The foundation of research ethics in community law

The creation of the European Community by the Treaty of Rome in 1957 marked the beginning of the efforts to coordinate and harmonize national policies in many strategic sectors with high economic value, among them several aspects of scientific research. The European Union Law, formerly known as European Community law, now includes a range of ethical principles that apply to research projects developed with the financial support of the European Union. Which were the steps in the integration of the ethics of sciences in the context of the Union? This article aims to study first, what were, and what are the legal bases of the integration of the ethical dimension of researches in life sciences by the European Union and, secondly, the institutional organisation that has been set up in order to discuss the development of common ethical norms, especially bioethics one, and in order to apply these rules which respect national particularities. In this regard, we analyse the relevant legal texts providing a foundation for the creation of a European bio-law and we give an overview of the European institutions' activity in the field of bioethics by looking particularly the health research field.     

Ethics and rural healthcare: what really happens? What might help?

Relatively few articles discuss the ethical issues that accompany healthcare in rural areas. This article presents and discusses the key findings obtained from multi-method research studies conducted over a 9-year period of time in a multi-state rural area. It challenges the efficacy of current models for bioethics, shows what kinds of ethical issues develop in rural communities, and offers a framework for envisioning resources and approaches that may be more appropriate.     

Gert's moral theory and its application to bioethics cases

Bernard Gert's theory of morality has received much critical attention, but there has been relatively little commentary on its practical value for bioethics. An important test of an ethical theory is its ability to yield results that are helpful and plausible when applied to real cases. An examination of Gert's theory and his own attempts to apply it to bioethics cases reveals that there are serious difficulties with regard to its application. These problems are sufficiently severe to support the conclusion that Gert's theory is unacceptable as an approach for resolving bioethics cases, even relatively noncontroversial cases.     

On Hope and Hard Choices

In Handle with Care (2009), novelist Jodi Picoult presents a heartbreaking case involving the question of wrongful birth. This essay examines Ronald M. Green's writings in the field of bioethics to see what wisdom they might bring to this case. I argue that Green's contributions to bioethics exemplify some of the best of ethical argumentation: attention to facts, discernment of morally relevant differences, enunciation and justification of principles, originality, and compassion. I then draw from his work three foci that illuminate aspects of the dilemma presented by Picoult: the importance of parental love, the possibility that the dilemma might be reframed away from wrongful birth, and the need to shift our focus to questions of justice. While appreciating Green's contributions to bioethics, I also indicate several places of nuanced disagreement.     

Roles of moral philosophy in appropriated bioethics: a response to Baker and McCullough

Strong arguments support the notion that much of modern bioethics is a result of appropriation rather than strict application of traditional moral philosophy. Nevertheless, it is important to recognize these sources and approaches associated with them, even when working with appropriated theories, since traditional ethical theory does and should influence modern bioethics.     

An Ethical Justification of Women's Studies; or What's a Nice Girl Like You Doing in a Place Like This?

The feminist in academe, says Paula Bennett, is like Procne married to Tereus, “inextricably wedded to the sources of her harm.” An ethical justification of academic feminism can be found, not in cooperation and affiliation, but in the strategies currently necessary to ensure curricular and cultural diversity. Historically contextualized and strategically politicized, this ethic is founded on the claim that universities are places where we may all learn to know what is other than ourselves.     

Bioethics and the marginalization of mental illness

This paper explores why ethical issues associated with mental illness have been generally neglected in the literature and texts of the discipline of bioethics. I argue that the reasons for this are both philosophical and structural, involving the philosophical framework of principlism in bioethics, in particular the privileging of the principle of autonomy, and the institutional location and disciplinary boundaries of bioethics as a profession. Other contributing factors include developments outside of bioethics, in medicine and law and in the delivery patterns and funding sources of mental health services, and above all the pervasive stigma that attaches to mental illness. My goal is to show both how the attention bioethics could bring would benefit this neglected area of health care, and why attending to the issues surrounding mental illness would benefit bioethics in meeting its professional obligations as the public voice on matters of ethical significance in health care.     

Ethical androcentrism and maternal substance addiction

In this paper, I argue that bioethics suffers from a masculinist approach--what I call "ethical androcentrism." Despite the genesis of other legitimate approaches to ethics (such as feminist, narrative, and communicative ethics), this masculinist tradition persists. The first part of my paper concerns the problem of ethical androcentrism, and how it is manifest in our typical ways of "doing" bioethics (as teachers, ethicists, policymakers, and medical practitioners). After arguing that bioethics suffers from a masculinist ethic, I consider the case of maternal substance addiction to show how this ethic negatively affects the treatment of pregnant addicts. I argue that by treatment maternal substance addiction from an androcentric approach, we fail to serve both pregnant addicts and their fetuses; furthermore, we misrepresent the intentional state of pregnant substance addicts and label them "prenatal abusers." If maternal substance addiction is to be ethically addressed--and if pregnant substance addicts are to be effectively treated--we cannot tacitly accept an androcentric ethic.     

On the Structure of Bioethics as a Pragmatic Discipline

This article analyzes certain aspects of the structure of bioethics as a discipline. It begins by arguing that bioethics is an academic discipline of a pragmatic nature and then puts forward a classification of the main problems, issues, and concerns in bioethics, using this classification as a way to outline the limits and framework of the field. Pushing further, it contends that comprehensive treatment of any topic in bioethics requires that three normative dimensions (the ethical, the moral, and the political) be taken into account. It concludes that the classification of the issues and analysis of each issue's normative dimensions can provide valuable contributions toward understanding the sui generis structure of bioethics as a pragmatic discipline.     

Disability: an agenda for bioethics

Contemporary bioethics has been somewhat skewed by its focus on high-tech medicine and the resulting development of ethical frameworks based on an acute-care model of healthcare. Research and scholarship in bioethics have payed only cursory attention to ethical issues related to disability. I argue that bioethics should concern itself with the full range of theoretical and practical issues related to disability. This encounter with the disability community will enrich bioethics and, potentially, society as well. I suggest a number of items that the bioethics agenda should include, such as the development of a casuistry of the right to healthcare and to community integration and an advocacy role in fostering an understanding among the public and policy makers of the need to reform research and treatment related to disability.     

Documentary Bioethics: Visual Narratives for Generations X and Y

Narrative bioethics is primarily understood to involve storytelling through the use of literature. This article suggests that other forms of media are necessary to convey stories of an ethical nature to an audience broader than one being trained as medical professionals. "Documentary bioethics" is a manner to present and interpret stories of an ethical nature using forms of popular electronic media in a reality-based documentary style to society at large, specifically Generations X and Y.     

Emergency Research and Consent: Keeping the Exception from Undermining the Rule

Contemporary bioethics has been somewhat skewed by its focus on high-tech medicine and the resulting development of ethical frameworks based on an acute-care model of healthcare. Research and scholarship in bioethics have payed only cursory attention to ethical issues related to disability. I argue that bioethics should concern itself with the full range of theoretical and practical issues related to disability. This encounter with the disability community will enrich bioethics and, potentially, society as well. I suggest a number of items that the bioethics agenda should include, such as the development of a casuistry of the right to healthcare and to community integration and an advocacy role in fostering an understanding among the public and policy makers of the need to reform research and treatment related to disability.     

What Ethics for Bioart?

Living artworks created with biotechnology raise a range of ethical questions, some of which are unprecedented, others well known from other contexts. These questions are often discussed within the framework of bioethics, the ethics of the life sciences. The basic concern of institutionalised bioethics is to develop and implement ethical guidelines for ethically responsible handling of living material in technological and scientific contexts. Notably, discussions of ethical issues in bioart do not refer to existing discourses on art and morality from the field of aesthetics. The latter framework is primarily concerned with how the moral value of an artwork affects its artistic value. The author argues that a successful integration of these two frameworks will make possible an ethics of bioart that is adequate to its subject matter and relevant for practice. Such an integrated approach can give increased depth to understandings of ethical issues in bioart, inspire new ways of thinking about ethics in relation to art in general and give novel impulses to bioethics and technology assessment. Artworks by the Tissue Culture and Art Project and their reception serve as the empirical starting point for connecting perspectives in art with those of bioethics, developing an ethics for bioart. The author suggests that consideration of the effect of these artworks is vital in validating ethically problematical applications of biotechnology for art. It is argued that the affective, visceral qualities of living artworks may spur the audience to adjust, revise or develop their personal ethical framework.     

Accounting for context: Future directions in bioethics theory and research

Many physicians have found that the traditional approach to bioethics fails to account for important aspects of their moral experience in practice. New approaches to bioethics theory are challenging the traditional application of universal moral principles based in liberal moral theory. At the same time, a shift in both the goals and methods of bioethics education has accompanied its “coming of age” in the medical school curriculum. Taken together, these changes challenge both bioethics educators and theorists to come closer to the details and nuances of real clinical encounters. The emerging trend emphasizes the importance of context in bioethics education and in the moral theory and research under-girding it. This article introduces one research approach examining the practical life contexts of medical students' ethical experiences and learning. It calls for increased attention to research and theory in bioethics that more adequately accounts for the ways different contexts produce significant changes in meaning and understanding in medical encounters.     

Gene Concepts and Genethics: Beyond Exceptionalism

The discursive explosion that was provoked by the new genetics could support the impression that the ethical and social problems posed by the new genetics are somehow exceptional in their very nature. According to this view we are faced with special ethical and social problems that create a challenge so fundamental that the special label of genethics is needless to justify. The historical account regarding the evolution of the gene concepts could serve us to highlight the limits of what we know about genes and what we can do with genes. The widespread notion about the exceptionality of genetic knowledge and its applicative possibilities is hardly justifiable and leads to misunderstandings regarding the conceptualization of the ethical and social problems we might face. Following a more realistic interpretation of the role of genes in human life we might avoid a whole set of fictive dilemmas and counterproductive regulatory efforts in bioethics. Bioethical discourse should move from the gene-centered scientific discourse toward the more sophisticated and complex discourses where human development represented as a matter of complex interactions between genomes and environments, between genes, educational factors, nutritional regimes, and other different developmental resources. If a gene is seen as one among the different developmental resources that are shaping a given human trait then both genethics and genetic exceptionalism could hardly be represented as a justified approach in discussing the ethical and social problems of genetics.     

Aboriginal Health Care and Bioethics: A Reflection on the Teaching of the Seven Grandfathers

Contemporary bioethics recognizes the importance of the culture in shaping ethical issues, yet in practice, a process for ethical analysis and decision making is rarely adjusted to the culture and ethnicity of involved parties. This is of a particular concern in a health care system that is caring for a growing Aboriginal population. We raise the possibility of constructing a bioethics grounded in traditional Aboriginal knowledge. As an example of an element of traditional knowledge that contains strong ethical guidance, we present the story of the Gifts of the Seven Grandfathers. We note a resemblance of this Ojibway teaching to virtue ethics in European traditions, but we suggest that there are also important differences in how these two traditions are currently presented. We hope that further engagement with a variety of indigenous moral teachings and traditions could improve health care involving Aboriginal patients and communities, and enrich the discipline of bioethics.     

Why a feminist approach to bioethics?

Many have asked how and why feminist theory makes a distinctive contribution to bioethics. In this essay, I outline two ways in which feminist reflection can enrich bioethical studies. First, feminist theory may expose certain themes of androcentric reasoning that can affect, in sometimes crude but often subtle ways, the substantive analysis of topics in bioethics; second, it can unearth the gendered nature of certain basic philosohical concepts that form the working tools of ethical theory.