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)

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)

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)

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)

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 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)

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)

"... 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)

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.

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.

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)

The potential of ChatGPT looms large for the practice of medicine, as both boon and bane. The use of Large Language Models (LLMs) in platforms such as ChatGPT raises critical ethical questions of w...

New technologies are transforming and reconfiguring the boundaries between patients, research participants and consumers, between research and clinical practice, and between public and private domains. From personalised medicine to big data and social media, these platforms facilitate new kinds of interactions, challenge longstanding understandings of privacy and consent, and raise fundamental questions about how the translational patient pathway should be organised.This editorial introduces the cross-journal article collection "Translation in healthcare: ethical, legal, and social implications", briefly outlining the genesis of the (...) collection in the 2015 Translation in healthcare conference in Oxford, UK and providing an introduction to the contemporary ethical challenges of translational research in biology and medicine accompanied by a summary of the papers included in this collection. (shrink)

Decades of public investment in molecular technologies and data integration techniques have fueled promises of precision medicine (PM) as a novel, targeted, and data-driven approach that takes into...

The convergence of increasingly efficient high throughput sequencing technology and ubiquitous Internet use by the public has fueled the proliferation of companies that provide personal genetic information (PGI) direct-to-consumers. Companies such as 23andme (Mountain View, CA) and Navigenics (Foster City, CA) are emblematic of a growing market for PGI that some argue represents a paradigm shift in how the public values this information and incorporates it into how they behave and plan for their futures. This new class of social networking (...) business ventures that market the science of the personal genome illustrates the new trend in collaborative science. In addition to fostering a consumer empowerment movement, it promotes the trend of democratizing information—openly sharing of data with all interested parties, not just the biomedical researcher—for the purposes of pooling data (increasing statistical power) and escalating the innovation process. This target article discusses the need for new approaches to studying DTC genomics using social network analysis to identify the impact of obtaining, sharing, and using PGI. As a locus of biosociality, DTC personal genomics forges social relationships based on beliefs of common genetic susceptibility that links risk, disease, and group identity. Ethical issues related to the reframing of DTC personal genomic consumers as advocates and research subjects and the creation of new social formations around health research may be identified through social network analysis. (shrink)

Precision medicine relies on data and biospecimens from participants who willingly offer their personal information on the promise that this act will ultimately result in knowledge that will improv...

The rise of genomic technologies has catalyzed shifts in the health care landscape through the commercialization of genome sequencing and testing services in the genomics marketplace. The development of consumer genomics into a growing array of information technologies aimed at collecting, curating, and broadly sharing personal data and biological materials reconstitutes the meaning of health and reframes patients into biocitizens. In this context, the good biocitizen is expected to assume personal responsibility for health through consumption of genomic information and acquiescence (...) to public and private efforts at data surveillance and aggregation. These shifts raise fundamental questions about how competing interests of the public, the state, and corporate entities will be reconciled and what trade‐offs are demanded for the promise of precision health. (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 American Journal of Bioethics, Volume 12, Issue 4, Page 41-43, April 2012.

The convergence of increasingly efficient high throughput sequencing technology and ubiquitous Internet use by the public has fueled the proliferation of companies that provide personal genetic information direct-to-consumers. Companies such as 23andme and Navigenics are emblematic of a growing market for PGI that some argue represents a paradigm shift in how the public values this information and incorporates it into how they behave and plan for their futures. This new class of social networking business ventures that market the science of (...) the personal genome illustrates the new trend in collaborative science. In addition to fostering a consumer empowerment movement, it promotes the trend of democratizing information—openly sharing of data with all interested parties, not just the biomedical researcher—for the purposes of pooling data and escalating the innovation process. This target article discusses the need for new approaches to studying DTC genomics using social network analysis to identify the impact of obtaining, sharing, and using PGI. As a locus of biosociality, DTC personal genomics forges social relationships based on beliefs of common genetic susceptibility that links risk, disease, and group identity. Ethical issues related to the reframing of DTC personal genomic consumers as advocates and research subjects and the creation of new social formations around health research may be identified through social network analysis. (shrink)

ELSI efforts long have been troubled by critiques that they privilege scientific frameworks and grant scientists the power to set ethical agendas. As the first director of the Human Genome Project’...

Background Over the last decade, the return of results (ROR) in precision medicine research (PMR) has become increasingly routine. Calls for individual rights to research results have extended the “duty to report” from clinically useful genetic information to traits and ancestry results. ROR has thus been reframed as inherently beneficial to research participants, without a needed focus on who benefits and how. This paper addresses this gap, particularly in the context of PMR aimed at increasing participant diversity, by providing investigator (...) and researcher perspectives on and questions about the assumed value of ROR in PMR.Methods Semi-structured interviews with a purposive sample of investigators and researchers across federally funded PMR studies in three national consortia, as well as observations of study activities, focused on how PM researchers conceptualize diversity and implement inclusive practices across research stages, including navigating ROR.Results Interviewees (1) validated the value of ROR as a benefit of PMR, while others (2) questioned the benefit of clinically actionable results to individuals in the absence of sufficient resources for translating findings into health care for diverse and disadvantaged populations; (3) expressed uncertainties in applying the presumed value of ROR as a benefit for non-clinical results; and (4) and debated when the promise of the value of ROR may undermine trust in PMR, and divert efforts to return value beyond ROR.Conclusions Conceptualizations of diversity and inclusion among PM researchers and investigators raise unique ethical questions where unexamined assumptions of the value of ROR inform study recruitment efforts to enroll minoritized and under-represented populations. A lack of consideration for resources and infrastructure necessary to translate ROR into actionable information may hinder trustworthy community-research relationships. Thus, we argue for a more intentional interrogation of ROR practices as an offer of benefit and for whom. (shrink)