Vilhjálmur Árnason

Towards authentic conversations. Authenticity in the patient-professional relationship

The purpose of this paper is to evaluate the significance of the existential notion of authenticity for medical ethics. This is done by analyzing authenticity and examining its implications for the patient-professional relationship and for ethical decision-making in medical situations. It is argued that while authenticity implies important demand for individual responsibility, which has therapeutic significance, it perpetuates ideas which are antithetical both to authentic interaction between patients and professionals and to fruitful deliberation of moral dilemmas. In order to counteract these consequences, an alternative idea of authenticity is introduced. According to this idea, authenticity is not regarded primarily as individual sovereignty, but as an ability to participate in a dialogue in which the subjectivity of both partners is respected. Such practice, based on mutual trust and responsibility, would enhance common decision-making and overcome the alienation between patients and professionals.

Scientific citizenship in a democratic society

Using the example of the sociological analysis of biological citizenship and literacy, it is argued that a merely descriptive analysis of these phenomena does not capture their distinctive normative features. While such a description realistically demonstrates how citizens respond to and are shaped by biotechnology and biomedical discourse, it provides no critique of the forces moulding the citizen-consumer. Ideas of active citizenship fuel the search for forms of public engagement in the spirit of deliberative democracy. While these attempts are guided by an important vision of policy making in democratic society, they are beset with several practical difficulties. It is argued that the discussion of deliberative practices has focused too much on direct participation of citizens in various dialogical events and its impact on policy and decision making. This approach ignores other important aspects of deliberative democratic theory, emphasizing public accountability and trustworthiness of democratic institutions.

Decoding the genetics debate: hype and hope in Icelandic news media in 2000 and 2004

The attraction of human genetics is rooted in optimistic projections of possible futures, where present-day problems are to be solved by technologies-to-come. But hyperbolic optimism with its consequent cycles of expectations, investment and disappointment is a threat to users, investors, and the ethical reputation of the biotechnology field. We report a study of the entire news coverage of genetics in Icelandic mass media in 2000 and 2004. All media promoted optimistic industry-based information largely without critical questions concerning scientific uncertainty, health benefits, or ethical challenges. Criticism and deliberation were thematically narrowed down, in 2000 to the issue of “presumed consent” for nationwide participation in a database proposed by the company Decode genetics, and in 2004 to topics concerning Decodes finances. In a discourse of monetary gain and loss, sustained exploration of scientific, moral and cultural issues has little appeal.

Scientific Citizenship, Benefit, and Protection in Population-Based Research

In the discussion of ethical issues concerning databases as resources for population research, two main positions have been predominant. On the one hand, a major emphasis has been on protecting the participants from being discriminated against or having their privacy violated. The other main emphasis has been on the substantial benefits that can be reaped from the research. I show how these often conflicting positions share an important underlying and hidden presumption, implying a too narrow vision of the citizen as a passive participant. I argue that it is important to explore alternative visions of the citizens in relation to population database research. For this purpose, I ask whether recent ideas of deliberative democracy and scientific citizenship provide us with a viable guiding vision of how to facilitate a more active and informed public engagement in database research society. I flesh out my ideas in terms of the debate about consent for participation in database research and show how different models of consent imply different visions of the citizen. I argue that a dynamic authorization model with an opt-out clause could contribute to conditions for more informed, active and critically aware citizens.

Sensible discussion in bioethics: reflections on interdisciplinary research.

“Dissecting Bioethics,” edited by Tuija Takala and Matti Hayry, welcomes contributions on the conceptual and theoretical dimensions of bioethics.The section is dedicated to the idea that words defined by bioethicists and others should not be allowed to imprison peoples actual concerns, emotions, and thoughts. Papers that expose the many meanings of a concept, describe the different readings of a moral doctrine, or provide an alternative angle to seemingly self-evident issues are therefore particularly appreciated.The themes covered in the section so far include dignity, naturalness, public interest, community, disability, autonomy, parity of reasoning, symbolic appeals, and toleration.All submitted papers are peer reviewed. To submit a paper or to discuss a suitable topic, contact Tuija Takala at tuija.takala@helsinki.fi .

Toward critical bioethics.

This article deals with the question as to what makes bioethics a critical discipline. It considers different senses of criticism and evaluates their strengths and weaknesses. A primary method in bioethics as a philosophical discipline is critical thinking, which implies critical evaluation of concepts, positions, and arguments. It is argued that the type of analytical criticism that restricts its critical role to critical thinking of this type often suffers from other intellectual flaws. Three examples are taken to demonstrate this: premature criticism, uncritical self-understanding of theoretical assumptions, and narrow framing of bioethical issues. Such flaws can lead both to unfair treatment of authors and to uncritical discussion of topics. In this context, the article makes use of Häyrys analysis of different rationalities in bioethical approaches and argues for the need to recognize the importance of communicative rationality for critical bioethics. A radically different critical approach in bioethics, rooted in social theory, focuses on analyses of power relations neglected in mainstream critical thinking. It is argued that, although this kind of criticism provides an important alternative in bioethics, it suffers from other shortcomings that are rooted in a lack of normative dimensions. In order to complement these approaches and counter their shortcomings, there is a need for a bioethics enlightened by critical hermeneutics. Such hermeneutic bioethics is aware of its own assumptions, places the issues in a wide context, and reflects critically on the power relations that stand in the way of understanding them. Moreover, such an approach is dialogical, which provides both a critical exercise of speech and a normative dimension implied in the free exchange of reasons and arguments. This discussion is framed by Hedgecoes argument that critical bioethics needs four elements: to be empirically rooted, theory challenging, reflexive, and politely skeptical.

Database research: public and private interests.

It is often argued that a major tension in bioethics is between protecting the private interests of individuals on one hand and contributing to the common good on the other. In this article I ask how fitting this description is as regards the interest at stake in relation to the issue of consent to participation in population data collections. I raise some doubts about what I take to be two common positions regarding public and private interests in this context. The first is that restricted individual consent protects private interests at the cost of public interest.

Nonconfrontational rationality or critical reasoning.

Rationality and the Genetic Challenge by Matti Häyry is a well-written and thoughtful book about important issues in the contemporary ethical discussion of genetics. The book is well structured around seven practical themes that the author takes to exemplify ‘‘the genetic challenge.’’ He also refers to them as ‘‘seven ways of making people better,’’ which the subtitle of the book already puts into question form: Making People Better? In the first chapter of the book, Häyry introduces these seven themes and he discusses each of them in Chapters 3–9. In the remaining two chapters, 2 and 10, he describes the main normative positions analyzed in the book and clarifies his own methodology and position. He chooses six authors, or three pairs of authors, whom he takes to ‘‘represent the three normative doctrines of Western Moral philosophy’’ (p. 27) in order to demonstrate six ‘‘divergent rationalities’’ or ‘‘methods of genethics.’’ In this way, Häyry both summarizes the main prescriptive positions in contemporary bioethical debate and contrasts them with his own ‘‘nonconfrontational notion of rationality,’’ which aims to show that there is a variety of divergent, not mutually exclusive normative views, the justification of which ‘‘depends ultimately on the choice of worldviews, attitudes, and ideas about the foundation of moral worth’’ (p. 47). If this is not acknowledged and the views are put forth as ‘‘universally right,’’ whereas others are regarded as ‘‘universally wrong,’’ ‘‘the result is a heated doctrinal shouting match camouflaged as a dispute over what makes sense and what is reasonable’’ (p. 47). This is a most interesting approach and shows in many ways a refreshing tolerance and a sensible demand that representatives of divergent views need to listen more to each other and try to gain more mutual understanding. In this article, I, however, concentrate on what I take to be the main weaknesses or shortcomings of Matti Häyry’s approach and I proceed as follows. First, I discuss the rationality thesis and evaluate its meaning and function in Häyry’s argument. I then argue that he could have gained much more than he does from Habermas’s theory of communicative rationality in order to flesh out his thesis. I explain this partly by his adoration of the more individualistic approach by Harris and Glover, whose assumptions about rationality he does not sufficiently question, which results in an occasional bias against Kass and Sandel. Finally, I provide some concluding remarks.

Bioethics in Iceland.

Recent bioethics discussion and research in Iceland has been greatly affected by the fact that one of the world’s largest genetics research companies is based there and has been in the forefront of creating a population database resource for its research projects. Consequently, a large part of this article is centered around the bioethical discussion engendered by these projects, but other recent bioethical developments related to issues at the beginning and the end of life will also be discussed.

From species ethics to social concerns: Habermas's critique of "liberal eugenics" evaluated.

Three arguments of Habermas against “liberal eugenics”—the arguments from consent, responsibility, and instrumentalization—are critically evaluated and explicated in the light of his discourse ethics and social theory. It is argued that these arguments move partly at a too deep level and are in part too individualistic and psychological to sufficiently counter the liberal position that he sets out to criticize. This is also due to limitations that prevent discourse ethics from connecting effectively to the moral and political domains, e.g., through a discussion of justice. In spite of these weaknesses, Habermas’s thesis is of major relevance and brings up neglected issues in the discussion about eugenic reproductive practices. This relevance has not been duly recognized in bioethics, largely because of the depth of his speculations of philosophical anthropology. It is argued that Habermas’s notion of the colonization of the lifeworld could provide the analytical tool needed to build that bridge to the moral and political domain.