Bioethics and rural health: theorizing place, space, and subjects

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Abstract

The field of bioethics has been criticized for its universalizing tendencies, attributed in a large part to its foundations in moral philosophy and the level of abstraction of much bioethical discourse. Efforts to particularize bioethics have included the “turn toward casuistry”, the emergence of feminist and disability rights critiques of mainstream bioethics, and ethnographic contributions that examine the situatedness of ethical acts, practices, and meanings in local contexts. Such work introduces into bioethics dimensions of space, place, and time; nonetheless, these remain relatively unexplored as constitutive elements and/or influences of the phenomena of ethics discourse and ethics-related practices. Drawing from an ethnographic study of genetics in rural health, this paper presents a sociological discussion of space/time and bioethics through examination of rural health settings. Issues raised include intersections of spatial and power relations, socio-spatial gradients of expertise, and socio-spatial dimensions of ethics knowledge and practices within medical settings.

Introduction

Bioethics is the discipline whose theory and practices have, more than any other, come to provide the framework for contemporary thinking about ethical and moral features of medicine, perhaps most pervasively so in the US. Mainstream bioethics reflects the postwar liberal philosophical tradition in its modernist emphasis on autonomy, independence, and reasoning from abstract rules and principles. These characteristics have contributed enormously to the flourishing of the bioethics paradigm across spheres of activity and a wide range of ethical conflicts (Jennings, 1998), including emerging international frameworks of ethical standards (e.g., Knoppers & Chadwick, 1994). Nonetheless, bioethics has received criticism from within and outside the field for the narrowness of its approaches to identifying and resolving ethical dilemmas in medicine (Callahan, 1984). As the bioethics project has been about, at least in part, constructing a framework of universal patient rights and protections, it has—according to these criticisms—tended to universalize the subject(s) of those rights, both as agents and as objects of power.

Efforts to “particularize” bioethics have included bringing alternative theoretical perspectives to the project, including casuistry (Toulmin, 1994), the emergence of feminist, disability rights, and multi-cultural critiques of mainstream bioethics (Wolf, 1996; Parens & Asch, 1999; Jennings, 1998), and phenomenological and ethnographic contributions examining the situatedness of bioethical concerns and experiences in local contexts (Kaufman, 1997; Kelly, Marshall, Sanders, Raffin, & Koenig, 1997; Chambliss, 1996). Such critiques have pointed to the universalizing and abstract tendencies of bioethics as limiting the field's ability to engage the lived worlds of diversely constituted and situated social groups, particularly those that are marginalized.

In spite of these calls for attention to diversity, however, a lacunae of interest remains within bioethics concerning the health and health care of rural residents (Purtilo, 1987). The scant literature in American bioethics explicitly concerned with rural health has focused overwhelmingly on medical practitioners and their perceptions of traditional bioethical dilemmas in rural practice (e.g., Purtilo & Sorrell, 1986; Jecker & Berg, 1992; Ullom-Minnich, & Kallail, 1993; Turner, Marquis, & Burman, 1996), giving little or no voice to rural residents for insight into the potentially unique moral and ethical dimensions of rural health care.1 This paper will present the argument that developing a theory of bioethical that is able to address the problems of rural people and their health presents the opportunity to engage with the resurgence of interest in place, space, identity and power in various areas of social theory and philosophy (Casey, 1997; Escobar, 2001; Gupta & Ferguson, 1992; Harvey, 1989; Massey, 1994). A phenomenology of place, identity, and power is presented as an epistemological revision or extension to traditional bioethics. Such a revision is timely given such factors as the increasingly international reach of bioethics, globalization of the biotechnology industry, public health concerns accompanying population displacement, and the continuing need for attention to urban/rural differentials in health status and access. Being able to think about place and practice in clear yet theoretically nuanced ways may provide an important antidote to a well recognized shortcoming of modern bioethics.

This paper will discuss recent theoretical work on place, space, identity and culture as relevant to a bioethics of rural health, and apply these concepts in analysis of empirical data from a qualitative study of families of children affected by a genetic condition residing in rural counties of the US. It will be argued that, to varying extents, the expansions or re-directions of bioethics discussed above have created openings for consideration of place and space in bioethics. The purpose of this paper is to lay out possible directions for engaging bioethical theory building and practice with concepts of place and space. Among these possible directions, the analysis focuses on two: the place-basedness of subjects and subjectivity in rural health, and the experience of health-seeking journeys responding to a society's spatial practices in the political economy of health care.

Section snippets

Critiques of the autonomous subject

The mainstream paradigm of Western bioethics has been the subject of a range of critiques since its emergence in the 1970s. Many of these critics point particularly to the notion of the individual autonomous agent that has become enshrined within this paradigm and drives its most powerful contributions to contemporary thinking about ethical practice in medicine. Two such critiques will be briefly discussed here for openings they provide to space and place within bioethical theory. The first,

Theorizing place and space

The discussion of recent social theory concerning place and space presented here is necessarily brief and selective for the purposes of this paper (for a more complete discussion see Escobar, 2001). Theories of place and space have undergone important recent developments in philosophy (Lefebvre (1993), Casey (1997); Lefebvre, 1991), geography (Soja, 1989), feminist geography (Massey, 1994), cultural anthropology (Gupta & Ferguson, 1992), and sociology (Shields (1995), Urry (1996)). I suggest

Bioethics and rural health care

Over the past several decades of its existence, bioethics has paid scant attention to rural health care, particularly “rural” as it is encountered in the United States. This mirrors the relative lack of attention to rural health care generally within the US medical system, and is evidence of what ethicist Ruth Purtilo has described as an urban skew in medical ethics (Purtilo, 1987, p. 12). This inattention exists in spite of the fact that roughly one-quarter of the American population, or about

Spatial politics of rural health care

The American health care system embodies the social and economic devaluation of rural spaces in this country, a devaluation that is multi-faceted, incorporating social and economic practices as well as myths and stereotypes of rural lifestyles and values. Rural areas in the US contain a disproportionate share of the country's poverty. The persistence and severity of rural poverty is the result of past economic and social development policies as well as current economic transformation. Rural

Public health genetics rural outreach

An emerging element of social and spatial practices that constitute modern medical care is the integration of genetic sciences into clinical medicine. In 1978, the Federal Maternal and Child Health program, through the National Genetic Disease Act (Title XI of the Public Health Services Act), began to support the development of statewide genetic services programs. The purpose of these programs is to build upon public health infrastructure and develop further capabilities to address problems of

Methods

The analysis presented below draws from in-depth interviews with rural health care clients about the trajectories of their experience with the birth, identification, disclosure, diagnosis, referrals, and living with a child with a genetic condition. The interviews are being conducted as part of a 3-year ethnographic study of rural genetic outreach program clients in the state of Kentucky. Data are being collected through in-depth, semi-structured interviews with approximately 80 parents who are

Place-based subjects and geographic imaginaries

Although interviews are not specifically framed to elicit discussions of rural/urban spaces, rural clients expressed a variety of perceptions of rurality that were relevant to their medical needs and health care. When compared with interviews conducted with health care clients in urban areas, rural clients often reflect on a sense of place, and an otherness between rural/urban spaces that is consequential for how they see themselves and perceive themselves to be seen by others. For example, the

Place, space, time and ethics practice

The narrative of prenatal genetic testing provided by a wife and husband who experienced the birth of a child with a rare set of gene deletions illustrates the significance of place, space, and time in producing ethics practices and the experience of them. In this narrative, the ethical ideals of non-directiveness and informed consent are seen to be spatially and temporally contingent. The relationship of the individuals to the places in which medical encounters occurred, and their movement

Conclusion

This paper has sought to address the lack of attention within bioethics to rural health and rural health care experiences by employing recent theoretical approaches to place and space to conceptually ground analysis of empirical data. How do people construct narratives and practices of health, health care, responsibility, and empowerment in contexts of movement, dis-placement, and “othering” necessitated by the uneven configurations of expertise, capital, and power across biomedical space? What

Acknowledgements

The research upon which this article is based was funded by the US National Human Genome Research Institute Grant No. HG0175.

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