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)

As sharing and secondary research use of biospecimens increases, IRBs and researchers face the challenge of protecting and respecting donors without comprehensive regulations addressing the human subject protection issues posed by biobanking. Variation in IRB biobanking policies about these issues has not been well documented.

In this issue of the American Journal of Bioethics, Kraft and colleagues (2018) provide important insights into the role trust plays in donor's decisions to contribute data and samples to local bio...

In the article, “Precision Medicine for Whom? Public Health Outputs from “Genomics England” and “All of Us” to Make Up for Upstream and Downstream Exclusion,” Galasso focuses on how marginalized pe...

The COVID-19 pandemic has resulted in widespread disruption of the typical way of doing things. In nearly every industry, responses to the pandemic have brought about departures from standard opera...

There may be compelling reasons to return to parents a limited subset of results from research conducted using residual newborn screening dried blood samples. This article explores the circumstances under which research results might be returned, as well as the mechanisms by which state newborn screening programs might facilitate the return of research results. The scope of any responsibility to return results of research conducted using DBS should be assessed in light of the potential impact on the primary mission of (...) state newborn screening programs. (shrink)

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a given disease (...) can depend on the education, financial resources, and social capital available to the patients in a given community. In this article, we utilize three case examples to illustrate ethical challenges at the intersection of rare diseases, advocacy and justice, including how reliance on advocacy in rare disease may drive unintended consequences for equity. We conclude with a discussion of opportunities for diverse stakeholders to begin to address these challenges. (shrink)

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

Many scientists and doctors hope that affordable genome sequencing will lead to more personalized medical care and improve public health in ways that will benefit children, families, and society more broadly. One hope in particular is that all newborns could be sequenced at birth, thereby setting the stage for a lifetime of medical care and self‐directed preventive actions tailored to each child's genome. Indeed, commentators often suggest that universal genome sequencing is inevitable. Such optimism can come with the presumption that (...) discussing the potential limits, cost, and downsides of widespread application of genomic technologies is pointless, excessively pessimistic, or overly cautious. We disagree. Given the pragmatic challenges associated with determining what sequencing data mean for the health of individuals, the economic costs associated with interpreting and acting on such data, and the psychosocial costs of predicting one's own or one's child's future life plans based on uncertain testing results, we think this hope and optimism deserve to be tempered.In the analysis that follows, we distinguish between two reasons for using sequencing: to diagnose individual infants who have been identified as sick and to screen populations of infants who appear to be healthy. We also distinguish among three contexts in which sequencing for either diagnosis or screening could be deployed: in clinical medicine, in public health programs, and as a direct‐to‐consumer service. Each of these contexts comes with different professional norms, policy considerations, and public expectations. Finally, we distinguish between two main types of genome sequencing: targeted sequencing, where only specific genes are sequenced or analyzed, and whole‐exome or whole‐genome sequencing, where all the DNA or all the coding segments of all genes are sequenced and analyzed.In a symptomatic newborn, targeted or genome‐wide sequencing can help guide other tests for diagnosis or for specific treatment that is urgently needed. Clinicians use the infant's symptoms (or phenotype) to interrogate the sequencing data. These same complexities and uncertainties, however, limit the usefulness of genome‐wide sequencing as a population screening tool. While we recognize considerable benefit in using targeted sequencing to screen for or detect specific conditions that meet the criteria for inclusion in newborn screening panels, use of genome‐wide sequencing as a sole screening tool for newborns is at best premature. We conclude that sequencing technology can be beneficially used in newborns when that use is nuanced and attentive to context. (shrink)

This article provides practical guidance for researchers who wish to enroll and collect data from pediatric research participants through online and mobile platforms, with a focus on the involvement of both children and their parents in the decision to participate.

How do we know right from wrong? Do we even have moral knowledge? Moral epistemology studies these and related questions about our understanding of virtue and vice. It is one of philosophy’s perennial problems, reaching back to Plato, Aristotle, Aquinas, Locke, Hume and Kant, and has recently been the subject of intense debate as a result of findings in developmental and social psychology. Throughout the book Zimmerman argues that our belief in moral knowledge can survive sceptical challenges. He also draws (...) on a rich range of examples from Plato’s Meno and Dickens’ David Copperfield to Bernard Madoff and Saddam Hussein. (shrink)

I reconstruct J. H. Lambert’s views on how practical grounds relate to epistemic features, such as certainty. I argue, first, that Lambert’s account of moral certainty does not involve any distinctively practical influence on theoretical belief. However, it does present an interesting form of fallibilism about justification as well as a denial of a tight link between knowledge and action. Second, I argue that for Lambert, the persistence principle that underwrites induction is supported by practical reasons to believe; this indicates (...) that Lambert is a moderate pragmatist about reasons for theoretical belief. (shrink)

This collection of essays is the first of its kind to focus on the relationship between composition and identity. Twelve original articles--written by internationally renowned scholars and rising stars in the field--argue for and against the controversial doctrine that composition is identity.--Provided by publisher.

In lieu of an abstract, here is a brief excerpt of the content:Philosophy and Literature 26.2 (2002) 456-458 [Access article in PDF] Quarrel & Quandary, by Cynthia Ozick; xiii & 247 pp. New York: Alfred A. Knopf, 2000, $25.00. Ask Cynthia Ozick to define a Jewish book and she launches into an extended defense of the integrity of the body of traditional Jewish writing: Torah, Talmud, liturgy, ethics, and philosophy. Ozick takes her Judaism seriously; its literature, in the broad sense, (...) for her, is didactic and dedicated to the promotion of virtue attained through study. She takes literature seriously too and strenuously defends fiction as an act of the "free imagination," with an equal emphasis on both elements of that phrase although, Ozick rightly argues, the imagination by definition is free. Thus, a Jewish book and Jewish fiction are contradictory. To different degrees, emphasis, and purpose, both are freighted by moral purpose.So are the various Ozicks! A traditional Jew, a Jewish American writer, a novelist, an essayist, a classical feminist—all describe Ozick who obviously belies all simple categories save one: writer. Yet even as a writer, Ozick is complex and conflicted, lamenting that she hasn't written enough fiction but claiming that it simply could not have been different.While Ozick may not be as prolific as she would like, she is a commanding presence in American fiction and belles lettres. Her latest collection of non-fiction work, Quarrel & Quandary, demonstrates her clear thinking, breadth of expertise, seriousness, and intelligence. Ranging from the autobiographical to the political, each essay is informed by history and none is light nor nostalgic. "Dostoyevsky's Unabomber" is perceptive and regrettably prescient in its depiction of the philosopher-murderer. In "The Posthumous Sublime," Ozick walks us through the "grieving that has been made beautiful" in the four stories of Sebald's The Emigrants. "A Drug Store Eden" is a warm and familiar but never sentimental portrait of her hard-working parents and her Uncle Ruby. The humor of "Lovesickness" and "How I Got Fired from My Summer Job" resonate for middle-class, studious, awkward young girls. In another essay, awe-inspired respect for Kafka is balanced by reverent awe of God, which is tempered by an uncomfortable acceptance of Job's acquiescence. Where is Job's "impious impatience" in the face of his renewed prosperity and health?, she asks. Where is "the father's bitter grief over the loss" of his first family? In quintessential [End Page 456] Ozick, she acknowledges the staying power of the ancient sages who argued God's majesty at the same time reserving her right to "philosophic doubt," especially in light of the Shoah.Two essays in this volume are exceptional in their insight and influence. "Who Owns Anne Frank?" should put to rest the sentimentalization of Anne Frank and her diary. It should stop the shameless marketing of the Holocaust—the catastrophe that marked a century—as yet another genocide. Ozick's relentless focus on the reality of Nazi evil and its consequent waste of human lives and potential should abort further distortions about Anne's short life, but it probably won't. The diary has been "bowdlerized, distorted, transmuted, traduced, reduced... infantilized, Americanized, homogenized, sentimentalized, falsified, kitschified, and, in fact, blatantly and arrogantly denied." It has "nonsensically" been described as cheerful and optimistic, even in the face of the fact that Anne, along with other members of the attic community, were targeted for murder and that, one month before liberation, Anne and her sister Margot died as prisoners in the unimaginable horror of Bergen Belsen, a camp so lice-ridden and disease-infested that it was burned to ashes by the British rather than cleansed, disinfected, or rehabilitated.Ozick tracks the controversy centered on the transformation of Anne's diary into the Americanized, christianized, perky Junior Miss that American audiences would accept, including the fabrication of lines that rendered the targeting of the Jews as one victim among many: "We're not the only people that've had to suffer" instead of Anne's more thoughtful and complex—and potentially problematic—"In the eyes of the world, we're doomed.... Who knows, maybe our religion will teach... (shrink)

Bayesian Conditionalization is a widely used proposal for how to update one’s beliefs upon the receipt of new evidence. This is in part because of its attention to the totality of one’s evidence, which often includes facts about what one’s new evidence is and how one has come to have it. However, an increasingly popular position in epistemology holds that one may gain new evidence, construed as knowledge, without being in a position to know that one has gained this evidence. (...) These are cases of KK-Failure, cases where one knows p but is not in a position to know that one knows p. This paper assumes that certain KK-Failures are possible and argues that Conditionalization goes wrong in those cases. (shrink)

Religious-secular distinctions have been crucial to the way in which modern governments have rationalised their governance and marked out their sovereignty – as crucial as the territorial boundaries that they have drawn around nations. The authors of this volume provide a multi-dimensional picture of how the category of religion has served the ends of modern government. They draw on perspectives from history, anthropology, moral philosophy, theology and religious studies, as well as empirical analysis of India, Japan, Mexico, the United States, (...) Israel-Palestine, France and the United Kingdom. (shrink)

This paper extends three decades of work arguing that researchers who discuss consciousness should not restrict themselves only to (adult) human minds, but should study (and attempt to model) many kinds of minds, natural and artificial, thereby contributing to our understanding of the space containing all of them. We need to study what they do or can do, how they can do it, and how the natural ones can be emulated in synthetic minds. That requires: (a) understanding sets of requirements (...) that are met by different sorts of minds, i.e. the niches that they occupy, (b) understanding the space of possible designs, and (c) understanding complex and varied relationships between requirements and designs. Attempts to model or explain any particular phenomenon, such as vision, emotion, learning, language use, or consciousness lead to muddle and confusion unless they are placed in that broader context. A methodology for making progress is summarised and a novel requirement proposed for a theory of how human minds work: the theory should support a single generic design for a learning, developing system that, in addition to meeting familiar requirements, should be capable of developing different and opposed philosophical viewpoints about consciousness, and the so-called hard problem. In other words, we need a common explanation for the mental machinations of mysterians, materialists, functionalists, identity theorists, and those who regard all such theories as attempting to answer incoherent questions. No designs proposed so far come close. (shrink)

This article seeks a better understanding of how Rudolf Steiner envisioned his reform pedagogy as a site of spiritual learning (for example through art, seasonal festivals, ritual drama, etc.), but also as a specific site intended to resist the encroaching influence of capitalism, materialism, and corporatism spreading in Germany following the First World War. Steiner’s ideas about education did not emerge in a vacuum. He was inspired by and connected with other forms of communist, socialist, and Lebensreform movements in his (...) time. Yet Steiner more actively embraced and incorporated esotericism into his pedagogical project. How did his approach differ from the other anti-capitalist and anti-materialist-inspired schools that were spreading, and what role did esotericism play in terms of developing Waldorf students? This article explores these questions and contributes to a recontextualization of both Steiner and esotericism taking place in the academy. (shrink)

I examine the link between extensionality principles of classical mereology and the anti‐symmetry of parthood. Varzi's most recent defence of extensionality depends crucially on assuming anti‐symmetry. I examine the notions of proper parthood, weak supplementation and non‐well‐foundedness. By rejecting anti‐symmetry, the anti‐extensionalist has a unified, independently grounded response to Varzi's arguments. I give a formal construction of a non‐extensional mereology in which anti‐symmetry fails. If the notion of ‘mereological equivalence’ is made explicit, this non‐anti‐symmetric mereology recaptures all of the structure (...) of classical mereology. (shrink)

The ability to improvise represents one of the highest levels of musical achievement. An improviser must master a musical language to such a degree as to be able to spontaneously invent stylistically idiomatic compositions on the spot. This feat is one of the pinnacles of human creativity, and yet its cognitive basis is poorly understood. What musical knowledge is required for improvisation? How does a musician learn to improvise? What are the neural correlates of improvised performance? In 'The Improvising Mind' (...) these questions are explored through an interdisciplinary approach that draws on cognitive neuroscience, study of historical pedagogical treatises on improvisation, interviews with improvisers, and musical analysis of improvised performances. Findings from these treatises and interviews are discussed from the perspective of cognitive psychological theories of learning, memory, and expertise. Musical improvisation has often been compared to 'speaking a musical language.' While past research has focussed on comparisons of music and language perception, few have dealt with this comparison in the performance domain. In this book, learning to improvise is compared with language acquisition, and improvised performance is compared with spontaneous speech from both theoretical and neurobiological perspectives. (shrink)

While moral arguments for vegetarianism have been explored in great depth, the arguments for veganism seem less clear. Although many animals used for milk and eggs are forced to live miserable lives on factory farms, it’s possible to raise animals as food resources on farms where the animals are treated more humanely and never slaughtered. Under more humane conditions, do we harm animals to use them for food? I argue that, even under humane conditions, using animals for food typically harms (...) animals by restricting their freedom. My argument raises an important question about the extent to which animals are harmed when their freedom is restricted. On one view, it is possible to restrict animals’ freedom without harming them so long as we don’t make them suffer. This view underestimates the value of freedom for animals. Even if animals aren’t made to suffer, restricting their freedom can harm them insofar as it deprives them of freely pursuing their enjoyments in life. My argument has implications for not only the ethics of using animals as food resources but also the ethics of using animals in zoos and circuses. I examine these implications and also consider what we should do with farm animals if we cease using them for food. (shrink)

Does a commitment to mereological universalism automatically bring along a commitment to the controversial doctrine of mereological extensionalism—the view that objects with the same proper parts are identical? A recent argument suggests the answer is ‘yes’. This paper attempts a systematic response to the argument, considering nearly every available line of reply. It argues that only one approach—the mutual parts view—can yield a viable mereology where universalism does not entail extensionalism.

The dominant theory of parts and wholes – classical extensional mereology – has faced a number of challenges in the recent literature. This article gives a sampling of some of the alleged counterexamples to some of the more controversial principles involving the connections between parthood and identity. Along the way, some of the main revisionary approaches are reviewed. First, counterexamples to extensionality are reviewed. The ‘supplementation’ axioms that generate extensionality are examined more carefully, and a suggested revision is considered. Second, (...) the paper considers an alternative approach that focuses the blame on antisymmetry but allows us to keep natural supplementation axioms. Third, we look at counterexamples to the idempotency of composition and the associated ‘parts just once’ principle. We explore options for developing weaker mereologies that avoid such commitments. (shrink)

A personal journey in and through comparison -- To what can I compare thee -- History -- Possibilities -- Context -- Future.

Polarization is a topic of intense interest among social scientists, but there is significant disagreement regarding the character of the phenomenon and little understanding of underlying mechanics. A first problem, we argue, is that polarization appears in the literature as not one concept but many. In the first part of the article, we distinguish nine phenomena that may be considered polarization, with suggestions of appropriate measures for each. In the second part of the article, we apply this analysis to evaluate (...) the types of polarization generated by the three major families of computational models proposing specific mechanisms of opinion polarization. (shrink)

The public rejection of scientific claims is widely recognized by scientific and governmental institutions to be threatening to modern democratic societies. Intense conflict between science and the public over diverse health and environmental issues have invited speculation by concerned officials regarding both the source of and the solution to the problem of public resistance towards scientific and policy positions on such hot-button issues as global warming, genetically modified crops, environmental toxins, and nuclear waste disposal. The London Royal Society’s influential report (...) “Public Understanding of Science”, which spearheaded the now-thriving area of science... (shrink)

Polarization is a topic of intense interest among social scientists, but there is significant disagreement regarding the character of the phenomenon and little understanding of underlying mechanics. A first problem, we argue, is that polarization appears in the literature as not one concept but many. In the first part of the article, we distinguish nine phenomena that may be considered polarization, with suggestions of appropriate measures for each. In the second part of the article, we apply this analysis to evaluate (...) the types of polarization generated by the three major families of computational models proposing specific mechanisms of opinion polarization. (shrink)

In her recent book, Democratic Reason, Hélène Landemore argues that, when evaluated epistemically, “a democratic decision procedure is likely to be a better decision procedure than any non-democratic decision procedures, such as a council of experts or a benevolent dictator” (p. 3). Landemore's argument rests heavily on studies of collective intelligence done by Lu Hong and Scott Page. These studies purport to show that cognitive diversity – differences in how people solve problems – is actually more important to overall group (...) performance than average individual ability – how smart the individual members are. Landemore's argument aims to extrapolate from these results to the conclusion that democracy is epistemically better than any non-democratic rival. I argue here that Hong and Page's results actually undermine, rather than support, this conclusion. More specifically, I argue that the results do not show that democracy is better than any non-democratic alternative, and that in fact, they suggest the opposite – that at least some non-democratic alternatives are likely to epistemically outperform democracy. (shrink)

Proponents of political liberalism standardly assume that the citizens of an ideal liberal society would be overwhelmingly reasonable. I argue that this assumption violates political liberalism's own constraints of realism—constraints that are necessary to frame the central problem that political liberalism aims to solve, that is, the problem of reasonable pluralism. To be consistent with these constraints, political liberalism must recognize that, as with reasonable pluralism, widespread support for unreasonable moral and political views is an inevitable feature of any liberal (...) society. I call this the fact of unreasonable pluralism. This fact threatens Rawlsian political liberalism's account of stability because an overlapping consensus cannot stably order a society pervaded by unreasonable views. My argument also raises questions about the coherence of Rawls's conception of ideal theory. (shrink)

ABSTRACT This article distinguishes nine senses of polarization and provides formal measures for each one to refine the methodology used to describe polarization in distributions of attitudes. Each distinct concept is explained through a definition, formal measures, examples, and references. We then apply these measures to GSS data regarding political views, opinions on abortion, and religiosity—topics described as revealing social polarization. Previous breakdowns of polarization include domain-specific assumptions and focus on a subset of the distribution’s features. This has conflated multiple, (...) independent features of attitude distributions. The current work aims to extract the distinct senses of polarization and demonstrate that by becoming clearer on these distinctions we can better focus our efforts on substantive issues in social phenomena. (shrink)

The evidence-based medicine (EBM) movement is touted as a new paradigm in medical education and practice, a description that carries with it an enthusiasm for science that has not been seen since logical positivism flourished (circa 1920–1950). At the same time, the term ‘‘evidence-based medicine’’ has a ring of obviousness to it, as few physicians, one suspects, would claim that they do not attempt to base their clinical decision-making on available evidence. However, the apparent obviousness of EBM can and should (...) be challenged on the grounds of how ‘evidence’ has been problematised in the philosophy of science. EBM enthusiasm, it follows, ought to be tempered. The post-positivist, feminist, and phenomenological philosophies of science that are examined in this paper contest the seemingly unproblematic nature of evidence that underlies EBM by emphasizing different features of the social nature of science. The appeal to the authority of evidence that characterizes evidence-based practices does not increase objectivity but rather obscures the subjective elements that inescapably enter all forms of human inquiry. The seeming common sense of EBM only occurs because of its assumed removal from the social context of medical practice. In the current age where the institutional power of medicine is suspect, a model that represents biomedicine as politically disinterested or merely scientific should give pause. (shrink)