PURPOSE: There is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants. METHODS: A multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and against (...) providing results; and barriers to providing results. RESULTS: Four hundred nine parents (including 19 of deceased children) and 86 adolescents responded. Most parents (n = 385; 94.2%) felt that they had a strong right to research results. For positive results, most wanted a letter or e-mail summary (n = 238; 58.2%) or a phone call followed by a letter (n = 100; 24.4%). If the results were negative, phone call (n = 136; 33.3%) or personal visits (n = 150; 36.7%) were preferred. Parents wanted the summary to include long-term sequelae and suggestions for participants (n = 341; 83.4%), effect on future treatments (n = 341; 83.4%), and subsequent research steps (n = 284; 69.5%). Understanding the researcher was a main concern about receiving results (n = 145; 35.5%). Parents felt that results provide information to support quality of life (n = 315; 77%) and raise public awareness of research (n = 282; 68.9%). Adolescents identified similar preferences. CONCLUSION: Parents of children with cancer and adolescents with cancer feel strongly that they have a right to be offered research results and have specific preferences of how and what information should be communicated. (shrink)

Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (...) (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Results: Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). Conclusions: AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials. (shrink)

In the history of palliative care, all roads lead back to Dame Cicely Saunders, a remarkable social worker/nurse/physician who promoted the concept of total pain and founded the first modern hospic...

The world’s third largest producer of scientific research, Germany, is the origin of the research university and the independent, extra-university research institute. Its dual-pillar research policy differentiates these organizational forms functionally: universities specialize in advanced research-based teaching; institutes specialize intensely on research. Over the past decades this policy affected each sector differently: while universities suffered a lingering “legitimation crisis,” institutes enjoyed deepening “favored sponsorship”—financial and reputational advantages. Universities led the nation’s reestablishment of scientific prominence among the highly competitive European and (...) global science systems after WWII. But sectoral analysis of contributions to science, technology, engineering, mathematics, and medical and health journal publications finds that Germany’s small to medium-sized independent research institutes have made significant, growing contributions, particularly in publishing in higher impact journals proportionally more than their size. Simultaneously—despite dual-pillar policy implications—the university sector continues to be absolutely and relatively successful; not eclipsed by the institutes. Universities have consistently produced two-thirds of the nation’s publications in the highest quality journals since at least 1980 and have increased publications at a logarithmic rate; higher than the international mean. Indeed, they led Germany into the global mega-science style of production. Contrary to assumed benefits of functional differentiation, our results indicate that relative to their size, each sector has produced approximately similar publication records. While institutes have succeeded, the larger university sector, despite much less funding growth, has remained fundamental to German science production. Considering these findings, we discuss the future utility of the dual-pillar policy. (shrink)

Psychiatry is rapidly adopting digital phenotyping and artificial intelligence/machine learning tools to study mental illness based on tracking participants’ locations, online activity, phone and text message usage, heart rate, sleep, physical activity, and more. Existing ethical frameworks for return of individual research results (IRRs) are inadequate to guide researchers for when, if, and how to return this unprecedented number of potentially sensitive results about each participant’s real-world behavior. To address this gap, we convened an interdisciplinary expert working group, supported by (...) a National Institute of Mental Health grant. Building on established guidelines and the emerging norm of returning results in participant-centered research, we present a novel framework specific to the ethical, legal, and social implications of returning IRRs in digital phenotyping research. Our framework offers researchers, clinicians, and Institutional Review Boards (IRBs) urgently needed guidance, and the principles developed here in the context of psychiatry will be readily adaptable to other therapeutic areas. (shrink)

There is little information about the content of ethics consultations in pediatrics. We sought to describe the reasons for consultation and ethical principles addressed during EC in pediatrics through retrospective review and directed content analysis of EC records at St. Jude Children's Research Hospital. Patient-based EC were highly complex and often involved evaluation of parental decision making, particularly consideration of the risks and benefits of a proposed medical intervention, and the physician's fiduciary responsibility to the patient. Nonpatient consultations provided guidance (...) in the development of institutional policies that would broadly affect patients and families. This is one of the few existing reviews of the content of pediatric EC and indicates that the distribution of ethical issues and reasons for moral distress are different than with adults. Pediatric EC often facilitates complex decision making among multiple stakeholders, and further prospective research is need.. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 18-20, October 2012.

Humean promotionalists about reasons think that whether there is a reason for an agent to ϕ depends on whether her ϕ-ing promotes the satisfaction of at least one of her desires. Several authors have recently defended probabilistic accounts of promotion, according to which an agent’s ϕ-ing promotes the satisfaction of one of her desires just in case her ϕ-ing makes the satisfaction of that desire more probable relative to some baseline. In this paper I do three things. First, I formalize (...) an argument, due to Jeff Behrends and Joshua DiPaolo, to the effect that Mark Schroeder’s and Stephen Finlay’s probabilistic accounts of promotion cannot be correct. Next, I extend this argument to a recent alternative offered by D. Justin Coates and show how Coates’ attempt to avoid the argument by introducing a distinction between ‘intrinsic’ and ‘extrinsic’ probability doesn’t help. Finally, I suggest an alternative way of understanding promotion in terms of increase in degree of fit between the causal upshot of an action and the content of a desire. I show how this view, disjunctively paired with probabilism about promotion, solves the problems with previous accounts. (shrink)

The focus of this paper is a fascinating but hitherto unstudied 1742 manuscript treatise by Johannes Daniel Schlichting (1705–1765) titled “Sapientiæ Problema” that contains something extremely rare in the mid-eighteenth century: a full-blown speculative cosmogony. As this article reveals, Schlichting developed a distinctive vital liquid matter in an effort to account for the generation of all natural bodies and combat the stamina-based theories that were dominant in his day. He hoped that his treatise would be published in the Philosophical Transactions (...) of the Royal Society, but an accompanying abridgment by the FRS Henry Baker (1698–1774) strongly implies that Schlichting’s speculative bent and desire to divulge causal explanations were unacceptable to the Englishman and generally ill-suited to the intellectual climate of mid-century England. (shrink)

The antireductionist arguments of many philosophers (e.g., Baker, Fodor and Davidson) are motivated by a worry that successful reduction would eliminate rather than conserve the mental. This worry derives from a misunderstanding of the empiricist account of reduction, which, although it does not underwrite "cognitive suicide", should be rejected for its positivist baggage. Philosophy of psychology needs more detailed attention to issues in natural science which serve as analogies for reduction of the mental. I consider a range of central (...) cases, including water and H 2 O, genes and DNA, and common sense and scientific solidity. The last case is illuminated by Eddington's Two Tables paradox, a resolution which suggests the plasticity of the mental under reduction. If reduction of the mental is like any of these cases, it is neither empiricist nor eliminative. (shrink)

Rahel Jaeggi’s theory of alienation has received less attention than her work on forms of life and capitalism. This theory avoids the problems of traditional theories of alienation: objectivism, paternalism, and essentialism. It also sidesteps post-structuralist criticisms of the theory of alienation. However, Jaeggi’s theory is flawed in two ways: it is not historically specific, and so cannot explain why alienation is a problem for modernity rather than other historical periods, and it is difficult to connect to social critique. I (...) argue that Karl Marx’s later theory of alienation, as interpreted by Moishe Postone and others, is able to avoid the problems that Jaeggi’s theory avoids, and is also able to avoid the flaws in her theory. This suggests that critical theory should focus on a theory of capitalism rather than normative social theory. (shrink)

When studying historical thinkers, it helps enormously to know on which issues they had philosophically systematic views. For example, if attributing to Mencius the view that all existence is process-like rather than substance-like, it is very useful to know whether Mencius had philosophically systematic views about the (process-like or substance-like) nature of existence in the first place, or whether speculation about this particular issue is more constructive on the part of interpreters. In this paper, I offer a rough-and-ready account of (...) philosophical systematicity, talk about what would count as evidence of this sort of systematicity, and what implications it should have for one's interpretation if one can or cannot provide such evidence. The historical tradition that I am most concerned with is the pre-modern Chinese one, but my conclusions should hold for philosophical interpretations of thinkers of most times and traditions. (shrink)

I argue against pessimistic readings of the Buddhist tradition on which unawakened beings invariably have lives not worth living due to a preponderance of suffering (duḥkha) over well-being.

This paper attempts to bring the traditional theodicy on the question of evil and the Divine Providence, to its logical conclusion, in such a way that a believer is challenged to totally accept the implication of his or her faith in God. To have faith is to completely surrender to Divine Providence. It is to completely surrender ones free will to the rational conclusions or consequences of faith in the Divine Providence. Hence, this paper is for those who are perplexed (...) due to the Pandemic. Especially for Christians whose faith in God is perplexed because of their existential experience of the COVID 19 pandemic as evil. The existential reality of dread and misery caused by this pandemic is globally and more subjectively experienced due to the digitalization of this age. This shows how disastrously powerful the digitalization of our world can be in the proliferation of dread, misery and hopelessness. (shrink)

A transdisciplinary exploration of the work of Kenneth Burke and posthumanist rhetorics. In considering questions of power and persuasion as well as of ethics, responsibility, the contributors to this volume imagine the contradictions among Burke's writings and posthumanism as opportunities for knowledge making"--Provided by publisher.

Maximize Expected Choiceworthiness (MEC) is a theory of decision-making under moral uncertainty. It says that we ought to handle moral uncertainty in the way that Expected Value Theory (EVT) handles descriptive uncertainty. MEC inherits from EVT the problem of fanaticism. Roughly, a decision theory is fanatical when it requires our decision-making to be dominated by low-probability, high-payoff options. Proponents of MEC have offered two main lines of response. The first is that MEC should simply import whatever are the best solutions (...) to fanaticism on offer in decision theory. The second is to propose statistical normalization as a novel solution on behalf of MEC. This paper argues that the first response is open to serious doubt and that the second response fails. As a result, MEC appears significantly less plausible when compared to competing accounts of decision-making under moral uncertainty, which are not fanatical. (shrink)

v. 1. Wittgenstein, understanding and meaning -- v. 2. Wittgenstein, rules, grammar, and necessity -- v. 3. Wittgenstein, meaning and mind -- v. 4. Wittgenstein, mind and will.

The latest catchphrase to enter the English language as a result of military conflict is the term 'asymmetrical warfare'. At its broadest, asymmetrical warfare is simply any conflict in which there is a significant qualitative 1 mismatch between opponents in any or all of the following: manpower, firepower, technology and tactics. While the phrase is new, the concept is not. Asymmetrical warfare has been going on for about as long as humans have fought each other in organized ways. In the (...) South African context, for example, one need only think of the devastating attacks by King Shaka's highly-organized regiments (equipped as they were with revolutionary weaponry like the short stabbing spear or assegai), against the various tribes and groups that got in the way of Shaka's expansionist goals. Asymmetry was also an essential component in the successes of the rifle, canon and Gatling-gun equipped colonial armies who subdued the tribesmen of Africa and elsewhere. In the more recent past the ANC's low-tech guerrilla campaign against the conventional might of the apartheid regime is yet another example. There are, of course, complexities here, and asymmetries are not all of the same ilk, nor do they remain fixed, and certainly it is sometimes difficult to tell whether a conflict can properly be defined as asymmetrical. Nonetheless the general concept is easily recognizable. (shrink)

Jean Baudrillard has posited a theory of ‘the precession of simulacra’, arguing that it is no longer possible to tell the difference between an image and the meaning it purports to represent because technology allows the image to precede its meaning. Christa Wolf, while researching Cassandra: A Novel and Four Essays (1984), traveled to Greece and discovered the ways in which language in the rational, Western model of civilization has been distorted. Both Baudrillard and Wolf are disturbed by the ways (...) in which sign systems can be manipulated and generated, and both demonstrate the effect this has in the political and cultural arenas. This analysis intends to show how Baudrillard’s theories play out in Wolf’s narrative, and how Wolf resolves the problems thus posed through the shock of the aesthetic experience, which forces communication while it defies representation. (shrink)

This book presents, for the first time in English, two studies by Salvatore I. Camporeale on the fifteenth-century thinker Lorenzo Valla. Camporeale’s work offers new perspectives on Valla, in terms of both content and method.

“Languages are all the same, but not boringly so.” I think this is my own maxim, not one of the late great Kenneth Hale ’s. But it is nevertheless something that he taught me, by example, if not by explicit precept. Ken Hale believed passionately in a substantive notion of Universal Grammar that underlies all languages. But this did not blind him to the details—even the idiosyncrasies—of less-studied “local” languages. On the contrary, I believe it stimulated his famous zeal for (...) those details and idiosyncrasies. It is against the backdrop of what is universal that idiosyncrasies become interesting and meaningful. Conversely, it is often the fact that quite different, language particular constructions obey the same abstract constraints that provides the most striking evidence that those constraints are universal features of human language. (shrink)

This article discusses the relation between colonialism and the sovereignty of peoples through a dialogue between Hegel and the thought of the French Revolution. These two sides are relevant to each other not only because of their historical proximity, but also because of the connections that can be established when we approach the topic of colonialism through these two manifestations. Hegel is explicit that his philosophy of history and his philosophy of right are supposed to be philosophies of freedom. Yet (...) despite the importance that he lends to freedom, Hegel also explicitly defends, in the very same text, colonial domination when he deals with the relation between peoples. A similar problem had arisen in the course of the French Revolution. Following the declarations of war, France is confronted on various occasions with the question of how to deal with other peoples and countries. With the foundation of the Republic in 1792, the relation with other peoples becomes central in the revolutionary debates. The topic of colonialism is part of the constituting debates, and not only because of the uprisings in then Saint Domingue leading to the Haitian Revolution. This article is a part of a larger research project that attempts to reassess the relations between Hegel and the French Revolution, and deals with the question of how we can re-read Hegel's interpretation of the French Revolution based on the evolving historiography of the Revolution. After an introduction of both sides of this dialogue, the paper discusses how Hegel's political philosophy can be applied to understand the debates about the emancipation of colonies that take place during the French Revolution. The next part further analyses some issues, such as the notion of sovereignty and, in the concluding remarks, I summarize my discussion and point to some avenues for further research. (shrink)