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)

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)

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)

–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)

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)

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)

: 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. (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 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.

SummaryThe menarcheal age and frequency of menstrual disorders in mothers of dizygotic and monozygotic twins born in Denmark in 1984 or 1985 were compared with a control sample of mothers of singleton infants born in the same period. Compared to control mothers, mothers of DZ twins had a lower menarcheal age and a lower frequency of menstrual irregularities—menstrual cycles exceeding 5 weeks duration, varying length of menstrual cycles and episodes of menostasia. Mothers of MZ twins had a higher frequency of (...) intermenstrual bleeding compared to mothers of singletons. All results were adjusted for maternal age and parity. The findings are relevant to the interpretation of aetiological factors leading to twin births and support the hypothesis of differences in sex hormone activity of the mothers of DZ twins in comparison with other women. (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)

In this article, Herrie and Sørensen examine the mediation of typing indicators (“…”) in online messaging. Their point of departure is a scene from the contemporary novel Exciting Times by Naoise Dolan (2020), in which the ‘dots’ play a prominent role. Their analysis shows how typing indicators, as interface design, mediate the complex communication situation in which they take part: from being mere signals, they have slipped into our emotional lives. From a semiotic perspective (Charles S. Peirce), the authors define (...) typing indicators as uncertain indices which through unknowability and suspense establish an attentional presence. In continuation hereof, the authors argue that the acts of writing and waiting in contemporary attentional ecologies (Yves Citton) through the mediation of typing indicators as indicators of attentional presence, could be considered a mode of caring (Bernard Stiegler). (shrink)

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

This paper is divided into two parts: in part one I give some examples from a study of how patient or client perspectives on treatment and life with cancer are “discovered”, addressed, included and shaped within cancer research and treatment after World War 2. In this first part I draw on analyses from my Ph.D. thesis about the concept of quality of life and psycho-social research on cancer, in which I focused on the development and interrelationships between (1) welfare state (...) forms of governance, (2) the practice of cancer treatment and its relation to research, and (3) client’s relations to treatment regimes and a life with cancer. I argue that the client’s perspective is represented in medical practice in many different, and often problematic, ways. A core problem is that this perspective is often represented from a third-person point of view, not from a direct first-person point of view. I find a number of reasons for this. The lack of first-person involvement is not isolated to medical practice but is also obvious in psycho-social practice that evolves in the relation to medical treatment and research in the last part of this century. The conflict around this is reflected in psychological theories about illness and disease that are formulated in this period. In the second part of the article I discuss the directions in which psychological theory has to develop in order to contribute to the recognition and involvement of first-person perspectives in medical treatment and research. The aim of this discussion is not limited to understanding how we as subjects handle everyday life with biological changes of bodily function. (shrink)

Im 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)

This article examines Re Imogen (No 6) (2020) 61 Fam LR 344, a decision of the Family Court of Australia, which held that an application to the Family Court is mandatory if a parent or a medical practitioner of a child or adolescent diagnosed with gender dysphoria disputes the diagnosis, the capacity to consent, or the proposed treatment. First, we explain the regulatory framework for the medical treatment of gender dysphoria in children and adolescents, including the development of the welfare (...) jurisdiction under Section 67ZC of the Family Law Act 1975 (Cth). We then provide an overview of the Re Imogen decision, and discuss the balancing exercise involved in determining a child’s best interests in the medical treatment context. We challenge the Family Court’s conclusion that, in relation to a dispute about diagnosis or treatment, a finding that the child or adolescent is Gillick competent to consent to treatment is not determinative, and the Family Court must determine the dispute. We argue that this conclusion represents an unjustified incursion into the right of Gillick competent transgender children and adolescents to make decisions about their own bodies and identities, and that the protective role of parents and the Family Court cannot justify interfering with their bodily autonomy in this context. Finally, we propose an alternative regulatory framework that removes the Family Court from the medical treatment process for gender dysphoria in circumstances of dispute between a parent and their Gillick competent child. (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)

Editorial for issue 28 of Scandinavian Jewish Studies, 'Ethics and Aesthetics of Holocaust Memory'.

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)

There is a need for empirically based research on social and ethical challenges related to informed consent processes, particularly in studies focusing on adolescent sexual and reproductive health. In a pilot study of a school-based pregnancy prevention intervention in rural Zambia, the majority of the guardians who were asked to consent to their daughters’ participation, refused. In this paper we explore the reasons behind the low participation in the pilot with particular attention to challenges related to the community engagement and (...) informed consent process. The pilot was implemented in two schools and examined the acceptability of a package of interventions including economic support to families to keep their girls in school, pocket money for girls, youth club meetings on reproductive health, and community meetings to sensitize the community. Focus group discussions were conducted with girls who participated in the pilot, boys in their class and with parents. Individual semi-structured interviews were conducted with teachers, peer educators and community health workers involved in the coordination of the intervention as well as with religious and traditional leaders. Data were analyzed through thematic analysis. The findings indicate that inadequate use of recognized community communication channels during the community engagement process and dissemination of information about the pilot resulted in limited understanding of the pilot concept by the community. This surfaced through uncertainty and fear that the intervention may result in loss of control over daughters, worries about why money was provided unconditionally to girls, and suspicion of links to satanism. The sense of insecurity appeared to be exacerbated by low literacy levels, poverty, fear of loss of bride wealth, perceived disregard for local perceptions of social status, and scanty trust in the actors implementing the pilot. Inadequate use of locally appropriate channels in the dissemination of information created room for interpretation and facilitated development of mistrust, undermining the conditions for community engagement and actual informed consent. A key lesson learnt is the importance of taking seriously the complexity of local values and structures that may impact people’s capability to consent or not consent to a study in an informed manner. (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)

The notion of responsible innovation suggests that innovators carry additional responsibilities beyond those commonly suggested. In this paper, we will discuss the meaning of these novel responsibilities focusing on two philosophical problems of attributing such responsibilities to innovators. The first is the allocation of responsibilities to innovators. Innovation is a process that involves a multiplicity of agents and unpredictable, far-reaching causal chains from innovation to social impacts, which creates great uncertainty. A second problem is constituted by possible trade-offs between different (...) kinds of responsibility. It is evident that attributing backward-looking responsibility for product failures diminishes the willingness to learn about such defects and to take forward-looking responsibility. We will argue that these problems can be overcome by elaborating what it is exactly that innovators are responsible for. In this manner, we will distinguish more clearly between holding responsible and taking responsibility. This opens a space for ‘supererogatory’ responsibilities. Second, we will argue that both innovation processes and outcomes can be objects of innovators’ responsibility. Third, we will analyze different kinds of responsibility and show that the functions of their attribution are not necessarily contradictory. Based on this conceptual refinement, we will argue that accountability, responsibility-as-virtue and the willingness to take responsibility are crucial for responsible innovation. (shrink)

Gehört die Fähigkeit, uns zu verlieben, zu unserem stammesgeschichtlichen Erbe? Ist das ein Trick der Natur, der Menschen dazu bewegt, Bindungen einzugehen? Ist Bindung Liebe? Ist Sexualität im Phänomenbereich der Liebe zu verorten? Ist Liebe überhaupt ein Gefühl oder besteht sie aus einem Netz von Gefühlen, Empfindungen und rationalen Einstellungen? Welche Rolle kommt dabei kulturell geprägten Überzeugungen und Vorstellungen zu? Und was wird daraus in der Kunst? Diesen und anderen Fragen gehen die Autorinnen und Autoren dieses Bandes aus philosophischer, biologischer, (...) ethnologischer, psychologischer, neurologischer sowie sozial- und literaturwissenschaftlicher Perspektive nach. Herausgekommen ist dabei ein Buch, in dem neuere wissenschaftliche Erkenntnisse eng aufeinander bezogen und in einem gut verständlichen, anregenden Stil präsentiert werden. (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)

This paper draws on research exploring how men narrate their long-term experiences of Weight Loss Surgery [WLS] and is specifically focused on findings relating to male embodiment. Whilst there is concern about increasing obesity and the possible role of bariatric [WLS] surgery in ameliorating this, there has been little research to date exploring men’s longer-term experiences of this. For the purposes of the present study, interviews were conducted with five men who had undergone bariatric surgery at least four years previously. (...) The transcribed interviews were subjected to narrative analysis with the additional incorporation of Watson’s “male body schema” into this process in order to facilitate focus on the embodied nature of the storied accounts obtained. The findings suggested two seemingly contrasting storylines: “ongoing struggles” and “success”. Struggles related mainly to control over eating habits and the visceral challenges of long-term side effects following surgery. Despite these struggles, the men ultimately presented an overriding storyline of embodied “success” in how the surgery had assisted them to live more normatively male lives. Importantly, narratives around struggles were presented as more private stories in contrast to the public emphasis on success. The silencing dynamic implicit in this suggests the likelihood that other men encountering similar experiences would be reticent to reveal their struggles, thereby perpetuating their suffering and leaving popular obesity and weight loss narratives unchallenged. (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)

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)