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.

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.

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 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)

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 this anthology of new and classic articles, fifteen noted feminist philosophers explore contemporary ethical issues that uniquely affect the lives of women. These issues in applied ethics include autonomy, responsibility, sexual harassment, women in the military, new technologies for reproduction, surrogate motherhood, pornography, abortion, nonfeminist women and others. Whether generated by old social standards or intensified by recent technology, these dilemmas all pose persistent, 'nagging,' questions that cry out for answers.

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.

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...

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...

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)

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)

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)

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)

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)

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)

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)

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)

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)

From its inception, genomics has been a speculative endeavor, fixated on a far-off horizon that would deliver on the promise of targeted diagnostics and individualized therapeutics (Fortun 2008). M...

We conducted focus groups to assess patient attitudes toward research on medical practices in the context of usual care. We found that patients focus on the implications of this research for their relationship with and trust in their physicians. Patients view research on medical practices as separate from usual care, demanding dissemination of information and in most cases, individual consent. Patients expect information about this research to come through their physician, whom they rely on to identify and filter associated risks. (...) In general, patients support this research, but worry that participation in research involving randomization may undermine individualized care that acknowledges their unique medical histories. These findings suggest the need for public education on variation in practice among physicians and the need for a collaborative approach to the governance of research on medical practices that addresses core values of trust, transparency, and partnership. (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 In the wake of mandates for biomedical research to increase participation by members of historically underrepresented populations, community engagement (CE) has emerged as a key intervention to help achieve this goal.Methods Using interviews, observations, and document analysis, we examine how stakeholders in precision medicine research understand and seek to put into practice ideas about who to engage, how engagement should be conducted, and what engagement is for.Results We find that ad hoc, opportunistic, and instrumental approaches to CE exacted significant (...) consequences for the time and resources devoted to engagement and the ultimate impacts it has on research. Critical differences emerged when engagement and research decisionmaking were integrated with each other versus occurring in parallel, separate parts of the study organization, and whether community members had the ability to determine which issues would be brought to them for consideration or to revise or even veto proposals made upstream based on criteria that mattered to them. CE was understood to have a range of purposes, from instrumentally facilitating recruitment and data collection, to advancing community priorities and concerns, to furthering long-term investments in relationships with and changes in communities. These choices about who to engage, what engagement activities to support, how to solicit and integrate community input into the workflow of the study, and what CE was for were often conditioned upon preexisting perceptions and upstream decisions about study goals, competing priorities, and resource availability.Conclusions Upstream choices about CE and constraints of time and resources cascade into tradeoffs that often culminated in “pantomime community engagement.” This approach can create downstream costs when engagement is experienced as improvised and sporadic. Transformations are needed for CE to be seen as a necessary scientific investment and part of the scientific process. (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)