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)

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...

Climate change is an existential risk reinforced by ordinary actions in afuent societies—often silently present in comfortable and enjoyable habits. This silence is sometimes broken, presenting itself as a nagging reminder of how our habits fuel a catastrophe. As a case in point, global warming has created a state of urgency among wine makers in Spain, as the alcohol level has risen to a point where it jeopardises wine quality and thereby Spanish viticulture. Eforts are currently being made to solve (...) this problem technologically by developing (non-GMO) strains of yeast that produce less alcohol. If successful, this could help save Spanish viticulture. This kind of technological solution is routinely criticised for ofering simplistic “techno-fx” solutions to solve complex societal problems. However, it is not clear what features are criticised by the notion of techno-fx and hence how to avoid this criticism. In our interpretation, the techno-fx notion is not exclusively used as a dismissive term. The notion points to a general virtue of engineering: to create technological solutions that work silently in the background. This asset of technological solutions might sometimes be problematic and sometimes not. Hence, it needs to be analysed case-by-case by paying attention to the moral relevance of the hidden implications of the technology and of the unrefective actions and habits that they facilitate. Such moral analysis will in turn inform strategies for foregrounding this technology to counteract silencing. We discuss what this means in the case of modifying yeast as a viticultural climate resilience strategy. (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)

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

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)

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)

Background Neonatologists, legal experts and ethicists extensively discuss the ethical challenges of decision-making when a child is born at the limit of viability. The voices of parents are less heard in this discussion. In Norway, parents are actively shielded from the burden of decision-making responsibility. In an era of increasing patient autonomy, is this position still defendable? Research question In this article, we discuss the role of parents in neonatal decision-making, based on the following research question: Should parents decide whether (...) to provide lifesaving treatment when their child is born at the limit of viability? Research design We conducted eight interviews with 12 parents, 4 individuals and 4 couples, all having experienced prenatal counselling at the limit of viability. The interviews took place at different university locations in Norway in the years 2014–2018. Ethical considerations All study participants gave their written informed consent. The Regional Committee for Medical Research Ethics approved the study. Findings We identified six main themes in parents’ responses to the research question. Parents (1) experienced an emotional turmoil confronted with birth at the border of viability, (2) emphasized the importance of being involved in decision-making, (3) described and reflected on the need to balance the parental instinct of saving, (4) were concerned about the dilemmas involved in protecting the family, (5) were worried about the burden of overwhelming responsibility and (6) called for guideline relief. Conclusion The perceived parental instinct of saving the life of their child makes it hard for parents to step away from a call for ‘everything to be done’. Involvement of an interprofessional periviability team drawing on the experiences and viewpoints of nurses and neonatologists in decision-making is needed to protect both infants and parents against undue parental push for treatment and enable parents to make good decisions regarding their child. (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)

In this chapter, we analyse the debate around the implementation of responsible research and innovation (RRI) in Higher Education, Funding and Research Centres (HEFRCs). We will illustrate some proposals about how to implement RRI in HERFCs in a good way. Open and inclusive governance is key to fruitful implementation of RRI in these organizations. Governance in this context refers to ways of steering processes in a desirable direction, in this case in the direction of responsible research and innovation that is (...) ethically acceptable and socially desirable. We will present and assess different models of governance and aim to provide ethical governance of research and innovation (R&I) inspired by the most convincing ideas emerged in the current debate. (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)

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)

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)

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)

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)

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.