Contemporary critical approaches to bioethics increasingly present themselves as “relational,” though the meaning of relationality and its implications for bioethics seem to be many and varying. I argue that this confusion is due to a multiplicity of relational approaches originating from distinct theoretical lineages. In this article, I identify four key differences among commonly referenced relational approaches: the scope and nature of relationships considered, the extent of the determining influence on individual selfhood, and the integrity of individual selfhood. Importantly, these (...) four differences carry consequences for the usage of relational approaches within academic and clinical bioethics. I show that these differences attach to multiple objects of critique within mainstream bioethics and imply distinct metaethical commitments. Although I issue a cautionary note about combining relational approaches from distinct lineages, I close by suggesting that many such approaches may have their use, drawing on Susan Sherwin's sense of bioethical theories as lenses. (shrink)

Reproductive genetic carrier screening is increasingly being offered more widely, including to people with no family history or otherwise elevated chance of having a baby with a genetic condition. There are valid reasons to reject a prevention-focused public health ethics approach to such screening programs. Rejecting the prevention paradigm in this context has led to an emphasis on more individually-focused values of freedom of choice and fostering reproductive autonomy in RCS. We argue, however, that population-wide RCS has sufficient features in (...) common with other public health screening programs that it becomes important also to attend to its public health implications. Not doing so constitutes a failure to address the social conditions that significantly affect people’s capacity to exercise their reproductive autonomy. We discuss how a public health ethics approach to RCS is broader in focus than prevention. We also show that additional values inherent to ethical public health—such as equity and solidarity—are essential to underpin and inform the aims and implementation of reproductive carrier screening programs. (shrink)

In this essay, I argue that pronatalism—a social bias in favor of gestational motherhood—and geneticism—a social bias in favor of genetic motherhood—are conceptually and operationally distinct social forces that influence some women's reproductive decision making. Each of these social forces shapes the reproductive landscape, relates differently to women's identities, and causes different social stigmatization and harm. Pronatalism and geneticism warrant feminist concern because they can compromise some women's reproductive autonomy and well-being. I suggest that combating pronatalism and geneticism will require (...) different sets of media, policy, education, and health care practice strategies. (shrink)

The nature and role of the patient in biomedicine comprise issues central to bioethical inquiry. Given its developmental history grounded firmly in a backlash against 20th-century cases of egregious human subjects abuse, contemporary medical bioethics has come to rely on a fundamental assumption: the unit of care is the autonomous self-directing patient. In this article we examine first the structure of the feminist social critique of autonomy. Then we show that a parallel argument can be made against relational autonomy as (...) well, demonstrating how this second concept of autonomy fails to take sufficiently into account an array of biological determinants, particularly those from microbial biology. Finally, in light of this biological critique, we question whether or to what extent any relevant and meaningful view of autonomy can be recovered in the contemporary landscape of bioethics. (shrink)

Leading paradigms of clinical ethics consultation closely follow a biomedical model of care. In this paper, we present a theoretical reflection on the underlying biomedical model of disease, how it shaped clinical practices and patterns of ethical deliberation within these practices, and the repercussions it has on clinical ethics consultations for patients with chronic illness. We contend that this model, despite its important contribution to capturing the ethical issues of day-to-day clinical ethics deliberation, might not be sufficient for patients presenting (...) with chronic illnesses and navigating as “lay experts” of their medical condition(s) through the health care system. Not fully considering the sources of personal knowledge and expertise may lead to epistemic injustice within an ethical deliberation logic narrowly relying on a biomedical model of disease. In caring “for” and collaboratively “with” this patient population, we answer the threat of epistemic injustice with epistemic modesty and humility. We will propose ideas about how clinical ethics could contribute to an expansion of the biomedical model of care, so that important aspects of chronic illness experience would flow into clinical-ethical decision-making. (shrink)

Nossa seleção de verbetes parte do interesse de cada pesquisador e os dispomos de maneira histórico-cronológica e, ao mesmo tempo, temática. O verbete de Melissa Lane, “Filosofia Política Antiga” vai da abrangência da política entre os gregos até a república e o império, às portas da cristianização. A “Filosofia Política Medieval”, de John Kilcullen e Jonathan Robinson, é o tópico que mais demanda espaço na nossa seleção em virtude das disputas intrínsecas ao período, da recepção de Aristóteles pelo medievo e (...) da tensão entre poder Papal e Civil. No verbete “Liberalismo”, de Gerald Gaus, Shane Courtland e David Schmidtz, vemos as fontes fundantes da Filosofia Política da modernidade. As ideias de liberdade negativa e positiva se coadunam com a Ética Liberal e sua influência sobre a abrangência do valor fundamental da liberdade individual diante das políticas públicas. O texto de Ian Carter, “Liberdade Positiva e Liberdade Negativa”, expõe o paradoxo da liberdade em suas concepções valorativas e neutra, muito úteis para compreender os problemas políticos que enfrentamos hoje. Por fim, Bas Van Der Vossen no texto “Libertarianismo” trata das noções tensas entre Estado e indivíduos. A concepção de “liberdade de si”, genuinamente negativa, ganha destaque justificatório. Jackie Scully, no verbete Bioética Feminista, exemplifica o valor da influência dessas correntes no âmago de todos os contemporâneos. Sua escrita homenageia postumamente Anne Donchin com um apanhado histórico da luta de inserção de políticas feministas na pesquisa acadêmica global. No verbete “Democracia”, os professores brasileiros Gustavo Dalaqua e Alberto Ribeiro Barros acrescentaram tópicos importantes ao tema geral, respectivamente: “Construtivismo Representativo vs. Representação Descritiva” e “Democracia Contestatória de Philip Pettit”. O texto de Thomas Christiano perpassa os principais argumentos de justificação política contra e a favor da democracia ocidental, com foco central nas concepções de liberdade e igualdade. Os verbetes dispostos nessa seleção de textos são tendenciosos na medida que expressam o interesse genuíno de cada pesquisador com os assuntos relevantes em suas pesquisas. Em virtude disso, a escolha “adota um lado” em detrimento de outros – mais especificamente: de outro que poderia ser mais “progressista”. Por si só, o livro já nasce reclamando um segundo volume, que será providenciado. Colocamos de lado qualquer exigência de “imparcialidade”, algo que não existe na Filosofia, muito menos na Filosofia Política. Sobressai, nesse aspecto, o caráter reflexivo que o assunto exige e a importância do assunto, sem o qual não teríamos a modernas concepções de representatividade, as teorias da justiça ou mesmo as ciências sociais. Um outro volume, portanto, se faz imperativo, por conta da abrangência da própria SEP e do respeito a seu projeto inicial, genuinamente um plano plural. (shrink)

This paper discusses Confucian notions of moral autonomy and moral agency that do not follow strict and ideal notions of autonomy that one can find in many Western theories of moral philosophy. In Kantian deontology, for example, one's autonomy, specifically one's rational will to follow universal moral rules, is a necessary condition of moral agency and moral responsibility. In Confucian moral philosophy, however, this type of strict moral autonomy is rarely observed. A Confucian moral agent is often depicted as a (...) partially heteronomous individual who often accepts and follows others' moral authority and considers external contingencies in her moral deliberations. Yet active moral agency is maintained in Confucian philosophy. In this paper, I will explain and analyze a partially heteronomous but active form of moral agency in Confucian moral philosophy. First, I will survey different notions of moral autonomy and explore philosophical theories of partial autonomy and heteronomy. Second, I will discuss, on the basis of interactive, responsive, and situated notions of the self, how Confucian moral agency can be explained without strict standards of autonomy. In Confucianism, morality or virtuosity reflects the relational, responsive, and situated nature of human being that resonates with other human beings and their environmental contingencies. Mencius, for example, acknowledges and discusses interactive or relational nature of moral action and the dependency of the moral self on external conditions of life without giving up active moral effort and full moral responsibility. Third, based on my analysis of moral autonomy and responsibility in early Confucian philosophy, I will argue that Confucian moral philosophy provides a unique way of understanding moral agency, not through self-enclosed independency but through relational and interactive interdependency of communal agency. (shrink)

A man with Alzheimer's who wanders around, a caregiver who disconnects the alarm, a daughter acting on het own, and a doctor who is not consulted set the stage for a feminist reflection on capacity/competence assessment. Feminist theory attempts to account for gender inequality in the political and in the epistemological realm. One of its tasks is to unravel the settings in which actual practices, i.c. capacity/competence assessment take place and offer an alternative. In this article the focus will be (...) on a feminist ethics of care in which relationality, care, vulnerability, and responsibility are privileged concepts and attitudes. The emphasis on these notions leads to a specific view of autonomy that has consequences for both carereceivers (patients, clients) and caregivers (professional and not professional). These concepts constitute a default setting that shapes the context for capacity/competence assessment. Whereas this notion is meant to distinguish between those who need to be taken care of and those who do not, reflection on what it means to say ‘those who need to be taken care of’ is also required. The feminist analysis presented here emphasizes the necessity of the contextualization of assessment of competence. It sketches the multifold and complex grid that comprehends capacity assessment. (shrink)

COVID-19 has turned many ethical principles and presuppositions upside down. More precisely, the principle of respect for autonomy has been shown to be ill suited to face the ethical challenges posed by the current health crisis. Individual wishes and choices have been subordinated to public interests. Patients have received trial therapies under extraordinary procedures of informed consent. The principle of respect for autonomy, at least in its mainstream interpretation, has been particularly questioned during this pandemic. Further reflection on the nature (...) and value of autonomy is urgently needed. Relational autonomy has been proposed as an alternative account of autonomy that can more adequately respond to contemporary ethical issues in general and to a pandemic such as the one we are currently facing in particular. As relational autonomy is an emerging notion in current bioethics, it requires further consideration and development to be properly operationalized. This paper aims to show how six different philosophical branches––namely, philosophy of nature, philosophical anthropology, existential phenomenology, discourse ethics, hermeneutics, and cultural anthropology––have incorporated the category of relation throughout the twentieth century. We first delve into primary philosophical sources and then apply their insights to the specific field of medical ethics. Learning from the historical developments of other philosophical fields may provide illumination that will enable bioethics to experience a successful “relational turn”, which has been partially initiated in contemporary bioethics but not yet achieved. (shrink)

Durch genomweite Analysen werden vielfältige gesundheitsrelevante Informationen über eine Person gewonnen. Solche Informationen können die Behandlung von Krankheiten verbessern. Sie ermöglichen aber auch Vorhersagen, ob eine Person und deren Verwandte in Zukunft möglicherweise erkranken werden. Der neuartige Charakter des Informationseingriffs und sein prädiktive Potential bedürfen der ethischen, juristischen und ökonomischen Reflexion, damit diese Technologie zum Wohl der Patienten, der Familienangehörigen und der Solidargemeinschaft eingesetzt werden kann. Die vorliegende Schrift leistet mit ihren interdisziplinären, vom BMBF finanzierten Analysen dazu einen Beitrag. Grundlagen (...) für einen ethisch und juristisch verantwortbaren Einsatz der Genomsequenzierung zu medizinischen Zwecken werden erörtert und Eckpunkte für Kostenanalysen sowie Elemente einer “Guten klinischen Praxis” präsentiert. (shrink)

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. (shrink)

We explore contested meanings around care and relationality through the under-explored case of caring after death, throwing the relational significance of ‘bodies’ into sharp relief. While the dominant social imaginary and forms of knowledge production in many affluent western societies take death to signify an absolute loss of the other in the demise of their physical body, important implications follow from recognising that embodied relational experience can continue after death. Drawing on a model of embodied relational care encompassing a ‘me’, (...) a ‘you’ and an ‘us’, we argue that after death ‘me’ and ‘us’ remain (though changed) while crucial dimensions of ‘you’ persist too. In unravelling the binary divide between living and dead bodies, other related dichotomies of mind/body, self/other, internal/external, and nature/social are also called into question, extending debates concerning relationality and openness between living bodies. Through an exploration of autobiographical accounts and empirical research, we argue that embodied relationality expresses how connectedness is lived out after death in material practices and felt experiences. (shrink)

While this paper does not explicitly define the concept of autonomy, the way Ubel et al describe clinicians’ failures to enhance their patients’ autonomy reflects a broader understanding of autonomy than the default account as free and informed choice. In this OPC I would demonstrate that the communication strategies the authors recommend reflects a more sophisticated conception of autonomy than the understanding that typically prevails in bioethics. I will also distinguish between weak and strong forms of paternalism, and argue that (...) a weak paternalistic approach is not only defensible but also aligns with the strategies the authors propose. Thus, by clarifying the concept of autonomy we can show how it can be enhanced in practice. (shrink)

In this dissertation I examine ethical issues that concern fertility preservation (FP) technologies for women from a feminist perspective. FP technologies involve the removal, cryopreservation and subsequent storage of reproductive materials for future use. The aim of these technologies is to preserve the option of future genetic reproduction. FP technologies have been developed in the cancer context because infertility is one of the long-term side-effects of many cancers or cancer therapies. Many FP technologies are still experimental, but some technologies are (...) becoming available to healthy women who wish to guard against age-related infertility. Although FP technologies are expanding women’s reproductive options and benefitting some women by satisfying their desires for genetically-related children, these technologies pose numerous physical, emotional and financial risks to women. I maintain that a feminist examination of choice is necessary for the ethical provision of FP technologies within patriarchal contexts. My analysis begins by demarcating two oppressive social biases from one another: namely pronatalism and biologism. I argue that each of these biases can unduly influence women’s reproductive choices about FP technologies. I then consider how these biases might be identified and challenged in the FP decision-making context. I outline an ethical process of informed choice that is equipped to protect patient autonomy when such autonomy is threatened by these biases. I then consider whether the choice to use FP should be available to both women within and without the cancer contexts. I argue that both disease-related FP and age-related FP can be morally permissible. Finally, I consider whether there should be an upper age limit on women’s access to their stored reproductive materials. I argue that age can be morally relevant to reproduction and thus age limits on access to assisted reproduction are morally permissible. I conclude by suggesting how feminist insights might inform policies on FP technologies and related assisted reproductive technologies. In sum, my dissertation shows that a feminist analysis of choices about FP is essential for ensuring the ethical provision of FP technologies. (shrink)

Around the world the wealthy can get their lives extended while the poorget little basic medical help. Over the same years that the field ofbioethics has prospered and expanded, this disparity has increased.Reasons for the failure of bioethics to successfully address thishealth/wealth issue include its identification with the cognitiveand social authority of medicine; its gatekeeping behavior;its funding sources; its questionable use of ``principlism'' andits emphasis on crises and dilemmas to the neglect of ``housekeeping''issues. The work of most women in bioethics (...) rarely addresses thehealth/wealth issue; if it does, their work may be ignored, aswere the recommendations of Canadian feminists working under governmentgrants. To achieve equity in health care, the structure of both medicineand bioethics needs to be changed. Yet, since bioethicists generallyhave accepted the status quo, this seems unlikely to happen. (shrink)