Background: Recent changes to regulatory guidance in the US and Europe have complicated oversight of secondary research by rendering most uses of de-identified data exempt from human subjects oversight. To identify the implications of such guidelines for harms to participants and communities, this paper explores the secondary uses of one de-identified DNA sample collection with limited oversight: the Human Genome Diversity Project (HGDP)-Centre d'Etude du Polymorphisme Humain, Fondation Jean Dausset (CEPH) Human Genome Diversity Panel. Methods: Using a combination of keyword (...) and cited reference search, we identified English-language scientific articles published between 2002 and 2009 that reported analysis of HGDP Diversity Panel samples and/or data. We then reviewed each article to identify the specific research use to which the samples and/or data was applied. Secondary uses were categorized according to the type and kind of research supported by the collection. Results: A wide variety of secondary uses were identified from 148 peer-reviewed articles. While the vast majority of these uses were consistent with the original intent of the collection, a minority of published reports described research whose primary findings could be regarded as controversial, objectionable, or potentially stigmatizing in their interpretation. Conclusions: We conclude that potential risks to participants and communities cannot be wholly eliminated by anonymization of individual data and suggest that explicit review of proposed secondary uses, by a Data Access Committee or similar internal oversight body with suitable stakeholder representation, should be a required component of the trustworthy governance of any repository of data or specimens. (shrink)

As employee assistance programs (EAPs) have evolved and expanded their scope in the past decade, many factors have contributed to meeting the demands of conflicting client constituencies in a multifaceted client environment. This article enumerates several of these factors, notes consequences of ensuing conflicts, and ultimately proposes some methods to counter some of these ethical dilemmas in the future. It is the hope that greater recognition and understanding of ethical conflicts in client loyalty within a host organization will foster increased (...) sensitivity on the part of the EAP practitioner toward resolving these conflicts. (shrink)

With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on (...) these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: Address the role of history and experience on trust, engage concerns about potential group harm, address cultural values and communication barriers, and integrate patient values and expectations into oversight and governance structures. (shrink)

Moral psychology studies the features of cognition, judgement, perception and emotion that make human beings capable of moral action. Perspectives from feminist and race theory immensely enrich moral psychology. Writers who take these perspectives ask questions about mind, feeling, and action in contexts of social difference and unequal power and opportunity. These essays by a distinguished international cast of philosophers explore moral psychology as it connects to social life, scientific studies, and literature.

The sixteen essays in Gender Struggles address a wide range of issues in gender struggles, from the more familiar ones that, for the last thirty years, have been the mainstay of feminist scholarship, such as motherhood, beauty, and sexual violence, to new topics inspired by post-industrialization and multiculturalism, such as the welfare state, cyberspace, hate speech, and queer politics, and finally to topics that traditionally have not been seen as appropriate subjects for philosophizing, such as adoption, care work, and the (...) home. (shrink)

In a rare full-length volume, renowned feminist thinker Sandra Lee Bartky brings together eight essays in one volume, Sympathy and Solidarity. A philosophical work accessible to an educated general audience, the essays reflect the intersection of the author's eye, work, and sometimes her politics. Two motifs connect the works: first, all deal with feminist topics and themes; second, most deal with the reality of oppression, especially in the disguised and subtle ways it can be manifested.

In lieu of an abstract, here is a brief excerpt of the content:Toward Mindful Music Education:A Response To Bennett ReimerSandra L. StaufferIn her book Composing a Life, Mary Catherine Bateson reminds us to acknowledge our antecedents—those who have gone before in whatever way or whatever path.1 I believe we should also acknowledge our co-conspirators—those who have listened to us and wrestled with our ideas. Following Bateson, I wish to recognize the contributions of my teachers and my colleagues, particularly the members (...) of the doctoral seminar at Arizona State University. I am grateful for your contributions to the life of my mind and the words of this morning. For the record, I also want to say that Bennett Reimer is both antecedent and co-conspirator for everyone in this room, and we are indebted to him."The first task of philosophy involves learning to ask a good question," says Walter Feinberg in his essay on the philosophical scholar.2 Reimer asks us, "Who is philosophy of music education for?"—a provocative question indeed. He also gives us an answer: K-12 students.I agree, but not really. How can that be? Imagine this. A music teacher I know, Stephanie, was engaged with some first-grade children in singing songs and moving and reading rhythms. She turned to write on the white board. When she turned back to the children, one boy, Alex, was standing, perfectly still, on his head. What happened next? I will tell you in few minutes. Reimer says, "Philosophical issues are not disconnected to or incidental to musical experience. [End Page 135] They are foundational for musical experience, because one's values, beliefs, desires, preferences, and so forth, directly affect how one engages with music and what one gets from doing it." Abridging those two sentences at my own peril, Reimer appears to be saying that philosophical issues are foundational to musical experience.That idea works for me only if I am standing, figuratively and metaphorically, not literally, on my head. It seems to me that experience is the foundation of philosophy or, put another way, that one's philosophy derives from one's experiences; the richer the experiences, the richer the philosophy. A philosophy based on limited or weak experience is a limited or weak philosophy. This, however, is only surface-level logic for a deeper epistemological question—where does one's philosophy come from? If I take the Deweyan perspective that philosophy derives from experience, then surely I am obligated, in this forum, to define my terms—particularly "experience." It would be easy to say that experience means making music and listening to music, and surely it does. By experience, however, I mean not only these actions—the doing of music—but also thinking, or what Ellen Langer calls mindfulness.3 Langer describes mindful learning as having three characteristics: "the continuous creation of new categories; openness to new information; and an implicit awareness of more than one perspective."4 I like how Robert Duke articulates the same idea: "Teach things that are intellectually interesting and functionally valuable."5 Engage students not just in doing, but also in thinking—in mindful learning. Rich experience makes for rich philosophy. If we are talking about music education at all levels that is not only participatory, but also mindful, then I am all for it.Reimer asks a second question: how are we to accomplish the teaching of philosophy to K-12 students? I want to know what we are trying to accomplish. Are we trying to teach the content of philosophy or are we trying to help students develop their own abilities to think about their experiences as musicians, whether as listeners or as music makers, in whatever contexts they find themselves? The former seems to be a reification of philosophy in which I am not eager to engage most K-12 students. I hope we are aiming for the latter. If so, then our task is to provide rich and mindful experiences in every music setting. Our task is to model the disposition of a philosopher—one who asks questions, is curious, and is engaged in the life of the mind.This seems so obvious. Why aren't we doing it already? There... (shrink)

There is an analogy between a scientific approach to medicine in which the patient ultimately becomes an object of study rather than a whole person, and a post/modern aesthetic in literature in which the subject has little or no agency in a chaotic linguistic universe. Raymond Carver died of cancer in 1988, and in both his pre- and post-diagnostic poetry there is humanistic lyricism that contributes to re-establishing empathic bonds between readers and characters, and to re-humanizing the patient as a (...) whole person in the context of contemporary health institutions. Close readings of poems with descriptions of the autopsy room and of patient-doctor relations bring out the medical humanism in Carver's verse. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Toward Mindful Music Education:A Response To Bennett ReimerSandra L. StaufferIn her book Composing a Life, Mary Catherine Bateson reminds us to acknowledge our antecedents—those who have gone before in whatever way or whatever path.1 I believe we should also acknowledge our co-conspirators—those who have listened to us and wrestled with our ideas. Following Bateson, I wish to recognize the contributions of my teachers and my colleagues, particularly the members (...) of the doctoral seminar at Arizona State University. I am grateful for your contributions to the life of my mind and the words of this morning. For the record, I also want to say that Bennett Reimer is both antecedent and co-conspirator for everyone in this room, and we are indebted to him."The first task of philosophy involves learning to ask a good question," says Walter Feinberg in his essay on the philosophical scholar.2 Reimer asks us, "Who is philosophy of music education for?"—a provocative question indeed. He also gives us an answer: K-12 students.I agree, but not really. How can that be? Imagine this. A music teacher I know, Stephanie, was engaged with some first-grade children in singing songs and moving and reading rhythms. She turned to write on the white board. When she turned back to the children, one boy, Alex, was standing, perfectly still, on his head. What happened next? I will tell you in few minutes. Reimer says, "Philosophical issues are not disconnected to or incidental to musical experience. [End Page 135] They are foundational for musical experience, because one's values, beliefs, desires, preferences, and so forth, directly affect how one engages with music and what one gets from doing it." Abridging those two sentences at my own peril, Reimer appears to be saying that philosophical issues are foundational to musical experience.That idea works for me only if I am standing, figuratively and metaphorically, not literally, on my head. It seems to me that experience is the foundation of philosophy or, put another way, that one's philosophy derives from one's experiences; the richer the experiences, the richer the philosophy. A philosophy based on limited or weak experience is a limited or weak philosophy. This, however, is only surface-level logic for a deeper epistemological question—where does one's philosophy come from? If I take the Deweyan perspective that philosophy derives from experience, then surely I am obligated, in this forum, to define my terms—particularly "experience." It would be easy to say that experience means making music and listening to music, and surely it does. By experience, however, I mean not only these actions—the doing of music—but also thinking, or what Ellen Langer calls mindfulness.3 Langer describes mindful learning as having three characteristics: "the continuous creation of new categories; openness to new information; and an implicit awareness of more than one perspective."4 I like how Robert Duke articulates the same idea: "Teach things that are intellectually interesting and functionally valuable."5 Engage students not just in doing, but also in thinking—in mindful learning. Rich experience makes for rich philosophy. If we are talking about music education at all levels that is not only participatory, but also mindful, then I am all for it.Reimer asks a second question: how are we to accomplish the teaching of philosophy to K-12 students? I want to know what we are trying to accomplish. Are we trying to teach the content of philosophy or are we trying to help students develop their own abilities to think about their experiences as musicians, whether as listeners or as music makers, in whatever contexts they find themselves? The former seems to be a reification of philosophy in which I am not eager to engage most K-12 students. I hope we are aiming for the latter. If so, then our task is to provide rich and mindful experiences in every music setting. Our task is to model the disposition of a philosopher—one who asks questions, is curious, and is engaged in the life of the mind.This seems so obvious. Why aren't we doing it already? There... (shrink)

In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often‐ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and potential benefits. They conclude with a discussion of responsible behavior in the context of SBG research. (...) SBG research that compares individuals within a group according to a “sensitive” phenotype requires extra attention to responsible conduct and to responsible communication about the research and its findings. SBG research (1) on sensitive phenotypes that (2) compares two or more groups defined by (a) race, (b) ethnicity, or (c) genetic ancestry (where genetic ancestry could easily be misunderstood as race or ethnicity) requires a compelling justification to be conducted, funded, or published. All authors agree that this justification at least requires a convincing argument that a study's design could yield scientifically valid results; some authors would additionally require the study to have a socially favorable risk‐benefit profile. (shrink)

Background Researchers engaged in the study of the ethical, legal, and social implications (ELSI) of genetics and genomics are often publicly funded and intend their work to be in the public interest. These features of U.S. ELSI research create an imperative for these scholars to demonstrate the public utility of their work and the expectation that they engage in research that has potential to inform policy or practice outcomes. In support of the fulfillment of this “translational mandate,” the Center for (...) ELSI Resources and Analysis (CERA), funded by the National Human Genome Research Institute (NHGRI), aims to facilitate community-informed, ELSI research results synthesis and dissemination. However, little is known about how ELSI research scholars define the goals of translation and imagine the intended users of their research findings.Methodology We distributed a Qualtrics survey to ELSI scholars that aimed to determine: (1) researchers’ expectations for their research findings in relation to policy or practice outcomes, (2) the stakeholder groups researchers believe could benefit from their research findings, and (3) the methods researchers use to foster the uptake of their findings by those stakeholders.Results Most ELSI researchers surveyed thought there were stakeholders that could benefit from their research findings, including health care professionals, at-risk individuals, patients, and their family members, policy-makers, and researchers/scientists, and expected their research findings to inform the creation or revision of laws, policies, or practice guidelines. Most researchers planned to disseminate findings directly to relevant stakeholders, with fewer expecting dissemination support from research funders, universities, or other entities.Conclusion The broad range of research topics, disciplines, and set of potential end users represented in ELSI reseach complicate the work of a knowledge broker. Nonetheless, the CERA can play an important role in disseminating ELSI results to relevant stakeholders. Further research should explore outreach mechanisms. (shrink)

"... Fraser and Bartky have brought the encounter between U.S. and French feminism to a new level of seriousness." —Ethics In the last decade, elements of French feminist discourse have permeated and transformed the larger feminist culture in the United States. This volume is the first sustained attempt to revalue French feminism and answer the question: What has been gained and what has been lost as a result of this intercultural encounter? Interviews with Simone de Beauvoir open the book; essays (...) by French feminists Sarah Kofman and Luce Irigaray follow; the North American contributors are Judith Butler, Nancy Fraser, Diana J. Fuss, Nancy J. Holland, Eleanor H. Kuykendall, Dorothy Leland, Diana T. Meyers, Andrea Nye, and Margaret A. Simons. (shrink)

The Internet appears to offer psychologists doing research unrestricted access to infinite amounts and types of data. However, the ethical issues surrounding the use of data and data collection methods are challenging research review boards at many institutions. This article illuminates some of the obstacles facing researchers who wish to take advantage of the Internet's flexibility. The applications of the APA ethical codes for conducting research on human participants on the Internet are reviewed. The principle of beneficence, as well as (...) privacy and confidentiality, informed consent, deception, and avoiding harm are all illustrated through the use of a hypothetical online study. (shrink)

Background: Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinical boundaries. There is a move toward self-directed, web-based research enrollment, but more evidence is needed about how these enrollment approaches work in practice. In this study, we developed and evaluated a literacy-focused, web-based consent approach to support enrollment of diverse participants in an ongoing clinical genomic implementation study. (...) Methods: As part of the Cancer Health Assessments Reaching Many (CHARM) study, we developed a web-based consent approach that featured plain language, multimedia, and separate descriptions of clinical care and research activities. CHARM offered clinical exome sequencing to individuals at high risk of hereditary cancer. We interviewed CHARM participants about their reactions to the consent approach. We audio recorded, transcribed, and coded interviews using a deductively and inductively derived codebook. We reviewed coded excerpts as a team to identify overarching themes. Results: We conducted 32 interviews, including 12 (38%) in Spanish. Most (69%) enrolled without assistance from study staff, usually on a mobile phone. Those who completed enrollment in one day spent an average of 12 minutes on the consent portion. Interviewees found the information simple to read but comprehensive, were neutral to positive about the multimedia support, and identified increased access to testing in the study as the key difference from clinical care. Conclusions: This study showed that interviewees found our literacy-focused, web-based consent approach acceptable; did not distinguish the consent materials from other online study processes; and valued getting access to testing in the study. Overall, conducting empirical bioethics research in an ongoing clinical trial was useful to demonstrate the acceptability of our novel consent approach but posed practical challenges. (shrink)

Webster's Dictionary defines “femininity” as “the quality or nature of the female sex”; the Oxford English Dictionary as “the quality or assemblage of qualities pertaining to the female sex”. Both are wrong. One can be a member of the female sex and yet fail or refuse to be feminine; conversely, one may be biologically male and a drag queen. Femininity is a certain set of sensibilities, behavioral dispositions, and qualities of mind and character. It is also a compelling aesthetic of (...) embodiment, “a mode of enacting and re‐enacting received gender norms which surface as so many styles of the flesh”. What follows will focus on the ways in which some feminist thinkers have theorized the norms that govern the production and behavior of an ideally feminine body. (shrink)

This book returns the reader to an agenda for addressing equity in schools, emphasizing the need to reexamine past reform efforts and the work ahead for educational leaders in reshaping schools and schooling.

The combination of decreased genotyping costs and prolific social media use is fueling a personal genetic testing industry in which consumers purchase and interact with genetic risk information online. Consumers and their genetic risk profiles are protected in some respects by the 2008 federal Genetic Information Nondiscrimination Act (GINA), which forbids the discriminatory use of genetic information by employers and health insurers; however, practical and technical limitations undermine its enforceability, given the everyday practices of online social networking and its impact (...) on the workplace. In the Web 2.0 era, employers in most states can legally search about job candidates and employees online, probing social networking sites for personal information that might bear on hiring and employment decisions. We examine GINA's protections for online sharing of genetic information as well as its limitations, and propose policy recommendations to address current gaps that leave employees? genetic information vulnerable in a Web-based world. (shrink)

Scientists now agree that common diseases arise through interactions of genetic and environmental factors, but there is less agreement about how scientific research should account for these interactions. This paper examines the politics of quantification in gene–environment interaction research. Drawing on interviews and observations with GEI researchers who study common, complex diseases, we describe quantification as an unfolding moral economy of science, in which researchers collectively enact competing “virtues.” Dominant virtues include molecular precision, in which behavioral and social risk factors (...) are moved into the body, and “harmonization,” in which scientists create large data sets and common interests in multisited consortia. We describe the negotiations and trade-offs scientists enact in order to produce credible knowledge and the forms of discipline that shape researchers, their practices, and objects of study. We describe how prevailing techniques of quantification are premised on the shrinking of the environment in the interest of producing harmonized data and harmonious scientists, leading some scientists to argue that social, economic, and political influences on disease patterns are sidelined in postgenomic research. We consider how a variety of GEI researchers navigate quantification’s productive and limiting effects on the science of etiological complexity. (shrink)

Philosophy and the Historical Perspective contains fourteen chapters, each of which is an attempt to enrich our conception of the relationship of analytical philosophy to history. Some chapters seek insight from the philosophical canon: Robert Pippin offers an insightful discussion of Hegel's historiographical methodology, and Brian Leiter presents aspects of Nietzsche's. Many of the chapters set research agendas that would deserve entire volumes. For instance, van Ackeren asks whether there are transhistorical philosophical problems, and Thomas Grundmann what philosophical progress looks (...) like. Christof Rapp casts doubt on the idea that hard-core... (shrink)

Resenha do livro de McGinn, Colin. Shakespeare ’s Philosophy : Discovering the meaning Behind the Plays [A filosofia de Shakespeare : descobrindo o significado atrás das peças]. New York: Harper, 2008. 230 páginas.

Resumo: Existe uma acirrada discussao entre os estudiosos do classico ingles Paradise Lost (John Milton, 1674) sobre o suposto misogenismo do autor. A maioria dos estudiosos, inclusive mulheres sustentam que n áo . A analise da Eva Miltoniana apresentada abaixo deixa claro que n áo so Milton de é fato misogenista, mas seu misogenismo vai alem da opini áo comum de uma epoca que via a mulher como encarnaç áo do mal. Milton, atraves de sua Eva, justifica esta vis áo (...) da mulher, aprofundando e perpetuando com sua mitopoetica a vis áo etica-teologica da mulher. Sua vis áo , longe de ser "moderna ", representa a reafirmaç áo do ethos paternalistico da tradic áo judaico-crist á. (shrink)

Resenha do livro de: CARDIM, Leandro Neves Corpo . Col. Filosofia Frente & Verso. Sáo Paulo: Globo, 2009. 177 p.

Resenha do livro de Willi Bolle. grandesertáo.br . Sáo Paulo: Duas Cidades/Editora 34, 2004, 478 páginas. [Coleçáo Espírito Crítico].

Resenha do livro de: Rudiger Safranski, Nietzsche: biografia de uma tragedia. Traducao de Lya Luft. Sao Paulo: Geracao Editorial, 2001. 263 paginas.

Resenha do livro de Sellars, Roy, e Allen, Graham (Orgs.). The Salt Companion to Harold Bloom . Cambridge: Salt, 2007. 505 páginas.

. — The scientific method can be understood as a sequence of stages of types of activity undertaken to construct explanatory hypotheses which are verifiable. These stages, origination, deduction, experimentation, and confirmation, are each subdivided into several phases. The stages and phases are related by an order of precedence in which any given phase has to be preceded by the one before it but does not necessarily lead to the one after it. Such a dynamic outline of the growth of (...) a scientific idea is a general scheme for rendering an explanation of it. As a consequence, the general historical development of a scientific idea is traced at the same time that its logical structure and operational significance is indicated. (shrink)

Here, we describe how Casas Grandes Medio period (AD 1200 to 1450) shamanic practices of the North American Southwest used tobacco shamanism, a ritual stance called the Tennessee Diviner (TD) posture, and cultural expectations to generate trance experiences of soul flight and divination. We introduce a conceptual model that holds that specific trance experiences are the emergent result of human minds interacting with additional factors including entheogens, cultural expectations, physiological states, postures/movement, and sound/stimulation. Experimental and ethnographic evidence indicates initiating trance (...) with either tobacco intoxication or the TD posture accompanied with a rapidly beating drum or rattle corresponds with perceptions of soul flight, transformation, and divination/information acquisition. Both have similar results but pairing them together as they were during the Medio period likely helped ensure the culturally desired trance experiences. This practice of mutually reinforcing factors was likely part of tobacco‐based shamanism found in other New World cultures as well. We suggest our general model can be applied to other contexts to examine how various aspects of trance induction interact to produce the cultural patterns (and resulting cosmological and spiritual frameworks) anthropologists have documented in other cultures. (shrink)

The C3 Framework encourages ambitious inquiry-based social studies teaching. While inquiry is regularly recommended as a preferred pedagogy, research has shown that social studies teachers rarely engage students in inquiry. This exploratory study surveyed social studies teachers in one school district in a southeastern state to update our understanding of teachers’ instructional beliefs and practices related to inquiry and the C3 Framework. Survey responses were analyzed using descriptive statistics and open coding. Findings indicate that the majority of teachers use instructional (...) practices that may be supportive of the C3 Framework and that the ideas within the C3 Framework resonate with most respondents. At the same time, teachers reported challenges with some key concepts within the Framework, such as taking informed action in the classroom and using questions to initiate an inquiry. While the idea of inquiry as espoused by the C3 Framework resonated with teachers, the extent to which they both believe in and practice inquiry methods is unclear and necessitates further study. This study is an initial step to inform future research and efforts to implement the C3 Framework in K-12 social studies classrooms. (shrink)

. On June 13, 2013, the Supreme Court issued a unanimous decision in Association for Molecular Pathology v. Myriad Genetics, holding that a naturally occurring DNA segment that has merely been “isolated” is not patent eligible, and effectively overturning a longstanding policy that had allowed for patents to be issued on thousands of human genes. Drawing largely on the expert testimony and arguments presented during the court proceedings, this paper provides an overview of the discovery and patenting of the BRCA1 (...) and BRCA2 genes at issue in the case, the impacts of gene patents on biomedical research and innovation and clinical practice, and the legal analysis presented by the plaintiffs throughout the case for how patents issued on genes violate the Patent Act and the U.S. Constitution. Finally, it discusses how the Court’s decision in this case marked an extraordinary victory not only for the plaintiffs directly involved, but more generally for women, patients, researchers, civil liberties, and the future of medicine. (shrink)

Bartky draws on the experience of daily life to unmask the many disguises by which intimations of inferiority are visited upon women. She critiques both the male bias of current theory and the debilitating dominion held by notions of "proper femininity" over women and their bodies in patriarchal culture.