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.     

Myth of independence: caring for house and residential facilities with care for the elderly

The innovations in the field of housing and care for elderly people often emphasize the concept of independence. Older people in these days are expected to competently and smoothly manage their own lives in a housing and care environment, that encourages self-help and selfsufficiency. Architects, care managers and politicians often are optimistic on the translation of independence into every-day practice of housing and care arrangements. By means of participating observations and interviews we explored how this translation is realised in an innovative project of 'lifetime' housing. Our results point out that strong and unexpected social factors develop in the use of space and caregiving that hinder personal fullfillment of autonomy. These problems were especially seen when every-day dependency failed to be noticed because of a too strongly emphasized autonomy.     

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.     

In praise of the everyday: Trust and the art of social living in an Amazonian community

The article states the high evaluation that an Amazonian people, the Piaroa, place upon the artful skills of everyday existence. It is argued that their emphasis upon the creativity of daily practice is forthcoming from a powerful and egalitarian social philosophy. The difficulties of translating such a philosophy, where the human self is contextualised within a wider cosmic setting, are raised. The aim of translation would be to enable us to engage in dialogue with the Piaroa about common concerns (upon the relation of the individual to the collectivity, for instance, or upon the idea of freedom, or the question of the relation of customs to rational decision making). These are a people who overtly shun the idea of a social rule, yet strongly value sociality, their own customs, and the mutuality of the ties of community. At the same time they demonstrate even more forcefully an ‘obstinate individualism’. A major puzzle to be discussed is the notion that personal autonomy is understood as a social capacity, and a cultural one as well: the volitional I, the social relation, and the cultural artifice are an associated set of values. The centrality of the notions of reflective reason and personal trust to this particular egalitarian ethics will be discussed.     

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.     

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.     

Focus: The Aging Brain: Social capital,health, and elderly driver status

Driving a car enables many people to engage in meaningful activities that, in turn, help develop and maintain personal social capital. Social capital, a combination of community participation and social cohesion, is important in maintaining well-being. This paper argues that social capital can provide a framework for investigating the general role of transportation and driving a car specifically to access activities that contribute to connectedness and well-being among older people. This paper proposes theoretically plausible and empirically testable hypotheses about the relationship between driver status, social capital, and well-being. A longitudinal study may provide a new way of understanding, and thus of addressing, the well-being challenges that occur when older people experience restrictions to, or loss of, their driver’s license.     

Patient autonomy, assessment of competence and surrogate decision-making: a call for reasonableness in deciding for others

In this paper, I address some of the shortcomings of established clinical ethics centring on personal autonomy and consent and what I label the Doctrine of Respecting Personal Autonomy in Healthcare. I discuss two implications of this doctrine: 1) the practice for treating patients who are considered to have borderline decision-making competence and 2) the practice of surrogate decision-making in general. I argue that none of these practices are currently aligned with respectful treatment of vulnerable individuals. Because of 'structural arbitrariness' in the whole process of how we assess decision-making competence, this area is open to disrespectful treatment of people. The practice of surrogate decision- making on the basis of a single person's judgment is arguably not consistent with ethical and political requirements derived from the doctrine itself. In response to the inadequacies of the doctrine, I suggest a framework for reasonableness in surrogate decision-making which might allow practice to avoid the problems above. I conclude by suggesting an extended concept of Patient Autonomy which integrates both personal autonomy and the regulative idea of morality that is required by reasonableness in deciding for non-competent others.     

Rationale for an integrated approach to genetic epidemiology

Conclusion: Genetic knowledge is now in the public domain and its interpretation by the media and the citizens brings the issues into the public forum of discussion for the necessary ethical, legal and socio-cultural evaluation of its application. Science is being perceived by some as dangerous and as requiring international regulation. Others feel that genetic knowledge will be the breakthrough that will permit medical progress and individual autonomy with regards to personal health and lifestyle choices. The mapping of the human genome has already yielded valuable information on an increasing number of diseases and their variants. Prevailing popular and journalistic archetypes ("imaginaires") used in the media are perceived by the producers as slowing down the possible application of genetic knowledge. The answers to these dilemmas are not readily apparent nor are they prescribed by classical philosophy of medicine. Since genetic knowledge eventually resides with the individual who carries the genes of disease and/or susceptibility, a logical approach to integration of this knowledge at a societal level would seem to reside with individual education and decision-making. The politics of the ensuing social debate could transform the current social contract since an individual's interests need to be balanced against those of his or her immediate family in the sharing of information. The ethical foundations of such a contract requires the genetic education of "Everyone" as a matter of urgent priority. Genetic education should not serve ideological power struggles between the medical establishment and the ethical-legal alliance. Instead, it should ensure the transfer of knowledge to physicians, to patients, to users, to planners, to social science and humanities researchers and to politicians, so that they may make "informed" and free decisions....     

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.     

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.     

Male territorial aggression and androgen modulation in high latitude populations of the Sooty, Passerella iliaca sinuosa, and Red Fox Sparrow, Passerella iliaca zaboria

The Fox Sparrows, Passerella iliaca, include multiple groups and subspecies distributed at several latitudes from the Alaskan arctic to the southwestern United States. As such, this species represents a potential model for investigating latitudinal variation in androgen secretion and aggressive territoriality in male passerines. Breeding male Fox Sparrows from two subspecies within two groups, the Sooty Fox Sparrow, P. i. sinuosa, and the Red Fox Sparrow, P. i. zaboria, were assessed for aggressive territoriality and androgen responsiveness at multiple latitudes in arctic and subarctic Alaska. Subarctic Sooty Fox Sparrows had higher circulating androgen levels in the early (8.54 ng/ml) versus mid–late breeding season (2.44 ng/ml). Males in the mid–late breeding season did not up-regulate androgen secretion in response to social challenge, but were aggressive and spent more time within 5 m of a decoy during a simulated territorial intrusion (STI) than early breeding males. Male subarctic Red Fox Sparrows had slightly higher circulating androgen levels (2.29 ng/ml) than arctic males (1.10 ng/ml) in the mid–late breeding season. However, androgen levels were not correlated with blood collection time after a social challenge in either group, suggesting that neither arctic nor subarctic males up-regulate androgen secretion during the mid–late breeding period. Arctic males spent more time within 5 m of a decoy and sang less than subarctic males during an STI in the mid–late breeding season. These findings demonstrate that the Fox Sparrow is a tractable model for investigating the latitudinal regulation of aggressive territoriality and androgen responsiveness in passerines.     

Tobacco talk: reflections on corporate power and the legal framing of consumption

This article examines how North Carolina tobacco farmers think about the moral ambiguities of tobacco business. Drawing on ethnographic research with tobacco farmers and archival research on the tobacco industry, I specify the core psychological defense mechanisms that tobacco companies have crafted for people associated with the industry. I also document local social, cultural, and economic factors in rural North Carolina that underpin ongoing rural dependence on tobacco despite the negativity that surrounds tobacco and structural adjustments. This article contributes to our knowledge about tobacco farmers and tobacco farming communities, which is important for tobacco-control strategies. I reflect on ethical and economic paradoxes related to the rise of corporate social responsibility in the tobacco industry, where an official legal framing of consumption, focused on informed adult consumer autonomy and health education, is promoted to undermine more robust public health prevention efforts.     

Authoritative knowledge and single women's unintentional pregnancies,abortions, adoption,and single motherhood: social stigma and structural violence

This article explores the sources of authoritative knowledge that shaped single, white, middle-class women's unintentional pregnancies and child-bearing decisions throughout five reproductive eras. Women who terminated a pregnancy were most influenced by their own personal needs and circumstances. birth mothers' decisions were based on external sources of knowledge, such as their mothers, social workers, and social pressures. In contrast, single mothers based their decision on instincts and their religious or moral beliefs. Reproductive policies further constrained and significantly shaped women's experiences. The social stigma associated with these forms of stratified maternity suggests that categorizing pregnant women by their marital status, or births as out-of-wedlock, reproduces the structural violence implicit to normative models of female sexuality and maternity. This mixed-method study included focus groups to determine the kinds of knowledge women considered authoritative, a mailed survey to quantify these identified sources, and one-on-one interviews to explore outcomes in depth.     

Encrypted humor and social networks in rural Brazil

The encryption theory of humor (Flamson & Barrett, 2008) proposes that one of the means by which people develop their social networks is assortment with the most compatible peers by signaling similarity in locally variable personal features through humor. Here we present experimental and observational evidence obtained on a collective farm in rural Brazil, where participants were presented with high- and low-encryption versions of jokes after assessing their prior knowledge, and completed a photo-sorting task to determine the structure of their social networks. These results, replicating previous findings using online surveys, demonstrated a significant effect of prior knowledge and some of the predicted interactions between prior knowledge and encryption level, as well as a small but significant effect of social closeness on similarity in joke ratings. Taken together, these findings support the hypotheses that (a) the cognitive processing of humor relies on an encryption–decryption process, (b) similarity in humor preferences reflects similarities in those cognitive processes and (c) that similarity plays a role in real-world social assortment.     

Autonomy,Natality and Freedom: A Liberal Re‐examination of Habermas in the Enhancement Debate

Jurgen Habermas has argued that carrying out pre‐natal germline enhancements would be inimical to the future child's autonomy. In this article, I suggest that many of the objections that have been made against Habermas' arguments by liberals in the enhancement debate misconstrue his claims. To explain why, I begin by explaining how Habermas' view of personal autonomy confers particular importance to the agent's embodiment and social environment. In view of this, I explain that it is possible to draw two arguments against germline enhancements from Habermas' thought. I call these arguments ‘the argument from negative freedom’ and ‘the argument from natality’. Although I argue that many of the common liberal objections to Habermas are not applicable when his arguments are properly understood, I go on to suggest ways in which supporters of enhancement might appropriately respond to Habermas' arguments.     

"They want to know where they came from": population genetics, identity, and family genealogy

This paper discusses the changing relationship between population genetics, family genealogy and identity. It reports on empirical research with participants in a genetic study who anticipated that personal feedback on the analysis of their donated samples would elucidate aspects of their own family genealogies. The paper also documents how geneticists, building on the practices of offering personal feedback to research participants, have developed genetic tests marketed directly to people wishing to trace their ancestry. Some of the social and ethical issues raised by this development in the use of genetic testing are considered.     

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.     

Equipoise,design bias,and randomized controlled trials: the elusive ethics of new drug development

The concept of 'equipoise', or the 'uncertainty principle', has been represented as a central ethical principle, and holds that a subject may be enrolled in a randomized controlled trial (RCT) only if there is true uncertainty about which of the trial arms is most likely to benefit the patient. We sought to estimate the frequency with which equipoise conditions were met in industry-sponsored RCTs in rheumatology, to explore the reasons for any deviations from equipoise, to examine the concept of 'design bias', and to consider alternative ethical formulations that might improve subject safety and autonomy. We studied abstracts accepted for the 2001 American College of Rheumatology meetings that reported RCTs, acknowledged industry sponsorship, and had clinical end-points (n = 45), and examined the proportion of studies that favored the registration or marketing of the sponsor's drug. In every trial (45/45) results were favorable to the sponsor, indicating that results could have been predicted in advance solely by knowledge of sponsorship (P < 0.0001). Equipoise clearly was being systematically violated. Publication bias appeared to be an incomplete explanation for this dramatic result; this bias occurs after a study is completed. Rather, we hypothesize that 'design bias', in which extensive preliminary data are used to design studies with a high likelihood of being positive, is the major cause of the asymmetric results. Design 'bias' occurs before the trial is begun and is inconsistent with the equipoise principle. However, design bias increases scientific efficiency, decreases drug development costs, and limits the number of subjects required, probably reducing aggregate risks to participants. Conceptual and ethical issues were found with the equipoise principle, which encourages performance of negative studies; ignores patient values, patient autonomy, and social benefits; is applied at a conceptually inappropriate decision point (after randomization rather than before); and is in conflict with the Belmont, Nuremberg, and other sets of ethical principles, as well as with US Food and Drug Administration procedures. We propose a principle of 'positive expected outcomes', which informs the assessment that a trial is ethical, together with a restatement of the priority of personal autonomy.     

Morals, Medicine and Change: Morality Brokers, Social Phobias, and French Psychiatry

This paper will examine how French neurotics are being transformed into 'social phobics' and how the appearance of this group may be tied to new personal and social ideals. There are many people and factors that contribute to this changing definition of mental illness. Amongst these, I will focus on the role of three groups who are most vocally acting as morality brokers in the creation of these new subjects: psychiatrists, patients' groups and pharmaceutical companies.