Background Biobank participants often do not understand much of the information they are provided as part of the informed consent process, despite numerous attempts at simplifying consent forms and improving their readability. We report the first assessment of biobank enrollees’ comprehension under an "integrated consent” process, where patients were asked to enroll in a research biobank as part of their normal healthcare experience. A number of healthcare systems have implemented similar integrated consent processes for biobanking, but it is unknown how (...) much patients understand after enrolling under these conditions. Methods: We recruited patients who enrolled in a biobank while in a healthcare setting when receiving ordinary care. We assessed knowledge of consent materials using 11 true/false questions drawn from a well-known biobank knowledge test. After reviewing the results from 114 participants, we revised the consent form and repeated the knowledge assessment with 144 different participants. Results: Participants scored poorly on the knowledge test in both rounds, with no significant differences in overall scores or individual items between the rounds. In Phase 1, participants answered 53% of the questions correctly, 25% incorrectly, and 22% “I don’t know.” In Phase 2, participants answered 53% of questions correctly, 24% incorrectly, and 23% “I don’t know.” Participants scored particularly poorly on questions about data sharing and accessing medical records. Conclusions: Enrollees under an integrated consent model had significant misunderstandings that persisted despite an attempt to improve information specifically about those topics in a consent form. These results raise challenges for current approaches that attribute misunderstanding to overly complex consent forms. They also suggest that the pressures of the clinic may compound other problems with patient understanding of biobank consent. As health systems increasingly blend research and care, they may need to rethink their approach to educating patients about participation in a biobank. (shrink)

Free speech, its many definitions, and efforts by special interest groups to assure their message is distributed have led to sharp conflict and rising tensions, particularly in universities. For over 10 years, tactics at the University of Massachusetts to assure newspaper content acceptable to special interest groups serve as an example in this article. Women editors seeking guaranteed pages in the university newspaper for women with content unreviewed by regular editors illustrates the rocky path of protest, negotiation, and examination and (...) a resulting confusion and dissatisfaction among all parties. (shrink)

This book provides a new interpretation of Hegel's philosophy, arguing that his theory of reason and thinking revolve around the concept of organic life. Through a detailed analysis of Hegel's philosophy and Kant's influence, Karen Ng shows that Hegel's unique contribution is that cognitive capacities are indexed to species capacities, where embodiment and the relation to the environment are central in processes of mind.

The philosophy of Aristotle and its impact on the process of empirical scientific inquiry has been substantial. The influence of the clarity and orderliness of his thinking, when applied to the acquisition of knowledge in nursing, can not be overstated. Traditional empirical approaches have and will continue to have an important influence on the development of nursing knowledge through nursing research. However, as nursing is primarily a practice discipline, the transition from empirical and syllogistic reasoning is problematic. Other types of (...) inquiry are essential in the application of nursing knowledge obtained by empirical scientific approaches and to understand how that knowledge can best be used in the care of patients. This paper reviews the strengths and limitations of syllogistic reasoning by applying it to a recently published study on temperature measurement in nursing. It then discusses possible ways that the empirical knowledge gained from that study and confirmed in its reasoning by logical analysis could be used in the daily care of critically ill patients. It concludes by highlighting the utility of broader approaches to knowledge development, including interpretative approaches and contemporary empiricism, as a way to bridge the gap between factual empirical knowledge and the practical application of that knowledge in everyday clinical nursing practice. (shrink)

Knowing the factors that executives deem critical to governance change can improve our understanding of how such changes come about and can help us evaluate those changes. Interviews with business and finance executives at 11 colleges reveal the importance to governance change of chief executive and board member leadership and interactions, as well as executive communication style. Costs are clear constraints to action, particularly since benefits are not quantified and are difficult to describe. Efforts to discuss governance with internal stakeholders (...) require persistence to overcome narrow, individualized concerns. Communication about governance to external stakeholders is rare and represents a missed opportunity for stakeholder feedback and the development of trust. Executives appear willing to adopt governance forms without considering the idiosyncrasies of their institutional field, limiting the working definition of governance and its potential. For corporations and not‐for‐profit enterprises these findings hold implications for the context in which leadership is exercised and the shape of governance structures. They also pose a fundamental ethical dilemma for leaders to address. (shrink)

We agree with Pickering & Garrod's (P&G's) proposal that dialogue is an important empirical and theoretical test bed for models of language processing. However, we offer two cautionary notes. First, the enterprise will require explicit computational models. Second, such models will need to incorporate both joint and separate speaker and hearer commitments in ways that go beyond priming and alignment.

Evolutionary explanations of pain expression require modeling social adaptations in a context where the role of health professionals as potential caregivers, conflicts with their status as relative strangers. As signals of help elicitation or of alarm, facial pain displays and responses to displays, particularly in the upper face, are expected to conform to this evolutionarily novel clinical context.

Two experiments examined the restriction of referential domains during unscripted conversation by analyzing the modification and online interpretation of referring expressions. Experiment 1 demonstrated that from the earliest moments of processing, addressees interpreted referring expressions with respect to referential domains constrained by the conversation. Analysis of eye movements during the conversation showed elimination of standard competition effects seen with scripted language. Results from Experiment 2 pinpointed two pragmatic factors responsible for restriction of the referential domains used by speakers to design (...) referential expressions and demonstrated that the same factors predict whether addressees consider local competitors to be potential referents during online interpretation of the same expressions. These experiments demonstrate, for the first time, that online interpretation of referring expressions in conversation is facilitated by referential domains constrained by pragmatic factors that predict when addressees are likely to encounter temporary ambiguity in language processing. (shrink)

Within the realm of nano-, bio-, info- and cogno- (or NBIC) technosciences, the ‘power to change the world’ is often invoked. One could dismiss such formulations as ‘purely rhetorical’, interpret them as rhetorical and self-fulfilling or view them as an adequate depiction of one of the fundamental characteristics of technoscience. In the latter case, a very specific nexus between science and technology, or, the epistemic and the constructionist realm is envisioned. The following paper focuses on this nexus drawing on theoretical (...) conceptions as well as empirical material. It presents an overview of different technoscientific ways to ‘change the world’—via contemplation and representation, intervention and control, engineering, construction and creation. It further argues that the hybrid character of technoscience makes it difficult (if not impossible) to separate knowledge production from real world interventions and challenges current science and technology policy approaches in fundamental ways. (shrink)

This collection brings together fourteen contributions by authors from around the globe. Each of the contributions engages with questions about how local and global bioethical issues are made to be comparable, in the hope of redressing basic needs and demands for justice. These works demonstrate the significant conceptual contributions that can be made through feminists' attention to debates in a range of interrelated fields, especially as they formulate appropriate responses to developments in medical technology, global economics, population shifts, and poverty.

In lieu of an abstract, here is a brief excerpt of the content:In Search of a Reality-Based Community:Illusion and Tolerance in Music, Education, and SocietyPatrick K. SchmidtThe two questions that arise in this symposium are: What kind of world engagement is required of music education? and Should music educators participate in political understanding? While my immediate response was and is: How we can afford not to? that is, not to engage fully with the world and not to do so politically, (...) at the same time I also recognize the ways in which that has been problematic in the music education profession. Particularly, in how we continue to experience what I would call events without future: ersatz events made of illusions. Such a proposition is implicated in the following questions: How seriously are we committed to rethinking our practice and re-engaging with our ideals, traditions, visions, and discourses? Has our conception and practice of democracy disappeared (or remained unformed) in the insubstantiality of shadows? How do [End Page 160] we react to political understandings that dismiss the communities in which we live, as well as the singularities and differences that mark us? Who are those of us supposedly living in the/a "reality-based community?"1An aide of the current administration explains the White House stance by saying, "We are an empire now, and when we act, we create our own reality."2 The idea, of course, is that we not only can, but perhaps, must dissociate from such communities (particularly those that do not conform to such envisioned reality). An Empire, one might say, seeks power as well as expansion, confluence as well as stability, tradition as well as ideological certainty. It probably comes as no surprise then, that dictatorial regimes are often more stable, including economically, than new or recalcitrant democracies. (I myself grew up in such a regime in Brazil in the 1970s and early 80s.) The word "Empire" conjures up images that are localized, monocentric, confluent, and institutional. The reality today, however, seems much closer to what Antonio Negri and Richard Hardt portray:3 a reality modeled upon the production of subjects with increasingly similar desires and prone to a certain subservience to commodity and technology. But if this "we" is no longer "us" but an illusion, if this reality-based community no longer distinguishes, questions, problematizes, or engages with its own reality or realities, perhaps more than ever it is time that we began to think politically, that our assumptions and that of others be challenged, and that we seek understandings that, as Randall Allsup has proposed, "are rendered in a world that is contingent, political, and always in motion."Following the model adopted here I will address some of the concepts Estelle Jorgensen proposes, particularly those associated with the notion of supremacy and its propagation through "reductionistic and nationalistic forces." Such a vista will serve as a departing point for my own reflections on the shades, contradictions, complexities, and possibilities we might find when considering majority led silence and voicing, as well as the role of political and empathetic dialogue in our practices, be they professional and/or connected to citizenship.4A Search for the Ethical: Majority Rule?Today, music education as a society negotiates a reality that is more complex and multiple—one of a multitude of one5 —of separation through categories that, while preserving the impression of distinctiveness, allows for a larger invisible and uncontested majority to instill what Alexis de Toqueville called over a century ago the "tyranny of the majority."6 We need to consider here that, as Negri and Hardt propose, there is no one center to this Empire, "no tangible, nuclear element to be identified and/or resisted." This tyrannical majority is paradoxical, for while it dictates it is also silent.7 What is there, then, are spaces in and through which our disengagement allows for the strengthening of what is [End Page 161] perceived and experienced as inevitable, as a faceless majority that controls and decrees, that denies and structures.This tyranny of the majority, the underside of our democratic visions, can lead in politics, as in our professional practices, to a sense of the famous Foucaultian panopticon where total surveillance is... (shrink)

Although databases have been well-defined and thoroughly discussed in the computer science literature, the actual users of databases often have varying definitions and expectations of this essential computational infrastructure. Systems administrators and computer science textbooks may expect databases to be instantiated in a small number of technologies, but there are numerous examples of databases in non-conventional or unexpected technologies, such as spreadsheets or other assemblages of files linked through code. Consequently, we ask: How do the materialities of non-conventional databases differ (...) from or align with the materialities of conventional relational systems? What properties of the database do the creators of these artifacts invoke in their rhetoric describing these systems—or in the data models underlying these digital objects? To answer these questions, we conducted a close analysis of four non-conventional scientific databases. By examining the materialities of information representation in each case, we show how scholarly communication regimes shape database materialities—and how information organization paradigms shape scholarly communication. These cases show abandonment of certain constraints of relational database construction alongside maintenance of some key relational data organization strategies. We discuss the implications that these relational data paradigms have for data use, preservation, and sharing, and discuss the need to support a plurality of data practices and paradigms. (shrink)

In this book, internationally recognized scholars in philosophical hermeneutics discuss various aspects of language and linguisticality. The translations of Hans-Georg Gadamer's two recent essays provoke a preliminary discussion on the philosopher's polemic claim in Truth and Method—"Being that can be understood is language." Topics addressed by the contributors include the relationship of rituals to tradition and the immemorial; the unity of the word; conversation; translation and conceptuality; and the interrelationship between the art of writing and linguisticality. This work is of (...) critical importance to anyone interested in Gadamer's claims regarding the boundaries of language, the transition from the prelinguistic to linguistic realms, and the role of rituals in this transition. (shrink)

Background: Emergency exception to informed consent regulation was introduced to provide a venue to perform research on subjects in emergency situations before obtaining informed consent. For a study to proceed, institutional review boards need to determine if the regulations have been met.Aim: To determine IRB members’ experience reviewing research protocols using emergency exception to informed consent.Methods: This qualitative research used semistructured telephone interviews of 10 selected IRB members from around the US in the fall of 2003. IRB members were chosen (...) as little is known about their views of exception to consent, and part of their mandate is the protection of human subjects in research. Interview questions focused on the length of review process, ethical and legal considerations, training provided to IRB members on the regulations, and experience using community consultation and notification. Content analysis was performed on the transcripts of interviews. To ensure validity, data analysis was performed by individuals with varying backgrounds: three emergency physicians, an IRB member and a layperson.Results: Respondents noted that: emergency exception to informed consent studies require lengthy review; community consultation and notification regulations are vague and hard to implement; current regulations, if applied correctly, protect human subjects; legal counsel is an important aspect of reviewing exception to informed-consent protocols; and IRB members have had little or no formal training in these regulations, but are able to access materials needed to review such protocols.Conclusions: This preliminary study suggests that IRB members find emergency exception to informed consent studies take longer to review than other protocols, and that community consultation and community notification are the most difficult aspect of the regulations with which to comply but that they adequately protect human subjects. (shrink)

Abstract25.6 Million people in the United States have Limited English Proficiency (LEP), defined as insufficient ability to read, write, or understand English. We will (1) Delineate the merits of approaching language as a social determinant of health, (2) highlight pertinent public health values and guidelines which are most relevant to the plight of populations with LEP and (3) Use the COVID-19 pandemic as an example of how a breakdown in public health ethics values created harm for populations and patients with (...) LEP. We define a framework to tease out public health responsibilities given some populations’ limited proficiency in a society’s predominant language. The American Public Health Association (APHA) public health ethics core values serve as a framework to interrogate current practices. We use the COVID-19 case to illustrate gaps between health policy and healthcare disparities experienced by populations with LEP. (shrink)

These three reflections look at the theological and ethical implications of sexual violence in light of the attention brought by #MeToo. The first explores ethnographic interviews which indicate that Church leaders, teachers, and parents contribute to rape culture by leaving sexual violence unaddressed in Christian sexual education, arguing that it must be reconstructed to eliminate the Church’s participation in a culture that promotes gender-based violence. The second notes that feminist scholarship has made the case that rape and “unjust sex” are (...) associated with what is considered acceptable heterosexuality, require the category of “cultural sin” to account for the social responsibility of persons. Finally, the third explores how a feminist political theological ethics of “dangerous memory” is required to critique of the structures and systems that violate women’s selves and bodies. (shrink)

There are broad and narrow senses of hermeneutic application as well as of hermeneutic praxis. The broad sense of hermeneutic application means using what one has already understood in some later situation. Hermeneutic praxis in the narrow sense refers to an interpreter using a hermeneutic theory to interpret written or spoken language. The narrow sense of hermeneutic application is discussed by Hans‐Georg Gadamer in Truth and Method as the central problem of philosophical hermeneutics. Friedrich Schleiermacher had noted that the lax (...) practice of hermeneutics, which had been previously the main form of hermeneutics, assumes that understanding usually succeeds and that interpretation is only called for in difficult cases where misinterpretation might occur. Usually, after one has understood, interpreted, and applied an order to the concrete situation, one would carry out that order as it was understood. This action that follows from understanding is hermeneutic praxis in the broad sense. (shrink)

BackgroundIn specific situations it may be necessary to make an exception to the general rule of informed consent for scientific research with an intervention. Earlier reviews only described subsets of arguments for exceptions to waive consent.MethodsHere, we provide a more extensive literature review of possible exceptions to the rule of informed consent and the accompanying arguments based on literature from 1997 onwards, using both Pubmed and PsycINFO in our search strategy.ResultsWe identified three main categories of arguments for the acceptability of (...) a consent waiver: data validity and quality, major practical problems, and distress or confusion of participants. Approval by a medical ethical review board always needs to be obtained. Further, we provide examples of specific conditions under which consent waiving might be allowed, such as additional privacy protection measures.ConclusionsThe reasons legitimized by the authors of the papers in this overview can be used by researchers to form their own opinion about requesting an exception to the rule of informed consent for their own study. Importantly, rules and guidelines applicable in their country, institute and research field should be followed. Moreover, researchers should also take the conditions under which they feel an exception is legitimized under consideration. After discussions with relevant stakeholders, a formal request should be sent to an IRB. (shrink)

This study explores the impact of both individual ethics (IE) and organizational ethics (OE) on ethical intention (EI). Ethical intention, or the individual's intention to engage in ethical behavior, is useful as a dependent variable because it relates to behavior which can be an expression of values, but also is influenced by organizational and societal variables. The focus is on EI in international business decision-making, since the international context provides great latitude in making ethical decisions. Results demonstrate that both IE (...) and OE influence EL Ethical congruence is also discussed as a positive influence. Younger managers are more influenced by OE than older managers. The findings call for creating governance mechanisms to enhance ethical congruence, thereby increasing the likelihood of managers making ethical choices in organizational decision-making. (shrink)