The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...) are embracing this populist rhetoric to encourage wider public participation. We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance. (shrink)

Each decade since 1979, the Healthy People initiative establishes the national prevention agenda and provides the foundation for disease prevention and health promotion policies and programs. Law and policy have been included in Healthy People objectives from the start, but not integrated into the overall initiative as well as possible to potentially leverage change to meet Healthy People targets and goals. This article provides background on the Healthy People initiative and its use among various stakeholder groups, describes the work of (...) a project aiming to better integrate law and policy into this initiative, and discusses the development of Healthy People 2030 — the next iteration of health goals for the nation. Lessons from the preliminary stages of developing Healthy People by the HHS Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030 and a Federal Interagency Workgroup will be included. Efforts by the Committee focused on the role of law and policy as determinants of health and valuable resources around health equity are also shared. Finally, the article discusses ways that law and policy can potentially be tools to help meet Healthy People targets and to attain national health goals. (shrink)

Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...) research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance. (shrink)

First book to identify the political project inherent in the fundamental tenets of psychoanalysis.

Co-authored letter to the APA to take a lead role in the recognition of teaching in the classroom, based on the participation in an interdisciplinary Conference on the Role of Advocacy in the Classroom back in 1995. At the time of this writing, the late Myles Brand was the President of Indiana University and a member of the IU Department of Philosophy.

Environmental ethicists have frequently criticized ancient Greek philosophy as anti-environmental for a view of philosophy that is counterproductive to environmental ethics and a view of the world that puts nature at the disposal of people. This provocative collection of original essays reexamines the views of nature and ecology found in the thought of Plato, Aristotle, the Stoics, and Plotinus. Recognizing that these thinkers were not confronted with the environmental degradation that threatens contemporary philosophers, the contributors to this book find that (...) the Greeks nevertheless provide an excellent foundation for a sound theory of environmentalism. (shrink)

Since its inception in 2010, the Network for Public Health Law has aligned with federal, state, tribal, and local public health practitioners to assess how law can promote and protect the public’s health. In 2013, Network authors illustrated major trends in public health laws and policies emanating from an internal assessment of thousands of requests for technical assistance nationally. More recently, the Robert Wood Johnson Foundation has invited the Network and other partners to consider new ideas and strategies toward building (...) a “culture of health.” Per Figure 1, RWJF’s conception of a culture of health emphasizes key action areas essential to the promotion of health across all sectors and diverse populations. (shrink)

The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists....

Introduction: philosophy and democracy -- The philosophy of possibility -- Is progress possible? -- The democratic ethos -- Human rights -- Liberal democracy as secular comedy.

Catharine MacKinnon has pioneered a new brand of anti-pornography argument. In particular, MacKinnon claims that pornography silences women in a way that violates their right to free speech. In what follows, we focus on a certain account of silencing put forward by Jennifer Hornsby and Rae Langton, and we defend that account against two important objections. The first objection contends that this account makes a crucial but false assumption about the necessary role of hearer recognition in successful speech acts. In (...) response, we argue that, as silencing primarily concerns communication, Hornsby and Langton are perfectly correct to treat hearer recognition as they do. The second objection contends that their particular account of silencing has the unacceptable result of undermining the responsibility of rapists. We here argue that no such result follows from their account. (shrink)

This volume considers formalisations of love in the 21st century. Engaging with the Slovenian School of Philosophy, the book contends that psychoanalysis is the one line of thought that exposes the role that love plays in all knowledge, emphasising the importance of love in these unsettled times.

Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this (...) movement usually offer four ways in which their approach to medical diagnosis and health care improves upon current practices, arguing that it is more “personalized,” “predictive,” “preventive,” and “participatory” than the medical status quo. Initially, it was personalization that seemed to best sum up the movement's appeal. By 2012, however, powerful opinion leaders were abandoning “personalized medicine” in favor of a new label: “precision medicine.” The new label received a decisive seal of approval when, in January 2015, President Obama unveiled plans for a national “precision medicine initiative” to promote the development and use of genomic tools in health care. (shrink)

These essays use particular issues, thinkers and texts to engage the question of God in early Christianity.

While provisions of youth sports concussion laws are very similar, little is known as to how they are being implemented, factors that promote or impede implementation, or the level of compliance in each jurisdiction. We aimed to describe state experiences with implementation in order to inform ongoing efforts to reduce the harm of sports-related traumatic brain injury and to guide future evaluations of the laws’ impacts and the development of future public health laws. We conducted key-informant interviews in 35 states (...) with recently enacted concussion legislation. States varied considerably in their readiness and capacity for implementation. Factors facilitating implementation included existing partnerships, procedures, and resources; centralized implementation authority; prior related efforts; and involvement in the policymaking process by those now charged with implementation. Inhibitors included ambiguous statutory language, unclear delegation of authority, and compliance difficulties. Ongoing challenges persist, including primary prevention; determining which providers are qualified to make return-to-play assessments and contents of those assessments; compliance difficulties in rural and under-served areas; and unclear responsibility for enforcement. Despite the similarity of youth sports concussion laws, early evidence suggests there is considerable variation in their implementation. These findings are critical for ongoing empirical investigations to accurately evaluate the laws’ provisions and to identify successful legal approaches to protecting young athletes. (shrink)

Over the past decade, a flurry of media stories devoted to sports-related concussions have drawn attention to the previously “silent epidemic” of traumatic brain injury in athletes. From 2001 to 2009, the annual number of sports-related TBI emergency department visits in individuals age 19 and under climbed from 153,375 to 248,414, an increase of increase of 62 percent. Multiple head injuries place youth athletes at risk for serious health conditions, including cerebral swelling, brain herniation, and even death — postconcussive conditions (...) that have collectively been referred to as “second impact syndrome.” Studies have shown that children and teens — and girls, in particular — are more likely to sustain a concussion and have a longer recovery time than adults. Recent research also suggests that even subconcussive hits in children and adolescents may result in longer-term health effects such as decreased cognitive functioning, increased rates of depression, memory problems, and mild cognitive impairment. (shrink)

We all know that speech can be harmful. But how? Mary Kate McGowan argues that speech constitutes harm when it enacts a norm that prescribes that harm. She investigates such harms as oppression, subordination, and discrimination in such forms of speech as sexist remarks, racist hate speech, pornography, verbal triggers, and micro-aggressions.

Bioethics and feminist scholarship has explored various justice implications of nonmedical sex selection and family balancing. However, prospective users’ viewpoints have been absent from the debate over the socially acceptable bounds of nonmedical sex selection. This qualitative study provides a set of empirically grounded perspectives on the moral values that underpin prospective users’ conceptualizations of justice in the context of a family balancing program in the United States. The results indicate that couples pursuing family balancing understand justice primarily in individualist (...) and familial terms rather than in terms of social justice for women and girls or for children resulting from sex selection. Study participants indicated that an individual’s desire for gender balance in their family is ethically complex and may not be inherently sexist, immoral, or socially consequential, particularly given the social context in which they live. Our findings suggest that the social conditions that contribute to prospective users’ desires for gender balance in their families may direct them away from recognizing or engaging broader social justice concerns relating to sexism and stratified reproduction. (shrink)

Federal law often avoids setting minimum standards for women’s health and reproductive rights issues, leaving legislative and regulatory gaps for the states to fill as they see fit. This has mixed results. It can lead to state innovation that improves state-level health outcomes, informs federal health reform, and provides data on best practices for other states. On the other hand, some states may use the absence of a federal floor to impose draconian policies that pose risks to women’s and maternal (...) health. Health reforms at the federal level must trod carefully to enable state innovation, while imposing foundational safeguards for promoting women’s health nationwide. (shrink)

This volume brings leading figures in philosophy, political theory, intellectual history, and literary theory into a dialogue about Arendt's work and its significance for today's fractious identity politics, public ethics, and civic life.

This volume draws on a range of approaches in order to explore the problem and determine what ought to be done about allegedly harmful speech.Most liberal societies are deeply committed to a principle of free speech. At the same time, however, there is evidence that some kinds of speech are harmful in ways that are detrimental to important liberal values, such as social equality. Might a genuine commitment to free speech require that we legally permit speech even when it is (...) harmful, and even when doing so is in conflict with our commitment to values like equality? Even if such speech is to be legally permitted, does our commitment to free speech allow us to provide material and institutional support to those who would contest such harmful speech? And finally, and perhaps most importantly, which kinds of speech are harmful in ways that merit response, either in the form of legal regulation or in some other form? This collection explores these and related questions. Drawing on expertise in philosophy, sociology, political science, feminist theory, and legal theory, the contributors to this book investigate these themes and questions. By exploring various categories of speech (including pornography, hate speech, Holocaust denial literature, 'Whites Only' signs), and attending to the precise functioning of speech, the essays contained here shed light on these questions by clarifying the relationship between speech and harm. Understanding how speech functions can help us work out which kinds of speech are harmful, what those harms are, and how the speech in question brings them about. All of these issues are crucially important when it comes to deciding what ought to be done about allegedly harmful speech. (shrink)

I here present two different models of oppressive speech. My interest is not in how speech can cause oppression, but in how speech can actually be an act of oppression. As we shall see, a particular type of speech act, the exercitive, enacts permissibility facts. Since oppressive speech enacts permissibility facts that oppress, speech must be exercitive in order for it to be an act of oppression. In what follows, I distinguish between two sorts of exercitive speech acts (the standard (...) exercitive and the covert exercitive) and I argue that each such exercitive affords a distinct model of oppressive speech. (shrink)

Oocyte donation raises conflicts of interest and commitment for physicians but little attention has been paid to how to reduce these conflicts in practice. Yet the growing popularity of assisted reproduction has increased the stakes of maintaining an adequate oocyte supply and minimizing conflicts. A growing body of professional guidelines, legal challenges to professional self-regulation, and empirical research on the practice of oocyte donation all call for renewed attention to the issue. As empirical findings better inform existing conflicts and their (...) potential harms, we can better attempt to reduce these conflicts. To that end, the article first describes the nature of conflicts in oocyte donation and relevant regulations and professional guidelines. We then describe studies on conflicts at four phases of oocyte donation: recruitment, screening, stimulation, and post-stimulation monitoring. Next we consider three models for conflict reduction in medicine generally: improved professional self-regulation, outright restriction like Stark anti-referral laws, or the use of conflict mediators, like in living organ donation. We ultimately conclude that improved professional self-regulation is a reasonable starting place for oocyte donation. (shrink)

In a recent article in this journal, Nellie Wieland argues that silencing in the sense put forward by Rae Langton and Jennifer Hornsby has the unpalatable consequence of diminishing a rapist's responsibility for the rape. We argue both that Wieland misidentifies Langton and Hornsby's conception of silencing, and that neither Langton and Hornsby's actual conception, nor the one that Wieland attributes to them, in fact generates this consequence.

Many liberal societies are deeply committed to freedom of speech. This commitment is so entrenched that when it seems to come into conflict with other commitments (e.g., gender equality), it is often argued that the commitment to speech must trump the other commitments. In this paper, we argue that a proper understanding of our commitment to free speech requires being clear about what should count as speech for these purposes. On the approach we defend, should get a special, technical sense, (...) different from its ordinary sense. We offer a partial characterization of this technical sense. Finally, we argue that if certain theorists (e.g., MacKinnon) are right about what (some) pornography does, then it should fall outside the scope of the free-speech principle. If so, then contrary to first appearances, pornography may not be a case in which our commitments to freedom and gender equality come into conflict. (shrink)

ABSTRACT This paper argues for a hidden way in which speech constitutes harm by enacting harmful norms. The paper then explores the potential legal consequences of uncovering such instances of harm constitution. In particular, the paper argues that some public racist speech constitutes harm and is thus harmful enough to warrant legal remedy. Such utterances are actionable, it is contended, because they enact discriminatory norms in public spaces.

This paper criticizes Langton's speech act account of MacKinnon's claim about (the subordinating force of) pornography and offers a different account of how speech might enact harmful norms and thus constitute harm.

In this paper, I present a new (i.e., previously overlooked) breed of exercitive speech act (the conversational exercitive). I establish that any conversational contribution that invokes a rule of accommodation changes the bounds of conversational permissibility and is therefore an (indirect) exercitive speech act. Such utterances enact permissibility facts without expressing the content of such facts, without the speaker intending to be enacting such facts and without the hearer recognizing that it is so. Because of the peculiar nature ofthe rules (...) of accommodation that generate them, conversational exercitives have importantly different felicity conditions and therefore constitute a new breed ofexercitive speech act. (shrink)

Despite creating vast inequalities and propping up reactionary world regimes, capitalism has many passionate defenders—but not because of what it withholds from some and gives to others. Capitalism dominates, Todd McGowan argues, because it mimics the structure of our desire while hiding the trauma that the system inflicts upon it. People from all backgrounds enjoy what capitalism provides, but at the same time are told more and better is yet to come. Capitalism traps us through an incomplete satisfaction that (...) compels us after the new, the better, and the more. Capitalism's parasitic relationship to our desires gives it the illusion of corresponding to our natural impulses, which is how capitalism's defenders characterize it. By understanding this psychic strategy, McGowan hopes to divest us of our addiction to capitalist enrichment and help us rediscover enjoyment as we actually experienced it. By locating it in the present, McGowan frees us from our attachment to a better future and the belief that capitalism is an essential outgrowth of human nature. From this perspective, our economic, social, and political worlds open up to real political change. Eloquent and enlivened by examples from film, television, consumer culture, and everyday life, Capitalism and Desire brings a new, psychoanalytically grounded approach to political and social theory. (shrink)

This paper argues that racist speech in public places ought to be regulable even with teh strict free speech protections of the First Amendment. McGowan argues that the same justification for regulating the hanging of a 'Whites Only' sign applies to racist utterances in public spaces.

HOW DOES LIFE BEGIN? How is it and why is it that a child comes into being? To answer these questions about life and its origins requires a system of presuppositions about a great many metaphysical matters, such as causation and its modes of operation, relations of identity and difference, and, perhaps above all, the transition from not-being to actualized existence. In his treatise, Generation of Animals, Aristotle takes up the theme of the origins of animal and human life. His (...) treatment of the subject is both empirical, offering descriptions of how the process occurs in nature, and metaphysical, pursuing the deeper how and answering questions about why it is that offspring are generated and how this phenomenon is meaningfully connected to the cosmos as a whole. (shrink)

This paper argues that an addressee's failure to recognize a speaker's authority can constitutes another form of silencing.

Catharine MacKinnon claims that pornography silences women in a way that violates the right to free speech. This claim is, of course, controversial, but if it is correct, then the very free speech reasons for protecting pornography appear also to afford reason to restrict it. For this reason, it has gained considerable attention. The philosophical literature thus far focuses on a type of silencing identified and analyzed by Jennifer Hornsby and Rae Langton (H&L). This article identifies, analyzes, and argues for (...) the importance of a different type of silencing. As we shall see, there are compelling reasons in favor of regarding H&L silencing as a free speech violation and, as I argue here, the same can be said for sincerity silencing. Although additional work needs to be done to show that either one actually is a free speech violation, I demonstrate here that both types of silencing equally warrant this further attention. Moreover, I show that sincerity silencing is a fairly widespread phenomenon; so, therefore, is the harm it constitutes. As a result of these considerations, then, we can safely conclude that sincerity silencing also requires our attention. (shrink)

Divided he falls -- The path to contradiction: redefining emancipation -- Hegel after Freud -- What Hegel means when he says Vernunft -- The insubstantiality of substance: restoring Hegel's lost limbs -- Love and logic -- How to avoid experience -- Learning to love the end of history: freedom through logic -- Resisting resistance, or freedom is a positive thing -- Absolute or bust -- Emancipation without solutions -- Replanting Hegel's tree.

The great political ideas and movements of the modern world were founded on a promise of universal emancipation. But in recent decades, much of the Left has grown suspicious of such aspirations. Critics see the invocation of universality as a form of domination or a way of speaking for others, and have come to favor a politics of particularism—often derided as “identity politics.” Others, both centrists and conservatives, associate universalism with twentieth-century totalitarianism and hold that it is bound to lead (...) to catastrophe. This book develops a new conception of universality that helps us rethink political thought and action. Todd McGowan argues that universals such as equality and freedom are not imposed on us. They emerge from our shared experience of their absence and our struggle to attain them. McGowan reconsiders the history of Nazism and Stalinism and reclaims the universalism of movements fighting racism, sexism, and homophobia. He demonstrates that the divide between Right and Left comes down to particularity versus universality. Despite the accusation of identity politics directed against leftists, every emancipatory political project is fundamentally a universal one—and the real proponents of identity politics are the right wing. Through a wide range of examples in contemporary politics, film, and history, Universality and Identity Politics offers an antidote to the impasses of identity and an inspiring vision of twenty-first-century collective struggle. (shrink)

Lee emphasizes the need to better understand the moral relationship between researchers and participants connoted by precision medicine, with the framework of “the gift” offering bioethics a...

Environmentalists have levelled severe criticism against the history of Western philosophy for failing to protect the environment and for aiding in its destruction. The paper reviews that criticism and its shortcomings. It is proposed here, on the other hand, that environmentalism is deeply indebted to several key ideas in the West's intellectual tradition and that environmentalism is itself the product of these ideas. The paper examines these constituitive notions and considers reasons why the derivation of environmentalism from them has not (...) been more apparent. (shrink)