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)

PURPOSE: The offer to return research results to participants is increasingly recognized as an ethical obligation, although few researchers routinely return results. We examined the needs and attitudes of parents of children with cancer and of adolescents with cancer to the return of research results. METHODS: Seven experts in research ethics scored content validity on parent and adolescent questionnaires previously developed through focus group and phone interviews. The questionnaires were revised and provided to 30 parents and 10 adolescents in a (...) tertiary care oncology setting. RESULTS: The content validity index for individual questions and the overall questionnaires scored as 0.86 for both questionnaires. All 30 parents and 10 adolescents who agreed to participate returned questionnaires. The majority (>95%) indicated that they had a strong or very strong right to receive results. Letter or e-mail was a satisfactory means to return results described as good or neutral (66% parents, 100% adolescents) but more participants wished face-to-face disclosure of results with negative implications (50% parents, 60% adolescents). Very few wanted results disseminated through a Web site. The majority acknowledged the need for peer-review before disclosure (60% of adolescents and parents) but did not want "to be the last to know." CONCLUSIONS: Our data suggest that pediatric oncology patients and parents of children with cancer strongly feel that they have a right to research results, and that they wish to receive these in a timely manner. (shrink)

BACKGROUND: The offer of return of research results to study participants has many potential benefits. The current study examined the offer of return of research results by analyzing consent forms from 2 acute lymphoblastic leukemia studies of the 235 institutional members of the Children's Oncology Group. METHODS: Institutional review board (IRB)-approved consent forms from 2 standard-risk acute lymphoblastic leukemia studies (Children's Cancer Group [CCG] 1991 and Pediatric Oncology Group [POG] 9407) were analyzed independently by 2 reviewers. RESULTS: The authors received (...) replies from 202 of the 235 institutions that were contacted (85%). One hundred eighty-one institutions had CCG 1991 (n = 96) or POG 9905 (n = 85) protocols that were approved by an IRB. Most institutions provided contact information for the principal investigator (n = 175; 97%) and a member of the institution's research services office (n = 154; 85%). Only 5 (2.8%) institutions provided an indication of a participant's right to receive a summary of research results; most of these institutions provided details on how (n = 5) or when (n = 5) this was to occur. All of these institutions (n = 162; 89.5%) provided a specific statement offering new information that might affect a participant's decision to continue to participate in a study. Only 2 institutional consent forms offered participants the option to receive research results, and only 10 (5.5%) consent forms contained an unambiguous, specific statement offering to provide new information after the study was closed. CONCLUSIONS: Few institutional review board-approved consent forms explicitly indicate the right of research recipients to receive a summary of the results of the research in which they have participated. (shrink)

PURPOSE: The offer to return a summary of results to participants after the conclusion of clinical research has many potential benefits. The authors determined current practice and attitudes and needs of researchers in establishing programs to return results to research participants. METHODS: An Internet survey of all 236 principal investigators (PIs) of the Children's Oncology Group in May 2002 recorded PI and institutional demographics, current practice, and perceived barriers to and needs of PIs for the creation of research results programs. (...) RESULTS: One hundred fifty (63.8%) PIs responded. Few institutions (n = 5) had established, comprehensive programs to offer the return of results. PIs indicated that major impediments to the implementation of such programs are the preparation of lay summaries, time constraints, the task of contacting participants, and potential distress for the participants. PIs identified the following facilitators to the establishment of a program in their own institution: lay summaries, web site, preparation of an oncologist's summary, and financial credits. There was no clear consensus as to when the results should be shared: 30% indicated after the study was closed and 24% indicated at the time of publication of results. A substantial proportion of respondents opposed or strongly opposed the implementation of a universal offering of results to research participants. CONCLUSIONS: Few Children's Oncology Group institutions have programs that offer the return of results to research participants. Significant barriers and facilitators to this process have been identified. (shrink)

BACKGROUND: Researchers have a moral responsibility to offer to return research results to participants, but the needs and attitudes of parents and adolescents with cancer in paediatric oncology regarding the issue are relatively unknown.OBJECTIVES: To explore the needs of potential research participants or their guardians with respect to the offer of a return of research results. METHODS: A questionnaire was used in a focus group and in telephone interviews with eight adolescents and 12 parents of children with cancer. The participants (...) were asked to respond to the questions and to comment on the inclusiveness of the questionnaire.RESULTS: The majority of participants (18 of 20) wished to receive research results. Two somewhat unexpected findings are described. First, all participants in the present study felt that it was the primary responsibility of the participant to retain contact with the researchers for the purpose of obtaining research results. Second, few participants (n=2) indicated that the Internet would be a satisfactory way of transmitting these results. One-half of the participants wished to have face-to-face communication of results.CONCLUSIONS: These results provide preliminary guidance for the return of research results to participants and validate the use of the questionnaire in a larger study of this issue. (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)

Background: Publication of ethically uncertain research occurs despite well-published guidelines set forth in documents such as the Declaration of Helsinki. Such guidelines exist to aide editorial staff in making decisions regarding ethical acceptability of manuscripts submitted for publication, yet examples of ethically suspect and uncertain publication exist. Our objective was to survey journal editors regarding practices and attitudes surrounding such dilemmas. Methods: The Editor-in-chief of each of the 103 English-language journals from the 2005 Abridged Index Medicus list publishing original research (...) were asked to complete a survey sent to them by email between September-December 2007. Results: A response rate of 33% (n = 34) was obtained from the survey. 18% (n = 6) of respondents had published ethically uncertain or suspect research within the last 10 years. 85% (n = 29) of respondents stated they would always reject ethically uncertain articles submitted for publication on ethical grounds alone. 12% (n = 4) of respondents stated they would approach each submission on a case-by-case basis. 3% (n = 1) stated they would be likely to publish such research, but only with accompanying editorial. Only 38% (n = 13) give reviewers explicit instruction to reject submissions on ethical grounds if found wanting. Conclusions: Editorial compliance with the Declaration of Helsinki in rejecting research that is conducted unethically was difficult to ascertain because of a poor response rate despite multiple attempts using different modalities. Of those who did respond, the majority do reject ethically suspect research but few explicitly advise reviewers to do so. In this study editors did not take advantage of the opportunity to describe their support for the rejection of the publication of unethical research. (shrink)

This study identifies and explores evolving concepts of trust and privacy in the context of user-generated health data. We define “user-generated health data” as data captured through devices or software and used outside of traditional clinical settings for tracking personal health data. The investigators conducted qualitative research through semistructured interviews with researchers, health technology start-up companies, and members of the general public to inquire why and how they interact with and understand the value of user-generated health data. We found significant (...) results concerning new attitudes toward trust, privacy, and sharing of health data outside of clinical settings that conflict with regulations governing health data within clinical settings. Members of the general public expressed little concern about sharing health data with the companies that sold the devices or apps they used, and indicated that they rarely read the “terms and conditions” detailing how their data may be exploited by the company or third-party affiliates before consenting to them. In contrast, interviews with researchers revealed significant resistance among potential research participants to sharing their user-generated health data for purposes of scientific study. The widespread rhetoric of personalization and social sharing in “user-generated culture” appears to facilitate an understanding of user-generated health data that deemphasizes the risk of exploitation in favor of loosely defined benefits to individual and social well-being. We recommend clarification and greater transparency of regulations governing data sharing related to health. (shrink)

This paper suggests that research and theory regarding the development of global codes of conduct would be informed by political theory. Charles Taylor’s (1992) essay Politics of Recognition acknowledges that successful relationships among nations results from mutual respect and esteem among different cultures for each other. The same may be the case for the successful development of universal code of ethics for Multinational Enterprises.

Book reviewed in this article: All God's Mistakes: Genetic Counseling in a Pediatric Hospital. By Charles L. Bosk.

At the very beginning of L’Homme-Machine, La Mettrie claims that Leibnizians with their monads have “rather spiritualized matter than materialized the soul”; a few years later Pierre-Louis Moreau de Maupertuis, President of the Berlin Academy of Sciences and natural philosopher with a strong interest in the modes of transmission of ‘genetic’ information, conceived of living minima which he termed molecules, “endowed with desire, memory and intelligence,” in his Système de la nature ou Essai sur les corps organisés. This text first (...) appeared in Latin in 1751 under the title Dissertatio inauguralis metaphysica de universali naturae systemate, with the pseudonym Dr Baumann; it was translated by Maupertuis in 1754 as Essai sur la formation des corps organisés and was later included in his 1756 Œuvres under the title Système de la nature. Now, it is clear that Maupertuis was a kind of Leibnizian; and that his molecule possessed higher-level, ‘mental’ properties. In that sense he falls under the first category described by La Mettrie. But he was also involved in a debate on this issue with Diderot, who put forth a sustained critique of Maupertuis’ theory of the molecule in the additions to his 1753 Pensées sur l’interprétation de la nature. Where Maupertuis attributes higher-level properties to his living minima, Diderot argues that these properties are ‘organizational’, i.e., they can only be properties of the whole. At issue here is the degree of commitment to a form of materialism. (shrink)

In his Philosophical Inquiry concerning Human Liberty (1717), the English deist Anthony Collins proposed a complete determinist account of the human mind and action, partly inspired by his mentor Locke, but also by elements from Bayle, Leibniz and other Continental sources. It is a determinism which does not neglect the question of the specific status of the mind but rather seeks to provide a causal account of mental activity and volition in particular; it is a ‘volitional determinism’. Some decades later, (...) Diderot articulates a very similar determinism, which seeks to recognize the existence of “causes proper to man” (as he says in the Réfutation d’Helvétius). The difference with Collins is that now biological factors are being taken into account. Obviously both the ‘volitional’ and the ‘biological’ forms of determinism are noteworthy inasmuch as they change our picture of the nature of determinism itself, but my interest here is to compare these two determinist arguments, both of which are broadly Spinozist in nature – and as such belong to what Jonathan Israel called in his recent book “the radical Enlightenment,” i.e. a kind of underground Enlightenment constituted by Spinozism – and to see how Collins’ specifically psychological vision and Diderot’s specifically biological vision correspond to their two separate national contexts: determinism in France in the mid-1750s was a much more medico-biological affair than English determinism, which appears to be on a ‘path’ leading to Mill and associationist psychology. (shrink)

Este artigo tem como objetivo resgatar o Brasil de Darwin por meio das obras dos pintores viajantes Augustus Earle (1793-1838) e Conrad Martens (1801-1878). Os locais por onde passou, a beleza da floresta tropical, os horrores do sistema escravista narrados por Darwin em seu diário, estão presentes nas aquarelas desses dois artistas, cujo papel a bordo do Beagle foi o de relatar, através da arte visual, as experiências vividas durante o levantamento geográfico da Terra do fogo e da costa (...) sul da América do Sul, sob o comando do capitão Robert FitzRoy (1805-1865). (shrink)

The present edition provides a detailed and accessible discussion ofhis theories and adds an account of the immediate responses to the book on publication.

This book is an examination of the inattention of business schools to moral education, addressing lessons learned from the most recent business corruption scandals and financial crises, and also questioning what we're teaching now and what should be considering in educating future business leaders to cope with the challenges of leading with integrity in the global environment"--Provided by publisher.

Charles Darwin's On the Origin of Species is unquestionably one of the chief landmarks in biology. The Origin (as it is widely known) was literally only an abstract of the manuscript Darwin had originally intended to complete and publish as the formal presentation of his views on evolution. Compared with the Origin, his original long manuscript work on Natural Selection, which is presented here and made available for the first time in printed form, has more abundant examples and illustrations (...) of Darwin's argument, plus an extensive citation of sources. (shrink)

Ce livre étudie, à travers une série d'épisodes allant de la philosophie des Lumières à notre époque, le problème du matérialisme dans l'histoire de la philosophie et l’histoire des sciences. Comment comprendre les spécificités de l’histoire du matérialisme, des Lumières à nos jours, au sein de la grande histoire de la philosophie et de l’histoire des sciences ? Quelle est l’actualité de l’opposition classique entre le corps et l’esprit ? Qu’est-ce que le rire ou le rêve peuvent nous apprendre du (...) matérialisme ? En traversant l’histoire de ce concept jusqu’à l’émergence d’un « nouveau matérialisme » contemporain, l’ouvrage vise à revitaliser le matérialisme et sa lecture. -/- . (shrink)

This is a major and comprehensive study of the philosophy of Hegel, his place in the history of ideas, and his continuing relevance and importance. Professor Taylor relates Hegel to the earlier history of philosophy and, more particularly, to the central intellectual and spiritual issues of his own time. He engages with Hegel sympathetically, on Hegel's own terms and, as the subject demands, in detail. This important book is now reissued with a fresh new cover.

Discusses heaven, the Creation, forgiveness, vanity, the theology of romantic love, responsibility, and the life of Jesus.

Wakefield’s harmful dysfunction analysis asserts that the concept of medical disorder includes a naturalistic component of dysfunction and a value component, both of which are required for disorder attributions. Muckler and Taylor, defending a purely naturalist, value-free understanding of disorder, argue that harm is not necessary for disorder. They provide three examples of dysfunctions that, they claim, are considered disorders but are entirely harmless: mild mononucleosis, cowpox that prevents smallpox, and minor perceptual deficits. They also reject the proposal that dysfunctions (...) need only be typically harmful to qualify as disorders. We argue that the proposed counterexamples are, in fact, considered harmful; thus, they fail to disconfirm the harm requirement: incapacity for exertion is inherently harmful, whether or not exertion occurs, cowpox is directly harmful irrespective of indirect benefits, and colorblindness and anosmia are considered harmful by those who consider them disorders. We also defend the typicality qualifier as viably addressing some apparently harmless disorders and argue that a dysfunction’s harmfulness is best understood in dispositional terms. (shrink)

First published in 2002. Routledge is an imprint of Taylor & Francis, an informa company.

On the received view, the Representational Theory of Measurement reduces measurement to the numerical representation of empirical relations. This account of measurement has been widely criticized. In this article, I provide a new interpretation of the Representational Theory of Measurement that sidesteps these debates. I propose to view the Representational Theory of Measurement as a library of theorems that investigate the numerical representability of qualitative relations. Such theorems are useful tools for concept formation that, in turn, is one crucial aspect (...) of measurement for a broad range of cases in linguistics, rational choice, metaphysics, and the social sciences. (shrink)

This paper provides a methodological analysis of Libertarian Paternalism, as put forward in the book Nudge by Richard Thaler and Cass Sunstein (Yale University Press, 2008). Libertarian Paternalism aims to use the accumulated findings of behavioural economics in order to assist decision-makers to make better choices. The philosophical debate about this proposal has focused on normative issues with regards to this proposal. This paper analyses Libertarian Paternalism descriptively and points out four methodological conditions for successful Nudges. On that basis, a (...) methodological critique of Libertarian Paternalism is mounted: the success conditions suggest that Nudges might be even harder to implement and to justify than commonly assumed in the philosophical debate. (shrink)

In ‘Rethinking Disease’, Powell and Scarffe1 propose what in effect is a modification of Jerome Wakefield’s2 3 harmful dysfunction analysis of medical disorder. The HDA maintains that ‘disorder’ is a hybrid factual and value concept requiring that a biological dysfunction, understood as a failure of some feature to perform a naturally selected function, causes harm to the individual as evaluated by social values. Powell and Scarffe accept both the HDA’s evolutionary biological function component and its incorporation of a value component. (...) Their proposed ‘new twist’ is to revise the value component: ‘Our proposed definition of disease is as follows: a biomedical state is a disease only if it implicates a biological dysfunction that is, or would be, properly disvalued’. So, they propose that a disorder is a ‘properly disvalued dysfunction’ rather than a ‘harmful dysfunction’, an approach they term ‘thickly normative’ in contrast to the thin normative approach of the HDA. There has been a surge of interest recently in better understanding the ‘harm’ component of the HDA. Powell and Scarffe’s analysis is a helpful contribution to this discussion. We focus here exclusively on their proposal regarding the analysis of the concept of disorder and ignore many important related issues that the authors address, ranging from prioritising resource allocation between disorders and non-disorders to whether the concept of disorder should be replaced by a generic welfarist concept. The resolution of these additional issues depends on first understanding ‘disorder’. The authors’ proposed changes to the HDA also deserve evaluation because the HDA, which has been endorsed by leading nosologists,4 plays an influential role in nosological debate across categories of disorder ranging, for example, from sexual paraphilias5 to psychopathy.6 A basic problem is that Powell and Scarffe misinterpret …. (shrink)

"A beautiful piece of work on the theory of altered states of consciousness ." "Stanislav Grof, M.D. author of Realms of the Human Unconsciousness".

We confront the philosophical literature on fair division problems with axiomatic and game-theoretic work in economics. Firstly, we show that the proportionality method advocated in Curtis is not implied by a general principle of fairness, and that the proportional rule cannot be explicated axiomatically from that very principle. Secondly, we suggest that Broome’s notion of claims is too restrictive and that game-theoretic approaches can rectify this shortcoming. More generally, we argue that axiomatic and game-theoretic work in economics is an indispensable (...) ingredient of any theorizing about fair division problems and allocative justice. (shrink)

I examine Kant’s claim in part one of Religion within the Boundaries of Mere Reason that moral reform requires both a ‘change of heart’ and gradual reformation of one’s sense (R, 6: 47). I argue that Kant’s conception of moral reform is neither fundamentally obscure nor is it as vulnerable to serious objections as several commentators have suggested. I defend Kant by explaining how he can maintain both that we can choose our moral disposition via an intelligible choice and that (...) we become good through a continuous struggle. I then provide an interpretation of how moral reform occurs in the phenomenal realm. (shrink)

First published in 2002. Routledge is an imprint of Taylor & Francis, an informa company.

The important ‘no-envy’ fairness criterion has typically been attributed to Foley and sometimes to Tinbergen. We reveal that Jan Tinbergen introduced ‘no-envy’ as a fairness criterion in his article “Mathematiese Psychologie” published in 1930 in the Dutch journal Mens en Maatschappij and translated as “Mathematical Psychology” in 2021 in the Erasmus Journal for Philosophy and Economics. Our article accompanies the translation: we introduce Tinbergen’s 1930 formulation of the ‘no-envy’ criterion, compare it to other formulations, and comment on its significance for (...) the fairness literature in philosophy and economics. (shrink)

Controversies about time discounting loom large in decisions about climate change. Prominently, a particularly controversial debate about time discounting in climate change decision-making has been conducted within climate economics, between the authors of Stern et al. and their critics :977–981, 2006; Weitzman in J Econ Lit XLV:703–724, 2007; Nordhaus in J Econ Lit XLV:686–702, 2007). The article examines the role of values in this debate. Firstly, it is shown that time discounting is a case in which values are key because (...) it is at heart an ethical problem. Secondly, it is argued that time discounting in climate economics is a case of economists making frequent and routine references to ethical values and indeed conduct ethical debates with each other. Thirdly, it is argued that there is evidence for deep and pervasive entanglement between facts and values in the prevalent methodologies for time discounting. Finally, it is argued that this means that economists have given up the ‘value-free ideal’ concerning time discounting, and discussed how the current methodology of time discounting in economics can be improved. (shrink)

This is a book about moral reasoning: how we actually reason and how we ought to reason. It defends a form of 'rule' utilitarianism whereby we must sometimes judge and act in moral questions in accordance with generally accepted rules, so long as the existence of those rules is justified by the good they bring about. The author opposes the currently more fashionable view that it is always right for the individual to do that which produces the most good. Among (...) the salient topics covered are: an account of the utilitarian function in society of generally accepted moral rules; a discussion of how we interpret existing moral rules and create new ones; and a defence of 'rule' utilitarianism against the charge that it either commits one to irrational rule worship, or collapses into a form of 'act' utilitarianism. This is a book about moral reasoning: how we actually reason and how we ought to reason. It defends a form of 'rule' utilitarianism whereby we must sometimes judge and act in moral questions in accordance with generally accepted rules, so long as the existence of those rules is justified by the good they bring about. (shrink)

Philosophical theories of fairness propose to divide a good that several individuals have a claim to in proportion to the strength of their respective claims. We suggest that currently, these theories face a dilemma when dealing with a good that is indivisible. On the one hand, theories of fairness that use weighted lotteries are either of limited applicability or fall prey to an objection by Brad Hooker. On the other hand, accounts that do without weighted lotteries fall prey to three (...) fairness paradoxes. We demonstrate that division methods from apportionment theory, which has hitherto been ignored by philosophical theories of fairness, can be used to provide fair division for indivisible goods without weighted lotteries and without fairness paradoxes. (shrink)

Instead he argues that there is an essence of comedy in the area of spirit rather than form, perspective rather than pattern. He draws upon the rich historical ensemble of types of comic figures, with a chapter devoted to each: the humorist, comedian, comic hero, rogue, trickster, clown, fool, underdog, and simpleton. He shows how each type incarnates a comic heroism in its own unique manner, offering a profound wisdom and philosophy of life.

(No abstract is available for this citation).