ABSTRACT A major moral problem in relation to the deCODE genetics database project in Iceland is that the heavy emphasis placed on technical security of healthcare information has precluded discussion about the issue of consent for participation in the database. On the other hand, critics who have emphasised the issue of consent have most often demanded that informed consent for participation in research be obtained. While I think that individual consent is of major significance, I argue that this demand for (...) informed consent is neither suitable nor desirable in this case. I distinguish between three aspects of the database and show that different types of consent are appropriate for each. In particular, I describe the idea of a written authorisation based on general information about the database as an alternative to informed consent and presumed consent in database research. (shrink)

Abstract: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 Häyry’s 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 Hedgecoe’s argument that critical bioethics needs four elements: to be empirically rooted, theory challenging, reflexive, and politely skeptical. (shrink)

This paper defends human dignity in two ways. First, by confronting the criticism that human dignity does not serve an important function in contemporary moral discourse and that its function can be sufficiently performed by other moral terms. It is argued that this criticism invites a danger of moral reductionism, which impoverishes moral discourse. The authority of moral philosophy to correct widely shared moral intuitions, rooted in experiences of grave injustices and wrongs, is questioned. Secondly, dignity is defended by showing (...) what is needed to uphold it, both in theory and practice. It is argued, and demonstrated through examples, that human dignity as a universal value ascribed to human beings and the virtue of dignified action are intimately related. This is fleshed out in terms of Kant’s analysis of respect in the practical sense and of virtue as a commitment to the value of dignity as a constitutive end of our moral order. It is furthermore argued that theoretical attempts to ground respect for dignity in human capacities lead to a moral impasse. It is necessary to act as if every human being is worthy of respect. This practical approach requires institutions and specified moral obligations that are integral to the democratic ethos and the rule of law, which guarantees the equal status of human beings. This practical task requires that we consistently tease out and act on the implications of these principles rather than seek deeper justification for the equal worth of humans, articulated in the term human dignity. (shrink)

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. (shrink)

It is argued that the ethical questions and challenges raised by the project of personalizing medicine are not sufficiently addressed without considering the possible effects thereof on our system of healthcare. I argue that the framing of ethical issues in light of the main principles of bioethics, such as autonomy, welfare and even justice, tends to be too narrow and the larger social implications thus tend to be neglected. Among the possible unintended consequences of the project to increase personal responsibility (...) for health is a reduced emphasis on it’s social determinants, for which we are jointly responsible.This presents important challenges for bioethics, and calls in turn for closer attention to be paid to biopolitics and the social context of bioethical discourse. The conclusion is that the benefits or damage that might result from personalizing medicine will depend no less upon political and policy decisions than on pharmacogenomic developments. (shrink)

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. (shrink)

In his seminal work, Truth and Method, theGerman philosopher Hans-Georg Gadamer distinguishesbetween three types of what he calls the experience ofthe `Thou'. In this paper, Gadamer's analysis of thisexperience is explained in terms of his philosophicalhermeneutics and brought to bear upon thepatient-professional relationship. It is argued thatwhile Gadamer's analysis implies fruitful insights fora dialogical account of the patient-professionalinteraction, it harbours elements which are conduciveto paternalistic practice of medicine. The strongattribution of value to tradition and the respect forauthority emphasized in his (...) theory result in a lack ofsensitivity for individual self-determination which isneeded for a successful account of thepatient-professional relationship. (shrink)

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” 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”. (shrink)

edited by Tuija Takala and Matti Häyry, 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 people's 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 [email protected]. (shrink)

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.

In this paper, I discuss how a Working group on ethics dealt with the question whether the collapse of the Icelandic banks and related financial setbacks can to some extent be explained by morality and work practice. I describe how the Working group delineated its subject matter by evaluating practice in the financial sector, the administration, the political sector and the social or cultural sector. I demonstrate the approach used by the Working group by discussing some important examples which throw (...) light on some aspects of its manifold analyses. The examples show how different aspects of morality are of importance in an analysis of the events that took place. (shrink)

In recent years, the development in bioethics has increasingly been toward empirical research. Much less attention has been paid to the question about the theoretical frameworks on which bioethics should be based.

This study attempts to situate ethical discourse within descriptions of a moral context which do justice both to concrete individual moral experiences and to the socio-historical framework within which they are lived. In light of these descriptions it is argued that an adequate theory of morality must focus on the essential continuity between the individual moral life and the communal practices and institutions which constitute our ethical substance. ;In Chapter One it is shown how the existentialist liberation of the moral (...) subject centers ethical concerns around the concrete living individual, who, for the most part, had no place in traditional ethics. ;In Chapter Two it is argued that the existentialist revolt in morals is incomplete and misguided, insofar as the power of individual freedom is overemphasized and the weight of socio-historical reality is neglected. On the basis of hermeneutical analysis of human existence, it is shown how the cultural fabric of interpretations and practices sustains and gives meaning to the moral life. On the basis of Sartre's Marxism, it is shown how the social field of classes and violence alienates and frustrates our individual moral projects. ;In Chapter Three it is asked what implications for ethical theory and conduct emerge from these descriptions of the moral context. It is argued that while Heidegger's thought provides an important criticism of the history of ethics, it escapes all concrete applications to ethical discourse. In this respect Gadamer's hermeneutics is found more fruitful, although his Aristotelian account of the situated moral life underestimates the ideological distortions of the moral context as well as the power of moral consciousness to reject tradition and project its freedom. In order to abet such a critical account of morality, Habermas' analysis of the moral consciousness and its development within the socialization process is introduced. But it is argued that Habermas' emphasis on a theoretical grounding of ethical discourse loses touch with the concrete existential/historical dimension of the moral life. It is proposed that only by moving out from descriptions of individual experiences of injustices and wrongs will it be possible to successfully combine moral and social considerations in a critical theory with practical intent. (shrink)

A hallmark of good antenatal care is to respect prospective parent’s choices and provide information in a way that encourages their autonomy and informed decision making. In this paper, we analyse the meaning of autonomous and informed decision making from the theoretical perspective and attempt to show how those concepts are described among prospective parents in early pregnancy and in the public media in a society where NT screening is almost a norm. We use interviews with Icelandic prospective parents in (...) early pregnancy (N = 40) and material covering the discourse around prenatal screening in the media over 5 years period. Our analysis indicates that both prospective parents and the public media include ethical terms in their rhetoric around prenatal screening although those concepts differ in their expression. We conclude that the context in which these decisions are taken does not encourage moral reflection. Prospective parents describe that there is a lack of dialogue with professionals when decisions are made about screening. With routine offer of screening the conceptualization of bioethical concepts finds its own way through a mainstream discourse which has limited connections to the theoretical notions. This has been neglected in the implementation of screening, as limited effort has been subject to audit with reference to explore how the offer of screening and informed choice is experienced among prospective parents. (shrink)

In the present paper, we focus on the role that the concept of geneticization has played in the discussion about health care, bioethics and society. The concept is discussed and examples from the evolving discourse about geneticization are critically analyzed. The relationship between geneticization, medicalization and biomedicalization is described, emphasizing how debates about the latter concepts can inspire future research on geneticization. It is shown how recurrent themes from the media coverage of genetics portray typical traits of geneticization and thus (...) contribute to the process. We look at examples of small-scale studies from the literature where geneticization of medical practice has been demonstrated. Methodological disputes about the relevance of empirical evidence for the geneticization thesis and the normative status of the concept are discussed. We consider arguments to the effect that ideas from mainstream bioethics have facilitated geneticization by emphasizing individualistic notions of autonomy and responsibility while ignoring the role of genetics in the wider social context. It is shown how a concept like geneticization, which can be used to draw the attention of philosophers, social scientists and others to challenges that tend to be neglected by mainstream bioethics, also has the potential to move people’s attention away from other pertinent issues. This may happen if researchers become preoccupied with the transformative effects of genetics, and we argue that a wider reading of geneticization should inspire critical analysis of the sociocultural preconditions under which genetics is currently evolving. (shrink)