Search results

Why does bioethics need to be re-imagined? And what would a re-imagined bioethics look like and do? These questions are at the heart of this section. The bioethics enterprise in the United States has taken a very particular form, as many sociological commentators have pointed out. At the center of bioethics is autonomy as the dominant feature of the bioethics landscape. This emphasis on autonomy has its roots in American individualism, as well as the congruent history of bioethics and the civil rights movement in the United States. With autonomy at the center of the frame, many other features of the landscape loom large: attention to the individual as the epicenter of the bioethical dilemma, a concordant emphasis on rights, an enduring inattention to the social relationships in which individuals are embedded, the institutions that constrain individual action, and the social structures that channel individual lives, and, finally, the heavy weight accorded to the provision of information to enable patient-directed decision making as the ultimate ethical duty of the clinician. Relegated to the background – indeed more often than not barely visible on the far horizon – are welfare, care, justice, kin, culture, and society itself. While the sociological critique of bioethics for this peculiarly narrow and microscopic view is not new, the three chapters in this section prove that it remains as relevant as ever. More importantly, they demonstrate how expanding the borders of bioethics to encompass the social context actually affords us a stronger vantage point to assess the moral significance of our actions.

Like all tribes, bioethics has its own origin myths. According to these myths, bioethics emerged in the latter half of the twentieth century when new technologies and scientific developments challenged the norms that had traditionally governed clinical practice. Theologians, philosophers, clergy, judges, lawyers, journalists and ordinary people – the “strangers at the bedside” in David J. Rothman's memorable phrasing – began to take an interest in moral matters that previously had been the realm of physicians alone. Codes of research ethics were formulated in response to the Nazi atrocities; hospital ethics committees were established in sensitivity to the emerging notion of “patients’ rights.” Bioethics was born.

I am a sociologist. It is the way I think, the way I work, and the methods and the theory and the imagination I bring to the world.

Prenatal comes from the Latin words ‘prae’ and ‘natalis’ meaning ‘before’ and ‘to be born’, respectively (Concise Oxford Dictionary, 1995). This word is semiotically loaded because ‘prenatal’ connotes the time before being born. The word itself signifies the foetus (who is ‘before being born’) not the pregnant body within whom the foetus grows. If medical experts working within the discipline of reproductive medicine concentrate more on the foetus and its health than the pregnant woman, they take this meaning to heart. Experts argue that ‘a multidisciplinary approach to the foetus is essential part of antenatal screening’ (Malone, 1996, p. 157), a view suggesting that the foetus, more than a pregnant woman, is the physician's main focus during the prenatal period.

Because discussions of bioethical decision making often take place around specific cases that highlight the individual, the ethical issues these instances bring to the fore are often framed as problems of a deeply personal – and hence individual – nature. While the decisions of ethical bodies located at the intersection of the individual and the biomedical establishment have ramifications at the level of the individual, often constructed as a patient, discussions of bioethics directly inform policy in ways that affect large numbers of people – both as participants in the discussions around issues defined as bioethical in nature and as recipients of policies meant to reflect prevailing bioethical norms.

The four papers in this section offer a sociology of ‘bioethics at work’, the ways that bioethics as a discipline or approach comes into medical care. One of the concerns we, as editors of this volume, bring to the issue is the appropriateness of the export of American ‘bioethics’ both in its form and its content. It is not only the creation of ‘ethics committees’, but also the rewriting of practice in accord with American principles that we find troubling. One of the nurses in Kohlen's study talks about ‘learning the language of bioethics’. Brought into committee rooms to ‘do ethics’ requires of practitioners a certain way of defining both biomedical practice and ethics, reflected in the ‘language’ one has to learn.

The issues raised by bioethics have been discussed broadly within medical sociology. Scholars such as Bosk (2002), Rothman (1986), DeVries (2004), DeVries and Subedi (1998), and others have discussed the social origins, organization, and consequences of various aspects of bioethics, while many authors have discussed the ways in which bioethics may be blind to social context. Fox and DeVries note that all contributors to the DeVries and Subedi (1998) text fault bioethicists for their failure to recognize the multiple social, cultural, and historical influences on their ethical thinking and the failure to recognize the broader implications of their work for society. The collection of essays in DeVries and Subedi is an exceptionally rich source of sociological reflection about bioethics, its origin, social organization, and implications. This text stands in contrast to previous work by sociologists who served within bioethics as consultants or advisors to bioethics committees. Since its publication, relatively fewer works have sought to understand the world of bioethics through a sociological lens, although the number of books and journals on bioethics has proliferated.

As environmental health scientists increasingly take up genetic/genomic modes of knowledge production and translate their work for applications in biomedicine, risk assessment, and regulation, they “bring the human in” to environmental health issues in novel ways. This paper describes the efforts of environmental health scientists to use molecular technologies to focus their research inside the human body, ascertain human genetic variations in susceptibility to adverse outcomes following environmental exposures, and identify individuals who have sustained DNA damage as a consequence of exposure to chemicals in the environment. In addition to transforming laboratory research, they see in these such practices the opportunity to advance public health, through innovations in biomedical practice and refinement of environmental health risk assessment and regulation. As environmental health scientists produce and translate these new forms of knowledge, they simultaneously assume and instantiate specific notions of the human subject and its agency, possibilities, and responsibilities vis-à-vis health and illness. Because dimensions of human subjectivity remain under-theorized in bioethics, sociological approaches to understanding and situating the human subject offer an important means of elucidating the consequences of genetics/genomics in the environmental health sciences and highlighting the social structures and processes through which they are produced.We are responsible for the world in which we live not because it is an arbitrary construction of our choosing, but because it is sedimented out of particular practices that we have a role in shaping. –Barad, 1998

There has been growing interest in narrative ethics over the last three decades. However, narratology, or the study of narratives, has a much longer history dating back to Plato and Aristotle.³ Structural linguistics, and its formal study of grammar and structure of language, was a major contributor to the development of the classification and interpretation of narratives.⁴ This structuralist period was followed by an increased interest in the relationships between narratives and social and historical dynamics and ideologies. Key social theorists, such as Derrida, Bakhtin and Ricoeur, have urged us to consider the relationship of the text to the way we understand ourselves and the worlds we inhabit. In summary, the study of narratives long preceded its association with ethics, and it was only recently that the interest in narratives has been adopted by the health-care disciplines, notably medicine and nursing.