An increasing number of European research projects return, or plan to return, individual genomic research results (IRR) to participants. While data access is a data subject’s right under the General Data Protection Regulation (GDPR), and many legal and ethical guidelines allow or require participants to receive personal data generated in research, the practice of returning results is not straightforward and raises several practical and ethical issues. Existing guidelines focusing on return of IRR are mostly project-specific, only discuss which results to (...) return, or were developed outside Europe. To address this gap, we analysed existing normative documents identified online using inductive content analysis. We used this analysis to develop a checklist of steps to assist European researchers considering whether to return IRR to participants. We then sought feedback on the checklist from an interdisciplinary panel of European experts (clinicians, clinical researchers, population-based researchers, biobank managers, ethicists, lawyers and policy makers) to refine the checklist. The checklist outlines seven major components researchers should consider when determining whether, and how, to return results to adult research participants: 1) Decide which results to return; 2) Develop a plan for return of results; 3) Obtain participant informed consent; 4) Collect and analyse data; 5) Confirm results; 6) Disclose research results; 7) Follow-up and monitor. Our checklist provides a clear outline of the steps European researchers can follow to develop ethical and sustainable result return pathways within their own research projects. Further legal analysis is required to ensure this checklist complies with relevant domestic laws. (shrink)

Merold Westphal’s new publication, Kierkegaard’s Concept of Faith, gives us an opportunity to explore the many ways in which Kierkegaard has influenced Westphal’s thinking as a whole. This present contribution seeks to show how Kierkegaard helps Westphal discover a concept of faith which holds no ‘reasonable’ foundation as it is entirely dependent upon two different aspects of revelation in tension with each other. Moreover, faith is seen as a willing assent by the believer, and thus it becomes a task and (...) not merely a proposition to behold or to which one’s life conforms. In addition to explicating this notion of faith within his work, this present contribution seeks to situate this faith within Westphal’s philosophy of religion, showing how it is integral to Westphal’s entire project. (shrink)

ZusammenfassungIm Rahmen des Modellvorhabens „Patienten als Partner—Tumorpatienten und ihr Mitwirken bei medizinischen Entscheidungen“ wurden zwischen März 2002 und August 2003 272 palliativ behandelte Tumorpatienten nach ihrer Einstellung zur Patientenverfügung und zur gewünschten Beteiligung an medizinischen Entscheidungen befragt. Von den Befragten kannten 30% Patientenverfügungen nicht, darunter signifikant mehr Befragte mit formal niedrigerem Bildungsabschluss. Es hatten bereits 11% eine Patientenverfügung abgeschlossen, 22% wollten wahrscheinlich eine abschließen, und 30% wollten keine abschließen. Es fand sich ein statistisch signifikanter Zusammenhang zwischen dem Abschluss einer Patientenverfügung (...) und dem Wunsch nach mehr eigener Entscheidungsverantwortung. Die Einstellung zur Patientenverfügung und der Wunsch nach partizipativer Entscheidungsfindung stehen in keinem statistisch signifikanten Zusammenhang. Patienten mit schriftlichen Vorausverfügungen haben einen erhöhten Kommunikations- und Rückkopplungsbedarf, auf den Ärzte sensibel eingehen sollten. Bei der Information über Patientenverfügungen sollten Menschen mit niedrigerem Bildungsstand mehr als bisher berücksichtigt werden. (shrink)

–Whether celebratory or critical, STS research on science-industry relations has focused on the blurring of boundaries and hybridization of codes and practices. However, the vocabulary of boundary and hybrid tends to reify science and industry as separate in the attempt to map their relation. Drawing on interviews with the head of a research center in plant biology, this article argues that biology and biotech are symbionts. In order to be viable and productive, symbiosis needs to be carefully managed and given (...) room for divergence within mutual dependence. This process does not take place as the negotiation of a preexisting science-industry boundary. Rather, viability is obtained through a strategy of circumventing the science-industry food chain and sequestering biotech components within the research center. Symbiosis allows academic scientists to do biology while at the same time demonstrating entrepreneurial spirit. (shrink)

In this June 2004 interview, Julia Kristeva takes us through her long and extraordinary career as a writer, an intellectual, and an academic. She speaks of her early years as a radical poststructuralist, postmodern feminist, and discusses how her scope has broadened with the addition of psychoanalytical theory and practice. She answers questions about her work on the abject, melancholy, motherhood, and love, and reveals how personal experiences, like the death of her father, have shaped parts of her literary output.

The number of publications that highlight the influence of visions and futuristic narratives on the development of emerging technologies increases. Toolboxes such as “Hermeneutical Technology Assessment” and “Vision Assessment” provide methodological considerations on how to assess techno-futuristic narratives, their proponents, and their impact on technological development. Because of their contributions to the technoscientific discourse, a special responsibility for technological processes is attributed to the “visioneers” of such narratives. While such a claim naturally follows from an agential role in a process, (...) it is not clear whether visioneers should be held responsible. Some problems of this attribution will be addressed in the present paper. Particularly the following questions will be considered: Which role does autonomy play for responsibility? Is causation sufficient for the attribution of responsibility? Which role do intentions and alternatives play for the responsibility of visioneers? These questions will be discussed against the backdrop of contemporary approaches to the responsibility of visioneering and classic philosophical works in the field. Furthermore, the problem of accountability will be considered. Socio-technical systems are highly complex, which makes it hard to trace back the origins of particular developments. It will be argued that it is currently unreasonable to give visioneers the status of an important player. The article will shed light on the several dimensions of responsibility and provide a more nuanced understanding of responsibility in the context of new and emerging technologies. (shrink)

Martin Sand explores the problems of responsibility at the early, visionary stages of technological development. He discusses the increasingly dominant concept of innovation and outlines how narratives about the future are currently used to facilitate technological change, to foster networks, and to raise public awareness for innovations. This set of activities is under increasing scrutiny as a form of “visioneering”. The author discusses intentionality and freedom as important, albeit fuzzy, preconditions for being responsible. He distinguishes being from holding responsible (...) and explores this distinction’s effects on the problem of moral luck. Finally, he develops a virtue ethical framework to discuss visioneers’ and innovators’ responsibilities.​. (shrink)

Bioethics, Volume 36, Issue 2, Page 162-169, February 2022.

This article takes the stance that the subjectivity of the researcher is an integral part of the research process. It should be studied as a key to understanding the interrelational processes of meaning in an interview situation. The article demonstrates how the subjectivity of the researcher can be made accessible methodologically and methodically by combining a psychodynamic approach with an autoethnographic approach. The methodical question is therefore how the researcher can conduct introspection and at the same time reflect upon and (...) analyse the central object of investigation. The approach is psychoanalytically informed, but autoethnography became the actual vehicle for moving beyond reflections on the psychodynamics represented in the texts. The researcher ventured into an introspection of not only the texts, but also her own feelings, fantasies, and bodily experiences at the time of the interview and also when bringing the data into new situations. The abstract reflections after the interview situation were left for a while, and instead a more experiential and sensual/bodily understanding appeared, based on narratives, feelings, and reflections from the research field. In doing so, the affective and experiential personal process became an important step in the interpretation. (shrink)

We define an evolutionary process of “economic Darwinism” for playing the field, symmetric games. The process captures two forces. One is “economic selection”: if current behavior leads to payoff differences, behavior yielding lowest payoff has strictly positive probability of being replaced by an arbitrary behavior. The other is “mutation”: any behavior has at any point in time a strictly positive, very small probability of shifting to an arbitrary behavior. We show that behavior observed frequently is in accordance with “evolutionary equilibrium”, (...) a static equilibrium concept suggested in the literature. Using this result, we demonstrate that generally under positive (negative) externalities, economic Darwinism implies even more under- (over-)activity than does Nash equilibrium. (shrink)

In this June 2004 interview, Julia Kristeva takes us through her long and extraordinary career as a writer, an intellectual, and an academic. She speaks of her early years as a radical poststructuralist, postmodern feminist, and discusses how her scope has broadened with the addition of psychoanalytical theory and practice. She answers questions about her work on the abject, melancholy, motherhood, and love, and reveals how personal experiences, like the death of her father, have shaped parts of her literary output.

In lieu of an abstract, here is a brief excerpt of the content:Gaia, Gender, and Sovereignty in the AnthropoceneDanielle SandsIn a 2011 lecture addressing ecological crisis, sociologist Bruno Latour advanced James Lovelock’s Gaia model as a way of re-conceptualizing nature in an Anthropocene or “postnatural” (Latour 2011, 9) world.1 For Latour, Gaia, a mythological goddess reinvented by Lovelock as a scientific metaphor, embodies the collision between discourses, “this mix up of science and politics” (Latour 2011, 8), which the Anthropocene represents. (...) In its deviation from benevolent images of Mother Nature, Gaia provides an alternative account of the human relationship with the natural world, one that implies that our response to the Anthropocene crisis should not derive from a solely scientific framework. Latour seizes upon the image of Gaia with fervor, celebrating “her” not only as an assemblage of different discourses, but, in “her” disunity and non-sovereignty, as an alternative political paradigm. Of less political interest for Latour is the gendering of Gaia; like Lovelock before him, Latour regards the feminizing of Gaia as an affective metaphorical device and not a political issue.2It is hard not to view Latour’s “Gaia politics” (Latour 2004, 5) as part of a broader tendency to revivify conservative frameworks in the face of crisis, here a crisis of a hitherto unknown scale.3 As Claire Colebrook wryly notes of post-apocalyptic narratives: “it is easier to imagine the end of the world […] than it is to think outside the structuring fantasies of gender.” Where Latour stops short—just—of endorsing what Colebrook calls “an active male heroism driven by a female fragility that appears to hold the promise of the future” [End Page 287] (Colebrook 2014 v.2, 150), his restraint does not extend to all advocates of Gaia-led theories. Witness, for example, Eileen Crist’s feverish call to arms: “[T]his is our moment. It is the moment to face the root of the terrible trouble we have unleashed for the biosphere and for ourselves: our expansionism, arrogance, and domination within the biosphere. In acts of beauty, and without fear, this is our moment to put Gaia first” (Crist 2010, 330). In Crist’s hands, Gaia—and the Anthropocene framework that is presupposed but here disavowed—not only offers an alibi for apocalyptic language and discredited narratives, but more importantly, unwittingly endorses the very worldview—uncritical, narcissistic, and heavily gendered—that it purports to replace.4The Anthropocene compels us to question the literal and metaphorical place of the human. In projecting human maternity onto the earth, the figure of Gaia and that of Mother Earth before her restrict thought to an immobile narcissism. In this article, I shall first address the way in which a purportedly progressive feminized figure of Gaia actually absents woman, denying female agency in favor of male sovereignty. I shall frame this discussion both within ecofeminist debates and in light of recent Anthropocene rhetoric. Secondly, I shall contextualize Gaia within the broader problem of figuring the female, asking whether an Anthropocene framework necessarily inclines us toward the replication of gender stereotypes.Gendering Gaia and the Woman-Nature ConnectionA clear aim of James Lovelock’s adoption of the name Gaia as a metaphor for “the living planet” earth (Lovelock 1988, 19) was to stimulate humans to accept their previously neglected environmental responsibilities. By according Gaia an identity, one that chimed both with ancient narratives and 1970s sensibilities, Lovelock invited humans to acknowledge that there was a living victim of their environmental misdemeanors. For Lovelock, speaking of the earth as Gaia counters proprietorial conceptions stemming from the damaging notion of human stewardship and undermines the notion of earth as a passive or inert object upon which human agents act. Assessing Lovelock’s approach, Mary Midgley asks: “Was it necessary to use language that apparently personified the earth?” (Midgley 2007, 8) and concludes affirmatively, asserting that the concept of a mechanistic universe is so deeply ingrained in human thought that Lovelock needed to name the earth in order to facilitate such an imaginative leap.By framing the earth as female, Lovelock capitalized on age-old tensions in the concept of the female: Gaia is nurturing but ruthless, fragile... (shrink)

Innovation processes are extremely complex and opaque, which makes it tough or even impossible to govern them. Innovators lack control of large parts of these developments and lack of foreknowledge about the possible consequences of emerging technologies. Because of these features some scholars have argued that innovation processes should be structurally reformed and the agent-centered model of responsibility for innovation should be dismissed altogether. In the present article it will be argued that such a structural idea of responsible research and (...) innovation presumes rational agents who can be motivated by reasons. Instead of dismissing the agent-centered approach to responsibility for innovation processes a virtue ethical approach will be developed. Virtues should be considered as the intellectual and moral dispositions presumed for good decision making. It will be shown that creativity and eagerness are creditable character traits that have a distinct positive value for managing the opaqueness of innovation processes. Such traits are mandatory for change and betterment. Furthermore, it will be argued that the notion of responsibility of innovators should not be understood merely as means for constraining them but also as a tool to perpetuate their integrity and happiness. Through discussing the captivating examples of Steve Jobs and the protagonist of Mary Shelley’s Frankenstein it will be shown how to apply this virtue ethical framework for innovators in practice. (shrink)

Regenerative agriculture refers to a suite of principles, practices, or outcomes which seek to improve soil health, biodiversity, climate, ecosystem function, and socioeconomic outcomes. However, recent reviews highlight wide heterogeneity in how it is defined. This impedes our ability to understand what regenerative agriculture is and has left the movement open to strategic repurposing by diverse stakeholders. Furthermore, the conceptual franchising of the regenerative agriculture debate by Western culture has omitted discussions surrounding social justice, relational values, and the contribution of (...) Indigenous and local knowledge that does not align with Western-centric producer-consumer frameworks. This is a continuation of injustice by creating barriers to representation and participation, and its confrontation will ultimately be necessary for regenerative agriculture to achieve its transformative potential. This article demonstrates that the farming techniques associated with the regenerative agriculture movement today have been practiced for centuries, and in some cases millennia, by Indigenous and local communities around the world. We propose that current Western academic attempts to define regenerative agriculture have resulted in long lists of practices, principles, and outcomes which fall short of describing the whole, because they lack the relational values component that is so integral to these Indigenous and local knowledge systems. We take an urgently needed, Indigenous-informed approach to defining regenerative agriculture, which confronts current epistemic injustice and prioritizes sociocultural and relational values. Finally, we propose an anti-colonial definition that draws on diverse knowledge systems including Indigenous ecophilosophies and published scientific analyses. (shrink)

Animal ethicists have recently debated the ethical questions raised by disenhancing animals to improve their welfare. Here, we focus on the particular case of breeding hens for commercial egg-laying systems to become blind, in order to benefit their welfare. Many people find breeding blind hens intuitively repellent, yet ‘welfare-only’ positions appear to be committed to endorsing this possibility if it produces welfare gains. We call this the ‘Blind Hens’ Challenge’. In this paper, we argue that there are both empirical and (...) theoretical reasons why even those adopting ‘welfare-only’ views should be concerned about breeding blind hens. But we also argue that alternative views, which (for example) claim that it is important to respect the telos or rights of an animal, do not offer a more convincing solution to questions raised by the possibility of disenhancing animals for their own benefit. (shrink)

The nexus of the moral luck debate is the control principle, which says that people are responsible only for things within their control. In this paper, I will first argue that the control principle should be restrained to blameworthiness, because responsibility is too wide a concept to square with control. Many deniers of moral luck appeal to the intuitiveness of the control principle. Defenders of moral luck do not share this intuition and demand a stronger defence of the control principle. (...) I will establish a defence of the control principle based on the value of simplicity for selecting a theory of blameworthiness. A simpler theory of blameworthiness is more likely to be true, and not being falsely judged blameworthy is desirable. I will conclude that simplicity advices the acceptance of the control principle over other theories of blameworthiness that embrace factors beyond control. (shrink)

Penicillin is a serendipitous discovery par excellence. But, what does this say about Alexander Fleming’s praiseworthiness? Clearly, Fleming would not have received the Nobel Prize, had not a mould accidently entered his laboratory. This seems paradoxical, since it was beyond his control. The present article will first discuss Fleming’s discovery of Penicillin as an example of moral luck in science and technology and critically assess some common responses to this problem. Second, the Control Principle that says that people are not (...) responsible for things beyond their control will be defended. An implication of this principle is that Alexander Fleming’s desert, which is based on his epistemic skills, remains untouched by luck. Third, by distinguishing different notions of praiseworthiness, a way to resolve the paradox of moral luck will be elaborated. Desert provides only a pro tanto reason to determine whether someone is an appropriate addressee of reward. Here, luck can make a difference. Forth, it will be argued that stimulating the quest for socially beneficial science provides a compelling reason to treat scientists with equal desert differently. Penicillin provides striking evidence for the importance of this quest and showcasing it incentivizes the making of socially beneficial science. Ultimately, it will be justified why Fleming deserved the Nobel Prize in at least one sense of the concept. (shrink)

This article critically examines the competitive, adversarial nature of the Western neoliberal style of democracy. Specifically, this article focuses on Amartya Sen’s notion of a “universal democracy” as a means of addressing socio-economic inequalities through Sen’s capability approach. Sen’s capability theory has become an acclaimed and widely used theory to evaluate and understand development and inequalities. However, we employ a distinctive critique by engaging Amartya Sen through Herbert Marcuse’s analysis of one dimensionality and the adversarial nature of Western democracy. We (...) further highlight how contemporary neoliberal society employ a particular, adversarial form of public participation. Through this, we underline the various neoliberal problemata, such as Western idealism, political passivity, and a “flattening of choice,” within contemporary democracies and locate how their competitive, winner-take-all nature has become essential to contemporary, Western democratic models. Consequently, we argue that democracy, as a functional concept and form of public engagement, should be fundamentally re-examined in order to address inequalities. (shrink)

Moral luck occurs when factors beyond an agent’s control affect her blameworthiness. Several scholars deny the existence of moral luck by distinguishing judging blameworthy from blame-related practices. Luck does not affect an agent’s blameworthiness because morality is conceptually fair, but it can affect the appropriate degree of blame for that agent. While separatism resolves the paradox of moral luck, we aim to show it that it needs amendment, because it is unfair to treat two equally blameworthy people unequally. We argue (...) that separatists should conceive fairness as a pro tanto reason for blame. By locating fairness as a ground for blame within a wider axiology of blame, separatism could resolve the challenge of blaming fairly. In such an axiology, reasonable and fair blame diverge. (shrink)

Rape culture is reportedly prevalent in sub-Saharan Africa. Culture, patriarchy, poverty and religion continue to sustain rape culture. The notions of the objectification of women’s bodies amongst the Shona people are causatives for rape culture within diverse cultural institutions. Africans reasonably uphold marriage with high esteem; unfortunately, the marriage institution is also susceptible to becoming a source of abuse, coercion, and is often used as a tool for controlling women. Some of the entrenched marital rituals embody diverse detrimental and contentious (...) practices, which deprive girls and women their autonomous rights, particularly their sexual and reproductive rights. This research article interrogates numerous aspects within the Shona indigenous religion and culture, which precipitate the construction of rape culture. The study uses African feminism as a theoretical framework. It utilises African feminist cultural hermeneutics to interrogate rape culture amongst the Shona people. The research study is qualitative with a conceptual analysis paradigm. It concludes by proposing the need for tapping into some life-giving and gender inclusive principles within the Shona indigenous religion and culture to be utilised as tools for eradicating rape culture. Contribution: Utilising the African feminist cultural hermeneutical framework, the article interrogated several factors precipitating rape culture amongst the Shona people. It foregrounded that women bear the brunt of burden of rape culture. It concludes by proposing the need for tapping into some positive Shona indigenous traditions as tools for curbing rape culture. (shrink)

Scientific discoveries are often to some degree influenced by luck. Whether luck’s influence is at odds with common-sense intuitions about responsibility, is the central concern of the philosophical debate about moral luck. Do scientists acknowledge that luck plays a role in their work and – if so – do they consider it morally problematic? The present article discusses the results of four focus groups with scientists, who were asked about their views on luck in their fields and its moral implications. (...) The participants underscored circumstantial luck as a key dimension of luck in science. Nevertheless, most participants insisted that there are ways of executing ‘control’ in science: They believe that virtues and skills can increase one’s chances for success. The cultivation of these skills and virtues was considered a reasonable ground for pride. Prizes and rewards were rarely tied to personal desert, but instead to their societal function. (shrink)

Several studies have indicated that scientists are likely to have an outlook on both facts and values that are different to that of lay people in important ways. This is one significant reason it is currently believed that in order for scientists to exercise a reliable ethical reflection about their research it is necessary for them to engage in dialogue with other stakeholders. This paper reports on an exercise to encourage a group of scientists to reflect on ethical issues without (...) the presence of external stakeholders. It reports on the use of a reflection process with scientists working in the area of animal disease genomics (mainly drawn from the EADGENE EC Network of Excellence). This reflection process was facilitated by using an ethical engagement framework, a modified version of the Ethical Matrix. As judged by two criteria, a qualitative assessment of the outcomes and the participants’ own assessment of the process, this independent reflective exercise was deemed to be successful. The discussions demonstrated a high level of complexity and depth, with participants demonstrating a clear perception of uncertainties and the context in which their research operates. Reflection on stakeholder views and values appeared to be embedded within the discussions. The finding from this exercise seems to indicate that even without the involvement of the wider stakeholder community, valuable reflection and worthwhile discourse can be generated from ethical reflection processes involving only scienitific project partners. Hence, the previous assumption that direct stakeholder engagement is necessary for ethical reflection does not appear to hold true in all cases; however, other reasons for involving a broad group of stakeholders relating to governance and social accountability of science remain. (shrink)

The possibilities of non-invasive prenatal testing (NIPT) are expanding, and the use of NIPT for adult-onset conditions may become widely available in the near future. If parents use NIPT to test for these conditions, and the pregnancy is continued, they will have information about the child’s genetic predisposition from birth. In this paper, we argue that prospective parents should be able to access NIPT for an adult-onset condition, even when they have no intention to terminate the pregnancy. We begin by (...) outlining the arguments against testing in such a situation, which generally apply the same considerations that apply in the predictive testing of a minor to the fetus in utero. We then contend, firstly, that there are important practical considerations that support availability of testing for prospective parents regardless of their stated intentions. Secondly, we object to the ethical equation of a fetus in utero with a minor. We base our analysis on a view of pregnancy that conceptualises the fetus as a part of the gestational parent, as opposed to the more common ‘container’ model of pregnancy. We suggest that fetal information is best conceptualised as shared information between the gestational parent and future child. Thus, it should be approached in similar ways as other kinds of shared information (such as genetic information with implications for family members), where a person has a claim over their own information, but should be encouraged to consider the interests of other relevant parties. (shrink)

One can view the recent science fiction films Gravity, Interstellar, and The Martian as a three-part dialogue concerning the existential relationship between humanity, technology, and the science employed to create said technologies. Pitched into the deep of space, each film’s protagonist must seek to find technological answers to save their own existence. Each film’s exploration of these themes essentially questions the importance of technology as a product of scientific-calculative thinking and the validity of this thinking as the primary mode of (...) understanding the world. In this article, I explore the existential dialogue crafted between these films through Walter Benjamin and Martin Heidegger. Through Benjamin, we will see how the medium of film is completely dependent upon technology to present its art and how this transforms the stories it tells, while also transforming the audience and the audience’s reality. Consequently, understanding the popular reception of these films becomes just as important as the films themselves for our present study. Through Heidegger, we will see how technology provides a space where we can find a truth about ourselves and our reality. However, modern technology’s increasing scientific complexity, created by scientists who in turn employ modern technology to further science, also conceals just as much as it reveals. These films provide us with an opportunity to explore a truth about our dependence upon technology even though, as technologically dependent works of art, they may also conceal how dependent upon science we have become when constructing our reality. (shrink)