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.

© 2015, Springer-Verlag Berlin Heidelberg.Genetic studies have identified single nucleotide polymorphisms associated with the risk of prostate cancer. It remains unclear whether such genetic variants are associated with disease aggressiveness. The NCI-SPORE Genetics Working Group retrospectively collected clinicopathologic information and genotype data for 36 SNPs which at the time had been validated to be associated with PC risk from 25,674 cases with PC. Cases were grouped according to race, Gleason score and aggressiveness. Statistical analyses were used to compare the frequency (...) of the SNPs between different disease cohorts. After adjusting for multiple testing, only PC-risk SNP rs2735839 was significantly and inversely associated with aggressive and high-grade disease in European men. Similar associations with aggressive and high-grade disease were documented in African-American subjects. The G allele of rs2735839 was associated with disease aggressiveness even at low PSA levels in both European and African-American men. Our results provide further support that a PC-risk SNP rs2735839 near the KLK3 gene on chromosome 19q13 may be associated with aggressive and high-grade PC. Future prospectively designed, case-case GWAS are needed to identify additional SNPs associated with PC aggressiveness. (shrink)

The concept of a relational self has been prominent in feminism, communitarianism, narrative self theories, and social network theories, and has been important to theorizing about practical dimensions of selfhood. However, it has been largely ignored in traditional philosophical theories of personal identity, which have been dominated by psychological and animal theories of the self. This book offers a systematic treatment of the notion of the self as constituted by social, cultural, political, and biological relations. The author's account incorporates practical (...) concerns and addresses how a relational self has agency, autonomy, responsibility, and continuity through time in the face of change and impairments. This cumulative network model of the self incorporates concepts from work in the American pragmatist and naturalist tradition. The ultimate aim of the book is to bridge traditions that are often disconnected from one another--feminism, personal identity theory, and pragmatism--to develop a unified theory of the self. (shrink)

The AI and Society discourse has previously drawn attention to the ways that digital systems embody the values of the technology development community from which they emerge through the development and deployment process. Research shows how this effect leads to a particular treatment of gender in computer systems development, a treatment which lags far behind the rich understanding of gender that social studies scholarship reveals and people across society experience. Many people do not relate to the narrow binary gender options (...) of male or female, and many people express their gender identity in much richer ways than the sex/gender binary female/woman and male/man Boolean terms will allow. We ask: are “born-digital” gendered datasets in digital systems experienced as marginalising by those who express their identity beyond the male/female binary? Case Study: Ireland. To answer this universal question, this paper presents the findings of an empirical case study of people in Ireland with diverse gender identities and expressions, and their experiences with public data systems and new technologies. In spite of great social changes in Ireland which have led to constitutional change in favour of LGBTQI + people, born-digital systems were experienced by respondents as embodying socio-cultural values which were no longer accepted in society at large. For many of the respondents, digital technologies routinely marginalise them in all kinds of ways. These systems keep alive violence and oppression long after civil rights have been enshrined in constitutional law. This study is just one example of the way assumptions about digital are disengaged from society-at-large. It is a call to arms to all who are passionate about socially-responsible technology. (shrink)

The article analyses recent works by Giorgio Agamben and Eric Santner, who have interpreted Carl Schmitt’s ideas in the context of left-wing political theology. The article traces how the figure of the undead Muslim recurs in the various philosophers and theologians referred to by these two authors. In this way, it shows how contemporary messianic thinkers unknowingly mourned their ‘dead neighbours’, traumatic irritants from which a messianic pearl was born. In order for this pearl to glow with a miraculous light (...) (as Agamben and Santner would wish it to), modern thinking must engage in an act of neighbour-love, whereby it embraces the untimely, undead excarnations (disembodiments) of a history of typological damage. Otherwise, these traumatised and traumatising neighbours remain undead, driven by critical theories of sovereignty. (shrink)

Initiatives to encourage more women in STEM-related industries have had mixed results. Adding more women to longstanding male-dominated STEM occupations has highlighted issues in workplace culture that are hostile to women. In this case, the CEO of an engineers' professional association, NSE, is accused of making a sexually suggestive remark to two female engineers at the annual convention. One of the women, Claire, lodged a complaint with the board. After reviewing the investigation report, the board voted to ask the CEO (...) to quietly apologize to both women. Claire, in the meantime, posted a negative review of the NSE's handling of her complaint which is getting considerable media attention. The purpose of this case is for students to examine the competing interests NSE faces in promoting the safety of female members, protecting its reputation for advancing the profession and women in engineering and supporting an otherwise “brilliant CEO”. (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)

The debate about the use of robots in the care of older adults has often been dominated by either overly optimistic visions (coming particularly from Japan), in which robots are seamlessly incorporated into society thereby enhancing quality of life for everyone; or by extremely pessimistic scenarios that paint such a future as horrifying. We reject this dichotomy and argue for a more differentiated ethical evaluation of the possibilities and risks involved with the use of social robots. In a critical discussion (...) surrounding the capabilities approach to the ethical evaluation of quality of life, we develop an ethical framework that is more appropriate to the situation of the oldest old. We urge employment of a context-dependent approach to the ethical evaluation of new technologies in the care and therapy of older adults, and using the example of the robotic seal Paro, we show how this can be accomplished in a sensible and practical way. (shrink)

Anonymity is a form of nonidentifiability which I define as noncoordinatability of traits in a given respect. This definition broadens the concept, freeing it from its primary association with naming. I analyze different ways anonymity can be realized. I also discuss some ethical issues, such as privacy, accountability and other values which anonymity may serve or undermine. My theory can also conceptualize anonymity in information systems where, for example, privacy and accountability are at issue.

Contents: LEGAL THEORY 1. Reflections on law in context / William Twining -- 2. Are omissions less culpable? / Tony Honore -- 3. Scandinavian legal realism in the law of contract / Jan Hellner -- 4. Statutes and contracts as founts of formal reasoning / Robert S. Summers -- 5. Conceptions of public policy / John Bell LEGAL HISTORY 6. Aftermath / Paul D. Carrington -- 7. The role of the judiciary: lessons from the end of empire / Robert Stevens (...) -- 8. The Origins of futures trading in the Liverpool Cotton Market COMMON LAW 9.payment undertakings / Roy Goode -- 10. Pre-contractual duties of disclosure / S.M. Waddams -- 11. Three problems with the new product liability / Jane Stapleton -- 12. Evaluating the goals of personal injury law: some empirical evidence / Donald Harris -- 13. Negligence and economic loss / John Dwyer -- 14. Libel and constitutional free speech / John Fleming -- 15. The basis of tortious liability / Peter Cane. (shrink)

Modern societies have reconciled the dilemma between self-interest and caring for others by dividing women and men into different moral categories. Women have been expected to seek personal development by caring for others, while men care for others by sharing the rewards of their independent work achievements. Changes in work and family life have undermined this framework but have failed to offer a clear avenue for creating new resolutions. Instead, contradictory social changes have produced new moral dilemmas. Women must now (...) seek economic self-sufficiency even as they continue to bear responsibility for the care of others. Men can reject the obligation to provide for others, but they face new pressures to become more involved fathers and partners. Facing these dilemmas, young women and men must develop innovative moral strategies to renegotiate work-family conflicts and transform traditional views of gender, but persisting institutional obstacles thwart their emerging aspirations to balance personal autonomy with caring for others. To overcome these obstacles, we need to create more humane, less gendered theoretical and social frameworks for understanding and apportioning moral obligation. (shrink)

Nietzsche's Zarathustra is a guide through the convoluted territory of Nietzsche's Thus Spoke Zarathustra. It shows the philosophical significance of the fictional format as a means to simultaneously propose alternatives to traditional dogmas within the Western tradition and reveal the danger of mistaking doctrinal formulations for living philosophical insight.

Support for the prototype theory of categorization was found in a study of the structure of social categories. Though occupational terms such as DOCTOR are socially defined, they do not have the classical structure their clear definitional origins would predict. Conceptions of social categories are richer and more complex than those of physical object categories and subjects agree upon them. Comparison of various instructions for eliciting attributes of categories showed that whether subjects are asked to define a term, give characteristics, (...) or describe ways they recognize members of categories, the attributes they list contribute to a prototype structure. These data provide evidence against the view that prototype structure is relevant only to an identification procedure and not to the core of concepts, as has been suggested. (shrink)

Ethical issues arise for nurses involved in all phases of clinical trials regardless of whether they are caregivers, research nurses, trial co-ordinators or principal investigators. Potential problem areas centre on nurses’ moral obligation related to methodological issues as well as the notions of beneficence/non-maleficence and autonomy. These ethical concerns can be highly upsetting to nurses if they are not addressed, so it is imperative that they are discussed fully prior to the initiation of a trial. Failure to resolve these issues (...) can place both the conduct and the results of research in jeopardy. (shrink)

Provides a systematic framework for understanding the broad features of the world and nature, and for locating the understanding of self and society within nature. Includes Buchler's reply to his critics. No bibliography.

This article is an initial attempt to compare the pre-abortion disclosure mandates that have proliferated in the two decades since the Court decided Planned Parenthood v. Casey with laws that, in the context of assisted reproduction and reproductive health, require specific disclosures beyond a state's baseline informed consent requirements. While some scholars have characterized pre-abortion disclosure laws as sui generis, they share some important common features with disclosure mandates in the context of oocyte donation and other reproductive health procedures. This (...) article suggests that in critiquing pre-abortion disclosure mandates, scholars and advocates should be careful to differentiate the use of disclosure laws in general from uses where the government interest conveys a moral preference against a particular procedure. (shrink)

This study contributes simultaneously to research on women board members and competitive dynamics by investigating two unresolved research questions: What is the effect of female directors on the firm’s competitive repertoire? Under what conditions is this effect more pronounced? Leveraging the “Awareness-Motivation-Capability” (AMC) framework, we predict that having women on the board of directors should impact the complexity, heterogeneity, and volume of the firm’s competitive moves. Relying upon a sample of U.S. pharmaceutical firms for the years 2000 to 2017, we (...) find that adding female directors on the board positively affects the complexity and volume of a firm’s competitive moves, but negatively impacts the heterogeneity of competitive actions. In addition, the presence of a female CEO moderates these effects, leading to more complex competitive actions and increased volume. Thus, our study lends a greater understanding of how female board members influence competitive dynamics and shape the strategic direction of the firm. (shrink)

Grief, defined as the experience of a significant loss, is a common experience in healthcare, not just for patients and their loved ones but also for healthcare professionals. In this symposium, we have gathered stories from professionals involved in patient care who report their experiences of grief on the job. Our authors come from the disciplines of medicine, nursing, social work, and chaplaincy. They represent a range of experiences, from students early in their training to experienced clinicians looking back on (...) careers in the healing professions. Many report on what helped them integrate their grief experiences into professional growth. Many also acknowledge that struggle for integration is ongoing. We also have four expert commentaries on these narratives provided by Heidi Walsh (ethics and narratives), Tai Mendenhall (psychology), Debra Oliver (social work), and Erin Bakanas (hospice and palliative medicine). (shrink)

This special edition of JLME celebrates the life of Charity Scott, Professor Emerita and Founding Director of the Center for Law, Health & Society at Georgia State University College of Law.

In the United States, patients who lose the ability to make their own medical decisions are subject to the laws of their respective states. Laws governing advance directives and physician orders for life-sustaining therapies (POLST), and establishing a surrogate in the absence of an advance directive, vary substantially by jurisdiction. This article traces those laws from their origins, describes current practices and challenges with their application to patient care, and considers future avenues for ethics research and legislative reform.

This purpose of this qualitative study was to gather detailed information about student perceptions of self-plagiarism and the perceived effectiveness of a brief self-plagiarism video tutorial. Semi-structured interviews were conducted and health sciences doctoral students were queried regarding their knowledge and perceptions of self- plagiarism. The population for this study was new doctoral students, as well as students who had committed self-plagiarism during the semester. Overall, participants reported a specific self-plagiarism intervention was more helpful in preventing self- plagiarism than a (...) traditional plagiarism intervention and that the intervention should be included in initial program orientation. Overwhelmingly, students did not believe self- plagiarism was a serious academic offense and think they own their intellectual property and unpublished works. (shrink)

ABSTRACTResearch has shown that memory predictions are higher for emotional words, pictures, and facial expressions, relative to neutral stimuli, with recognition memory performance often not follo...

Parents, after learning of a life-limiting fetal condition (LLFC), experience emotional distress and must consider options that impact the remainder of the pregnancy, their future lives, and family members. For those who continue, little is known about their longterm presence or absence of regret about their choice, the reasons for this feeling, or its impact on their life. The aim of this research was to examine the concept of decision regret in parents who opted to continue a pregnancy affected by (...) an LLFC. The contextual factors, conditions, and consequences surrounding the presence or absence of regret were analyzed.Data were retrieved from a cross-sectional study using the Quality of Perinatal Palliative Care and Parental Satisfaction Instrument. Participants were parents (N = 405) who experienced a life-limiting prenatal diagnosis and opted to continue their pregnancy. Secondary data analysis examined qualitative responses (121/402) to an item addressing regret. Dimensional analysis was “I Would Do It All Over Again”: Cherishing Time and the Absence of Regret in Continuing a Pregnancy after a Life-Limiting Diagnosis Charlotte Wool, Rana Limbo, and Erin M. Denney-Koelsch used to examine data, identifying context, conditions, and consequences associated with the presence or absence of regret.Absence of regret was articulated in 97.5 percent of participants. Parents valued the baby as a part of their family and had opportunities to love, hold, meet, and cherish their child. Participants treasured the time together before and after the birth. Although emotionally difficult, parents articulated an empowering, transformative experience that lingers over time. (shrink)

A traditional association of judgment with "reason" has drawn upon and reinforced an opposition between reason and emotion. This, in turn, has led to a restricted view of the nature of moral judgment and of the subject as moral agent. The alternative, I suggest, is to abandon the traditional categories and to develop a new theory of judgment. I argue that the theory of judgment developed by Justus Buchler constitutes a robust alternative which does not prejudice the case against emotion. (...) Drawing on this theory I then develop how to conceptualize the ways in which feeling and emotion can be (or be components of) moral judgments. (shrink)

Health care costs and affordability are critical issues to consumers. Just as we assess the coverage impacts of a health reform proposal, we should be able to evaluate how the plan will constrain health care costs: its theory of cost control. This essay provides a framework to assess health reform plans on their theories of cost control, identifying the key policy tools to constrain health care costs organized in a two-by-two matrix across the following dimensions: price vs. utilization and public (...) vs. private payers. It then applies the framework to the Affordable Care Act and the Republican's 2017 legislative efforts to repeal and replace the ACA to identify their general theories of cost control, revealing on the plans' strengths, blind spots, and incoherence. (shrink)

Almost a hundred years ago, John Dewey clarified the relationship between democracy and education. However, the enactment of a 'deeply democratic' educational practice has proven elusive throughout the ensuing century, overridden by managerial approaches to schooling young people and to the standardized, technical preparation and professional development of teachers and educational leaders. A powerful counter-narrative to this 'standardized management paradigm' exists in the field of curriculum studies, but is largely ignored by mainstream approaches to the professional development of educators. This (...) paper argues for a reconceptualized, differentiated, and 'disciplined' approach to the professional development of educators in democratic societies that builds capacity for curriculum leadership. In support of this proposal, we amplify the tenets of Dewey's pragmatic social and educational philosophy, which have long been at the heart of democratic educational thought, with Badiou's more contemporary thinking about the important relationships between truth as inspirational awakening, subjectification as existential commitment, and ethical fidelity as 'for all' action. (shrink)

The placenta invades the adjacent uterus and controls the maternal immune system, like a cancer invades surrounding organs and suppresses the local immune response. Intriguingly, placental and cancer cells are globally hypomethylated and share an epigenetic phenomenon that is not well understood – they fail to silence repetitive DNA sequences that are silenced in healthy somatic cells. In the placenta, hypomethylation of retrotransposons has facilitated the evolution of new genes essential for placental function. In cancer, hypomethylation is thought to contribute (...) to activation of oncogenes, genomic instability, and retrotransposon unsilencing; the latter, we postulate, is possibly the most important consequence. Activation of placental retrotransposon-derived genes in cancer underpins our hypothesis that hypomethylation of these genes drives cancer cell invasion. This alludes to an interesting paradox, that while placental retrotransposon-derived genes are essential for promoting early hominid life, the same genes promote disease-susceptibility and death through cancer. Placental and cancer cells fail to silence retrotransposons that are normally silenced in healthy tissues. This has created new genes that are essential for placental function, yet they are also expressed in cancer. We hypothesize that active retrotransposons are a double-edged sword, contributing both adaptive and deleterious functions to biology. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Habituation and Character ChangeKathleen Poorman DoughertyThe standard view regarding character traits is that they are habituated, stable dispositions that develop over time. This position is put forth in its most familiar form in Aristotle's Nicomachean Ethics, Book II, where he outlines the development of character, arguing that one becomes virtuous or vicious through habituation of the corresponding sorts of actions. Thus, we become generous by performing generous actions, courageous (...) by performing courageous actions, rash by performing rash actions, and so on for all the virtues and vices. He puts it most directly at 1103b, saying, "To sum it up in a single account: a state [of character] results from [the repetition of] similar activities."1 Concomitant with this understanding of the development of character traits is the claim that once developed, character traits are stable and do not change rapidly or without the requisite rehabituation. Once a person has learned to be generous or courageous, the assumption is that she will, barring unusual circumstances, remain that way, for rehabituation is difficult and probably rare at best.For the most part, this standard view of the development and entrenchment of character reflects our common experience. It is easy to acknowledge the personal difficulty of making changes in our character, even with respect to fairly insignificant habits (ask any nail-biter or procrastinator!) let alone more central and entrenched character traits. Likewise, most realistic people will not expect others to change and will take a promise to change as well-intentioned at best, if not also somewhat simple-minded. Yet, other common intuitions seem to conflict with this traditional view: we find it easy to accept literary examples, and potentially even some real-life examples, of people whose characters have undergone radical change either for the better or the worse [End Page 294] quite quickly. So, even though the standard view of character traits as entrenched dispositions that develop over time seems to fit our common experiences, radical character change must be comprehensible and even possible, or these literary examples would not resonate with us. It's these competing intuitions about character change that I give further consideration here, in hope that they can be reconciled.More specifically, I consider how we ought to best understand cases of apparent moral transformation in light of this "standard view" that genuine moral character develops only through long-term habituation. First, I describe the traditional Aristotelian view in more detail, noting the important connections between habituation, practical wisdom and entrenchment. Then, I introduce two familiar literary cases of apparent moral transformation, namely Euripides' Hecuba and Dickens's Scrooge. Finally, I consider the skeptical response to these examples, namely that they do not represent genuine cases of rapid character change, but simply a misunderstanding or a misdescription of the process of character development. In doing so, I argue that it is perfectly plausible for such rapid character transformations to occur, because certain radical experiences may require a completely new interpretation of the world and necessitate a different form of engagement with it. Thus, I maintain that though it is generally true that character develops over time, it is neither conceptually nor practically impossible for character to change independently of habituation.IThe development of the moral virtues, Aristotle tells us, is like learning a craft in that neither comes to us naturally, but rather both develop through practice and repetition: "we learn a craft by producing the same product that we must produce when we have learned it, becoming builders, e.g., by building and harpists by playing the harp; so also, then, we become just by doing just actions, temperate by doing temperate actions, brave by doing brave actions" (1103a32–1103b). But just as learning to build or play the harp is a long and arduous process, with many stumbles along the way, so is the development of virtue. We will certainly not get actions right the first time, but will likely fail many times along the way. As Nancy Sherman points out, the kind of habituation Aristotle has in mind cannot be blind or rote habituation.2 Developing virtue will not be a matter of behaving exactly the same way each... (shrink)

Many of the controversies surrounding the withholding of resuscitation are illuminated when we examine the language of resuscitation and resuscitative decisionmaking, and the contexts in which these decisions are made. Resuscitation and its withholding have multiple and often conflicting symbolic and emotional meanings for patients, families, and clinicians, and recognizing this divergence is essential to communication and to decisionmaking.

Science and emotions are typically juxtaposed: science is considered rational and unattached to outcomes, whereas emotions are considered irrational and harmful to science. Ethnographic studies of the daily lives of scientists have problematized this opposition, focusing on the emotional experiences of scientists as they go about their work, but they reveal little about disciplinary differences. We build on these studies by analyzing Citation Classics: accounts about the making of influential science. We document how highly cited scientists retrospectively describe emotional aspects (...) of their research and assess variation in these narratives across six diverse disciplines: Chemistry; Clinical Medicine; Neurobiology; Physics; Plant and Animal Science; and Psychology and Psychiatry. Using correspondence analysis, we develop a multidimensional model to explain disciplinary variation in scientists’ accounts of emotions and link this variation to internal, external, and material aspects of the disciplines. We find differences in norms of appropriate emotional expression, or “feeling rules,” between the “hard” and “soft” sciences, the basic and applied sciences, and the sciences that study living organisms versus those that study organs, cells, or atoms. By comparing accounts across disciplines and elaborating the structuring principles underlying these patterns, we integrate knowledge from varied case studies into an integrative and multifaceted model. (shrink)

This paper considers the way a world history teacher structured his world history class around his perception of student needs. Part of a larger project, this single case study highlights the teacher’s efforts to make his curriculum relevant to his students largely from minoritized backgrounds. The researchers analyze the ways in which the world history teacher struggled to prioritize his students’ lived experiences.

In his writings, Pope Francis describes a culture of interfaith and intercultural encounter as the foundation of lasting peace, friendship, and reconciliation among peoples. Far from superficial, a culture of encounter is built upon the slow work of honoring differences and forming social bonds across differences. In the first part of this paper, the authors investigate correspondences between the theology of encounter in the teaching and witness of Martin Buber and Pope Francis, in which the sacred, the ground of reality, (...) and the potential for redemption are revealed in the engaged space “between” self and other. In the second part of the paper, they explore how these ideas are actualized in practices of nonviolence, such as dialogue. In conclusion, they identify how these ideas and role models suggest a road map to build a culture of nonviolence and just peace through encounter within fractured societies throughout the world today. (shrink)

Grief is an emotion that reaches across multiple disciplines in healthcare. In this series we hear from medical students, residents and fellows, physicians, nurses, chaplains and social workers. Writers share their challenges with vulnerability, uncertainty, and emotional exhaustion. Many identify a sense of isolation within the very system they are seeking to support. While not all are confident, they have reached a new grounding after grief, these authors do offer a sense of hope for recovery and rediscovery of the joy (...) in the privilege of the practice of medicine. (shrink)

This paper offers a framework for teaching and learning Catholic social thought. Drawing upon theories of community engagement and justice education, the paper observes stages of student learning related to Catholic social thought. Finally, it draws upon Ignatian principles and pedagogy as an approach to teaching Catholic social thought to college students.

Thought uses meaning but not necessarily language. Meaning, in the form of a set of possible concepts and ideas, is a nonphysical reality that lay waiting for brains to become smart enough to represent these ideas. Thus, the brain evolved, whereas meaning was discovered, and language was invented – collectively – as a tool to help the brain use meaning.