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)

A rapidly growing proportion of health research uses ‘secondary data’: data used for purposes other than those for which it was originally collected. Do researchers using secondary data have an obligation to disclose individual research findings to participants? While the importance of this question has been duly recognised in the context of primary research, it remains largely unexamined in the context of research using secondary data. In this paper, we critically examine the arguments for a moral obligation to disclose individual (...) research findings in the context of primary research, to determine if they can be applied to secondary research. We conclude that they cannot. We then propose that the nature of the relationship between researchers and participants is what gives rise to particular moral obligations, including the obligation to disclose individual results. We argue that the relationship between researchers and participants in secondary research does not generate an obligation to disclose. However, we also argue that the biobanks or data archives which collect and provide access to secondary data may have such an obligation, depending on the nature of the relationship they establish with participants. (shrink)

In their paper, ‘How to reach trustworthy decisions for caesarean sections on maternal request: a call for beneficial power’, Eide and Bærøe present maternal request caesarean sections (MRCS) as a site of conflict in obstetrics because birthing people are seeking access to a treatment ‘without any anticipated medical benefit’. While I agree with the conclusions of their paper -that there is a need to reform the approach to MRCS counselling to ensure that the structural vulnerability of pregnant people making birth (...) decisions is addressed—I disagree with the framing of MRCS as having ‘no anticipated medical benefit’. I argue that MRCS is often inappropriately presented as unduly risky,without supporting empirical evidence,and that MRCS is most often sought by birthing people on the basis of a clinical need. I argue that there needs to be open conversation and frank willingness to acknowledge the values that are currently underpinning the presentation of MRCS as ‘clinically unnecessary’; specifically there needs to be more discussion of where and why the benefits of MRCS that are recognised by individual birthing people are not recognised by clinicians. This is important to ensure access to MRCS for birthing people that need it. (shrink)

The number of cesarean sections performed globally has been consistently rising since the 1980s.1 The number of cesareans performed now greatly exceeds the number that experts predict are necessary.2 In Brazil, the world's "cesarean capital," over half of births are surgical. In the United States, approximately one third of babies are delivered by cesarean, and in the United Kingdom around 26 percent of births are by cesarean.3 Cesarean section can be a life-saving intervention when vaginal birth poses a risk to (...) woman or fetus.4 However, some doctors believe that cesareans performed in the absence of an emergency carry substantial risks for limited or no benefit (Wagner 2000... (shrink)

I begin by examining the answer to a traditional puzzle concerning supererogatory acts: if they are good to do, why are they not required? The answer often given is that they are optional acts because they cost the agent too much. This view has parallels with the traditional view of religious sacrifice, which involves offering up something or someone valuable as a gift or victim and experiencing a ‘cost’ as part of the ritual. There are problems with the idea that (...) costs justify the optional nature of supererogatory acts, however, and I suggest that these problems mirror the tensions that are found in Christian theology when a traditional view of sacrifice is adopted. (shrink)

Are Detroit ruin tours a form of morally permissible cultural tourism, or do these tours amount to a form of exploitation? To answer this question I compare Detroit ruin tours with ‘slum tours’ – guided tours of slums in the world's major cities. I argue that exploitation of the sort we find in slum tourism also exists, to a lesser extent, in Detroit ruin tours. To show this I detail two different accounts of exploitation and argue that Ruth Sample's account (...) best captures what is most morally problematic with slum tours and ruin tours. I then identify the similarities and differences between slum tours and ruin tours, and provide suggestions for how ruin tours could be retooled to avoid some of the worries of exploitation. Finally, I suggest that with the proper framing Detroiters could embrace photographic tours as a new form of cultural tourism. (shrink)

In order to strengthen civic education in elementary schools, research is needed to understand preservice teachers’ ideas about civic teaching. The current study examined the degree to which elementary preservice teachers’ civic competencies (i.e., civic awareness, dispositions, and interpersonal skills) and the grades they plan to teach are associated with expected future civic teaching. Survey data were collected from 235 undergraduate students majoring in early childhood or elementary education. Results from hierarchical multiple regression showed that greater civic awareness and lower (...) levels of trust in the American promise were associated with expected future teaching about politics, while greater civic awareness, stronger commitment to social issues, and better interpersonal skills were associated with expected future teaching about community engagement. Additionally, those who plan to teach the upper elementary grades (third–fifth) were more likely to report that they will teach about politics and community engagement in their future classrooms when compared to those who plan to teach younger grades (PreK–second). Practical implications for preservice teacher preparation are discussed. (shrink)

There is an emerging ethical consensus that injured research participants should receive medical care and compensation for their research-related injuries. This consensus is premised on notions of beneficence, distributive justice, compensatory justice and reciprocity. In response, countries around the world have implemented no-fault compensation systems to ensure that research participants are adequately protected in the event of injury. The United States, the world's leading sponsor of research, has chosen instead to rely on its legal system to provide injured research participants (...) with medical care and compensation. This article argues that US reliance on its legal system leaves injured research participants unprotected in the event of injury. Nearly every injured research participant will have difficulty receiving compensation in court, and certain classes of research participants will be barred from receiving compensation altogether. The United States’ outlier status also threatens to impede US-sponsored multinational research, potentially delaying important biomedical advances. To rectify this injustice, researchers, Institutional Review Boards, sponsors and research institutions should advocate systematic no-fault compensation in the United States to bring US law into accord with global ethical norms and ensure that injured research participants are adequately protected. (shrink)

: The natural philosopher Michael Faraday and the psychologist Jean Piaget experimented directly with natural phenomena and children. While Faraday originated evidence for spatial fields mediating force interactions, Piaget studied children's cognitive development. This paper treats their experimental processes in parallel, taking as examples Faraday's 1831 investigations of water patterns produced under vibration and Piaget's interactions with his infants as they sought something he hid. I redid parts of Faraday's vibrating fluid activities and Piaget's hiding games. Like theirs, my experiences (...) showed that incomplete observations and confusions accompanied—and facilitated —experimental developments. While working with things in their hands, these experimenters' minds were also engaged, inferring new, more coherent understandings of the behaviors under study. Transitory ripples disclosed distinct patterns; infants devised more productive search methods. From the ripples, Faraday discerned an oscillatory condition that informed his subsequent speculations about light. From the infant search, Piaget identified experimenting as a child's means of developing self and world, later envisioning its infusion into education. Taken together, these two stories demonstrate that cognitive capacities emerge in the actual process of experimenting. This finding eclipses the historical context in its implications for education today. When learners pursue their own experiments, their minds develop. (shrink)

Explorations of a trust approach for nursing ethicsTrust has long been acknowledged as central to nurse–patient relationships. It, however, has not been fully explored nor‐matively. That is, trust must be examined from a perspective that encompasses not only reliability and competence, but also good will within nursing relationships. In this paper, we explore how a trust approach, based on Annette Baier’s work on trust in feminist ethics, could help inform future developments in nursing ethics. We discuss the limitations of other (...) approaches such as those based on contracts, paternalism, and care. By drawing out central features of Baier’s theory, we demonstrate how it can help overcome the problems of these previous models. In doing so, we emphasise the importance of combining the ethics of care and justice, acknowledging vulnerability and the potential for evil in nursing relationships, and politically situating the ethical concerns of nursing. (shrink)

An examination of crucial questions about the relationship between rationality and femininity.

In “Body, Cyborgs and the Politics of Incarnation,” Bruno Latour recounts the story of Professor Paul Churchland, his colleague, carrying a portrait of his wife. “Nothing unusual in this,” Latour writes. “No, except that this picture was an image produced by computed tomography, a CT scan of his wife’s inner brain, in full colour”. The image of Professor Church-land proudly showing off a full-color CT of his wife’s beautiful brain has a wonderful sense of absurdity to it, and its punch (...) line depends on the reader being jolted by the strangeness of medical imagery standing in place of portraiture—no matter how stunning the cerebellum.However.. (shrink)

Historical method rests on the common-denominator values that characterize modernity. Postmodernity challenges those values across the range of practice and with them the very foundations of historical explanation. Responding to this challenge is central to the ethics of history at the present time. An adequate response requires at least three things summarized here: a clear understanding of the cultural function of history as one of the representational methods characterizing modernity; a definition of postmodernity and its challenges that is less trivial (...) than those currently prevailing in North America; and even some experimental effort to explore some of the positive possibilities of the postmodern challenge, including alternative uses for “the past.”. (shrink)

This article describes a study carried out among 14-18-year-old nursing students in Hungary. The students were asked to consider an ethical problem. The parents of a sick child ask that she should not be told of a forthcoming operation. Are the nurses to agree to this demand or not? The author concluded from this study that nurses need more training in ethical decision-making, that they need to know about the rights of children in hospital, and that nursing training should start (...) when students are older. (shrink)

A 35-year-old woman presents to the hospital after a fall at home. A routine medical history and physical examination reveal that the patient identifies as intersex, and an X-ray of the left hip demonstrates profound osteopenia. The patient is admitted to the hospitalist service for further evaluation. What does it mean to identify as intersex? In the medical world, “intersex” is usually referred to as DSD, or “disorders of sex development.” Until the 1990s, physicians referred to this condition as hermaphroditism, (...) but this label is no longer used because it evokes mythical creatures rather than real human beings. Even the DSD label is controversial, and the patient in our case study does not think... (shrink)

Brandt addresses what has been called an “embarrassment” in Socratic studies: in the Crito, Socrates claims that he is only persuaded to act on the basis of propositions that appear to him to be best upon rational examination (45b). However, in several other dialogues, Socrates appears to contradict himself: He obeys the commands of his supernatural daimonion, thereby suggesting that divine command - something that is not the product of human reasoning - can also persuade Socrates to act. Herein lies (...) the apparent conflict: If Socrates is the paragon of rationality, why would he unreflectively obey the commands of his daimonion, an extra rational source? After exposing the weaknesses in arguments from the recent scholarship on this issue, Brandt undertakes the formidable task of proposing an alternative way of understanding Socrates as the “ideal rational agent.” While Brandt’s project is admirable and creative, I argue that parts of it are inconsistent with essential theses of Socratic philosophy. I address four issues that concern me. (shrink)

Faraday demonstrated electromagnetic induction in 1831 using an iron ring wound with two wire coils; on interrupting battery current in one coil, momentary currents arose in the other. Between Faraday's ring and the induction coil, coiled instruments developed via meandering paths. This paper explores the opening phase of that work in the late 1830s, as the iron core, primary wire coil, and secondary wire coil were researched and differentiated. ‘Working knowledge’ gained with materials and phenomena was crucial to innovations. To (...) understand these material-based interactions, I experimented with hand-wound coils, along with examining historical texts, drawings, and artefacts. My experience recovered the historical dead-end of two-wire coils and ensuing work with long-coiled single conductors initiated by Faraday and Henry. The shock and spark heightened in these coils provided feedback to the many instrumental configurations tested by Page, Callan, Sturgeon, Bachhoffner, and others. The continuous conductor differentiated into two segments soldered together: a thick short wire carrying battery current and a long thin wire for elevating shocks . The joined wires eventually separated, yet their transitional connection documents belief that the induced effects depend on continuity. These coiled instruments, with their intertwined histories, show experimental work and understandings in the process of developing. Seeing the nonlinear paths by which these instruments developed deepens our understanding of historical experiences, and of how people learn. (shrink)

Feminist science scholars need models of science that allow feminist accounts, not only of the inception and reception of scientific theories, but of their content as well. I argue that a "Network Model," properly modified, makes clear theoretically how race, sex and class considerations can influence the content of scientific theories. The adoption of the "corpuscular philosophy" by Robert Boyle and other Puritan scientists during the English Civil War offers us a good case on which to test such a model. (...) According to these men, the minute corpuscles constituting the physical world are dead, not alive; passive, not active. I argue that they chose the principle that matter is passive in part because its contrary, the principle that matter is alive and self-moving, had a radical social meaning and use to the women and men working for progressive change in mid-seventeenth century England. (shrink)