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Volume 19, Issue 5, May 2019, Page 34-36.

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In 2004, the Havasupai Tribe filed a lawsuit against the Arizona Board of Regents and Arizona State University researchers upon discovering their DNA samples, initially collected for genetic studies on type 2 diabetes, had been used in several other genetic studies. The lawsuit reached a settlement in April 2010 that included monetary compensation and return of DNA samples to the Havasupai but left no legal precedent for researchers. Through semistructured interviews, institutional review board chairs and human genetics researchers at US (...) research institutions revealed their perspectives on the Havasupai lawsuit. For interviewees, the suit drew attention to indigenous concerns over genetic studies and increased their awareness of indigenous views. However, interviewees perceived no direct impact from the Havasupai case on their work; if they did, it was the perceived need to safeguard themselves by obtaining broad consent or shying away from research with indigenous communities altogether, raising important questions of justice for indigenous and minority participants. If researchers and IRBs do not change their practices in light of this case, these populations will likely continue to be excluded from a majority of research studies and left with less access to resources and potential benefit from genetic research participation. (shrink)

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There has been considerable debate on which genomic research results to return to participants and when those results should be returned, but little attention to how those results should be returned, especially to minority and culturally diverse participants. This paper explores the cultural and ethical considerations around returning research results to participants and families of culturally diverse backgrounds, with a special focus on considerations when the research participant is deceased, and raises points for further discussion.

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As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. (...) Using stasis theory to draw out the important connection between definitional issues and resulting policies, we argue that the framework of genomic contextualism is better suited to evaluating genomics and its policy-relevant features to arrive at more productive discussion and resolve policy debates. (shrink)

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Through the use of culturally appropriate videos on precision medicine research (PMR) that were developed and tailored to five racial and ethnic groups of patients, and subsequent focus-group discu...

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Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

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We agree with Saunkeah and colleagues that research ethics principles outlined by the Belmont Report—which guide the procedural basis for “human subjects” research in the United States throu...

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Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

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Bioethicists frequently call for empirical researchers to engage participants and community members in their research, but don't themselves typically engage community members in their normative research. In this article, we describe an effort to include members of the public in normative discussions about the risks, potential benefits, and ethical responsibilities of social and behavioral genomics (SBG) research. We reflect on what might—and might not— be gained from engaging the public in normative scholarship and on lessons learned about public perspectives on (...) the risks and potential benefits of SBG research and the responsible conduct and communication of such research. We also provide procedural lessons for others in bioethics who are interested in engaging members of the public in their research. (shrink)

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ABSTRACT:A wide range of research uses patterns of genetic variation to infer genetic similarity between individuals, typically referred to as genetic ancestry. This research includes inference of human demographic history, understanding the genetic architecture of traits, and predicting disease risk. Researchers are not just structuring an intellectual inquiry when using genetic ancestry, they are also creating analytical frameworks with broader societal ramifications. This essay presents an ethics framework in the spirit of virtue ethics for these researchers: rather than focus on (...) rule following, the framework is designed to build researchers’ capacities to react to the ethical dimensions of their work. The authors identify one overarching principle of intellectual freedom and responsibility, noting that freedom in all its guises comes with responsibility, and they identify and define four principles that collectively uphold researchers’ intellectual responsibility: truthfulness, justice and fairness, anti-racism, and public beneficence. Researchers should bring their practices into alignment with these principles, and to aid this, the authors name three common ways research practices infringe these principles, suggest a step-by-step process for aligning research choices with the principles, provide rules of thumb for achieving alignment, and give a worked case. The essay concludes by identifying support needed by researchers to act in accord with the proposed framework. (shrink)

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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)

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We agree with Chapman et al. (2025) that the Common Rule needs revision, particularly regarding the application of artificial intelligence and machine learning (AI/ML) in health research with Indig...

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In Bester’s article (2018) challenging the use of the harm principle and advocating sole reliance on the use of a best interest standard (BIS) in pediatric decision-making, we believe that the auth...

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Recent calls to address racism in bioethics reflect a sense of urgency to mitigate the lethal effects of a lack of action. While the field was catalyzed largely in response to pivotal events deeply rooted in racism and other structures of oppression embedded in research and health care, it has failed to center racial justice in its scholarship, pedagogy, advocacy, and practice, and neglected to integrate anti-racism as a central consideration. Academic bioethics programs play a key role in determining the (...) field’s norms and practices, including methodologies, funding priorities, and professional networks that bear on equity, inclusion, and epistemic justice. This article describes recommendations from the Racial Equity, Diversity, and Inclusion (REDI) Task Force commissioned by the Association of Bioethics Program Directors to prioritize and strengthen anti-racist practices in bioethics programmatic endeavors and to evaluate and develop specific goals to advance REDI. (shrink)

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The authors examine the scientific possibility and the legal and ethical implications of using DNA forensic technology, through partial matches to DNA from crime scenes, to turn into suspects the relatives of people whose DNA profiles are in forensic databases.

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Philosophers of education are largely unaware of Dewey's concept of transactionalism, yet it is implicit in much of his philosophy, educational or otherwise from the late 1890s onwards. Written by scholars from Belgium, Italy, Norway, Sweden, and the USA, this book shows how transactionalism can offer an entirely new way of understanding teaching and learning, the sociocultural dimension of education, and educational research. The contributors show how the concept helps us to see beyond an array of false dualisms, such as (...) mind versus body, self versus society, and organism versus environment, as well as an equally vast array of binaries, such as inside-outside, presence-absence, and male-female. They introduce the key critical ideas that transactionalism represents including emergence; living in a world without a within; the temporally and extensionally distributed nature of meaning, mind, and self. The theoretical discussion is grounded in practical discussions of educational issues and settings including museum education, coding and computer science, drama, teacher education, policy reform, and the Covid-19 pandemic. (shrink)

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_John Dewey and Continental Philosophy_ provides a rich sampling of exchanges that could have taken place long ago between the traditions of American pragmatism and continental philosophy had the lines of communication been more open between Dewey and his European contemporaries. Since they were not, Paul Fairfield and thirteen of his colleagues seek to remedy the situation by bringing the philosophy of Dewey into conversation with several currents in continental philosophical thought, from post-Kantian idealism and the work of Friedrich Nietzsche (...) to twentieth-century phenomenology, hermeneutics, and poststructuralism. This unique volume includes discussions comparing and contrasting Dewey with the German philosophers G. W. F. Hegel, Friedrich Nietzsche, Martin Heidegger, and Hans-Georg Gadamer on such topics as phenomenology, naturalism, organicism, contextualism, and poetry. Others investigate a series of connections between Dewey and contemporary French philosophy, including the notions of subjectivity, education, and the critique of modernity in Michel Foucault; language and politics in Jacques Derrida; and the concept of experience in Gilles Deleuze. Also discussed is the question of whether we can identify traces of _Bildung_ in Dewey’s writings on education, and pragmatism’s complex relation to twentieth-century phenomenology and hermeneutics, including the problematic question of whether Heidegger was a pragmatist in any meaningful sense. Presented in intriguing pairings, these thirteen essays offer different approaches to the material that will leave readers with much to deliberate. _ John Dewey and Continental Philosophy_ demonstrates some of the many connections and opportunities for cross-traditional thinking that have long existed between Dewey and continental thought, but have been under-explored. The intersection presented here between Dewey’s pragmatism and the European traditions makes a significant contribution to continental and American philosophy and will spur new and important developments in the American philosophical debate. (shrink)

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This chapter presents an edited e-mail discussion based on the philosophical conversations at a conference held in Cologne, Germany, in December 2001. The discussion proceeds in three steps. First, the contributors discuss selected questions about their contributions, roughly following the sequence of the chapters in Part II of this book. Second, the contributors ask more general questions about Dewey, Pragmatism, and constructivism. Finally, the chapter ends with brief statements about why Dewey is still an indispensible thinker for them. As they (...) clarify their differences and seek common ground, they articulate concepts such as power, truth, relativism, inquiry, and democracy from Pragmatist and interactive constructivist vantage points, in ways designed to render the preceding essays even more accessible. In their views, the concluding discussion demonstrates both the enduring relevance of classical Pragmatism and the challenge of its reconstruction from the perspective of the Cologne program of interactive constructivism. (shrink)

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"We become what we love," states JimGarrison in Dewey and Eros: Wisdom and Desire in the Art of Teaching. This provocative book represents a major new interpretation of Dewey's education philosophy. It is also an examination of what motivates us to teach and to learn, and begins with the idea of education of eros (i.e., passionate desire)-"the supreme aim of education" as the author puts it-and how that desire results in a practical philosophy that guides us in recognizing (...) what is essentially good or valuable.Garrison weaves these threads of ancient wisdom into a critical analysis of John Dewey's writings that reveal an implicit theory of eros in reasoning, and the central importance of educating eros to seek "the Good." Chapters: Plato's Symposium: Eros, the Beautiful, and the Good • Care, Sympathy, and Community in Classroom Teaching: Feminist Reflections on the Expansive Self • Play-Doh, Poetry, and "Ethereal Things" • The Aesthetic Context of Inquiry and the Teachable Moment • The Education of Eros: Critical and Creative Value Appraisal • Teaching and the Logic of Moral Perception This book can be used in graduate courses in foundations, teacher education, philosophy of education, qualitative research, arts and education, language and literacy, and women and education. JimGarrison is Professor of Philosophy of Education at Virginia Tech in Blacksburg, VA. He is pastpresident of the John Dewey Society and a winner of the Society's Outstanding Achievement Award. (shrink)

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In a series of articles, Snyder has developed the idea of simultaneous situations and that concept's implications for physics and psychology . In recent articles , he develops the application of the concept to the Einstein, Poldsky, and Rosen Gedankenexperiment that utilized spacelike separated events to solve the problem that arises in Bohr's complimentarity interpretation of quantum mechanics. In the course of his most recent article , Snyder made several criticisms ofGarrison in order to strenghten Snyder's argument for (...) a cognitive-interpretive activity in the gedankenexperiment. These criticisms are addressed and Snyder's Einsteinian realism is contrasted withGarrison's verificationist stance. (shrink)

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This distinctive collection by scholars from around the world focuses upon the cultural, educational, and political significance of Richard Rorty's thought. The nine essays which comprise the collection examine a variety of related themes: Rorty's neopragmatism, his view of philosophy, his philosophy of education and culture, Rorty's comparison between Dewey and Foucault, his relation to postmodern theory, and, also his form of political liberalism.

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Recently, feminists like Jane Roland-Martin, Elizabeth Young-Bruehl, and others have advocated a conversational metaphor for thinking and rationality, and our image of the rational person. Elizabeth Young-Bruehl refers to thinking as a “constant interconnecting of representations of experiences and an extension of how we hear ourselves and others. There are numerous disadvantages to thinking about thinking as a conversation.We think there are difficulties in accepting the current formulation of the conversational metaphor without question. First, there is danger that we will (...) lose important dialectical connections like that between the self and society. Second, the conversational metaphor alone cannot fully express the way conversations are constructed. We will want to take up the notion of narrative as a metaphor for thinking advocated by Susan Bordo, Alasdair MacIntyre, Jerome Bruner, and others, including Mary Belenky and her colleagues.Eventually, we want to champion narrative and the dramatic narrative of culture as a metaphor for thinking that involves such expressions as sights, insights, silences, as well as sounds, moments of mood and poetic moments. The dramatic narrative provides the structural possibilities needed to criticize certain kinds of conversations, in order to talk about the relations of public and private, self and society and most importantly, about the drama of our lives within and without.The dramatic narrative for thinking helps dispel the dangerous dualisms of mind and body that not even conversation or narration alone can banish, and allows us to frame questions about education that do not require us to separate mind from body. The dramatic narrative metaphor for thinking lets us show who we are, act out what we think, and reconstruct rationality to reflect what many women, and some men, do. (shrink)

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Countless contracts have been undermined by the COVID-19 pandemic of 2020 as well as government orders to contain it. Flights have been canceled, concerts have been called off, and dorms have been closed, just to name a few. Do these all count as breaches of contract—or are the parties excused due to the extraordinary circumstances? And how should the losses be allocated between the parties? The law provides one set of answers to these questions; ethics offers another. With a focus (...) on American law and Jewish ethics, this paper shows that the two systems are in accord with some respects and differ in others: Both law and Jewish ethics would excuse a party who cannot complete his contract due to a force beyond his control, like the COVID-19 pandemic. Yet Jewish ethics would require that the excused party still be paid, while American law would not. (shrink)

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walt whitman writes: “The Americans of all nations at any time upon the earth have probably the fullest poetical nature”. Naoko Saito is an American philosopher and something of a Whitmanesque philosophical poet. Saito’s book is “the product of many years spent reading and studying American philosophy”. She further indicates: “Mostly I have done this from a remote part of the world—far from America across the Pacific Ocean—and, like so many others, in a language that is not my own”. Saito (...) is a scholar in and of translation.Saito states that the “tensioned relationship between Dewey and Emerson, and more broadly pragmatism and American transcendentalism... is carried forward into the present... (shrink)

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This is a brief rejoinder to Harvey Siegel’s ‘Dangerous Dualisms or Murky Monism? A Reply to JimGarrison’ (35·4), which was itself a critical response to my own recent paper in this journal (33·2). This is an attempt to sum up the key points of the Deweyan pragmatism that I argue for, and hence those that Siegel opposes. It is not an attempt to settle the debate, but rather to clarify our differences.

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