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About this book

How influential has the Nazi analogy been in recent medical debates on euthanasia? Is the history of eugenics being revived in modern genetic technologies? And what does the tragic history of thalidomide and its recent reintroduction for new medical treatments tell us about how governments solve ethical dilemmas?

Bioethics in Historical Perspective shows how our understanding of medical history still plays a part in clinical medicine and medical research today. With clear and balanced explanations of complex issues, this extensively documented set of case studies in biomedical ethics explores the important role played by history in thinking about modern medical practice and policy.

This book provides student readers with up-to-date information about issues in bioethics, as well as a guide to the most influential ethical standpoints. New twists added to well-known stories will engage those more familiar with the challenging field of contemporary bioethics.

Table of Contents

Introduction

Abstract
Bioethics can be understood as the most recent expression of the social exchanges entailed in weighing up and assigning value in the world of medicine. The word ‘bioethics’ dates from the twentieth century: in 1927, the German Protestant theologian Fritz Jahr coined ‘Bio-Ethik’ to encapsulate his view that ethical reflection should not be limited to behaviour among human beings but should extend to the entire living world.1 Apparently not widely taken up, ‘Bio-Ethik’ appears to have faded from use well before 1970, when the US research oncologist Van Rensselaer Potter II devised a similar English word, ‘bioethics’, to promote his vision for a ‘new field devoted to human survival and an improved quality of life’. Potter’s bioethics had the goal of linking the biological sciences with the study of ethics.2 Around the same time, and possibly independently again, R. Sargent Shriver, a philosopher, and André Hellegers, a foetal physiologist, both of whom were associated with the Catholic Georgetown University, used the word ‘bioethics’ to denote a form of applied philosophical ethics which addressed developments in the biomedical sciences.3 While much bioethics literature still addresses issues pertaining to the biosphere, in Jahr’s and Potter’s sense, the narrower, biomedical understanding of the term has probably become the most recognized and influential, and is the subject of this book.4
Sarah Ferber

1. Bioethics as Scholarship

Abstract
The present chapter outlines some of the history and politics of scholarly writing in bioethics. To be able to identify arguments and tendencies which are already familiar to bioethics ‘insiders’ can have practical implications. Students undertaking a course in a philosophy school, a science and technology studies (STS) programme, a medical school, a law school, an English literature department, or a church-funded college or a secular institution, will probably come across very different ways of looking at the same issues. Specific agendas and protocols can be masked in the sophisticated world of bioethics politics, and the questions asked and expected answers often reflect the disciplinary training and assumptions of the professor concerned. Teachers and the books and articles they ask a student to read can differ not only in their interpretations, but on basic questions about what makes for a valid academic activity. Knowing how to identify narrative approaches and buzzwords, for example, can affect questions such as: Which bodies of literature should be used to research an assignment? To which journal should a graduate student send her or his first academic paper? Who should assess a dissertation? Student journalists, too, acclimatizing to the world of sound bites and media releases, need to be able to recognize readily the distinctive terms which identify particular mindsets within bioethics.
Sarah Ferber

2. Language, Narrative and Rhetoric in Bioethics

Abstract
As bioethics became more multidisciplinary in the 1990s, scholars from a range of academic fields began to pay greater heed to the role of language, narrative and rhetoric in the presentation and understanding of medical ethics issues. The collection Stories and their Limits, from 1997, for example, investigated the impact of this new trend and included works by ‘physicians, literary critics, religious studies scholars, philosophers, sociologists [and] a comparatist’ (i.e. scholar of comparative language, literature or culture).1 The editor Hilde Lindeman Nelson is a philosopher who has worked with social science and literary scholars in the field of bioethics. Apparently writing to engage other philosophers, she explains where the work of those who study narrative and language belongs in the wider scheme of interdisciplinary bioethics:
If ‘doing ethics’ means developing and defending formal ethical systems, then they are not doing ethics. But if it means reflecting on the moral aspects of particular encounters within a powerful social institution where what is said and done reveals a great deal about who we are and what matters in our lives, then they are indeed ethicists, in at least a loose sense of the word.2
Sarah Ferber

3. Euthanasia, the Nazi Analogy and the Slippery Slope

Abstract
In July 2009, the United States Democratic Party fulfilled a major policy objective of President Barack Obama, introducing to Congress a healthcare funding bill, America’s Affordable Health Choices Act of 2009. The bill’s section 1233 made several references to ‘end of life’ health care: it proposed that government funding would be available for people to access physicians’ advice pertaining, for example, to advanced medical directives in the event of grave illness; and it provided for medical proxies (nominated people who could speak for the patient).1 That such a plan would provide an opening for opponents to invoke the history of so-called euthanasia policies under the German National Socialist (Nazi) regime (1933–1945) had been in evidence within days of the new president’s election: in November 2008, anti-Obama commentators claimed to see in his plans for a national health scheme echoes of the Nazis’ ‘Aktion T4’ programme in which doctors killed over 70,000 mentally and physically disabled children and adults.2 The Washington Times predicted that under Obama the US would have its own ‘T4 program [entailing] trivialization of abortion, acceptance of euthanasia, and the normalization of physician assisted suicide’.3 Once the bill was tabled, opponents alleged, for example (in the words of Sarah Palin, 2008 Republican vice-presidential candidate and key figure of the new ultra-right Tea Party Patriots), that the national health scheme would create ‘death panels’ with control over the fate of the sick, the elderly and the disabled, based on their ‘level of productivity in society’.4
Sarah Ferber

4. Heredity, Genes and Reproductive Politics

Abstract
Since the early nineteenth century, Western medicine has been involved in fulfilling the desires of individuals, families and governments to control human heredity. Medicine’s role in so-called ‘hereditarian’ undertakings has had mixed consequences: at worst, in implementing policies of compulsory eugenic sterilization; at best (although problematically to some) in developing clinical probes to identify, prior to the conception or full gestation of a foetus, the presence of genes which would cause any child born to suffer from a deleterious medical condition. There is no longer an influential worldwide eugenics movement urging governments to select who is ‘fit’ or ‘unfit’ to reproduce and very few of the social, political, ideological or technical realities that prompted the rise of eugenics a century ago are relevant today. But contemporary critics concerned about the social implications of modern genetics (particularly reproductive genetics) often invoke the history of eugenics to signal their concerns.
Sarah Ferber

5. Human Experimentation

Abstract
‘The fundamental dilemma of modern experimental medicine’ observes historian and physician Christian Bonah, ‘is the potential opposition between an individual’s well-being, and the production and application of scientific knowledge in medicine’.1 Experimental medicine by definition tests the responses of mind and body to identify limits and expand the knowledge base, rather than providing direct therapeutic in the first instance. Modern medical science also often relies on a basic model of comparison between an experimental cohort and a control group of some kind, to test claims about a new product or procedure. In its essence, therefore, modern medical science requires a balance of risk and benefit, while the rapidly expanded technical capacities of modern surgery and pharmacology have extended the range of both risks and benefits. New knowledge can help others, but the process required for its development might harm the research subject. Even in the absence of institutional ethics review, therefore, the implicit question of ethical balance for modern medicine would remain, as, in the formulation of Daniel Callahan, ‘hazardous possibilities … coexist with the good that research brings’. Moreover, he notes, historical and contemporary examples have shown that ‘the desire to do good can be potent enough to invite the temptation to go too far’.2
Sarah Ferber

6. Thalidomide

Abstract
Modern pharmaceutical products are numerous, highly potent and, especially in wealthy countries, an important part of everyday life. Pharmaceutical companies have become central players in global health-care provision and their employees are as likely to be research scientists as they are to be trained clinicians. ‘Bioethics’ in relation to the pharmaceutical industry, therefore, is less about problematic clinical encounters than it is about the politics of sales, marketing and regulation, a mix of business ethics and public policy.1 The names of drugs which have recently offered hope but have become surrounded by doubt — fluoxetine hydrochloride (best known by the trade name Prozac), rofecoxib (best known by the trade name Vioxx), oestrogen and progestin (in ‘hormone replacement therapy’) — are familiar to most people who read or watch the news. Of all modern drugs, however, there is one whose notoriety stands in a category of its own: thalidomide.
Sarah Ferber

Discussion and Conclusion: Bioethics in Historical Perspective

Abstract
The book will conclude with a historical overview to synthesize some key themes. First, we shall take a look at some of the historical eras which have had a particular significance for contemporary Western bioethics. They are: the Enlightenment and the French Revolution; the nineteenth century; the Nazi era; the 1950s–1970s; and the 1980s and 1990s. Each of these eras is especially significant for bioethics history for the influence of ideas and institutions from these eras, and the influence of current views in relation to these periods. Next, this overview will reflect on some of the distinctive characteristics of the contemporary Western bioethical landscape. These are: the fragmentation of the medical subject; the importance of the abortion debate; the polyvalent discourse of rights; the changing meanings of activism; the problems of regulation; the present status of medical autonomy; ethical pluralism; and the dissolution of national boundaries.
Sarah Ferber
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