Table of contents(19 chapters)
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.
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.
Whose Body (Of Opinion) is it Anyway? Historicizing Tissue Ownership and Examining ‘Public Opinion’ in Bioethics
Debates regarding patient claims to extant tissue samples are often cited as beginning with the infamous US case of John Moore vs. the Regents of the University of California (1984–1990) – where the plaintiff unsuccessfully tried to claim title in a cell line derived from his excised spleen. Following the 1990 Supreme Court verdict, the issue of patient property in excised tissue was held by certain bioethicists as the ethical problem inhering in biomedical research from the 1980s onward: encompassing debates about a newly-avaricious biotechnology, consent, autonomy and identity. I show here that the concept of patient property was first mooted during the 1970s, some 10 years before Moore, as a response to US-based criticism of the use of foetal and human tissues in research. Rather than representing a struggle between an avaricious science and misled patients, it evolved as a result of debates between philosophers, lawyers, scientists and members of the public, amidst broader debates regarding human experimentation and abortion. Moreover, the first person to assert a patient's right to their own, or their family's tissue, in a legal arena was a scientist. This article attempts to investigate, through the evolution of ownership debates, how bioethicists and scientists themselves construct what counts as ‘public opinion’.
Let us return to Nancy Cruzan's story. Hopeful that Nancy would eventually recover, her parents, Lester and Joyce Cruzan, agreed to have doctors insert a feeding tube to deliver artificial hydration and nutrition – a decision they would one day regret. Although the Cruzans visited frequently, Nancy was unable to respond to their attention. After four years had elapsed, the Cruzans concluded that Nancy would never regain consciousness and should be allowed to die.
The Changing Context of Neonatal Decision Making: are the Consumerist and Disability Rights Movements Having an Effect?
In Great Britain in the 1960s and 1970s, a physician (Lorber, 1971) developed criteria that would exclude from treatment many babies born with spina bifida (“open spine”) based on what he perceived to be a poor projected quality of life. In the US, the parameters of the modern debate developed around the case of “Baby Doe,” a child born in the early 1980s with Down syndrome and duodenal atresia, an intestinal blockage. Without surgery to correct the blockage, the baby would not survive. Because the infant also had Down syndrome, which typically includes some degree of intellectual disability, the parents decided not to consent to the surgery. The parents’ decision was met with outrage by disability advocacy groups, as was a similar decision a few years later to forego surgery to repair a myelomeningocele (spina bifida) in the case of “Baby Jane Doe.” The publicity surrounding these and other non-treatment decisions resulted in the US in the passage of the Child Abuse Amendments of 1984, largely through the efforts of then Surgeon General C. Everett Koop. This legislation effectively mandated universal treatment of newborns with disabilities. However, several court cases since have resulted in rulings allowing parents to discontinue life support based on quality-of-life issues, resulting in the establishment of state standards in addition to the federal ones (Clark, 1994). Still, the norm in the case of Down syndrome and spina bifida, two of the most common childhood impairments apparent at birth, continues to support the treatment of virtually all children born with these conditions. As a result, most post-natal decision making today involves infants with other, often more serious, impairments that result from perinatal complications or from extreme prematurity. Even in those cases, a bias toward treatment seems to prevail (Levin, 1990).
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 tradition of medicine has until now been characterized by an aspiration to provide as complete as possible a service of care to the populations to which it owes responsibility. The same holds for nursing and caring practices, but the tradition is loosening. Despite the collective assumption that medical and nursing practice rests on solid grounds of knowledge and is framed by a caring ethos, change in practice not only has typically come about in a complex and diffuse fashion, but has also come along with sacrifices, losses and deficits.
Healthcare Ethics Committees Without Function? Locations and Forms of Ethical Speech in a ‘Society of Presents’
Before starting research in the field of ethics, a few common assumptions need to be cleared up. The first is so common that it needs very little space at all: Ethics is a scientific discipline. This accurately describes its location and the problems it covers in a modern, functionally differentiated society. As a branch of philosophy and a normative science, its frame of reference is initially located in a world of possible competing reasons. The basic problem is that of trying to explain good reasons – and the horizon is the sayability of ethical sentences which, even when they reflect an ethical practice, open up a scientific horizon. Ethics is therefore a science – and like every science it can only solve scientific problems (see Luhmann, 2002, pp. 79–93). Practical problems are also the scientific problems of ethics – and that is not a deficiency, but rather a consequence of the basic structures of modern society. A modern society cut loose from political, economic, legal, scientific, artistic, educational and medical problems, on the one hand, allows these disconnected spheres to relate radically to each other, while on the other hand making them logically incompatible. A modern society could not exist any other way (see Luhmann, 1998, pp. 1–21; Nassehi, 2005a). This should first be understood before venturing into research on ethics.
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.
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.
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.
“… But you Cannot Influence the Direction of your Thinking”: Guiding Self-Government in Bioethics Policy Discourse
Since the beginning of the 1980s, we can observe the emergence and proliferation of different processes and institutions of ethical debate throughout Europe and the Western world; these processes and institutions are supposed to inform and improve opinion-building and decision-making processes in the policy field of the biosciences and especially biomedicine. National boards of ethics, ethics commissions, citizen's consultations or conferences have been established throughout; they all have in common the task to debate the ethical aspects of biomedical research and practice, and inform politics as well as the public about the ways of dealing with biomedicine in ‘ethically’ justified ways. Conflicts in the field of biomedicine have increasingly become framed in terms of ethics, and policy makers have to explain and defend their decisions with reference to ethics. The language of ethics has become the major medium for the debate about biomedical issues. This development is accompanied by the emergence of a new cast of professionals: the ‘ethics expert’, who becomes a member of a commission or an advisor to governments or organisations. Bioscientific practice and development seem to be inevitably ethical issues. Consequentially, controversies or conflicts appear to be solved best through ethical deliberations. One can justly speak of an ethics regime 1 that surrounds, stimulates and penetrates discourses, institutions and practices concerning conflicts and policy making in the issue area of biomedicine.
The question of ethics has accompanied all discussion of male circumcision and HIV: How can trials be run ethically? How could circumcision be promoted and provided ethically? Is it ethical to provide medical circumcision and payment to under-resourced test subjects? Would it be ethical to not do so? Two comprehensive and widely read papers (“Circumcision and HIV prevention research: An ethical analysis,” Lancet, 2006, and “The first randomised trial of male circumcision for preventing HIV: What were the ethical issues?,” PLoS Medicine, 2005) addressed the ethical issues of these investigations from the perspective of scientific liability, and many of the opponents of male circumcision, for this or other reasons, call their viewpoint a human rights matter. In this paper, I draw from social science and from the harm reduction movement to propose an ethic of wellness, built on causing the least harm and contributing to the most knowledge. This approach to the ethical question is linked to, but distinct from and sometimes at odds with, the traditional canon of medical ethics or bioethics.
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.
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.
What Does Justice have to do with It? A Bioethical and Sociological Perspective on the Diabetes Epidemic
Since World War II, rates of type 2 diabetes (henceforth diabetes) have skyrocketed, leading to talk of an “epidemic,” believed to result from formerly “adaptive” genotypes colliding with “affluent” postindustrial societies – largely their food excesses and physically undemanding jobs. Hence, experts describe diabetes as a struggle between biology and behaviors – “genes-as-destiny” and “lifestyles-as-choice” – said to have spared no social group. However, racial and ethnic minorities and the poor are affected disproportionately.
In this paper I challenge the “genes–lifestyle” framework and argue that the epidemic, particularly its distribution, is produced not by affluence but by poverty. The cumulative effect of malnutrition or hyperglycemia during pregnancy, of stunting in young children, of structural constraints over healthy lifestyles, and of the lack of a right to adequate medical care, which are all the results of poverty, leads to diabetes and its complications, and to disparities in their distribution among social groups. Hence, diabetes disparities are not mere differences but differences that are avoidable, unnecessary, and unjust. I also highlight selected conceptual problems of the genes–lifestyle framework that mislead about the potential contributions of genetics to human health.
I conclude that because the roots of the diabetes epidemic lie in inequities in social power, the solutions required are not medical but political, and ought to concern a sociologically informed bioethics. I also conclude that insofar as dominant accounts of the diabetes epidemic ignore or downplay these roots, they will legitimize research and policies that reproduce or even increase diabetes disparities. The paper is part of a larger project on the political ecology of diabetes.
Sociological Contributions to Developing Ethical Standards for Medical Research in Very Poor Countries: The Example of Nepal
This chapter discusses guidelines that specify the ethical standards for medical research in very poor countries in order to show how a sociological explanation of illness causation and health care access can offer some additional insight into the refinement of those guidelines. There has been considerable discussion on the proper ethical standards to apply given the context of extreme poverty and inadequate health care infrastructure that characterizes poor countries. Our analysis is intended to suggest that a sociological explanation for illness causation provides a clear justification for including the social context when specifying ethical guidelines and also clarifies the issues that must be addressed. This perspective is particularly sensitive to inequalities in health and access to health resources among medical research subjects, and therefore addresses core issues of justice and beneficence.
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