Background Autism self-advocates’ views regarding genetic tests for autism are important, but critical questions about their perspectives arise.Methods We interviewed 11 autism self-advocates, recruited through autism self-advocacy websites, for 1 h each.Results Interviewees viewed genetic testing and its potential pros and cons through the lens of their own indiviudal perceived challenges, needs and struggles, especially concerning stigma and discrimination, lack of accommodations and misunderstandings from society about autism, their particular needs for services, and being blamed by others and by themselves (...) for autistic traits. Their views of genetic testing tended not to be binary, but rather depended on how the genetic test results would be used. Interviewees perceived pros of genetic testing both in general and with regard to themselves (e.g., by providing “scientific proof” of autism as a diagnosis and possibly increasing availability of services). But they also perceived disadvantages and limitations of testing (e.g., possible eugenic applications). Participants distinguished between what they felt would be best for themselves and for the autistic community as a whole. When asked if they would undergo testing for themselves, if offered, interviewees added several considerations (e.g., undergoing testing because they support science in general). Interviewees were divided whether a genetic diagnosis would or should reduce self-blame, and several were wary of testing unless treatment, prevention or societal attitudes changed. Weighing these competing pros and cons could be difficult.Conclusions This study, the first to use in-depth qualitative interviews to assess views of autism self-advocates regarding genetic testing, highlights key complexities. Respondents felt that such testing is neither wholly good or bad in itself, but rather may be acceptable depending on how it is used, and should be employed in beneficial, not harmful ways. These findings have important implications for practice, education of multiple stakeholders, research, and policy. (shrink)

Voluntariness of consent to research has not been sufficiently explored through empirical research. The aims of this study were to develop a more comprehensive approach to assessing voluntariness and to generate preliminary data on the extent and correlates of limitations on voluntariness. We developed a questionnaire to evaluate subjects’ reported motivations and constraints on voluntariness. 88 subjects in five different areas of clinical research—substance abuse, cancer, HIV, interventional cardiology, and depression—were assessed. Subjects reported a variety of motivations for participation. Offers (...) of financial incentives were common but not influential, pressures from others were rare, and no threats were reported. However, certain financial incentives and—paradoxically—altruistic motivations led some subjects to feel more constrained. Consistent with previous studies, no one pattern of motivation was common to all research subjects. There was little evidence of constrained voluntariness, but some suggestion of areas of concern. Voluntariness appears to be susceptible to systematic empirical investigation. (shrink)

Genomic research—including whole genome sequencing and whole exome sequencing—has a growing presence in contemporary biomedical investigation. The capacity of sequencing techniques to generate results that go beyond the primary aims of the research—historically referred to as “incidental findings”—has generated considerable discussion as to how this information should be handled—that is, whether incidental results should be returned, and if so, which ones.Federal regulations governing most human subjects research in the United States require the disclosure of “the procedures to be followed” in (...) the research as part of the informed consent process. It seems reasonable to assume—and indeed, many commentators have concluded—that genomic investigators will be expected to inform participants about, among other procedures, the prospect that incidental findings will become available and the mechanisms for dealing with them. Investigators, most of whom will not have dealt with these issues before, will face considerable challenges in framing meaningful disclosures for research participants.To help in this task, we undertook to identify the elements that should be included in the informed consent process related to incidental findings. We did this by surveying a large number of genomic researchers (n = 241) and by conducting in‐depth interviews with a smaller number of researchers (n = 28) and genomic research participants (n = 20). Based on these findings, it seems clear to us that routine approaches to informed consent are not likely to be effective in genomic research in which the prospect of incidental findings exists. Ensuring that participants’ decisions are informed and meaningful will require innovative approaches to dealing with the consent issue. We have identified four prototypical models of a consent process for return of incidental findings. (shrink)

Participants in clinical studies are frequently unable to remember study information for the duration of their participation in the research. Along with a nine-member work group and a seven-member advisory group, we determined that six elements of consent are necessary to uphold the validity of consent over time: awareness of ongoing participation; understanding the right to withdraw; understanding that withdrawal will not influence other treatment options; knowledge of the general purpose of the research; knowledge of potential risks of participation; and (...) understanding of the differences between traditional, individualized clinical care and standardized treatment during research participation. Based on these important elements, we developed an Assessment of Sustained Informed Consent as a tool to periodically review a protocol’s essential elements with its participants. We hope this will be a useful means of confirming research participants’ continued knowledge of the critical elements of consent, and of identifying those subjects who need reminding. (shrink)

Offering an ambitious study of the aesthetics of violence across art, literature, film and theatre, this volume brings together traditional German aesthetic and social theory with the modern problem of violence in art. Written in an engaging style, the book includes examples range from Homer and Shakespeare to slasher films and performance art.

Reply to a commentary by Felicitas Holzer and Ignacio Mastroleoon “Models of Consent to Return of Incidental Findings in Genomic Research.”.

The new National Institutes of Health (NIH) Policy on the Use of a Single Institutional Review Board (sIRB) for Multi-Site Research was adopted primarily to simplify and speed the review of complex multisite clinical trials. However, speeding review requires overcoming a number of obstacles. Perhaps the most substantial obstacle is the time and effort needed to develop reliance agreements among the participating sites. We conducted 102 semistructured interviews with sIRB personnel, including directors, chairs, reviewers, and staff, from 20 IRBs that (...) acted as sIRBs for multisite research, including 6 commercial/independent sIRBs, and 10 university-based academic and 4 federal sIRBs. Almost without exception, the interviewees agreed that reliance agreements were complex, difficult to develop, and time-consuming. A major problem for relying sites was that different agreements specified different responsibilities for the relying sites. Attitudes differed about whether these problems will be resolved as IRB staff and managers become more experienced with sIRBs. However it is clear that the process of developing reliance agreements must be simplified. Federal assistance in standardizing at least some sections of reliance agreements might reduce the difficulties involved. (shrink)

Institutional review boards are almost universally considered to be overworked and understaffed. They also require substantial commitments of time and resources from their members. Although some surveys report average IRB memberships of 15 people or more, federal regulations require only five. We present data on IRB meetings at eight of the top 25 academic medical centers in the United States funded by the National Institutes of Health. These data indicate substantial contributions from primary reviewers and chairs during protocol discussions but (...) little from other members, which implies that it may be possible for smaller IRBs to accomplish the same tasks with no reduction in the quality of review. (shrink)

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)

Electronic institutional review board systems (eIRBs) have become an integral component in ensuring compliance with Human Research Protection Program (HRPP) and IRB requirements. Despite this, few of these systems are configured to administer the single IRB (sIRB) process mandated by the National Institutes of Health (NIH) for multisite research. We interviewed 103 sIRB administrators, chairs, members, and staff members about their experiences with sIRB multisite research review. We observed three main obstacles to adapting existing eIRB systems to accommodate the sIRB (...) process: (1) Existing systems are not designed for sIRBs and are not configured to administer sIRB responsibilities, (2) they are not interoperable, and (3) resources to improve existing systems are lacking. Our findings suggest that IRBs that act as an sIRB will need major changes to their electronic systems in order to accommodate sIRB processes. These difficulties threaten both the ability of IRBs to focus on ethical rather than bureaucratic problems and the efficiency of multisite trials. (shrink)

The abstract structure of inquiry - the process of acquiring and changing beliefs about the world - is the focus of this book which takes the position that the "pragmatic" rather than the "linguistic" approach better solves the philosophical problems about the nature of mental representation, and better accounts for the phenomena of thought and speech. It discusses propositions and propositional attitudes (the cluster of activities that constitute inquiry) in general and takes up the way beliefs change in response to (...) potential new information, suggesting that conditional propositions should be understood as projections of epistemic policies onto the world.Robert C. Stalnaker is a professor in the Sage School of Philosophy at Cornell University. A Bradford Book. (shrink)

This paper revisits some foundational questions concerning the abstract representation of a discourse context. The context of a conversation is represented by a body of information that is presumed to be shared by the participants in the conversation – the information that the speaker presupposes a point at which a speech act is interpreted. This notion is designed to represent both the information on which context-dependent speech acts depend, and the situation that speech acts are designed to affect, and so (...) to be a representation of context that is appropriate for explaining the interaction of context and the contents expressed in them. After reviewing the motivating ideas and the outlines of the apparatus, the paper responds to a criticism of the framework, and considers the way it can help to clarify some phenomena concerning pronouns with indefinite antecedents. (shrink)

Theory of Mind is the ability to predict and understand the mental state of another. While ToM is theorized to play a role in language, we examined whether such a mentalizing ability plays an important role in establishing shared understanding in conversation. Pairs of participants engaged in a Lego model building task in which adirectorinstructed abuilderon how to create duplicate models from a prototype that only the director could see. We manipulated whether the director could see or could not see (...) the builder’s workspace. As predicted, the Mind in the Eyes test predicted accuracy when the workspace was hidden. A high mentalizing ability was an advantage when instructing, resulting in fewer errors, but may be a disadvantage when following instructions. This research indicates that ToM plays a key role in communicating information effectively in conversation. (shrink)

Theory of Mind is the ability to predict and understand the mental state of another. While ToM is theorized to play a role in language, we examined whether such a mentalizing ability plays an important role in establishing shared understanding in conversation. Pairs of participants engaged in a Lego model building task in which a director instructed a builder on how to create duplicate models from a prototype that only the director could see. We manipulated whether the director could see (...) or could not see the builder’s workspace. As predicted, the Mind in the Eyes test predicted accuracy when the workspace was hidden. A high mentalizing ability was an advantage when instructing, resulting in fewer errors, but may be a disadvantage when following instructions. This research indicates that ToM plays a key role in communicating information effectively in conversation. (shrink)

In the Western world it is usually taken as given that we all want happiness, and our educational arrangements tacitly acknowledge this. Happiness, Hope, and Despair argues, however, that education has an important role to play in deepening our understanding of suffering and despair as well as happiness and joy. Education can be uncomfortable, unpredictable, and unsettling; it can lead to greater uncertainty and unhappiness. Drawing on the work of Søren Kierkegaard, Miguel de Unamuno, Fyodor Dostoevsky, Simone Weil, Paulo Freire, (...) and others, Peter Roberts shows why these features of educational life need not be feared; to the contrary, they can be seen as a source of hope and human fulfilment. After years of negotiating an education system dominated by the language of competition, performance, and economic advancement, students and teachers often long for something different; they seek not just measurable success but also opportunities to ask searching questions of themselves and the world they encounter. Happiness, Hope, and Despair makes an important contribution toward meeting this need. It fosters a rethinking of the nature, purpose, and value of education, and opens up possibilities for further scholarly and professional inquiry. (shrink)

From the ferment of recent debates about the intellectual virtues, Roberts and Wood develop an approach they call 'regulative epistemology', exploring the connection between knowledge and intellectual virtue. In the course of their argument they analyse particular virtues of intellectual life - such as courage, generosity, and humility - in detail.

In their fine overview of supported decision making for persons with dynamic cognitive and functional impairments “at the margins of autonomy,” Peterson, Karlawish, and Largent query whether...

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)

Robert C. Stalnaker presents a set of essays on the structure of inquiry. First he focuses on the concepts of knowledge, belief, and partial belief, and on the rules and procedures we ought to use to determine what to believe. Then he explores the relations between conditionals and causal and explanatory concepts.

Friedrich Nietzsche is one of the most popular and controversial philosophers of the last 150 years. Narcissistic, idiosyncratic, hyperbolic, irreverent--never has a philosopher been appropriated, deconstructed, and scrutinized by such a disparate array of groups, movements, and schools of thought. Adored by many for his passionate ideas and iconoclastic style, he is also vilified for his lack of rigor, apparent cruelty, and disdain for moral decency. In Living with Nietzsche, Solomon suggests that we read Nietzsche from a very different point (...) of view, as a provocative writer who means to transform the way we view our lives. This means taking Nietzsche personally. Rather than focus on the "true" Nietzsche or trying to determine "what Nietzsche really meant" by his seemingly random and often contradictory pronouncements about "the Big Questions" of philosophy, Solomon reminds us that Nietzsche is not a philosopher of abstract ideas but rather of the dazzling personal insight, the provocative challenge, the incisive personal probe. He does not try to reveal the eternal verities but he does powerfully affect his readers, goading them to see themselves in new and different ways. It is Nietzsche's compelling invitation to self-scrutiny that fascinates us, engages us, and guides us to a "rich inner life." Ultimately, Solomon argues, Nietzsche is an example as well as a promulgator of "passionate inwardness," a life distinguished by its rich passions, exquisite taste, and a sense of personal elegance and excellence. (shrink)

Over a career spanning American history from the 1880s to the 1950s, John Dewey sought not only to forge a persuasive argument for his conviction that "democracy is freedom" but also to realize his democratic ideals through political activism. Widely considered modern America's most important philosopher, Dewey made his views known both through his writings and through such controversial episodes as his leadership of educational reform at the turn of the century; his support of American intervention in World War I (...) and his leading role in the Outlawry of War movement after the war; and his participation in both radical and anti-communist politics in the 1930s and 40s. Robert B. Westbrook reconstructs the evolution of Dewey's thought and practice in this masterful intellectual biography, combining readings of his major works with an engaging account of key chapters in his activism. Westbrook pays particular attention to the impact upon Dewey of conversations and debates with contemporaries from William James and Reinhold Niebuhr to Jane Addams and Leon Trotsky. Countering prevailing interpretations of Dewey's contribution to the ideology of American liberalism, he discovers a more unorthodox Dewey—a deviant within the liberal community who was steadily radicalized by his profound faith in participatory democracy. Anyone concerned with the nature of democracy and the future of liberalism in America—including educators, moral and social philosophers, social scientists, political theorists, and intellectual and cultural historians—will find John Dewey and American Democracy indispensable reading. (shrink)

In Pascal Boyer’s book Religion Explained inference systems are made to do a lot of work in his attempts to explain cognition in religion. These inference systems are systems in the brain that produces inferences when they are activated by things we perceive in our environment. According to Boyer they perceive things, produce explanations, and perform calculations. However, if Wittgenstein’s observation, that “only of a living human being and what resembles (behaves like) a living human being can one say: it (...) has sensations; it sees; is blind; hears; is deaf; is conscious or unconscious” is correct then it seems that Boyer’s talk of inference systems perceiving and inferring is confused. (shrink)

This article aims to clarify the view that thick concepts are irreducibly thick. I do this by putting the disentangling argument in its place and then setting out what nonreductivists about the thick are committed to. To distinguish the view from possible reductive accounts, defenders of irreducible thickness are, I argue, committed to the claim that evaluative concepts and properties are nonevaluatively shapeless. This in turn requires a commitment to (radical) holism and particularism. Nonreductivists are also committed to the claim (...) that a thick concept is in itself evaluative, and not evaluative because of any link to thin evaluation. (shrink)

The United States’ ambitious Precision Medicine Initiative proposes to accelerate exponentially the adoption of precision medicine, an approach to health care that tailors disease diagnosis, treatment, and prevention to individual variability in genes, environment, and lifestyle. It aims to achieve this by creating a cohort of volunteers for precision medicine research, accelerating biomedical research innovation, and adopting policies geared toward patients’ empowerment. As strategies to implement the PMI are formulated, critical consideration of the initiative's ethical and sociopolitical dimensions is needed. (...) Drawing on scholarship of nationalism and democracy, we discuss the PMI's construction of what we term “genomic citizenship”; the possible normative obligations arising therefrom; and the ethical, legal, and social challenges that will ensue. Although the PMI is a work in progress, discussion of the existing and emerging issues can facilitate the development of policies, structures, and procedures that can maximize the initiative's ability to produce equitable and socially sensitive outcomes. Our analysis can also be applied to other population-based, precision medicine research programs. (shrink)

Recent studies indicate that patients who are diagnosed with vegetative states may retain more awareness than their clinical assessments suggest. Disorders of consciousness traditionally have been diagnosed on the basis of outwardly observable behaviors alone, but new functional imaging studies have shown surprising levels of brain activity in some patients, indicating that even higher-level cognitive functions like language processing and visual imagery may be preserved. For example, one recently developed method purports to detect voluntary mental imagery solely on the basis (...) of neural response patterns observed with functional magnetic resonance imaging. This line of research has already led to some widely reported cases of patients who were discovered to have more brain activity than expected. In November 2009, Rom Houben, a Belgian man who was thought to be in a coma for 23 years, was diagnosed with locked-in syndrome through the use of neuroimaging; however, that assessment was later overturned by further testing. (shrink)

Abstract I distinguish various ways in which human life may be thought to be meaningful and present an account of what might be called existential meaningfulness. The account is neutral with respect to both theism and naturalism, but each is addressed in several places and the paper's main points are harmonious with certain versions of both. A number of important criteria for existential meaningfulness are examined, and special emphasis is placed on criteria centering on creativity and excellence, on contributing to (...) the well-being of persons, and on human relationships, particularly those pervaded by love. In the light of a conception of intrinsic goodness, the good life is compared with the meaningful life, and the relation between the two notions is explored. I argue that goodness in a life counts towards its meaningfulness and that the goodness of a life is sufficient for an important kind of meaningfulness. I also suggest that the overall notion of rewarding elements in a life-intrinsically good elements that are typically but not necessarily pleasurable-is a significant unifying concept that helps both in understanding existential meaningfulness and in integrating the various kinds of constituents in a life that conduce to its meaningfulness. (shrink)

'The arrow of time' refers to the curious asymmetry that distinguishes the future from the past. Reversing the Arrow of Time argues that there is an intimate link between the symmetries of 'time itself' and time reversal symmetry in physical theories, which has wide-ranging implications for both physics and its philosophy. This link helps to clarify how we can learn about the symmetries of our world, how to understand the relationship between symmetries and what is real, and how to overcome (...) pervasive illusions about the direction of time. Roberts explains the significance of time reversal in a way that intertwines physics and philosophy, to establish what the arrow of time means and how we can come to know it. This book is both mathematically and philosophically rigorous yet remains accessible to advanced undergraduates in physics and the philosophy of physics. This title is also available as Open Access on Cambridge Core. (shrink)

Controversy over the epistemology of disagreement endures because there is an unnoticed factor at work: the intrinsic value we give to self-trust. Even if there are many instances of disagreement where, from a strictly epistemic or rational point of view, we ought to suspend belief, there are other values at work that influence our all-things considered judgments about what we ought to believe. Hence those who would give equal-weight to both sides in many cases of disagreement may be right, from (...) the perspective of pure rationality. But their critics are right too, in seeing something undesirable in the consequences of giving equal weight. Among epistemologists, there is a tendency to set aside trust and other such non-epistemic factors, on the grounds that these are not germane to their topic. But ultimately, the value of self-trust shows signs of encroaching on the strictly epistemic question of when our beliefs may be said to be justified. Hence again, even if the equal-weighters are right about what is rational, they may be wrong about what knowledge requires. (shrink)

The second edition of Doing Ethics in Media continues its mission of providing an accessible but comprehensive introduction to media ethics, with a theoretical grounding in moral philosophy, to help students think clearly and systematically about dilemmas in the rapidly changing media environment. Each chapter highlights specific considerations, cases, and practical applications for the fields of journalism, advertising, digital media, entertainment, public relations, and social media. Six fundamental decision-making questions - the "5Ws and H" around which the book is organized (...) - provide a path for students to articulate the issues; understand applicable law and ethics codes; consider the needs of stakeholders; work through conflicting values; integrate philosophic principles; and pose a "test of publicity." Students are challenged to be active ethical thinkers through the authors' reader-friendly style and use of critical early-career examples. While most people will change careers several times during their lives, all of us are life-long media consumers, and Doing Ethics in Media prepares readers for that task. Doing Ethics in Media is aimed at undergraduate and graduate students studying media ethics in mass media, journalism, and media studies. It also serves students in rhetoric, popular culture, communication studies, and interdisciplinary social sciences. The book's companion website-doingethicsin.media, or www.doingmediaethics.com-provides continuously updated real-world media ethics examples and collections of essays from experts and students. The site also hosts ancillary materials for students and for instructors, including a test bank and instructor's manual. (shrink)