Prematurely born children who have underdeveloped lungs may suffer a potentially fatal condition called respiratory distress syndrome. A U.S. company developed a drug, called Surfaxin, to treat such poorly functioning lungs. A placebo-controlled study was planned in four Latin American countries. At the time, in 2001, four treatments were already on the market, although not available to the research populations used in the study. This case is usually discussed as part of the standard of care debate or offered as an (...) example of exploitation. However, what concerns us in this case is rather the choice given to the parents of a prematurely born child under these circumstances: “You can give consent for your child's participation in this study. Half of the babies enrolled will receive sham air and are as likely to die as if they had not enrolled. The other half will receive an active treatment and are more likely to survive.” The parents can vastly increase their baby's chances of survival by participating in the study. Can the consent be voluntary? Do the parents have any meaningful choice? (shrink)

Brain research in neuroscience and related fields is changing our understanding of the brain and its relation to the mind and to human behavior, giving a new impetus to the problem of free will and moral responsibility. The reactions have covered the entire range, from claims to the effect that neuroscientific research is showing that our folkrnason, Ph.D., is Postdoctoral Research Fellow at the Department of Social and Moral Philosophy, University of Helsinki, Finland. His research interests include bioethics, neuroethics, and (...) the philosophy of science. He coedited The Ethics and Governance of Human Genetic Databases and Blood and Data: Ethical, Legal and Social Aspects of Human Genetic Databases.FootnotesThe research for this paper was conducted as a part of Neuroscience and Norms: Ethical and Legal Aspects of Norms in Neuroimaging / Ethical Concepts and Norms, a project funded by the Academy of Finland. (shrink)

The ethics of using nonhuman animals in biomedical research is usually seen as a subfield of animal ethics. In recent years, however, the ethics of animal research has increasingly become a subfield within research ethics under the term “animal research ethics”. Consequently, ethical issues have become prominent that are familiar in the context of human research ethics, such as autonomy or self-determination, harms and benefits, justice, and vulnerability. After a brief overview of the development of the field and a discussion (...) of relevant theoretical ethical frameworks, I consider two of these issues, namely autonomy and self-determination on the one hand, and harms and benefits on the other hand. My concern is with philosophical and ethical issues, rather than animal research oversight. I focus my discussion on nonhuman primates, as the most plausible nonhuman candidates for this approach. I conclude that the approach, although promising, depends strongly on the moral status of nonhuman research subjects. (shrink)

One of the most controversial areas of animal research is the use of nonhuman primates for fundamental research. At the centre of the controversy is the question of whether the benefits of research outweigh the harms. We argue that the evaluation of harms and benefits is highly problematic. We describe some common procedures in neurological research using nonhuman primates and the difficulties in evaluating the harm involved. Even if the harm could be quantified, it is unlikely that it could be (...) meaningfully aggregated over different procedures, let alone different animals. A similar problem arises for evaluating benefits. It is not clear how benefits could be quantified, and even if they could be, values for different aspects of expected benefits cannot be simply added up. Sorting harms and benefits in three or four categories cannot avoid the charge of arbitrariness and runs the risk of imposing its structure on the moral decision. The metaphor of weighing or balancing harms and benefits is inappropriate for the moral decision about whether to use nonhuman primates for research. Arguing that the harms and benefits in this context are incommensurable, we suggest describing the moral consideration of harms and benefits as a coherent trade-off. Such a decision does not require commensurability. It must be well-informed about the suffering involved and the potential benefits, it must be consistent with the legal, regulatory and institutional framework within which it is made, and it must cohere with other judgments in relevant areas. (shrink)

The Weatherall report on the use of non-human primates in research was published in 2006. Its main conclusion was that there is a strong scientific case for the use of non-human primates in some cases, but the report stressed the importance of evaluating each case in the light of the availability of alternatives. In addition to arguing for the scientific necessity of using non-human primates in research, the report also provided an ethical justification. As could be expected, the report was (...) harshly criticised by animal rights groups, but in the academic literature, only two critical replies appeared. In what follows, I will describe the ethical justification for non-human primate research as it is laid out in the Weatherall report and then consider the criticism in the academic literature. I conclude that the report’s ethical justification for the use of non-human primates in research, in particular in basic neuroscientific research, has not been convincingly challenged by its critics. Since the criticism of the report is limited and represents only a small part of the academic discussion about the use of non-human primates in research, and a still smaller part of the ethical discussion about animal research, it is important that the discussion continue both at the academic and social level. (shrink)

Volume 19, Issue 6, June 2019, Page 32-34.

In Jane Austen's Mansfield Park, Fanny, an 18-year-old orphan who lives with her aunt Lady Bertram, received an attractive offer of marriage, which she vehemently rejected and is not prepared to reconsider.

Following the Second Summit on Human Gene Editing in Hong Kong in 2018, where the birth of two girls with germline genome editing was revealed, the need for a responsible pathway to the clinical application of human germline genome editing has been repeatedly emphasised. This paper aims to contribute to the ongoing discussion on research ethics issues in germline genome editing by exploring key issues related to the initial applications of CRISPR in reproductive medicine. Following an overview of the current (...) discussion on bringing germline genome editing into clinical practice, we outline the specific challenges associated with such interventions and the features that distinguish them from conventional clinical testing of new medical treatments. We then review proposed ethical requirements for initial heritable genome editing, such as the absence of reasonable alternatives, the existence of sufficient and reliable preclinical data, appropriate informed consent, requirements related to safety, and long-term follow-up. (shrink)

About ten years ago, reports of lab-grown “mini brains” or “brains in a dish” appeared in the media, falling somewhere between the curious and the alarming. The trigger of these reports was a new method to grow three-dimensional neural tissue from human stem cells that recapitulates, to some degree, the early development of brain tissue. Despite their relatively small size and other limitations, such model systems capture in part the structure and functions of regions of the human brain and can (...) also be combined to form so-called assembloids. (shrink)

In her reply to my critical assessment of objections to the Weatherall report’s justification of non-human primate research, Catia Faria focuses on three objections which she entitles ‘the disanalogy’, ‘the utilitarian calculus’ and ‘species overlap’. Faria finds my assessment unconvincing, butI argue that the objections still fail.

The Weatherall Report claims that research on non-human primates is permitted and morally required. The argument rests on the following thought experiment: > The hospital fire : A hospital is on fire. Some of the residents are humans and others are non-human animals. You can only save one group. What do you do? Some people have the intuition that we should rescue the humans. According to the report, if we accept that human lives have priority over non-human lives in this (...) case, consistency requires us to support the use of non-human animals in research. This is because both cases are about saving human lives at the expense of the lives of non-human animals. Two critical replies appeared in the literature, by E J Moore1 and Muireann Quigley.2 In a recent paper3 Gardar Arnason claims that such objections fail. I will argue, however, that his assessment is unconvincing. The first objection pressed by Moore is that there are fundamental disanalogies between The hospital fire and biomedical research. In that scenario we face a life-or-death emergency situation whereas in biomedical research we do not. In such situations it may be justified to prioritise those closest to us (eg, species …. (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)

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)

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)

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)

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)

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)

This piece outlines concrete cases of benefit sharing that occur in relation to the sharing of human (biological) samples. For example, it surveys Indonesia’s decision, in 2006, to stop sharing virus samples of H5N1 (avian influenza) with the WHO Global Influenza Surveillance Network (GISN). It also outlines some of the ethical issues that arise in these cases.

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)

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)

This paper discusses the formation of Castoriadis’s concept of imaginary significations and relates it to his changing readings of Marx and Weber. Castoriadis’s reflections on modern capitalism took off from the Marxian understanding of its internal contradictions, but he always had reservations about the orthodox version of this idea. His writings in the late 1950s, already critical of basic assumptions in Marx’s work, located the central contradiction in the very relationship between capital and wage labour. Labour power was not simply (...) transformed into a commodity, as Marx had argued; rather, the instituted attempt to treat it as a commodity was a contradiction in itself, between the subjectivity and the objectification of labour. Castoriadis then moved on to link this claim to Weber’s analysis of the interconnections between capitalism and bureaucracy. The main contradiction of modern capitalism, whether wholly bureaucratised as in the Soviet model or increasingly bureaucratised as in the West, now seemed to be a matter of incompatible systemic imperatives: the need to control and to mobilise the workforce. Finally, difficulties with this model – and with the revolutionary expectations based on it – led to a more decisive break with classical theories and to the formulation of a bipolar image of modernity, where the vision of an autonomous society is opposed to the logic of calculation and domination, embodied in capitalist development. On both sides there is an imaginary component, irreducible to empirical givens or systemic principles. In this regard, Castoriadis remained closer to Weber than to Marx, but he also anticipated, in a distinctive way, later emphasis on the cultural dimension of modernity, and more specifi cally the notion of modernity as a new civilisation. (shrink)

This important new book by a major voice in the Social Imaginaries movement offers the most systematic attempt to establish conceptual and historical links between the idea of modernity as a new civilization and the notion of multiple modernities. Arnason demonstrates a theory of globalization that is still compatible with the emphasis on unity and diversity of modernity as a civilization.

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)