In their article, “The Rise of Citizen Science in Health and Biomedical Research,” Wiggins and Wilbanks (2019) discuss the rising role of a variety of traditional and newer citizen science models i...

BackgroundAwareness of aging brings to light one’s own perceived behavioral, physical, and cognitive changes associated with getting older. Personality and physical illness are each related to two components of awareness of aging: attitudes toward own aging, and awareness of age-related changes. Here, we move beyond main effects to examine how personality and arthritis interact with respect to awareness of aging.Materials and Methods296 participants completed online self-report questionnaires of personality, arthritis, ATOA, and AARC gains and losses.ResultsWe ran three hierarchical multiple regression (...) models to test how personality traits and arthritis interacted to predict ATOA, AARC gains, and AARC losses, respectively. Higher extraversion was related to positive ATOA, and higher openness was related to positive ATOA and more AARC gains. Higher neuroticism was related to negative ATOA, more AARC losses, and less AARC gains. We found a main effect for arthritis, where those with arthritis reported more AARC losses. Lastly, we found a significant interaction between arthritis and agreeableness when predicting AARC gains. Among those with low agreeableness, people with arthritis reported significantly more AARC gains compared to those without arthritis.ConclusionPersonality and arthritis are each important for awareness of aging. Overall, our study suggests that for those with arthritis, it is especially important to consider behavioral and cognitive factors related to agreeableness, as they may be important means of promoting positive views on aging. (shrink)

Meaningful relationships are centrally important for human functioning. It remains unclear, however, which aspects of meaningful relationships impact wellbeing the most and whether these differ between psychiatric patients and members of the community. Information about relationship attributes and functions were collected in community members and psychiatric patients. Relationship attributes and functions were examined for differences between groups, their impact on wellbeing and symptoms, and the size of network. Community members reported fewer relationships, higher frequency of contact and less desire for (...) change when compared to the psychiatric patients. Nevertheless, both groups reported relatively high levels of fulfilled functions. Quality of the relationship and investment into the relationship was associated with both wellbeing and symptoms for both the community and the patient group. Almost all functions were associated with wellbeing and symptoms for the community group. However, for the patient group, only few functions were associated with wellbeing and no functions were associated with symptoms. Contrary to our hypotheses, the results show that psychiatric patients do not have a deficit in fulfilling relationships. Most people report a well-functioning network of meaningful, high-quality relationships. Patients benefit from meaningful, function-fulfilling relationships just as much as community members. Results are discussed with respect to how targeting relationships can be used clinically. (shrink)

Two eleven-year-old boys face a bulletin board, arranging silver thumbtacks into shapes of fighter planes. They have arrived early for an after-school puppet workshop. Both boys are under five feet tall: the thin one sports a green terrycloth wristband and a big fro. “The girls like the poof,” he says. The other boy has a fuller body, a haircut similar to the Fab Four in the late sixties, and wears wide-leg jeans and a red t-shirt that brushes his kneecaps. The (...) boys talk while puncturing the corkboard with tacks. I like this game. It’s Star Miner. There’s this thing. It’s a ship that looks like this. The other ships are too detailed. You try and blow up a jet thingy, it spirals and can catch on .. (shrink)

The highly homologous Rac1 and Rac2 GTPases are co‐expressed in cells of haematopoietic origin and are likely to show some functional redundancy. While disruption of the Rac2 gene in mice has provided insight into some of its functions, Rac1 null mice are embryonic lethal and only recently has conditional gene disruption been possible. Consequently, two articles1,2 have recently elucidated some overlapping and unique key roles of Rac1 and Rac2 in haematopoietic processes including specialized roles in innate and humoral immunity. BioEssays (...) 26:221–224, 2004. © 2004 Wiley Periodicals, Inc. (shrink)

The authors would like to make the corrections to the original article described below.

Gleason-type theorems derive the density operator and the Born rule formalism of quantum theory from the measurement postulate, by considering additive functions which assign probabilities to measurement outcomes. Additivity is also the defining property of solutions to Cauchy’s functional equation. This observation suggests an alternative proof of the strongest known Gleason-type theorem, based on techniques used to solve functional equations.

Social and structural inequities shape health and illness; they are an everyday presence within the doctor-patient encounter yet, there is limited ethical guidance on what individual physicians should do. This paper draws on a study that explored how doctors and their professional associations ought to respond to the issue of social health inequities.

This paper examines the discursive construction of collective identity in several feminist organizations, as a way of shedding new light on the debate over essentializing or totalizing terms in contemporary feminist/postmodernist theory. We argue that while this debate is about language, it has remained largely untouched by the insights of a discursive approach. The latter as we take it up here treats language as irremediably strategic or interested. In contrast, the feminist argument over essentializing terms appears to hold to a (...) correspondence version of language, a position which limits the debate in fatal ways. Part 1 reviews the argument that terms such as women, feminist and feminist identity are essentializing discourses which dominate by silencing difference. Part 2 then considers the way one such concept – feminist identity – is actually constructed and used in the routine talk of members of feminist organizations. In Part 3 we draw out the implications of a discursive approach to such terms for the feminist/postmodernist debate. (shrink)

Public and government outrage over recent tax fraud and tax shelter cases led to significant changes in the preparer penalty laws under the Small Business Work Opportunity Act of 2007. This study experimentally examines the effectiveness of the revised preparer penalty provisions at reducing tax preparer aggressiveness. Specifically, we examine the impact of two significant components of the changes to the preparer penalty provisions - the increase in penalty amount and the increase in the likelihood of sustaining the tax position (...) required to avoid penalty imposition (required likelihood threshold) - on tax preparers’ willingness to (1) recommend an uncertain position and (2) sign a tax return containing an aggressive position. The results suggest that both the increase in penalty amount and the increase in required likelihood threshold reduce tax preparers’ willingness to recommend an uncertain position and/or sign a tax return containing an aggressive position. Of the two components, the results indicate that the increase in required likelihood threshold is more effective at reducing tax preparer aggressiveness than the increase in penalty amount. Congress may want to rethink its recent decision to reduce the required likelihood threshold for many of the decisions that tax preparers make with their clients. (shrink)

Current UK legislation is impacting upon the feasibility and cost-effectiveness of medical record-based research aimed at benefiting the NHS and the public heath. Whereas previous commentators have focused on the Data Protection Act 1998, the Health and Social Care Act 2001 is the key legislation for public health researchers wishing to access medical records without written consent. The Act requires researchers to apply to the Patient Information Advisory Group for permission to access medical records without written permission. We present a (...) case study of the work required to obtain the necessary permissions from PIAG in order to conduct a large scale public health research project. In our experience it took eight months to receive permission to access basic identifying information on individuals registered at general practices, and a decision on whether we could access clinical information in medical records without consent took 18 months. Such delays pose near insurmountable difficulties to grant funded research, and in our case £560 000 of public and charitable money was spent on research staff while a large part of their work was prohibited until the third year of a three year grant. We conclude by arguing that many of the current problems could be avoided by returning PIAG’s responsibilities to research ethics committees, and by allowing “opt-out” consent for many public health research projects. (shrink)

Frequent public uproar over forms of data science that rely on information about people demonstrates the challenges of defining and demonstrating trustworthy digital data research practices. This paper reviews problems of trustworthiness in what we term pervasive data research: scholarship that relies on the rich information generated about people through digital interaction. We highlight the entwined problems of participant unawareness of such research and the relationship of pervasive data research to corporate datafication and surveillance. We suggest a way forward by (...) drawing from the history of a different methodological approach in which researchers have struggled with trustworthy practice: ethnography. To grapple with the colonial legacy of their methods, ethnographers have developed analytic lenses and researcher practices that foreground relations of awareness and power. These lenses are inspiring but also challenging for pervasive data research, given the flattening of contexts inherent in digital data collection. We propose ways that pervasive data researchers can incorporate reflection on awareness and power within their research to support the development of trustworthy data science. (shrink)

The class forcing theorem, which asserts that every class forcing notion ${\mathbb {P}}$ admits a forcing relation $\Vdash _{\mathbb {P}}$, that is, a relation satisfying the forcing relation recursion—it follows that statements true in the corresponding forcing extensions are forced and forced statements are true—is equivalent over Gödel–Bernays set theory $\text {GBC}$ to the principle of elementary transfinite recursion $\text {ETR}_{\text {Ord}}$ for class recursions of length $\text {Ord}$. It is also equivalent to the existence of truth predicates for the (...) infinitary languages $\mathcal {L}_{\text {Ord},\omega }$, allowing any class parameter A; to the existence of truth predicates for the language $\mathcal {L}_{\text {Ord},\text {Ord}}$ ; to the existence of $\text {Ord}$ -iterated truth predicates for first-order set theory $\mathcal {L}_{\omega,\omega }$ ; to the assertion that every separative class partial order ${\mathbb {P}}$ has a set-complete class Boolean completion; to a class-join separation principle; and to the principle of determinacy for clopen class games of rank at most $\text {Ord}+1$. Unlike set forcing, if every class forcing notion ${\mathbb {P}}$ has a forcing relation merely for atomic formulas, then every such ${\mathbb {P}}$ has a uniform forcing relation applicable simultaneously to all formulas. Our results situate the class forcing theorem in the rich hierarchy of theories between $\text {GBC}$ and Kelley–Morse set theory $\text {KM}$. (shrink)

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)

Background: Personal genomic testing (PGT) offers individuals genetic information about relationships, wellness, sporting ability, and health. PGT is increasingly accessible online, including in emerging markets such as Australia. Little is known about what consumers expect from these tests and whether their reflections on testing resonate with bioethics concepts such as autonomy. Methods: We report findings from focus groups and semi-structured interviews that explored attitudes to and experiences of PGT. Focus group participants had little experience with PGT, while interview participants had (...) undergone testing. Recordings were transcribed and analyzed using thematic analysis. Findings were critically interpreted with reference to bioethics scholarship on autonomy. Results: Fifty-six members of the public participated in seven focus groups, and 40 individuals were interviewed separately. Both groups valued the choice of PGT, and believed that it could motivate relevant actions. Focus group themes centered on the perceived value of choices, knowledge enabling action and knowledge about the self. Interview themes suggest that participants reflexively engage with their PGT information to make meaning, and that some appreciate its shortcomings. Critical interpretation of findings shows that while consumers of PGT are able to exercise a degree of autonomy in choosing, they may not be able to achieve a substantive conceptualization of autonomy, one that promotes alignment with higher-order desires. Conclusions: PGT consumers can critically reason about testing. However, they may uncritically accept test results, may not appreciate drawbacks of increased choice, or may overestimate the potential for information to motivate behavioral change. While consumers appear to be capable of substantive autonomy, they do so without ongoing support from companies. PGT companies promote a problematic (“default”) account of autonomy, reliant on empowerment rhetoric. This leaves consumers vulnerable to making decisions inconsistent with their higher-order desires. As PGT expands, claims about its power and value need to be carefully drawn. (shrink)

Healthcare priority-setting institutions have good reason to want to demonstrate that their decisions are morally justified—and those who contribute to and use the health service have good reason to hope for the same. However, finding a moral basis on which to evaluate healthcare priority-setting is difficult. Substantive approaches are vulnerable to reasonable disagreement about the appropriate grounds for allocating resources, while procedural approaches may be indeterminate and insufficient to ensure a just distribution. In this paper, we set out a complementary, (...) coherence-based approach to the evaluation of healthcare priority-setting. Drawing on Rawls, we argue that an institutional priority-setter’s claim to moral justification can be assessed, in part, based on the extent to which its many normative commitments are mutually supportive and free from dissonance; that is, on the ability to establish narrow reflective equilibrium across the normative content of a priority-setter’s policy and practice. While we do not suggest that the establishment of such equilibrium is sufficient for moral justification, we argue that failure to do so might—like the proverbial canary in the coalmine—act as a generalised warning that something is awry. We offer a theoretical argument in support of this view and briefly outline a practical method for systematically examining coherence across priority-setting policy and practice. (shrink)

Salespeople have long been considered unique employees. They tend to work apart from each other and experience little daily contact with supervisors and other organizational employees. Additionally, salespeople interact with customers in an increasingly complex and multifunctional environment. This provides numerous opportunities for unethical behavior which has been chronicled in the popular press as well as academic research. Much of the research in sales ethics has relied on conceptual foundations which focus on individual and organizational influencers on ethical decision making. (...) While significant, contributors to this research suggest that alternative theoretical perspectives and methods of investigation should be utilized and call for more research on the status of professional selling as a whole. We answer this call by exploring an alternative and complementary perspective based on the theory of occupational choice, social learning, and work groups to gain insight on how the sales profession evolves as its own subculture that extends beyond individual and organizational boundaries. First, we discuss the characteristics of the sales profession and empirically examine the relationship between typical individual and organizational factors and sales professionals’ perceptions of ethical behavior. Second, we offer a theoretical explanation that our findings may be due to how salespeople choose and are socialized into the subculture of the sales profession. Third, we examine this theoretical perspective via qualitative in-depth interviews with experienced sales professionals. Results and implications are discussed in terms of a sales profession code of ethics and future research directions. (shrink)

The devotion of a full article in the Paris Agreement to loss and damage was a major breakthrough for the world’s most vulnerable nations seeing to gain support for climate impacts beyond what can be adapted to. But how will loss and damage be paid for, and who will pay it? Will ethics be part of this decision? Here we ask what are the possible means of raising predictable and adequate levels of funding to address loss and damage? Utilizing a (...) framework developed by Marco Grasso, we argue that making the ethical connections between addressing climate impacts and finance mechanisms could significantly enhance their likelihood of being adopted. We briefly review insurance mechanisms and catastrophe bonds, and then move on to six “innovative finance” approaches to funding loss and damage. We utilize six criteria in assessing them: adequacy, predictability, technical feasibility, fairness, and indirect effects, and whether each has a clear link to loss and damage. Several mechanisms for gathering funds emerged as most promising. Three of the six financial mechanisms we reviewed to raise funding involved airline transport: clearly, there is a huge opportunity to tax this sector in one form or another, in recognition of airline emissions’ role in creating losses and damages in vulnerable nations from sea level rise, droughts, floods or hurricanes. Funding loss and damage response is a contentious issue that will get only more unwieldy if Parties’ conceptions of loss and damage are at odds: a common definition of loss and damage needs to be agreed upon under the UNFCCC. Most immediately, to meet any equity criteria, wealthy countries should do more to support the premiums of those who cannot afford insurance. (shrink)

It is commonplace to say that the modern economy is knowledge based but a moment’s reflection points to the vacuity of this notion. For all economies are knowledge based and could not be otherwise. The question is rather how is one kind of knowledge based economy to be distinguished from another? This essay proposes that the answer may lie in three directions: (1) in terms of the variety of knowledge that is engaged; (2) in terms of the processes by which (...) the production of knowledge is organised, and its corollary the resources devoted to knowledge production and dissemination; and, (3) in terms of the purposes to which knowledge is put. In respect of each of these dimensions, the rise of the modern university as a custodian of knowledge in Western economy and society has been of central importance; but universities are not alone in this role, a wide range of other agencies, private firms, public research laboratories for instance play an important role in defining a knowledge economy and have done so increasingly since the turn of the nineteenth century—a first indication of the systemic dimensions of a modern knowledge economy. (shrink)

Current UK legislation is impacting upon the feasibility and cost-effectiveness of medical record-based research aimed at benefiting the NHS and the public heath. Whereas previous commentators have focused on the Data Protection Act 1998, the Health and Social Care Act 2001 is the key legislation for public health researchers wishing to access medical records without written consent. The Act requires researchers to apply to the Patient Information Advisory Group for permission to access medical records without written permission. We present a (...) case study of the work required to obtain the necessary permissions from PIAG in order to conduct a large scale public health research project. In our experience it took eight months to receive permission to access basic identifying information on individuals registered at general practices, and a decision on whether we could access clinical information in medical records without consent took 18 months. Such delays pose near insurmountable difficulties to grant funded research, and in our case £560 000 of public and charitable money was spent on research staff while a large part of their work was prohibited until the third year of a three year grant. We conclude by arguing that many of the current problems could be avoided by returning PIAG’s responsibilities to research ethics committees, and by allowing “opt-out” consent for many public health research projects. (shrink)

As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a gradual shift towards a more participatory-patient model in Japan. With advances in technology, the possibility to use digital technologies to improve patient interactions is growing and is in line with changing attitudes in the medical profession and society within Japan and elsewhere. The implementation of an online patient engagement platform (...) is being considered by the Myotonic Dystrophy Registry of Japan. The aim of this exploratory study was to understand patients’ views and attitudes to using digital tools in patient registries and engagement with medical research in Japan, prior to implementation of the digital platform. We conducted an exploratory, cross-sectional, self-completed questionnaire with a sample of myotonic dystrophy patients attending an Open Day at Osaka University, Japan. Patients were eligible for inclusion if they were 18 years or older, and were diagnosed with MD. A total of 68 patients and family members attended the Open Day and were invited to participate in the survey. Of those, 59 % submitted a completed questionnaire. The survey showed that the majority of patients felt that they were not receiving the information they wanted from their clinicians, which included recent medical research findings and opportunities to participate in clinical trials, and 88 % of patients indicated they would be willing to engage with digital technologies to receive relevant medical information. Patients also expressed an interest in having control over when and how they received this information, as well as being informed of how their data is used and shared with other researchers. Overall, the findings from this study suggest that there is scope to develop a digital platform to engage with patients so that they can receive information about medical care and research opportunities. While this study group is a small, self-selecting population, who suffer from a particular condition, the results suggest that there are interested populations within Japan that would appreciate enhanced communication and interaction with healthcare teams. (shrink)

Researchers from diverse disciplines, including organismal and cellular physiology, sports science, human nutrition, evolution and ecology, have sought to understand the causes and consequences of the surprising variation in metabolic rate found among and within individual animals of the same species. Research in this area has been hampered by differences in approach, terminology and methodology, and the context in which measurements are made. Recent advances provide important opportunities to identify and address the key questions in the field. By bringing together (...) researchers from different areas of biology and biomedicine, we describe and evaluate these developments and the insights they could yield, highlighting the need for more standardisation across disciplines. We conclude with a list of important questions that can now be addressed by developing a common conceptual and methodological toolkit for studies on metabolic variation in animals. (shrink)

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....

The objective of this paper is to explore the problem of human sacrifice in Euripides’ tragedy Iphigenia among the Taurians. Although the archaeological surveys indicate that this type of sacrifices was not practiced in archaic and classical Greece, we find them repeatedly in Greek literature, in general, and more especially in the tragic genre, of which this work is a finished example. In this sense, we will focus our study on the role of allusions and references to human sacrifice in (...) the tragedy, especially within the prologue, since we understand that it constitutes a central issue to the plot, as not only it relates to Iphigenia's past but also conforms a constant threat to the other characters. (shrink)

Cultural safety is a relatively new concept that has emerged in the New Zealand nursing context and is being taken up in various ways in Canadian health care discourses. Our research team has been exploring the relevance of cultural safety in the Canadian context, most recently in relation to a knowledge-translation study conducted with nurses practising in a large tertiary hospital. We were drawn to using cultural safety because we conceptualized it as being compatible with critical theoretical perspectives that foster (...) a focus on power imbalances and inequitable social relationships in health care; the interrelated problems of culturalism and racialization; and a commitment to social justice as central to the social mandate of nursing. Engaging in this knowledge-translation study has provided new perspectives on the complexities, ambiguities and tensions that need to be considered when using the concept of cultural safety to draw attention to racialization, culturalism, and health and health care inequities. The philosophic analysis discussed in this paper represents an epistemological grounding for the concept of cultural safety that links directly to particular moral ends with social justice implications. Although cultural safety is a concept that we have firmly positioned within the paradigm of critical inquiry, ambiguities associated with the notions of 'culture', 'safety', and 'cultural safety' need to be anticipated and addressed if they are to be effectively used to draw attention to critical social justice issues in practice settings. Using cultural safety in practice settings to draw attention to and prompt critical reflection on politicized knowledge, therefore, brings an added layer of complexity. To address these complexities, we propose that what may be required to effectively use cultural safety in the knowledge-translation process is a 'social justice curriculum for practice' that would foster a philosophical stance of critical inquiry at both the individual and institutional levels. (shrink)

The astonishing growth of the Internet coupled with its unique capabilities has captured the attention of the marketing community. Although many businesses are acknowledging the importance of a Web site, to date, little attention has been given to the business community'sperceptions of the ethicality of this new medium. A national sample of marketing executives was surveyed regarding their perceptions of: (1) regulation of the Internet, (2) the potential ethical issues via Internet marketing facing their industry, and (3) the role of (...) ethics and Internet marketing in their organization. Results and recommendations for incorporating Internet ethical guidelines into organizations are discussed. (shrink)

The idea that the self is inextricably intertwined with the rest of the world—the “oneness hypothesis”—can be found in many of the world’s philosophical and religious traditions. Oneness provides ways to imagine and achieve a more expansive conception of the self as fundamentally connected with other people, creatures, and things. Such views present profound challenges to Western hyperindividualism and its excessive concern with self-interest and tendency toward self-centered behavior. This anthology presents a wide-ranging, interdisciplinary exploration of the nature and implications (...) of the oneness hypothesis. While fundamentally inspired by East and South Asian traditions, in which such a view often is critical to philosophical approach, this collection draws upon religion, psychology, and Western philosophy, as well as sociology, evolutionary theory, and cognitive neuroscience. Contributors trace the oneness hypothesis through the works of East Asian and Western thinkers and traditions, including Confucianism. Mohism, Daoism, Buddhism, Platonism, Zhuangzi, Kant, James, and Dewey. They intervene in debates over ethics, cultural difference, identity, group solidarity, and the positive and negative implications of metaphors of organic unity. Challenging dominant traditional views that presume the proper scope of the mind stops at the boundaries of the skin and skull, The Oneness Hypothesis shows that a more relational conception of the self is not only consistent with contemporary science but has the potential to lead to greater happiness and well-being for both individuals and the larger wholes of which they are parts. (shrink)