Precision medicine research is rapidly taking a lead role in the pursuit of new ways to improve health and prevent disease, but also presents new challenges for protecting human subjects. The extent to which the current “web” of legal protections, including technical data security measures, as well as measures to restrict access or prevent misuse of research data, will protect participants in this context remains largely unknown. Understanding the strength, usefulness, and limitations of this constellation of laws, regulations, and procedures (...) is critical to ensuring not only that participants are protected, but also that their participation decisions are accurately informed. To address these gaps, we conducted in-depth interviews with a diverse group of 60 thought-leaders to explore their perspectives on the protections associated with precision medicine research. (shrink)

To assist in resolving ethical questions surrounding unregulated mHealth research, we conducted in-depth qualitative interviews with experts from four key stakeholder groups: patient/research advocates, researchers, regulatory professionals, and mobile app/device developers. They discussed challenges and potential solutions in the context of two hypothetical scenarios involving unregulated mHealth research, including notifications/permissions for research use of mHealth data, data access procedures, new primary data collection, offering individual research results, and data sharing and dissemination.

Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...) research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance. (shrink)

Neither the range of potential results from genomic research that might be returned to participants nor future uses of stored data and biospecimens can be fully predicted at the outset of a study. Informed consent procedures require clear explanations about how and by whom decisions are made and what principles and criteria apply. To ensure trustworthy research governance, there is also a need for empirical studies incorporating public input to evaluate and strengthen these processes.

In qualitative interviews with a diverse group of experts, the vast majority believed unregulated researchers should seek out independent oversight. Reasons included the need for objectivity, protecting app users from research risks, and consistency in standards for the ethical conduct of research. Concerns included burdening minimal risk research and limitations in current systems of oversight. Literature and analysis supports the use of IRBs even when not required by regulations, and the need for evidence-based improvements in IRB processes.

Researchers now commonly collect biospecimens for genomic analysis together with information from mobile devices and electronic health records. This rich combination of data creates new opportunities for understanding and addressing important health issues, but also intensifies challenges to privacy and confidentiality. Here, we elucidate the “web” of legal protections for precision medicine research by integrating findings from qualitative interviews with structured legal research and applying them to realistic research scenarios involving various privacy threats.

One of the reasons for the disappearance of beauty in the artistic ideology of the late twentieth century has been the seeming similarity of beauty to certain kinds of kitsch. Beauty has also been associated with flawlessness and with glamour. I will content that the flawless and the glamorous are actually categories of kitsch, and that the dominance of these images in marketing has contributed to our societal tendency to confuse them with beauty. The quests for flawlessness and glamour are (...) both self-sabotaging, a premise on which the marketing of beauty depends. These false paradigms of beauty have ob cured the fact that human beauty manifests an ideal of balance and health that is neither self-conscious nor a consequence of deliberate effort. I will defend the relevance of this ideal to beauty to our personal and cultural well-being. (shrink)

BackgroundCommunity engagement in research has gained momentum as an approach to improving research, to helping ensure that community concerns are taken into account, and to informing ethical decision-making when research is conducted in contexts of vulnerability. However, guidelines and scholarship regarding community engagement are arguably unsettled, making it difficult to implement and evaluate.DiscussionWe describe normative guidelines on community engagement that have been offered by national and international bodies in the context of HIV-related research, which set the stage for similar work (...) in other health related research. Next, we review the scholarly literature regarding community engagement, outlining the diverse ethical goals ascribed to it. We then discuss practical guidelines that have been issued regarding community engagement. There is a lack of consensus regarding the ethical goals and approaches for community engagement, and an associated lack of indicators and metrics for evaluating success in achieving stated goals. To address these gaps we outline a framework for developing indicators for evaluating the contribution of community engagement to ethical goals in health research.SummaryThere is a critical need to enhance efforts in evaluating community engagement to ensure that the work on the ground reflects the intentions expressed in the guidelines, and to investigate the contribution of specific community engagement practices for making research responsive to community needs and concerns. Evaluation mechanisms should be built into community engagement practices to guide best practices in community engagement and their replication across diverse health research settings. (shrink)

Tulving posited that the capacity to remember is one facet of a more general capacity—autonoetic consciousness. Autonoetic consciousness was proposed to underlie the ability for “mental time travel” both into the past and into the future to envision potential future episodes . The current study examines whether individual differences can predict autonoetic experience. Specifically, the Zimbardo Time Perspective Inventory was administered to 133 undergraduate students, who also rated phenomenological experiences accompanying autobiographical remembering and episodic future thinking. Scores on two of (...) the five subscales of the ZTPI predicted the degree to which people reported feelings of mentally traveling backward in time and the degree to which they reported re- or pre-experiencing the event, but not ten other rated properties less related to autonoetic consciousness. (shrink)

ABSTRACT Throughout the early modern period, the most widely read astronomical textbooks were Johannes de Sacrobosco's De sphaera and the Theorica planetarum, ultimately in the new form introduced by Georg Peurbach. This essay argues that the images in these texts were intended to develop an “intelligent eye.” Students were trained to transform representations of specific heavenly phenomena into moving mental images of the structure of the cosmos. Only by learning the techniques of mental visualization and manipulation could the student “see” (...) in the mind's eye the structure and motions of the cosmos. While anyone could look up at the heavens, only those who had acquired the intelligent eye could comprehend the divinely created order of the universe. Further, the essay demonstrates that the visual program of the Sphaera and Theorica texts played a significant and hitherto unrecognized role in later scientific work. Copernicus, Galileo, and Kepler all utilized the same types of images in their own texts to explicate their ideas about the cosmos. (shrink)

ABSTRACT Throughout the early modern period, the most widely read astronomical textbooks were Johannes de Sacrobosco's De sphaera and the Theorica planetarum, ultimately in the new form introduced by Georg Peurbach. This essay argues that the images in these texts were intended to develop an “intelligent eye.” Students were trained to transform representations of specific heavenly phenomena into moving mental images of the structure of the cosmos. Only by learning the techniques of mental visualization and manipulation could the student “see” (...) in the mind's eye the structure and motions of the cosmos. While anyone could look up at the heavens, only those who had acquired the intelligent eye could comprehend the divinely created order of the universe. Further, the essay demonstrates that the visual program of the Sphaera and Theorica texts played a significant and hitherto unrecognized role in later scientific work. Copernicus, Galileo, and Kepler all utilized the same types of images in their own texts to explicate their ideas about the cosmos. (shrink)

Childhood sexual, physical, or emotional abuse can result in splitting many aspects of the emotional and rational sides of a person. Commonly the emotions become confused and difficult to name, and the rational side dominates as a survival mechanism. This can be exacerbated by simplistic teaching that suggests people need to choose to act in certain ways and ignore their emotions. Examples of biblical lament provide helpful models of integration between the rational and emotional sides, encouraging the naming of negative (...) emotions before God, turning to God rather than away from God to an abuser. A realistic grasp of forgiveness and repentance enables wounded people to find healing as they work towards integrating emotions, rationality, and spiritual formation. (shrink)

Whether they realize it or not, most stakeholders in the debate about using animals for research agree on the common goal of seeking an end to research that causes animals harm. The central issues in the controversy are about how much effort should be devoted to that goal and when we might reasonably expect to achieve it. Some progress has already been made: The number of animals used for research is about half what it was in the 1970s, and biomedical (...) research has reached the point where we can reasonably begin to envision a time when it could advance without causing harm to animals. With some effort and aggressive development of new biomedical research technologies, full replacement of animals in harmful research is within our grasp. The goal will not be reached all at once, however, and phasing out invasive research on all nonhuman primates should be the priority. (shrink)

Book reviewed in this article: Death and Dignity: Making Choices and Taking Charge. By Timothy E. Quill.

This essay applies the issues raised by Althaus-Reid to feminist theology, the Religious Left, and public policy in the US. Against many feminist theologies, it argues that an idealistic theology of eros has led feminist theologians to ask too much of sex. Particularly in the public arena, sexual ethics should be minimalist, focussing on the prevention of serious public harm and the promotion of sexual and reproductive freedom. The Religious Left, whether under the influence of old Christian anti-sexualism or the (...) newer theologies of eros, has failed to stand for sexual freedom as such and has instead sought to bring abortion rights and gay rights into the realm of sexual decency. The most pernicious example is the Religious Left's tacit acceptance of new public policies that deny women, in particular poor black women, sexual and reproductive freedom outside patriarchal marriage. (shrink)

A fundamental aspect of human beings is that they learn. The process of learning and what is learned are impacted by a number of factors, both cognitive and social; that is, humans are boundedly rational. Cognitive and social limitations interact, making it difficult to reason about how to provide information to impact what humans know, believe, and do. Herein, we use a multi‐agent dynamic‐network simulation system, Construct, to conduct such reasoning. In particular, we ask, What media should be used to (...) provide information to most impact what people know, believe, and do, given diverse social structures? All simulated agents are boundedly rational both at the cognitive and social level, and so are subject to factors such as literacy, education, and the breadth of their social network. We find that there is no one most effective intervention; rather, to be effective, messages and the media used to spread the message need to be selected for the population being addressed. Typically, a multimedia campaign is critical. (shrink)

In this article I show that although biological and neuropsychological factors enable and constrain the construction of music, culture is implicated on every level at which we can indicate an emotion-music connection. Nevertheless, music encourages an affective sense of human affiliation and security, facilitating feelings of transcultural solidarity.

Feminist scholars argue that women generally gain political rights followed by civil and social rights. However, this argument is based on data from North America and Western Europe, and few scholars, if any, have examined the progression of these rights within countries currently undergoing transitions to democracy in different parts of the world. Through in-depth interviews with members of women's organizations in Ghana, the author extends this literature. The findings both contradict and support the prior feminist argument. They indicate that (...) prior to democratization, women focused primarily on social rights to improve their economic well-being. However, new opportunities emerged with the transition, which allowed women to use their political rights to secure more civil and social rights. (shrink)

During the past few years significant progress has been made in our understanding of the structure and function of the proteins involved in eukaryotic DNA replication. Data from several laboratories suggest that, in contrast to prokaryotic DNA replication, two distinct DNA polymerases are required for eukaryotic DNA replication, i.e. DNA polymerase delta for the synthesis of the leading strand and DNA polymerase alpha for the lagging strand. Several accessory proteins analogous to prokaryotic replication factors have been identified and some of (...) these are specific for pol delta whereas others affect both DNA replicases. The replicases and their accessory proteins appear to be highly conserved in eukaryotes, as homologous proteins have been found in species ranging from humans to yeast. (shrink)

In this paper l examine the extent to which Locke’s reIigious and poIiticaI ideoIogy might be considered to exempIify values which have Ied to environmentaI deterioration. In the Two Treatises of Governlnent, Locke appears to hold a view of dominion which compromises humanitarian principles for economic gain. He often asserts that man has a right to accumulate property and to use land and animals for comfort and convenience. This right issues from God’s decree that men subdue the Earth and have (...) dominion over every living thing. Although abuse of the environment appears to be justified in Locke’s political works, I argue that there are many passages in this work that cast doubt on such an interpretation. Further, the view of dominion adopted in Locke's educational work is one of responsible stewardship. On the whole, his view stresses man’s duties and obligation towards all creation. (shrink)

This article examines how women members of contemporary U.S. racist groups reconcile the male-oriented agendas of organized racism with understandings of themselves and their gendered self-interests. Using life history narratives and in-depth interviews, the author examines how women racial activists construct self-understandings that fit agendas of the racist movement and how they reshape understandings of movement goals to fit their own beliefs and life experiences. This analysis situates the political actions of women racists in rational, if deplorable, understandings of self (...) and society. (shrink)

Exploring the connections between autobiography and postmodernism, this book addresses self-representation in a variety of literatures - Native American, British, Chicana, immigrant, and lesbian, among others - in genres as diverse as poetry, naming, confession, photography, and the manifesto. The essays examine how different writers respond to the culturally specific pressures of genre, how these constraints are negotiated, and what self-representation reveals about the politics of identity.

Academia-intelligence agency collaborations are on the rise for a variety of reasons. These can take many forms, one of which is in the classroom, using students to stand in for intelligence analysts. Classrooms, however, are ethically complex spaces, with students considered vulnerable populations, and become even more complex when layering multiple goals, activities, tools, and stakeholders over those traditionally present. This does not necessarily mean one must shy away from academia-intelligence agency partnerships in classrooms, but that these must be conducted (...) carefully and reflexively. This paper hopes to contribute to this conversation by describing one purposeful classroom encounter that occurred between a professor, students, and intelligence practitioners in the fall of 2015 at North Carolina State University: an experiment conducted as part of a graduate-level political science class that involved students working with a prototype analytic technology, a type of participatory sensing/self-tracking device, developed by the National Security Agency. This experiment opened up the following questions that this paper will explore: What social, ethical, and pedagogical considerations arise with the deployment of a prototype intelligence technology in the college classroom, and how can they be addressed? How can academia-intelligence agency collaboration in the classroom be conducted in ways that provide benefits to all parties, while minimizing disruptions and negative consequences? This paper will discuss the experimental findings in the context of ethical perspectives involved in values in design and participatory/self-tracking data practices, and discuss lessons learned for the ethics of future academia-intelligence agency partnerships in the classroom. (shrink)

During the past few years significant progress has been made in our understanding of the structure and function of the proteins involved in eukaryotic DNA replication. Data from several laboratories suggest that, in contrast to prokaryotic DNA replication, two distinct DNA polymerases are required for eukaryotic DNA replication, i.e. DNA polymerase delta for the synthesis of the leading strand and DNA polymerase alpha for the lagging strand. Several accessory proteins analogous to prokaryotic replication factors have been identified and some of (...) these are specific for pol delta whereas others affect both DNA replicases. The replicases and their accessory proteins appear to be highly conserved in eukaryotes, as homologous proteins have been found in species ranging from humans to yeast. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:René Girard and the Rhetoric of ConsumptionKathleen M. Vandenberg (bio)The work of René Girard, so productively applied in so many different fields—in theology, in anthropology, in literature, to name a few—has yet to be recognized or applied in the field of rhetorical studies. Yet there exists, I argue, a need precisely for Girard's theories as the over 2000 year-old discipline enters the twenty-first century.Girard's theory of mimetic or triangular (...) desire can be used as a model for understanding persuasion, because it is, among other things, an "expression of a basic set of ideas on... the dynamics of the self and human relations" (1996, vii). Girard's concern is with human relationships and, in a sense, with how individuals in these relationships act rhetorically upon themselves and others. Girard's mimetic theory hinges on the dynamics of imitation and explains how individuals relate through both the conscious and the unconscious sharing of behaviors, attitudes, and beliefs in certain situations. These situations are clearly rhetorical, as can be seen by examining the definition of the "rhetorical situation" set forth by Lloyd Bitzer, in his seminal 1968 article, "The Rhetorical Situation." Bitzer proposes three conditions that must be met for a rhetorical situation to exist: an exigency or imperfection marked by urgency; a rhetorical audience or an audience that can act; and constraints, or elements that have the power to constrain the decision and action needed to modify the exigency (7). In mass-mediated modern rhetoric, I argue that the exigencies exist externally (in the culture) and internally, the audience is both others and self, and the constraints are the alienation, mystification, and desire generated by hierarchies. Twentieth-century rhetorical theorist Kenneth Burke advises that "we must often think of rhetoric not in terms of some one particular address, but as a general body of identifications that owe their convincingness much more to trivial repetition and dull daily reënforcement than to exceptional rhetorical skill" (1950, 26). Such is the case with this particular form of rhetoric, which is generated and propagated by mimetic contagion and thus is best more narrowly defined as sociological propaganda, a type of propaganda [End Page 259] theorized by Jacques Ellul in Propaganda: The Formation of Men's Attitudes (1975).Ellul, the first to distinguish between political propaganda and sociological propaganda, proposes that the latter encompasses social behaviors "much more vast and less certain" than those of political propaganda (1975, 62). These social behaviors permit the penetration of an ideology in a society, a penetration that is achieved through the active participation of the masses. Sociological propaganda, as Ellul describes it, works from within; it is dependent on the individual's willingness and ability to persuade him- or herself and others. Sociological propaganda, Ellul posits, is created when members of a group behave in such a way as to influence the attitudes, actions, and lifestyles of others; often this behavior is unconscious, unintentional, and spontaneous.In these ways, the rhetoric of sociological propaganda operates in a markedly different fashion than more "traditional" rhetoric, which is largely understood to operate as a unilateral transaction in which an individual orator actively, openly, and orally works to move a relatively passive but physically present audience to act in accordance with the orator's own beliefs through a formally delivered speech. In its reliance on the interaction and cooperation of the many rather than the centrality and dominance of one speaker, in its acceptance of unintentional, spontaneous, and unconscious persuasion, in its dependence on the modern mass media, and in the limitless and nebulous nature of its boundaries in time and space, sociological propaganda constitutes a type of rhetoric heretofore insufficiently addressed by rhetorical studies. Although existing perspectives in rhetorical criticism have certainly addressed some aspects of this rhetoric, sociological propaganda is not easily explained with the terminology of traditional rhetorical criticism or easily approached from traditional rhetorical perspectives.This article asserts that the best way to approach and understand such propaganda is through the perspective of René Girard. Approaching this propaganda from a Girardian perspective permits us to look beyond the symbols of sociological propaganda and analyze our own responsibility in rhetorical... (shrink)