The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...) are embracing this populist rhetoric to encourage wider public participation. We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance. (shrink)

Recent policy developments in the area of livestock husbandry have suggested that, from the perspective of optimizing animal welfare, new animal husbandry systems should be developed that provide opportunities for livestock animals to be raised in environments where they are permitted to engage in “natural behavior.” It is not known whether consumers regard animal husbandry issues as important, and whether they differentiate between animal husbandry and other animal welfare issues. The responsibility for the development of such systems is allocated jointly (...) between farmers, regulators, different actors in the food chain, and consumers. This research focuses on understanding consumer attitudes and preferences regarding the development and introduction of such systems, to ensure that they are acceptable to consumers as well as producers, regulators, and scientists. Consumer perceptions of animal welfare and animal husbandry practices were evaluated using quantitative consumer survey, which focused on two animal husbandry issues – farmed pigs and farmed fish. Following pilot work, 1000 representative Dutch consumers were sampled about their attitudes to either pig or fish husbandry. The results indicated that consumers think about animal welfare in terms of two broad categories related to their health and living environment, but do not think about welfare issues at a more detailed level. Greater concern was expressed about the welfare of pigs compared to fish. Consumer trust in labeling also emerged as an important issue, since consumers need to trust different food chain actors with responsibility for promoting animal welfare, and are reluctant to consider the details of animal husbandry systems. As a consequence, a transparent, enforceable, and traceable monitoring system for animal welfare friendly products is likely to be important for consumers. (shrink)

Moral reasoning traditionally distinguishes two types of evil: moral and natural. The standard view is that ME is the product of human agency and so includes phenomena such as war, torture and psychological cruelty; that NE is the product of nonhuman agency, and so includes natural disasters such as earthquakes, floods, disease and famine; and finally, that more complex cases are appropriately analysed as a combination of ME and NE. Recently, as a result of developments in autonomous agents in cyberspace, (...) a new class of interesting and important examples of hybrid evil has come to light. In this paper, it is called artificial evil and a case is made for considering it to complement ME and NE to produce a more adequate taxonomy. By isolating the features that have led to the appearance of AE, cyberspace is characterised as a self-contained environment that forms the essential component in any foundation of the emerging field of Computer Ethics. It is argued that this goes some way towards providing a methodological explanation of why cyberspace is central to so many of CE’s concerns; and it is shown how notions of good and evil can be formulated in cyberspace. Of considerable interest is how the propensity for an agent’s action to be morally good or evil can be determined even in the absence of biologically sentient participants and thus allows artificial agents not only to perpetrate evil but conversely to ‘receive’ or ‘suffer from’ it. The thesis defended is that the notion of entropy structure, which encapsulates human value judgement concerning cyberspace in a formal mathematical definition, is sufficient to achieve this purpose and, moreover, that the concept of AE can be determined formally, by mathematical methods. A consequence of this approach is that the debate on whether CE should be considered unique, and hence developed as a Macroethics, may be viewed, constructively, in an alternative manner. The case is made that whilst CE issues are not uncontroversially unique, they are sufficiently novel to render inadequate the approach of standard Macroethics such as Utilitarianism and Deontologism and hence to prompt the search for a robust ethical theory that can deal with them successfully. The name Information Ethics is proposed for that theory. It is argued that the uniqueness of IE is justified by its being non-biologically biased and patient-oriented: IE is an Environmental Macroethics based on the concept of data entity rather than life. It follows that the novelty of CE issues such as AE can be appreciated properly because IE provides a new perspective. In light of the discussion provided in this paper, it is concluded that Computer Ethics is worthy of independent study because it requires its own application-specific knowledge and is capable of supporting a methodological foundation, Information Ethics. (shrink)

There is no phenomenal consciousness; there is nothing 'that it is like' to be me. To believe in phenomenal consciousness or 'what-it's-like-ness' or 'for-me-ness' is to succumb to a pernicious form of the Myth of the Given. I argue that there are no good arguments for the existence of such a kind of consciousness and draw on arguments from Buddhist philosophy of mind to show that the sense that there is such a kind of consciousness is an instance of cognitive (...) illusion. (shrink)

Drawing chiefly on recent sources, in Part One I sketch an untraditional way of articulating what I claim to be central elements of traditional Catholic morality, treating it as based in virtues, focused on the recipients (“patients”) of our attention and concern, and centered in certain person-to-person role-relationships. I show the limited and derivative places of “natural law,” and therefore of sin, within that framework. I also sketch out some possible implications for medical ethics of this approach to moral theory, (...) and briefly contrast these with the influential alternative offered by the “principlism” of Beauchamp and Childress. In Part Two, I turn to a Catholic understanding of the nature and meaning of human suffering, drawing especially on writings and addresses of the late Pope John Paul II. He reminds us that physical and mental suffering can provide an opportunity to share in Christ's salvific sacrifice, better to see the nature of our earthly vocation, and to reflect on the dependence that inheres in human existence. At various places, and especially in my conclusion, I suggest a few ways in which this can inform bioethical reflection on morally appropriate responses to those afflicted by physical or mental pain, disability, mental impairment, disease, illness, and poor health prospects. My general point is that mercy must be informed by appreciation of the person's dignity and status. Throughout, my approach is philosophical rather than theological. (shrink)

Background Informed consent is an integral component of good medical practice. Many researchers have investigated measures to improve the quality of informed consent, but it is not clear which techniques work best and why. To address this problem, we propose developing a core outcome set to evaluate interventions designed to improve the consent process for surgery in adult patients with capacity. Part of this process involves reviewing existing research that has reported what is important to patients and doctors in the (...) informed consent process. Methods This qualitative synthesis comprises four phases: identification of published papers and determining their relevance; appraisal of the quality of the papers; identification and summary of the key findings from each paper while determining the definitiveness of each finding against the primary data; comparison of key themes between papers such that findings are linked across studies. Results Searches of bibliographic databases returned 11,073 titles. Of these, 16 studies met the inclusion criteria. Studies were published between 1996 and 2016 and included a total of 367 patients and 74 health care providers. Thirteen studies collected data using in-depth interviews and constant comparison was the most common means of qualitative analysis. A total of 94 findings were extracted from the primary papers and divided into 17 categories and ultimately 6 synthesised findings related to: patient characteristics, knowledge, communication, the model patient, trust and decision making. Conclusions This qualitative meta-aggregation is the first to examine the issue of informed consent for surgery. It has revealed several outcomes deemed important to capture by patients and clinicians when evaluating the quality of a consent process. Some of these outcomes have not been examined previously in research comparing methods for informed consent. This review is an important step in the development of a COS to evaluate interventions designed to improve the consent process for surgery. Registration The study protocol was registered on the international prospective register for systematic reviews. (shrink)

An alternative notion of an existential quantifier on four-valued Łukasiewicz algebras is introduced. The class of four-valued Łukasiewicz algebras endowed with this existential quantifier determines a variety which is denoted by \. It is shown that the alternative existential quantifier is interdefinable with the standard existential quantifier on a four-valued Łukasiewicz algebra. Some connections between the new existential quantifier and the existential quantifiers defined on bounded distributive lattices and Boolean algebras are given. Finally, a completeness theorem for the monadic four-valued (...) Łukasiewicz predicate calculus corresponding to the dual of the alternative existential quantifier is proven. (shrink)

Background: Prior research has explored reasons why health care providers may or may not choose to seek an ethics consultation. Although low-quality communication is evident in many ethics consultations, it is unknown whether poor communication in clinical settings is related to health care providers' requests for ethics involvement. Objective: To assess the relationship between self-reported ratings of health care providers' inter- and intraprofessional communication and ethics consultation requests. Method: This cross-sectional survey was conducted using a self-administered questionnaire of physicians and (...) nurses in six intensive care units at one academic medical center in the United States. The questionnaire assessed perceptions about requesting ethics consultations and how health care providers perceive communication. Results: Two hundred sixty-two participants (228 nurses and 34 physicians) responded to the survey (response rate 55%; 59% for nurses and 41% for physicians). Requests for an ethics consult were positively associated with perceived quality of interprofessional communication (r =.13, p <.05), but perceptions of the number of ethical dilemmas that occur on participants' units each month were negatively associated with the perceived quality of intra-professional communication (r = −.17, p <.01). Conclusion: The relationship that was hypothesized between perceived poor communication and increased number of ethics consultations was not borne out by these data. Indeed, we found the opposite; these finding suggests that good inter- and intraprofessional communication may promote the use of outside resources, such as ethics, when they are needed. (shrink)

The introduction of novel diagnostic techniques in clinical domains such as genomics and radiology has led to a rich ethical debate on how to handle unsolicited findings that result from these innovations. Yet while unsolicited findings arise in both genomics and radiology, most of the relevant literature to date has tended to focus on only one of these domains. In this article, we synthesize and critically assess similarities and differences between “scanning the body” and “sequencing the genome” from an ethical (...) perspective. After briefly describing the novel diagnostic contexts leading to unsolicited findings, we synthesize and reflect on six core ethical issues that relate to both specialties: terminology; benefits and risks; autonomy; disclosure of unsolicited findings to children; uncertainty; and filters and routine screening. We identify ethical rationales that pertain to both fields and may contribute to more ethically sound policies. Considerations of preserving public trust and ensuring that people perceive healthcare policies as fair also support the need for a combined debate. (shrink)

Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

Hegel attempts both to give evil its metaphysical due and to give it intelligibility within a processive idealistic system. To accomplish these ends, he consistently employs the contrast between the natural and the free act of the subject and the contrast between the particular and the universal. He places these contrasts within the situation of an original and presupposed unity of spirit that itself is the ground of the mediation required for thinking freedom, for evil, and for ultimate reconciliation. He (...) argues for evil’s ultimate intelligibility in terms of its necessity as a consequent moment in the development of spirit from its ground; he resolves problems of evil’s penultimate irrationality in terms of its unstable contradictory elements in spirit’s history which is not yet fully concrete, a simultaneity of “ought to be” and “ought not to be” in the sense that the instability must be surpassed but not that it should never have been. The aims of this paper will be to summarize and evaluate Hegel’s efforts to give evil both significance and intelligibility within his system and to estimate if a system of progressive idealism contributes a philosophically new dimension to the problem of evil in a universe. (shrink)

Hegel’s basic position so far on the various meanings of evil as necessary and thereby intelligible directly in the development of spirit might be summed up as follows. Evil is always a necessary moment of instability which gives impetus in the movement from various meanings of particularity to various meanings of universality; from the more abstract expression of potential unity and truth to the more actualized notion and unity.

Contrasting loving our neighbors with utilitarians’ demand to maximize good reveals important metatheoretic structures and dynamics that I call virtues- basing, input drive, role centering, and patient focus. First, love (good will) is a virtue; such virtues are foundational to both moral obligations and the impersonally valuable. Second, part of loving is acting lovingly. Whether and how I act lovingly, and how loving it is, is a matter of motivation; this input-driven account contrasts with highlighting actions’ outcome. Third, in regarding (...) someone as our neighbor we view her in relation to ourselves; a role-centered perspective shows that a wide range of person-to-person role-relationships constitute moral life. Fourth, if our moral task is loving each person, the moral question is how we respond to each person’s relevant welfare and needs, focusing on those toward someone acts (moral patients), not on maximizing good across persons or producing an optimal world. (shrink)

For W. E. B. Du Bois, the tragedy of Reconstruction was that its achievements were overthrown and erased from collective memory. Du Bois’s Black Reconstruction corrects this, claiming enslaved people who fled plantations self-emancipated, thus enacting a “general strike against the slave system.” Yet Du Bois contravenes his general strike thesis when he quotes without rebuttal several Union officials who spoke of the formerly enslaved in degrading, nonagentic terms. I turn to Jacques Rancière’s politics of dissensus to understand why Du (...) Bois quoted such racist views without comment. In Rancière, political actors “stage a scene” of equality that is shared, even among parties in conflict. Recording conflicting perceptions of the strike, highlighting divisions that persist despite momentary advances of equality, Du Bois’s reading of the general strike is dissensual in Rancière’s sense, I argue. But Du Bois also offers a valuable corrective to Rancière, whose account of the first plebeian secession erases a different general strike from memory. Rancière reads the Aventine as an event of confrontation unconnected to the collective action that Du Bois summoned from the archive and named “general strike.”. (shrink)

This study identified and compared the attitudes of visitors toward zoo-housed little penguins, their enclosure and visitor experience that may influence the way visitors behave toward little penguins at two Australian zoos. Visitor attitudes were assessed using an anonymous questionnaire, targeting visitor beliefs, and experiences, where visitors were randomly approached at the penguin exhibit after they had finished viewing the penguins. Visitors were given two options to complete the questionnaire, on an iPad during their zoo visit or online (URL sent (...) via email) after their zoo visit. A total of 638 participants (495 at Melbourne Zoo and 143 at Taronga Zoo) completed the questionnaire, 42% were completed onsite during their zoo visit and 58% were completed online after their zoo visit. Most participants were living in Australia, non-zoo members, female, previously or currently owned a pet, aged between 26 and 35 years and had a University degree. Results showed that the attitude dimensions of visitors were consistent between the two zoos which indicates that these measures of attitudes were stable over time and location. Overall, visitors at both zoos had positive attitudes toward little penguins, penguin welfare, the enclosure, and visitor experience. However, whether these positive attitudes and positive visitor experience influenced the way visitors behaved toward the penguins remains unclear. There were some differences in visitor attitudes toward the perceived “aggressiveness” and “timidness” of little penguins, “negative penguin welfare”, “experience with the penguins”, “learning”, “visual barriers” and the way visitors rated their overall experience at the penguin enclosure. While the reasons for the differences in visitor attitudes and visitor experience between the zoos were not clear, some factors such as penguin behavior and enclosure design, may have been attributable to these differences. Also, a relationship was found between visitor attitudes and how visitors rated the welfare of penguins, the enclosure and visitor experience at the enclosure; more positive visitor attitudes were associated with higher ratings of penguin welfare, the enclosure and visitor experience. The practical implications of these results for zoos is unclear because the differences in visitor attitudes were numerically small. This requires further comparisons between zoos or enclosures that are more markedly different than the penguin enclosures in the present study and further research on how visitors assess zoo animals, enclosures and visitor experience. (shrink)

The definition of acedia presents unique conceptual problems among the eight Evagrian logismoi. Its descriptions are so complex and varied as to render the concept seemingly incoherent. This article argues that the conceptual unity of acedia has been obscured by the translation of Evagrian logismoi into the ‘deadly sins’ tradition, resulting in a category error. Acedia is more properly understood, not as a psychological state or a sin, but rather as an array of demonic temptations with the unifying end-goal of (...) interrupting the anchoritic ideal of sustained contemplation. (shrink)

Here, we report on a quasi-experimental study to explore the applicability and perceived benefits of the CRAFT program, which is based on mindfulness, yoga, positive psychology, and emotional intelligence, to improve higher education student musicians’ health and well-being during the lockdown. A subset of student musicians at a Higher Conservatory of Music in Spain followed the CRAFT program during the academic year 2019/2020, 1 h per week as part of their curriculum. Students enrolled in CRAFT-based elective subjects formed the CRAFT (...) program group, while other students represented the control group. The onset of the national lockdown elicited by the COVID-19 pandemic occurred halfway through the program, which was subsequently delivered in an online format. We administered an online survey to explore the effect that the exposure to the CRAFT program had in terms of how participants dealt with various health and well-being concerns arising from the COVID-19 lockdown. There was a significantly higher proportion of proactive participants in the CRAFT program group, 92%, than in the control group, 58%, in terms of implementing practices to improve their health and well-being during the lockdown. Additionally, significantly more participants acknowledged perceived benefits from their practices in the CRAFT program group, 78%, than in the control group, 52%. Among proactive participants, yoga/meditation was the most implemented in the CRAFT program group, followed by exercise, and other yoga/meditation practices, whereas in the control group, exercise and Alexander technique-based practices were the most applied. In the CRAFT program group, the highest rate of perceived benefits was from yoga/meditation CRAFT-based practices, 51%, followed by exercise, 32%, and other yoga/meditation practices, 27%, whereas in the control group, benefits were reported by 29% of exercising participants and 16% for those having practiced the Alexander technique. A similar pattern was observed when excluding participants with previous yoga/meditation experience. This study revealed how participants can independently apply learned skills from the CRAFT program in response to a naturally occurring life event of unprecedented global impact, suggesting that previous exposure to mindfulness and yoga is likely to have a beneficial effect on how young adults react towards exceptionally stressful conditions. (shrink)