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In 1920 Margaret Sanger called voluntary motherhood “the key to the temple of liberty” and noted that women were “rising in fundamental revolt” to claim their right to determine their own reproductive fate (Rothman, 2000, p. 73). Decades later Barbara Katz Rothman reflected on the social, political and legal changes produced by reproductive-rights feminists since that time. She wrote: So the reproductive-rights feminists of the 1970s won, and abortion is available – just as the reproductive-rights feminists of the 1920s won, and contraception is available. But in another sense, we did not win. We did not win, could not win, because Sanger was right. What we really wanted was the fundamental revolt, the “key to the temple of liberty.” A doctor’s fitting for a diaphragm, or a clinic appointment for an abortion, is not the revolution. It is not even a woman-centered approach to reproduction (2000, p. 79).

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.

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.

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.

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.

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.

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).