Sociology Of Bioethics Research Articles

Regarding Bioethics: A Sociology of Morality.

C. Wright Mills said that when done well, sociology illuminates the intersection of biography and history. This essay examines how the author's vocational choices and career path were shaped by historical circumstance, leading him to a degree in sociology and to participation in the odd and interesting interdiscipline of bioethics. Drawing on a distinction between sociology in bioethics and sociology of bioethics, the essay considers the value of sociology to the bioethical project.

An "Ethical Moment" in Data Sharing.

This study draws on interviews with forty-nine members of a biomedical research community in the UK that is involved in negotiating data sharing and access. During an interview, an interviewee used the words “ethical moment” to describe a confrontation between collaborators in relation to data sharing. In this article, I use this as a lens for thinking about relations between “the conceptual and the empirical” in a way that allows both analyst and actor to challenge the status quo and consider other ethical possibilities. Drawing on actor network theory (ANT), I approach “the empirical” using the concepts of controversy and ontological uncertainty as methodological tools to tackle the problem of ethics. I suggest that these concepts also provide a bridge for understanding the ontological structure of the virtual and the actual, as described in Deleuze’s Difference and Repetition. While other science and technology studies scholars have sought to draw on Deleuze, this article addresses the integration of ethics and empirical research. It arises as a critical reaction to existing treatments of this problem as found in empirical ethics, especially in the sociology of bioethics, and indirectly in ANT texts.

On the emergence and consolidation of bioethics as a discipline, as seen from a sociological perspective.

This article examines the emergence and consolidation of bioethics as a discipline from a sociological perspective. This reconstruction helps us to understand on the one hand what is meant by bioethics and what its practices and areas of inquiry are, and on the other to identify various concepts and expert opinions about what the field of study for bioethics should be, opinions which lead in practice to different applications of the discipline in health sciences. This becomes relevant for epistemological discussions about the discipline and for consolidating a sociology of bioethics in the context of Ibero-America.

Beyond Cultural Myopia: the Challenge of the Bioethical Imagination

The consolidation of the interdisciplinary field of bioethics in Europe and in the United States was accompanied by harsh criticisms by the social sciences; criticisms that have endured and been reshaped from the late twentieth century until the present. This article begins with a critical discussion of the myopia detected in a bioethical thought that has systematically disregarded its origins, both cultural (traditions) and social (beliefs, values and norms). I claim that this deficit could be rectified if social scientists, in general, and sociologists, in particular, were to move away from the periphery, which they still occupy today, and take up a central position in the area of bioethics. In order to analyze the distant and controversial relationship between the social sciences and bioethics, I proceed to an analysis of their various approaches, respectively guided by descriptive and normative ethics. The specific intersection of sociologists with bioethical thought will be scrutinized, in accordance with an analytical continuum that illustrates an evolution from a collaborative position (sociology in bioethics) to a free and independent position (sociology of bioethics) adopted by the social scientists. The article concludes by presenting a suggestion regarding the integration of the sociological imagination in the processes of ethical deliberation on the moral problems that emerge in biomedical research and clinical practice. In this context, further epistemological reflection is invited regarding the influence of socio-cultural sources of morality relating to the manner in which such problems have been challenged by the bioethical imagination.

The Sociology of Bioethics: The ‘is’ and the ‘Ought’

A selection of recent sociological literature dealing with bioethics, concentrating particularly on its interface with research ethics, is reviewed to reveal that the two disciplines of bioethics and sociology have tendencies to approach subject matters from opposed perspectives. These differences in approach have now been generally recognized, accepted and accommodated by proponents of both disciplines. A turning point in the relationship between the two disciplines may have been reached which augers greater mutual respect, appreciation and even learning.

REGULATION OF CLINICAL RESEARCH AND BIOETHICS IN PORTUGAL

This article presents an overview of the Portuguese transposition of the European Directive on Good Clinical Practice (2001/20/E) concerning scientific and academic debates on bioethics and clinical investigation. Since the Directive was transposed into Portuguese law by its National Assembly, the bureaucracy of clinical trials has been ever more complex. Despite demands for swift application processes by the Pharmaceutical industry, supported by the European Parliament, the Directive's transcription to the national law has not always delivered the expected outcome. However, this has led to an increased number of applications for clinical trials in Portuguese hospitals. In this article I revise bioethical publications and decree-laws enabling an informed appraisal of the anxieties and prospects for the implementation of the clinical trials Directive in Portugal. This article also places the European Directive in the field of sociology of bioethics, arguing that Portuguese bioethical institutions differ from those of the US, and also from Northern European counterparts. The main divergence is that those people in Portugal who claim expertise in 'legal' bioethics do not dominate either the bureaucratic structure of research or ethics committees for health. Even experts in the applied ethics field now claim that 'professional bioethicists do not exist'. The recent creation of a national Ethics Committee for Clinical Investigation (CEIC) in line with the European Directive on Good Clinical Practice (GCP) will not change the present imbalance between different professional jurisdictions in the national bioethical debate in Portugal.

Explaining the emergence of euthanasia law in the Netherlands: how the sociology of law can help the sociology of bioethics

The debate over the legalisation of voluntary euthanasia is most often seen to be the result of three changes in society: individualisation, diminished taboos concerning death and changes in the balance of power in medicine. The fact that these changes occurred in many western countries but led to legalisation in only a few makes this claim problematic. I examine whether socio-legal propositions, with respect to the emergence of laws which focus on social control, offer a better approach to understanding the development of rules allowing and governing euthanasia. After a short sketch of the history of the Dutch law regulating euthanasia, I discuss these three societal changes in the light of shifts in the social control of medical behaviour that shortens life. I show that the Dutch relaxation of the prohibition of euthanasia goes together with new forms of social control: doctors' self control is complemented with second-party control (by patients), professional third-party control and governmental control. My work calls attention to the fact that bioethics is part of larger systems of social control.

Bioethics, Social Class, and the Sociological Imagination

Last year I published a short article urging bioethicists to carefully examine the question of what ought to constitute the canonical issues topics and questions driving research and teaching in bioethics. Why some subjects dominate the field whereas other topics are regarded as matters for scholars in other disciplines is a question that has intrigued me for nearly a decade. How are the boundaries of bioethics established? What factors influence research agendas and the creation of bioethics curricula? How do funding agencies, editors, and leading scholars shape the field of bioethics? These questions are increasingly receiving scrutiny from Charles Bosk, Raymond De Vries, and other researchers as they explore the sociology of bioethics and the “construction” of the “ethical enterprise.”

What is the role of empirical research in bioethical reflection and decision-making? An ethical analysis.

The field of bioethics is increasingly coming into contact with empirical research findings. In this article, we ask what role empirical research can play in the process of ethical clarification and decision-making. Ethical reflection almost always proceeds in three steps: the description of the moral question, the assessment of the moral question and the evaluation of the decision-making. Empirical research can contribute to each step of this process. In the description of the moral object, first of all, empirical research has a role to play in the description of morally relevant facts. It plays a role in answering the "reality-revealing questions" (what, why, how, who, where and when), in assessing the consequences and in proposing alternative courses of action. Secondly, empirical research plays a role in assessing the moral question. It must be acknowledged that research possesses "the normative power of the factual," which can also become normative by suppressing other norms. However, inductive normativity should always be balanced out by a deductive form of normativity. Thirdly, empirical research also has a role to play in evaluating the decision-making process. It can rule out certain moral choices by pointing out the occurrence of certain unexpected consequences or effects. It can also be useful, however, as a sociology of bioethics in which the discipline of bioethics itself becomes an object of research.

The Wizard of Oz: An Analysis of the Evolution of Its Societal Parallels

THE WIZARD OF OZ: AN ANALYSIS OF THE EVOLUTION OF ITS SOCIETAL PARALLELS ALAN COPPERMAN* Lyman Frank Baum's classic tale, The Wonderful Wizard of Oz, was written 85 years ago for children—but with an allegorical value that has transcended the ages. Baum succeeded in teaching morals and prompting the imagination of countless youths. A political analysis of this work, however, shows an ironic portrait of America and its Populist movement at the turn of the twentieth century. By investigating Baum's symbolism from the perspectives of both then and now, one can longitudinally view common themes within society and can recognize social, political, and scientific innovations. Today, as modern technology brings us organ transplants, new parallels between the Land of Oz and contemporary society emerge. The bioethical considerations of organ transplantation may also be investigated using questions proposed by Baum years ago. Originally, Baum was writing of a time when the "free silver" movement was popular. The symbolism of magic silver shoes walking on a Yellow Brick (golden) Road and Oz = (Ounce) is ubiquitous. The Woodman, under a witch's spell, chopped off a different part of his body every time he swung his axe. In Oz, these parts could be replaced with tin. Here, Baum is giving his Populist view of evil Northeastern influences on honest labor. The Populist view dehumanized the simple laborer so that the faster and better he worked, the more quickly he became a kind of machine [I]. Each of the characters in the novel is a symbol of either an interest group or a politician. The Cowardly Lion, for example, personifies William Jennings Bryan, while the Winged Monkeys were an Oz substitute Professor Renée C. Fox submitted this paper to PBM. It was written by student Copperman for her course in the Sociology of Bioethics at the University of Pennsylvania. Each student was asked to write several pages on what he or she was thinking and feeling in re sociology of bioethics. (Copperman is currently a student at New York Medical College.) *Address: 3137 Hewlett Avenue, Merrick, New York 11566.© 1986 by The University of Chicago. All rights reserved. 0031-5982/86/2903-0472$01.00 Perspectives in Biology and Medicine, 29, 3, Part 1 ¦ Spring 1986 | 475 for the plains Indians. Led by naive innocence (Dorothy) and protected by goodwill (Good Witches), the farmer (Scarecrow), the laborer, and the politician approach the mystic holder of national power to ask for mystical fulfillment. The Wizard turns out to be an ordinary man, but one capable of providing shrewd answers to those with self-induced needs. Today, one can envision a Humana hospital as a modern-day Oz. Only at this technological frontier can the needs of many be met. Transplants of many organs are becoming commonplace as man speeds down the modern yellow brick road toward progress. With the recent implantation of the first artificial hearts, a new facet of the Oz/Humana metaphor may be promulgated. When Barney Clarke had his human heart replaced by an artificial one, questions—not unlike those asked by the tin man—arose about his ability to love. Although scores of accounts of the transplant dealt with technique and scientific data, a substantial number focused on the heart's spiritual and magical value. Members of the operating team in Utah saw fit to note that Barney Clarke had proved that courage and good humor and love of wife and children can be sustained by an artificial heart. He was considered a hero and a pioneer. Just as the Cowardly Lion went to Oz in search of courage, the surgeons who performed the transplant found the opportunity to succeed —and the "courage to fail"—at the Humana Hospital. Renée Fox elaborated on this "courage to fail" ethos in her book by that title: it "epitomizes the bold, uncertain, and often dangerous adventure in which medical professionals and their patients are engaged" [2]. She emphasizes the value of confronting this life-or-death organ-transplant situation with a courage shared by physician and patient, a courage that can only be found and maintained under special circumstances. Certain moral questions are raised by both the Tin Man...