A research biobank is a collection of personal health and lifestyle information, including genetic samples of yet unknown but possibly large information potential about the participant. For the participants, the risk of taking part is not bodily harm but infringements of their privacy and the harmful consequences such infringements might have. But what do we mean by privacy? Which harms are we talking about? To address such questions we need to get a grip on what privacy is all about and (...) aim for a fruitful perspective on the issues of property and privacy rights in the context of biobanking. This paper argues that the limits and handling of private matters is determined in specific social relations. The crucial point is thus to determine which information and activities are or are not the legitimate concern of others. Privacy and property rights should be seen as balanced by duties, that is as inherently relational interests extending into the public sphere, rather than to see these rights as the control of an object—for instance the participant’s biobank material. (shrink)

Withholding and withdrawing treatment are widely regarded as ethically equivalent in medical guidelines and ethics literature. Health care personnel, however, widely perceive moral differences between withholding and withdrawing. The proponents of equivalence argue that any perceived difference can be explained in terms of cognitive biases and flawed reasoning. Thus, policymakers should clear away any resistance to accept the equivalence stance by moral education. To embark on such a campaign of changing attitudes, we need to be convinced that the ethical analysis (...) is correct. Is it? In this article, I take a closer look at the moral relation between withholding and withdrawing. My conclusion is that withholding and withdrawing are not in general ethically equivalent. Thus, medical guidelines should be rewritten, and rather than being “educated” away from their sound judgments, medical professionals and patients should have nuanced medico-ethical discussions regarding withholding and withdrawing treatment. (shrink)

Two ways of understanding the notion of autonomy are outlined and discussed in this article, in order to clarify how and if informed consent requirements in biotechnological research are to be justified by the promotion of personal autonomy: A proceduralist conception linking autonomy with authenticity, and a substantivist conception linking autonomy with control. The importance of distinguishing autonomy from liberty is emphasised, which opens for a possible conflict between respecting the freedom and the autonomy of research participants. It is argued (...) that this has implications for how consent requirements based on different criteria of specificity and understanding should be viewed and justified. (shrink)

Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support int...

Volume 19, Issue 5, May 2019, Page 31-33.

What is privacy? What does privacy mean in relation to biobanking, in what way do the participants have an interest in privacy, (why) is there a right to privacy, and how should the privacy issue be regulated when it comes to biobank research? A relational view of privacy is argued for in this article, which takes as its basis a general discussion of several concepts of privacy and attempts at grounding privacy rights. In promoting and protecting the rights that participants (...) in biobank research might have to privacy, it is argued that their interests should be related to the specific context of the provision and reception of health care that participation in biobank research is connected with. Rather than just granting participants an exclusive right to or ownership of their health information, which must be waived in order to make biobank research possible, the privacy aspect of health information should be viewed in light of the moral rights and duties that accompany any involvement in a research based system of health services. (shrink)

Why do some people withdraw from biobank studies? To our knowledge, very few studies have been done on the reflections of biobank ex-participants. In this article, we report from such a study. 16 years ago, we did focus group interviews with biobank participants and ex-participants. We found that the two groups interestingly shared worries concerning the risks involved in possible novel uses of their biobank material, even though they drew opposite conclusions from their worries. Revisiting these interviews today reveals a (...) remarkable relevance to present concerns, since the possible developments that worried ex-participants and participants 16 years ago now are becoming realities. Drawing on conceptual distinctions by sociologist and philosopher Niklas Luhmann, we argue that while ex-participants express a loss of trust in the biobank institution to manage the use of their biobank material in a legitimate way, remaining participants expressed confidence in the management of the biobank institution to secure their interests. This analysis brings out important aspects of emerging trends in biobank research participation. (shrink)

Volume 19, Issue 6, June 2019, Page W5-W9.

Respecting people’s consent choices for use of their material and data is a cornerstone of biobank ethics. Participation in biobanks is characteristically based on broad consent that presupposes an ongoing possibility of informing and interacting with participants over time. The death of a participant means the end of any interaction, but usually not the end of participation. Research on causes of death makes biobank material from deceased participants extremely valuable. But as new research questions and methods develop over time, the (...) question arises whether stored biobank material from deceased persons still can be used on the basis of their broad consent. In this paper, we discuss policies for postmortem use of biobank material, including consent options, proxy consent and criteria for limitation of types of use and duration of storage. We conclude that the interests of participants in biobank research are best served by asking at enrolment if and how the biobank material may be used after death. We state that the use of biobank material from deceased participants should be delimited both by their consent and by the prevailing broad consent choices of living participants.Biobanks also need to inform participants at enrolment about the duration of storage of biobank material or at minimum have procedures for deciding how long material will be stored for and for which purpose. For older collections, in the absence of such information or consent options, relevant authorities should decide. (shrink)

Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial gain”. Similarly, (...) Norwegian legislation reads: “Commercial exploitation of research participants, human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing. (shrink)

In a world where issues of food safety and food security are increasingly important, the social responsibility of central actors in the food chain—producers and the main grocery chains—becomes more pressing. As a response, these actors move from implicitly assuming social responsibilities implied in laws, regulations and ethical customs, towards explicitly expressing social responsibilities. In this paper, we discuss the ethical values relevant for the social responsibility of central food producers and retailers in Norway, one of the most subsidized and (...) protected areas of food production in the world. How do the actors perceive and express their social responsibility, and—given their position in the local, national and global market—how should they handle these responsibilities? We analyze Tine and Nortura, two producers owned by farmer cooperatives with market regulator function, as well as Coop—a dominant grocery chain in Norway, with basis in the same public ownership model as the farmer-owned cooperative producers. While the complex roles of these key actors in the Norwegian food market have been criticized from several angles, we argue that these multifaceted roles put them in a good position to promote informed consumer choices in a globalized market. (shrink)

Rosamond Rhodes and John Harris have both recently argued that we all have a general moral duty to participate in medical research. However, neither Rhodes' nor Harris' arguments in support of this obligation stand up to scrutiny, and severe and convincing criticism has been levelled against their case. Still, to refute their arguments is not to refute the conclusion. There seems to be some truth in the view that when people are asked to take part in medical research, their choice (...) is not completely morally neutral. In this article, we argue that the proper question to ask is when, rather than if, a certain moral duty to volunteer for medical research can be appealed to. To answer this question, we need a denser description of relevant research projects and their context rather than just describing medical research in general. Drawing on our study of participants in the Norwegian HUNT biobank, we use the normative implications of the Norwegian concept «dugnad» as an analogy to discuss the requirement of providing neutral information to potential biobank participants in order to promote their free and informed decision as to whether or not to take part. We suggest that normative recruitment is not just a question of principles and ethics. It is also a question of research design and the creation of the common good in the community where the research takes place. (shrink)

This special issue of Etikk i praksis features papers that articulate and discuss approaches and methodology that seek to make normative research activity and research output productive in contexts of ongoing societal and technological decision-making. The articles in various ways and to a varying degree exemplify and reflect on the methodology of the study of normativity in innovation.

The worldwide decline in bees and other pollinating insects is a threat to biodiversity and food security, and urgent action must be taken to stop and then reverse this decline. An established cause of the insect decline is the use of harmful pesticides in agriculture. This case study focuses on the use of pesticides in Norwegian apple production and considers who among farmers, consumers and public authorities is most responsible for protecting bees against harmful pesticides. The extent to which these (...) three different groups consider themselves responsible and the degree to which they are trusted by each of the other groups are also studied. This empirical study involves both qualitative interviews with Norwegian apple farmers, consumers and public authorities and survey data from consumers and farmers. The results show that consumers consider public authorities and farmers equally responsible for protecting bees, while farmers are inclined to consider themselves more responsible. Farmers, consumers and public authorities do not consider consumers significantly responsible for protecting bees, and consumers have a high level of trust in both farmers and public authorities regarding this matter. This study also finds that a low level of consumer trust in farmers or public authorities increases consumers’ propensity to purchase organic food, suggesting that those who do not trust that enough action is adopted to protect the environment take on more individual responsibility. This paper adds to the existing literature concerning the allocation of responsibility for environmental outcomes, with empirical evidence focusing specifically on pesticides and bees. (shrink)

The aim of this article is to contribute to responsible innovation by developing a conceptual framework for the processes of creativity and innovation. The hypothesis is that creative and innovative processes are similar in that both are affective in nature. I develop this conceptual framework through an interpretation of the insights of Henri Poincaré’s notion of the ‘four stages’ in the creative process and Joseph Schumpeter’s notion of the entrepreneur. Building on this framework, I analyze the creative and innovative practices (...) of the film director Lars von Trier and the entrepreneur Steve Jobs. The interpretation and analysis suggest that the processes of creativity and innovation are similar in nature in that both are based on the moods of disturbance and enthusiasm; but that they differ in that creativity is based on the feelings of interest and irritation, whereas innovation is based on the feelings of desire and anger. In the conclusion I discuss the implications of this for responsible innovation with regard to the social aspect of resistance towards innovation and the ethical aspects of anger in entrepreneurial leadership. (shrink)

In the context of discussions about the nature of ‘identical particles’ and the status of Leibniz’s Principle of the Identity of Indiscernibles in Quantum Mechanics, a novel kind of physical discernibility has recently been proposed, which we call witness-discernibility. We inquire into how witness-discernibility relates to known kinds of discernibility. Our conclusion will be that for a wide variety of cases, including the intended quantum-mechanical ones, witness-discernibility collapses extensionally to absolute discernibility, that is, to discernibility by properties.

In this article, I respond to David McIvor’s and Lars Rensmann’s discussion of my recent book, The Politics of Repressed Guilt: The Tragedy of Austrian Silence (2018, Edinburgh University Press). Both invited me to clarify my use of Arendt in my conception of embodied reflective judgment. I argue for a stronger connection between judgment and emotions than Arendt because one can effectively shut down critical thinking if one uses defense mechanisms to repress feelings of guilt. In response to McIvor, (...) I discuss the idea of the “subject-in-outline” and “embodied reflective spaces” to overcome the guilt/defense complex to engender a reparative politics of justice. Finally, in response to Rensmann, I point out that the lingering culture of repressed guilt helps us explain the general conditions that contributed to the rise of the far and extremist right in Austria, which I develop further in my new book Analyzing the Far Right. (shrink)

When people deny that there are objects of a certain kind, they normally take this to be a reason to stop speaking as if such objects existed. For instance, when atheists deny the existence of God, they take this to be a reason to stop speaking about God’s will or His mercy. Or, to take a more mundane example, when people deny that there are round squares or that there are unicorns, they take this to be a reason to stop (...) speaking as if rounds squares or unicorns existed. (shrink)

Is the natural number 3 identical with the Roman emperor Julius Caesar? In Grundlagen Frege raised some peculiar questions of this sort.1 There are two kinds of intuitions regarding such questions. On the one hand, these questions seem not only to be pointless but to be downright meaningless. Regardless of how much arithmetic one studies, no answer to the opening question will be forthcoming. Arithmetic tells us that 3 is the successor of 2 and that it is prime, but not (...) whether it is identical with Caesar. So questions concerning the identity of numbers and people seem not to be provided for. On the other hand, it seems that the opening question must be answered negatively. For numbers are not the sorts of things that can be identical with people. In fact, since the number 3 is an abstract object and Caesar is not, it follows by Leibniz’s law that they are not identical. (shrink)

My thesis discusses the unique challenge that platonistic mathematics poses to philosophical naturalism. It has two main parts. ;The first part discusses the three most important approaches to my problem found in the literature: First, W. V. Quine's holistic empiricist defense of mathematical platonism; then, the nominalists' argument that mathematical platonism is naturalistically unacceptable; and finally, a radical form of naturalism, due to John Burgess and Penelope Maddy, which dismisses any philosophical criticism of a successful science such as mathematics. I (...) find faults with all of these approaches. ;The second part attempts to do better. First, I develop an improved epistemological challenge to mathematical platonism. Roughly, this challenge asks for an account of what mathematicians' justification for believing in platonistic mathematics consists in. I argue this challenge is immune to the criticism I leveled against the traditional challenges. To show that it has bite, I apply this challenge to Quine's philosophy of mathematics. I argue this shows that Quine must invoke, in addition to his confirmational holism, a semantic indeterminacy thesis that is so radical as to be implausible. Finally, I attempt to develop a better response to the improved challenge. I defend an unorthodox view of the concept of an object and argue this makes room for a neo-Dedekindian view of mathematical objects which identifies mathematical existence with the logical coherence of the theory describing the structure in question. This view transforms metaphysical and epistemological questions about mathematical objects into corresponding, but more tractable questions about the logical notion of coherence. (shrink)

In this book Lars Svendsen examines the nature of boredom, how it originated, its history, how and why it afflicts us, and why we cannot seem to overcome it by any act of will.

Background: Smart sensors have been developed as diagnostic tools for rehabilitation to cover an increasing number of geriatric patients. They promise to enable an objective assessment of complex movement patterns. -/- Objective: This research aimed to identify and analyze the conflicting ethical values associated with smart sensors in geriatric rehabilitation and provide ethical guidance on the best use of smart sensors to all stakeholders, including technology developers, health professionals, patients, and health authorities. -/- Methods: On the basis of a systematic (...) literature search of the scientific databases PubMed and ScienceDirect, we conducted a qualitative document analysis to identify evidence-based practical implications of ethical relevance. We included 33 articles in the analysis. The practical implications were extracted inductively. Finally, we carried out an ethical analysis based on the 4 principles of biomedical ethics: autonomy, beneficence, nonmaleficence, and justice. The results are reported in categories based on these 4 principles. -/- Results: We identified 8 conflicting aims for using smart sensors. Gains in autonomy come at the cost of patient privacy. Smart sensors at home increase the independence of patients but may reduce social interactions. Independent measurements performed by patients may result in lower diagnostic accuracy. Although smart sensors could provide cost-effective and high-quality diagnostics for most patients, minorities could end up with suboptimal treatment owing to their underrepresentation in training data and studies. This could lead to algorithmic biases that would not be recognized by medical professionals when treating patients. -/- Conclusions: The application of smart sensors has the potential to improve the rehabilitation of geriatric patients in several ways. It is important that patients do not have to choose between autonomy and privacy and are well informed about the insights that can be gained from the data. Smart sensors should support and not replace interactions with medical professionals. Patients and medical professionals should be educated about the correct application and the limitations of smart sensors. Smart sensors should include an adequate representation of minorities in their training data and should be covered by health insurance to guarantee fair access. (shrink)

Recent years have witnessed intensive efforts to specify which requirements ethical artificial intelligence (AI) must meet. General guidelines for ethical AI consider a varying number of principles important. A frequent novel element in these guidelines, that we have bundled together under the term explicability, aims to reduce the black-box character of machine learning algorithms. The centrality of this element invites reflection on the conceptual relation between explicability and the four bioethical principles. This is important because the application of general ethical (...) frameworks to clinical decision-making entails conceptual questions: Is explicability a free-standing principle? Is it already covered by the well-established four bioethical principles? Or is it an independent value that needs to be recognized as such in medical practice? We discuss these questions in a conceptual-ethical analysis, which builds upon the findings of an empirical document analysis. On the example of the medical specialty of radiology, we analyze the position of radiological associations on the ethical use of medical AI. We address three questions: Are there references to explicability or a similar concept? What are the reasons for such inclusion? Which ethical concepts are referred to? (shrink)

This article is a response to Thomas David Riisfeldt’s paper entitled ‘Weakening the ethical distinction between euthanasia, palliative opioid use and palliative sedation’. It is shown that as far as euthanasia and palliative sedation are concerned, Riisfeldt has not established that a common ground, or a similarity, between the two is the relief of suffering. Quite the contrary, this is not characteristic of euthanasia, neither by definition nor from a clinical point of view. Hence, the argument hinges on a conceptually (...) and empirically erroneous premise and is accordingly a non-starter. (shrink)

The so-called “empirical turn” in bioethics gave rise to extensive theoretical and methodological debates and has significantly shaped the research landscape from two decades ago until the present day. Attentive observers of the evolution of the bioethical research field now notice a new trend towards the inclusion of data science methods for the treatment of ethical research questions. This new research domain of “digital bioethics” encompasses both studies replacing (or complementing) socio-empirical research on bioethical topics (“empirical digital bioethics”) and argumentative (...) approaches towards normative questions in the healthcare domain (“argumentative digital bioethics”). This article draws on insights taken from the debate on the “empirical turn” for sounding out perspectives for the newly developing field of “digital bioethics.” We particularly discuss the disciplinary boundaries, chances and challenges, and potentially undesirable developments of the research field. The article closes with concrete suggestions on which debates need to be initiated and which measures need to be taken so that the path forward of “digital bioethics” will be a scientific success. (shrink)

In patient centred care, shared decision making is a central feature and widely referred to as a norm for patient centred medical consultation. However, it is far from clear how to distinguish SDM from standard models and ideals for medical decision making, such as paternalism and patient choice, and e.g., whether paternalism and patient choice can involve a greater degree of the sort of sharing involved in SDM and still retain their essential features. In the article, different versions of SDM (...) are explored, versions compatible with paternalism and patient choice as well as versions that go beyond these traditional decision making models. Whenever SDM is discussed or introduced it is of importance to be clear over which of these different versions are being pursued, since they connect to basic values and ideals of health care in different ways. It is further argued that we have reason to pursue versions of SDM involving, what is called, a high level dynamics in medical decision-making. This leaves four alternative models to choose between depending on how we balance between the values of patient best interest, patient autonomy, and an effective decision in terms of patient compliance or adherence: Shared Rational Deliberative Patient Choice, Shared Rational Deliberative Paternalism, Shared Rational Deliberative Joint Decision, and Professionally Driven Best Interest Compromise. In relation to these models it is argued that we ideally should use the Shared Rational Deliberative Joint Decision model. However, when the patient and professional fail to reach consensus we will have reason to pursue the Professionally Driven Best Interest Compromise model since this will best harmonise between the different values at stake: patient best interest, patient autonomy, patient adherence and a continued care relationship. (shrink)

This study examined the influence of two organizational context variables, codes of conduct and supervisor advice, on personnel decisions in an experimental simulation. Specifically, we studied personnel evaluations and decisions in a situation where codes of conduct conflict with supervisor advice. Past studies showed that supervisors’ advice to prefer ingroup over outgroup candidates leads to discriminatory personnel selection decisions. We extended this line of research by studying how codes of conduct and code enforcement may reduce this form of discrimination. Eighty (...) German managers evaluated and selected candidates from an applicant pool including Germans (ingroup members) and foreigners (outgroup members). Supervisor advice to prefer ingroup members lowered suitability ratings of outgroup members as well as their chances to be selected for an interview. Ethical codes of conduct referring to equal opportunities limited this form of discrimination, but only when codes were enforced by sanctions and integrated into organizational every-day practice. The implications of these findings for research and practice are discussed. (shrink)