and differently addressed: (1) professionals explore women’s values concerning whether and why they wish to know whether their baby has a genetic disorder; (2) women receive layered medical-technical information and are asked to make a decision about screening; (3) during post-test counselling, women are supported in decision-making about the continuation or termination of their pregnancy. This model might also be applicable in other fields of genetic (pre-test) counselling, where techniques for expanding genome analysis and burdensome test-outcomes challenge counselling of patients.     

Anthropological and Sociological Critiques of Bioethics

Anthropologists and sociologists offer numerous critiques of bioethics. Social scientists criticize bioethicists for their arm-chair philosophizing and socially ungrounded pontificating, offering philosophical abstractions in response to particular instances of suffering, making all-encompassing universalistic claims that fail to acknowledge cultural differences, fostering individualism and neglecting the importance of families and communities, and insinuating themselves within the “belly” of biomedicine. Although numerous aspects of bioethics warrant critique and reform, all too frequently social scientists offer ungrounded, exaggerated criticisms of bioethics. Anthropological and sociological critiques of bioethics are hampered by the tendency to equate bioethics with clinical ethics and moral theory in bioethics with principlist bioethics. Also, social scientists neglect the role of bioethicists in addressing organizational ethics and other “macro-social” concerns. If anthropologists and sociologists want to provide informed critiques of bioethics they need to draw upon research methods from their own fields and develop richer, more informed analyses of what bioethicists say and do in particular social settings.     

Do adolescents' bioethical decisions differ from those of experts?

If our students are to become well-informed decision makers then they need to be aware of the practical applications of current developments in biotechnology, and appreciate the social and bioethical implications of this relatively new and controversial science. In this study, Year 10 (14 – 15 year old) science students in two schools were taught biotechnology courses that introduced them to bioethics. At the conclusion of the course, students completed a survey in which they made a decision about three bioethical dilemmas, and gave reasons to support their decision. The students' responses and reasons were compared with those of three experts. Although there was variation amongst students, the results of the survey suggested that the majority of students tended to resolve and justify their decisions in a way that was naive, idealistic, and rights based. Compared to the experts, the students seemed to give undue emphasis to the bioethical principle of autonomy. In addition, the reasons supplied by many of the students to support their decisions suggested that they did not consider long term consequences. These findings have ramifications for teachers who wish to include bioethical dilemmas in their teaching.     

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.     

Experiences and attitudes towards end-of-life decisions amongst Danish physicians

In this survey we have investigated the experiences and attitudes of Danish physicians regarding end-of-life decisions. Most respondents have made decisions that involve hastening the death of a patient, and almost all find it acceptable to do so. Such decisions are made more often, and considered ethically more acceptable, with the informed consent of the patient than without. But both non-resuscitation decisions, and decisions to provide pain relief in doses that will shorten the patient's life, have been made and found acceptable by at least 50% of the respondents, even when there is no informed consent. Furthermore, 12% have doubled morphine dosages with fixed intervals, thus providing doses substantially higher than that necessary to control pain, without the informed consent of the patient. Two per cent have helped in assisted suicide, and 5% have administered a lethal injection at the patient's request. Respectively 37% and 34% find these last two practices ethically acceptable. Amongst those that do not find them acceptable, the most important reasons to be opposed are, the doctrine of double effect, the doctrine of doing and allowing, and the view that human life is sacred. Amongst supporters, the most important reasons mentioned are, that the patient's right to self-determination should be respected, the view that a patient should not be forced to suffer, and the view that the patient has a right to be helped to a dignified death.     

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.     

Developing Autonomy and Transitional Paternalism

Adolescents, in many jurisdictions, have the power to consent to life saving treatment but not necessarily the power to refuse it. A recent defence of this asymmetry is Neil Manson's theory of ‘transitional paternalism’. Transitional paternalism holds that such asymmetries are by‐products of sharing normative powers. However, sharing normative powers by itself does not entail an asymmetry because transitional paternalism can be implemented in two ways. Manson defends the asymmetry‐generating version of transitional paternalism in the clinical context, arguing that it maximizes respect for adolescent autonomy. This article offers an alternative argument in favour of the asymmetry‐generating form of transitional paternalism, one that makes appeal to obligations that individuals have to develop self‐governance in others. We should share normative powers asymmetrically in the clinical context for three reasons. First, the asymmetric version of transitional paternalism takes seriously duties to support adolescents’ developing autonomy, alongside other duties that adults have to young people. It does so by enabling young people to be involved in important decisions that they would otherwise be excluded from. This is of value because participation of this sort is central to the cultivation of their self‐governance. Second, only the asymmetric version gives young people a voice in respect of all clinical actions, and only the asymmetric version leaves open the possibility that the coarse lines of legislation might be ‘fine‐tuned’ in individual cases. Third, the asymmetric sharing of normative powers is consistent with the kind of social arrangements that best support 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.     

Medical experimentation, informed consent and using people

In this paper we argue that the standard focus on problems of informed consent in debates about the ethics of human experimentation is inadequate because it fails to capture a more fundamental way in which such experiments may be wrong. Taking clinical trials as our case in point, we suggest that it is the moral offence of using people as mere means which better characterizes what is wrong with violations of personal autonomy in certain kinds of clinical trials. This account also helps bring out another important way in which the autonomy of the participants in clinical trials my be violated, even in cases where they have given informed consent to their involvement. Where relevant information about the trial is framed in such a way as to induce a patient's participation by appeal to their nonrational preferences, this is also a violation of their autonomy, and one which is distinct from a failure of informed consent. The underlying wrongness of both kinds of violations, we argue, is plausibly captured by the moral offence of using people as mere means.     

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.     

IVF and women's interests: an analysis of feminist concerns

Feminist objections to the new reproductive technologies are examined. The author argues that although these technologies entail significant risks and costs to women, help only a small minority, and do not address the underlying social causes of infertility, women's interests do not demand the rejection of research on and use of reproductive technologies. Their potential threat to female reproductive autonomy can be counteracted by protecting individual civil rights. Warren urges that women, as well as members of various racial, ethnic, and socioeconomic groups, be represented in decisions on reproductive technologies, participate in their development and funding, and supervise their provision.     

Market Liberalism in Health Care: A Dysfunctional View of Respecting “Consumer” Autonomy

The unfortunately vast history of paternalism in both medicine and clinical research has resulted in perpetually increasing respect for patient autonomy and free choice in Western health care systems. Beginning with the negative right to informed consent, the principle of respect for autonomy has for many patients evolved into a positive right to request treatments and expect accommodation. This evolution of patient autonomy has mirrored a more general social attitude of market liberalism where increasing numbers of patients have come to embody the role of the “consumer.” This paper explores this transformation and critiques the current way in which respect for patient autonomy is put into practice. Ultimately, this paper concludes that the consumer view of patient autonomy is dysfunctional. Moreover, this paper argues that, based on the inherent goals of medicine, some form of paternalism is required in any meaningfully therapeutic relationship.