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)

There is growing interest in the processes by which entrepreneurial opportunities are cocreated between entrepreneurs and their stakeholders. The longitudinal case study of de novo firm Wakefield Seafoods seeks to understand the underlying dynamics of phenomena that play out over time as stakeholders emerge and their contributions become essential to the opportunity formation process. The king crab data show that under conditions of uncertainty, characterized by incomplete or missing knowledge, entrepreneurial processes of experimentation, failure, and learning were effective in forming (...) and exploiting an opportunity. Moreover, contrary to existing literature that either emphasizes heroic entrepreneurs or downplays their value, this article shows that both the vision of the entrepreneur and the stakeholder contributions are critical. This detailed examination of process data shows that the cumulative actions made by entrepreneurs in concert with their stakeholders formed an opportunity that coalesced into a new market. (shrink)

As the recent inaugural Ethical, Legal, and Social Issues 2.0 conference made clear, the effects of information communication technology are pervasive in biomedical research. Data initiatives are arising in all corners of biomedicine. Data sharing efforts already promised to surpass even the ambitious goals of the National Human Genome Research Institute, only 5 years after publication of its 10-year vision. ELSI research was established, in part, to address challenges of open data access and data sharing. However, by and large, ELSI (...) research projects address particular concerns of a given population, jurisdiction, type of research practice or type of data. This does not necessarily facilitate coherent data policy for sustainable data stewardship. Forward-looking, data friendly strategies need to be considered. Orchestration strategies are needed which overcome barriers to collective action. Here we present challenges policymakers face, and suggest three basics steps towards meeting them. First, policymakers must recognise the systematic change that occurs when ICT enables dataflow itself to become an organising principle of biomedical research. Second, methods for identifying and gathering types of metadata suitable for ELSI research ought to be developed and regulated. Third, policymakers need to organise in ways that mirror the new vision for data-enabled research that data technologies are making possible, as ELSI 2.0 encourages researchers to do. Taking these steps will help ensure research evolves in ways that warrants trust of the public while still supporting widespread ethical access to necessary data, research subjects, samples and findings. (shrink)

Social acceptance is assumed to have widespread positive effects on the recipient; however, ethnic/racial minorities often react negatively to social acceptance by White individuals. One possibility for such reactions might be their lack of trust in the genuineness of White individuals’ positive evaluations. Here, we examined the role that oxytocin—a neuropeptide putatively linked to social processes—plays in modulating reactions to acceptance or rejection during interracial interactions. Black participants received intranasal oxytocin or placebo and interacted with a White, same-sex stranger who (...) provided positive or negative social feedback. After positive feedback, participants given oxytocin tended to display approach-oriented cardiovascular responses of challenge, exhibited more cooperative behavior, and perceived the partner to have more favorable attitudes toward them after the interaction. Following negative feedback, oxytocin reduced anger suppression. Oxytocin did not modulate testosterone reactivity directly, but our exploratory analysis showed that the less participants suppressed anger during the interaction with their partner, the greater testosterone reactivity they displayed after the interaction. These results survived the correction for multiple testing with a false discovery rate of 20%, but not with a rate of 10 or 5%. Discussion centers on the interplay between oxytocin and social context in shaping interracial interactions. (shrink)

Children's conceptions of dreams are an important component of their developing understanding of the mind. Although there is much that even adults do not understand about the nature of dreams, most adults in Western society believe that: Dream entities are not real in the sense that they are nonphysical; they are private in the sense that they are not available to public perception, and are not directly shared with other dreamers; and, dreams are typically fictional in content. Thus, children in (...) our society must confront several dualisms with respect to dreams, such as their physical versus nonphysical, perceptually-public versus perceptually-private, and shared versus individuated nature. Thirty-two children, aged 3- and 4-years-old, were told stories about children who were dreaming about an object, playing with an object, or looking at a photograph of an object, and then were asked questions about the status of these entities with regard to these three dualisms. All children judged dream entities, photographs, and physical objects to be appropriately different in terms of physical versus nonphysical properties and in terms of perceptually-public versus private status. They also understood the fictional nature of dreams. However, whereas most 4-year-olds understood that dreams are individuated, many 3-year-olds believed that dreams are directly shared by more than one person. These findings contrast with earlier research characterizing children's understanding of dreams as realistic. We reconcile these contrasting findings by discussing methodological differences, and we situate our findings regarding children's understanding of dreams within the context of contemporary research on children's theory of mind. (shrink)

In this study, we ask whether consensus testimony affects children’s judgments of the possibility of improbable and impossible events. Fifty-six U.S. and Chinese 8-year-olds made possibility judgments before and after hearing three speakers affirm or deny the possibility of improbable and impossible events. Results indicated that whereas both U.S. and Chinese children altered their judgments in the direction of the consensus testimony, this effect was stronger for Chinese children. U.S. children were particularly receptive to consensus for improbable events and when (...) the consensus provided correct information, whereas Chinese children were similarly willing to change their judgment regardless of event type and the validity of the testimony. We propose that the extent of the influence of testimony on possibility judgments varies based on cultural setting. Our findings have potential applications for domains that require evaluation of counterintuitive claims, like religious and scientific education. (shrink)

James Klagge aims to shed light on Wittgenstein’s philosophy by situating it in its biographical–cultural context. While Klagge is not alone in pursuing this aim, his claim to originality lies in his thematic focus on Wittgenstein’s relationship to his time and culture as one of “alienation” (3), expressed by the metaphor of being “in exile” (61). A central concern of Klagge’s is how we, as modern readers living in a “civilized” culture not dissimilar to the one from which Wittgenstein felt (...) himself estranged, can hope to understand the philosophical writings of such a radically distant “other.” Klagge’s suggestion is that through acknowledging and engaging with just how different Wittgenstein was, we can .. (shrink)

Human engagement with imaginary worlds pervades history (e.g., Paleolithic cave paintings) and development (e.g., 18-month-olds pretend). In providing a safe environment, separate from the real world, fiction offers the opportunity for simulated exploration regardless of external circumstances. Thus, engagement with imaginary worlds in fiction may afford individuals opportunities to reap benefits and transfer these benefits back to the real world.

Much bioethical literature and policy guidances for big data analytics in biomedical research emphasize the importance of trust. It is essential that potential participants trust so they will allow their data to be used to further research. However, comparatively, little guidance is offered as to what trustworthy oversight mechanisms are, or how policy should support them, as data are collected, shared, and used. Generally, “trust” is not characterized well enough, or meaningfully enough, for the term to be systematically applied in (...) policy development. Yet points made in the philosophical literature on trust can help. They allow us, not only to better distinguish the different ways the term “trust” may be interpreted, but also to better determine how different approaches to trust can align with policy and governance—in what ways they may relate to key bioethical concepts and related laws, and in what ways they can help to balance individual and group interests in data sharing. This article draws from the philosophical literature on trust to identify a relationship among consent, trust, and justice. Specifically, parallels are drawn between “character-trustworthiness” and “natural justice,” a set of widely held legal safeguards intended to ensure decision-makers follow a pattern of procedural fairness which protects the rights of the individual and thereby maintains public confidence in the decision-making process. Relevance to traditional bioethical principles, established laws, and consent procedures are addressed throughout. In conclusion, policy actions are suggested. (shrink)

The financial crisis of 2008 raised the politics of regulation to a new level of practical and scholarly attention. We find that recent reforms in U.S. financial markets hinge on intellectual resources and new organizational actors that are missing from existing concepts of regulatory capture or business power. In particular, small advocacy groups have proven significantly more successful in opposing the financial services industry than existing theories predict. By maintaining the salience of reform goals, elaborating new analytic frameworks, and deploying (...) specialized expertise in post-enactment debates, smaller organizations have contributed to a diffuse but often decisive network of pro-reform actors. Through the rule-writing process for macroprudential supervision and derivatives trading, these small organizations coalesced with other groups to form a new stability alliance that has so far prevented industry groups from dominating financial regulation to the degree that occurred in earlier cases of regulatory reform. (shrink)

Gordon Kaufman's “constructive theology” can easily be taken out of context and misunderstood or misrepresented as a denial of God. It is too easily overlooked that in his approach everything is an imaginary construct given no immediate ontological status—the self, the world, and God are “products of the imagination.” This reflects an influence, not only of theories on linguistic and cultural relativism, but also of Kant's “ideas of pure reason.” Kaufman is explicit about this debt to Kant. But I argue (...) there are other aspects of Kant's legacy implicit in his method. These center around Kaufman's engagement with “observed patterns” in nature. With Paul Tillich's aid, I bring this neglected issue to the fore and argue that addressing it allows one to more readily capitalize upon the Kantian influence in Kaufman's method. This, in turn, encourages one to tap more deeply into the epistemic underpinnings of Kaufman's approach to the science–religion dialogue. (shrink)