Explorations of the boundaries between human culture and non-human nature have clear ethical dimensions. Developing both from philosophical arguments about the value of such boundaries and recent empirical work following the traffic across them, we seek to complement these discussions through a consideration of how these boundaries can be enacted by ourselves, as researchers, and the methods we employ. As part of an agenda seeking to reconsider organic agency within geographical narrative, we have been exploring different techniques for documenting the (...) ways in which such agencies are encountered. Specifically, we are interested in plants and the ways in which they might be researched in new ways by human geographers. Based on two particular pieces of research into human-plant dealings, our aim is one of exploring their lively presence as part of a performative environmental ethics enacted, in part, through the very practice of the research encounter. (shrink)

Whether sociology should be part of bioethics has been extensively debated and critiqued. Feminist bioethics has long recognized the role of empirical work in bioethical inquiry; however, much feminist work in bioethics has been sidelined due to critiques of the role of social and sociological theory in bioethics research. In this essay, I examine how sociology plays a much deeper role in bioethical inquiry beyond the contribution of empirical methods. Building on these approaches, I show, through a case study, how (...) social and sociological theory play as vital a role in conducting comprehensive bioethical inquiry as sociological methods and methodology, and thus should no longer be sidelined in empirical bioethics. (shrink)

Background: The concept of moral distress has been the subject of nursing research for the past 30 years. Recently, there has been a call to move from developing an understanding of the concept to developing interventions to help ameliorate the experience. At the same time, the use of the term moral distress has been critiqued for a lack of clarity about the concepts that underpin the experience. Discussion: Some researchers suggest that a closer examination of how socio-political structures influence healthcare (...) delivery will move moral distress from being seen as located in the individual to an experience that is also located in broader healthcare structures. Informed by new thinking in relational ethics, we draw on research findings from neuroscience and attachment literature to examine the reciprocal relationship between structures and agents and frame the experience of moral distress. Conclusion: We posit moral distress as a form of relational trauma and subsequently point to the need to better understand how nurses as moral agents are influenced by—and influence—the complex socio-political structures they inhabit. In so doing, we identify this reciprocity as a framework for interventions. (shrink)

This article argues that we could improve the design of research protocols by developing an awareness of and a responsiveness to the social contexts of all the actors in the research enterprise, including subjects, investigators, sponsors, and members of the community in which the research will be conducted. ?Social context? refers to the settings in which the actors are situated, including, but not limited to, their social, economic, political, cultural, and technological features. The utility of thinking about social contexts is (...) introduced and exemplified by the presentation of a hypothetical case in which one central issue is limitation of the probability of injury to subjects by selection of individuals who are not expected to live long enough for the known risks of the study to become manifest as harms. Benefits of such considerations may include enhanced subject satisfaction and cooperation, community acceptance, and improved data quality, among other desirable consequences. (shrink)

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. (shrink)

In 2004, prenatal risk assessment (PRA) was implemented as a routine offer in Denmark, in order to give all pregnant women an informed choice about whether to undergo prenatal testing. PRA is a non-invasive intervention performed in the first trimester of pregnancy and measures the risk of a fetus having Down's syndrome or other chromosomal disorders. The risk figure provides the basis for action, i.e. the decision about whether or not to undergo invasive fetal testing via the maternal route (amniocentesis (...) or chorionic villus sampling), which, however, involves the risk of inducing a miscarriage. On the basis of ethnographic fieldwork in an ultrasound clinic in Denmark and interviews with pregnant women and their partners, this paper investigates how ideals such as autonomy and non-directiveness are practised in processes of decision-making. We view such ideals as forming social practice rather than neutral instruments to reach a certain goal. Focusing on one couple's trajectory through the clinical practices of PRA and the process through which a decision is reached, we call into question the assumption that more choice and more objective information is a source of empowerment and control. We make evident how decisions are made through a complicated process of meaning-making, which emerges through the relationship between professionals, the clinical setting and the social life of the couples. In the face of complex risk knowledge, PRA users are reluctant to make choices and seek to re-install authority in the health professionals. However, when assumptions about autonomy and self-determination are inscribed into the social practice of PRA, authority is transferred to the couple undergoing PRA and a new configuration of responsibility evolves between the couple and their relationship to the fetus. It is argued that PRA performs a form of government that works not through compulsion or persuasion but through choice. An ethic of a shared responsibility for PRA and its outcome between pregnant women and health professionals would be more in agreement with how decisions are actually made. (shrink)

The use of Ritalin and other stimulant drug treatments for attention-deficit hyperactivity disorder (ADHD) raises distinctive moral dilemmas for parents; these moral dilemmas have not been adequately addressed in the bioethics literature. This paper draws upon data from a qualitative empirical study to investigate parents' use of the moral ideal of authenticity as part of their narrative justifications for dosing decisions and actions. I show that therapeutic decisions and actions are embedded in valued cultural ideals about masculinity, self-actualization and success, (...) as well as in moral conceptions of authenticity and personal freedom. I argue that this investigation of parents' moral justifications and dosing dilemmas raises questions about the validity of authenticity as a transcendent moral principle. Moreover, this study demonstrates that in order to be relevant, bioethical analysis of neurocognitive enhancement must engage with ground-up studies of moral principles and decision-making in context. (shrink)

As we look to the future in a world with porous borders and boundaries transgressed by technologies, an inevitable question is:Can there be a single, global bioethics? Intimately intertwined with this question is a second one: How might a global bioethics account for profound - and constantly transforming - sources of cultural difference? Can a uniform, global bioethics be relevant cross-culturally? These are not simple questions, rather, a multi-dimensional answer is required. It is important to distinguish between two meanings of (...) bioethics: the academic discipline of bioethics as opposed to bioethics as a set of practices governing clinical care and scientific research. There is growing evidence to support the notion of a shared global understanding of bioethics as a field of inquiry focused on the moral dimensions of science and biomedicine. (shrink)

This article argues that we could improve the design of research protocols by developing an awareness of and a responsiveness to the social contexts of all the actors in the research enterprise, including subjects, investigators, sponsors, and members of the community in which the research will be conducted. “Social context” refers to the settings in which the actors are situated, including, but not limited to, their social, economic, political, cultural, and technological features. The utility of thinking about social contexts is (...) introduced and exemplified by the presentation of a hypothetical case in which one central issue is limitation of the probability of injury to subjects by selection of individuals who are not expected to live long enough for the known risks of the study to become manifest as harms. Benefits of such considerations may include enhanced subject satisfaction and cooperation, community acceptance, and improved data quality, among other desirable consequences. (shrink)

This article explores how ethics and religion interface in everyday life by drawing on a study examining the negotiation of religious and spiritual plurality in health care. Employing methods of critical ethnography, namely, interviews and participant observation, data were collected from patients, health care providers, administrators and spiritual care providers. The findings revealed the degree to which `lived religion' was intertwined with `lived ethics' for many participants; particularly for people from the Sikh faith. For these participants, religion was woven into (...) everyday life, making distinctions between public and private, secular and sacred spaces improbable. Individual interactions, institutional resource allocation, and social discourses are all embedded in social relationships of power that prevent religion from being a solely personal or private matter. Strategies for the reintegration of religion into nursing ethics are: adjusting professional codes and theories of ethics to reflect the influence of religion; and the contribution of critical perspectives, such as postcolonial feminism, to the understanding of lived ethics. (shrink)

This article provides empirical evidence of the social context and moral reasoning embedded within a parents’ decision to participate in autism genetics research. Based on in-depth interviews of parents who donated their family’s blood and medical information to an autism genetic database, three narratives of participation are analyzed, including the altruistic parent, the obligated parent, and the diagnostic parent. Although parents in this study were not generally concerned with bioethical principles such as autonomy and the issues of informed consent and/or (...) privacy and confidentiality of genetic information, a critical analysis reveals contextual bioethics embedded within these different narratives. These include the negotiations of responsibility that parents confront in biomedical research, the misguided hope and expectations parents place in genomic science, and the structural barriers of obtaining an autism diagnosis and educational services. Based on these findings, this article demonstrates the limits of a principle-based approach to bioethics and the emergent forms of biological citizenship that takes into account the social situations of people’s lives and the moral reasoning they negotiate when participating in autism genetic research. (shrink)

Social scientists often lament the fact that philosophically trained ethicists pay limited attention to the insights they generate. This paper presents an overview of tendencies in sociological and anthropological studies of morality, ethics and bioethics, and suggests that a lack in philosophical interest might be related to a tendency among social scientists to employ either a deficit model (social science perspectives accommodate the sense of context that philosophical ethics lacks), a replacement model (social scientists have finally found the “right way” (...) of doing ethics), or a dismissal model (ethics should be abandoned all together as a misconstrued veil of power). Increased awareness of differences in styles of reasoning and objects of research interest might help to overcome the hostility, and an anthropological project is presented as an invitation to a dialogue informed by awareness of such differences. (shrink)

In 2004 prenatal risk assessment was implemented as a routine offer to all pregnant women in Denmark. It was argued that primarily the new programme would give all pregnant women an informed choice about whether to undergo prenatal testing. On the basis of ethnographic fieldwork in an ultrasound clinic in Denmark and interviews with pregnant women and their partners, we call into question the assumption underlying the new guidelines that more choice and more objective information is a source of empowerment (...) and control. We focus on one couple's experience of PRA. This case makes it evident how supposed choices in the context of PRA may not be experienced as such. Rather, they are experienced as complicated processes of meaning-making in the relational space between the clinical setting, professional authority and the social life of the couples. PRA users are reluctant to make choices and abandon health professionals as authoritative experts in the face of complex risk knowledge. When assumptions about autonomy and self-determination are inscribed into the social practice of PRA, authority is transferred to the couple undergoing PRA and a new configuration of responsibility evolves between the couple and their relationship to the foetus. It is argued that al-though the new programme of prenatal testing in Denmark presents itself in opposition to quasi-eugenic and paternalistic forms of governing couples' decisions it represents another form of government that works through the notion of choice. An ethics of a shared responsibility of PRA and its outcome would be more in agreement with how decisions are actually made. (shrink)

In this paper we propose a theoretical framework for analysing the history and function of ethics as a form of regulation. Ethics in the form of codes, rules and declarations, constitutes regulatory policies, and we wish to suggest analysing such policies from an organizational perspective. In many instances ethics policies are reactions to particular events involving harm of patients or research participants. As such they seem to come forward as solutions to specific problems. However, not all such events that instigate (...) the making of new policies, and policies often have other effects and are used for other purposes than what we might expect from the events preceding them: when ethics takes on the form of policy making, the relationship between problems and solutions is more complex. We suggest that an organizational perspective on ethics codes, rules and declarations can deliver a relevant framework for future studies of the implications of wanting to address ethical problems through policy making. (shrink)

This paper presents an analysis of the applicability of a principalist approach for a global, or cross-cultural, bioethics. We focus especially on the principle of individual autonomy, a core value in ethical discourse. We echo some long-standing criticisms of other anthropologists, sociologists, and many medical ethicists that the individualistic approach to autonomy is a Euro-American value and cannot be ethically applied in all settings. As a remedy, we suggest an adaptation of Kleinman's Explanatory Model approach to questions of decisionmaking. We (...) argue that the analysis and resolution of ethical dilemmas might also benefit from forms of pedagogy that integrate anthropological and other social science perspectives, and the incorporation of ethnographic techniques in ethical practice. (shrink)

One of the challenges of modern healthcare ethics practice is the navigation of boundaries. Practicing healthcare ethicists in the performance of their role must navigate meanings, choices, decisions and actions embedded in complex cultural and social relationships amongst diverse individuals. In light of the evolving state of modern healthcare ethics practice and the recent move toward professionalization via certification, understanding boundary navigation in healthcare ethics practice is critical. Because healthcare ethics is endowed with many boundaries which often delineate concerns about (...) professional expertise and authority, epistemological reflection on the relationship between theory and practice points toward the social context as relevant to the conceptualization of boundaries. The skills of social scientists may prove helpful to provide data and insights into the conceptualization and navigation of clinical ethics qua profession. Empirical ethics research, which combines empirical description (usually social scientific) with normative-ethical analysis and reflection, is a way forward as we engage and reflect upon issues which have implications for practice standards and professionalization of the role. This requires cooperative engagement of the descriptive and normative disciplines to explore our understandings of boundaries in healthcare ethics practice. This will contribute to the ongoing reflection not only as we envision the professional role but to ensure that it is enacted in practice. (shrink)