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)
ABSTRACT Objective: To identify perceived barriers to capacity building for local research ethics oversight in El Salvador, and to set an agenda for international collaborative capacity building. Methods: Focus groups were formed in El Salvador which included 17 local clinical investigators and members of newly formed research ethics committees. Information about the proposed research was presented to participants during an international bioethics colloquium sponsored and organized by the St. Jude Children's Research Hospital in collaboration with the National Ethics Committee of (...) El Salvador and the University of El Salvador. Interviews with the focus group participants were qualitatively analyzed. Results: Participants expressed the need to tailor the informed consent process and documentation to the local culture; for example, allowing family members to participate in decision‐making, and employing shorter consent forms. Participants indicated that economic barriers often impede efforts in local capacity building. Participants valued international collaboration for mutual capacity building in research ethics oversight. Conclusions: Research ethics committees in El Salvador possess a basic knowledge of locally relevant ethical principles, though they need more training to optimize the application of bioethical principles and models to their particular contexts. Challenges increase the value of collaborative exchanges with ethics committee members in the United States. Further research on facilitating communication between host country and sponsor country ethics committees can maximize local research ethics expertise, and thus raise the standard of protecting human participants involved in international research. (shrink)
The Raymond Tallis Reader provides a comprehensive survey of the work of this passionate, perceptive, and often controversial thinker. Key selections from Tallis's major works are supplemented by Michael Grant's detailed introduction and linking commentary. From nihilism to Theorrhoea, from literary theory to the role of the unconscious, The Raymond Tallis Reader guides us through the panoptic sweep of Tallis's critical insights and reveals a way of thinking for the 21st century.
Former colleagues of distinguished philosopher Raymond Klibansky examine tolerance from a number of perspectives, including historical roots in Bayle and Locke, the plea for tolerance in literature and poetry, as well as judicial, cultural and societal aspects.
Does anyone ever survive his or her bodily death ? Could anyone? No speculative questions are older than these, or have been answered more frequently or more variously. None have been laid to rest more often, or — in our times — with more claimed decisiveness. Jay Rosenberg, for instance, no doubt speaks for many contemporary philosophers when he claims, in his recent book, to have ‘ demonstrated ’ that ‘ we cannot [even] make coherent sense of the supposed possibility (...) that a person's history might continue beyond that person's [bodily] death’. (shrink)
In the Bayesian approach to quantum mechanics, probabilities—and thus quantum states—represent an agent’s degrees of belief, rather than corresponding to objective properties of physical systems. In this paper we investigate the concept of certainty in quantum mechanics. Particularly, we show how the probability-1 predictions derived from pure quantum states highlight a fundamental difference between our Bayesian approach, on the one hand, and Copenhagen and similar interpretations on the other. We first review the main arguments for the general claim that probabilities (...) always represent degrees of belief. We then argue that a quantum state prepared by some physical device always depends on an agent’s prior beliefs, implying that the probability-1 predictions derived from that state also depend on the agent’s prior beliefs. Quantum certainty is therefore always some agent’s certainty. Conversely, if facts about an experimental setup could imply agent-independent certainty for a measurement outcome, as in many Copenhagen-like interpretations, that outcome would effectively correspond to a preexisting system property. The idea that measurement outcomes occurring with certainty correspond to preexisting system properties is, however, in conflict with locality. We emphasize this by giving a version of an argument of Stairs [(1983). Quantum logic, realism, and value-definiteness. Philosophy of Science, 50, 578], which applies the Kochen–Specker theorem to an entangled bipartite system. (shrink)
Raymond Martin and John Barresi trace the development of Western ideas about personal identity and reveal the larger intellectual trends, controversies, and ideas that have revolutionized the way we think about ourselves.
This article argues that Dr. Kornu has failed to demonstrate how Jonathan Edward’s theology of beauty can substantively contribute to a contemporary Christian theology of medicine. Edward’s appropriation of Neo-Platonic language is contrasted with the use of the same language by the Orthodox Church Fathers. It is argued that the absence of a mystical understanding of theology, sacramental church structure, and ascetical discipline within the Reformed Tradition renders any attempt to appropriate a Neo-Platonic understanding of beauty ineffectual.
This essay offers an introduction to Owen Barfield’s long romance poem, Riders on Pegasus. It argues that the poem is a complex example of “romantic modernism,” self-consciously following in the tradition of Blake and Shelley while responding in an equally self-aware way to the anti-romantic modernism of early Eliot and Auden. It argues for the formal and aesthetic accomplishment and interest of the poem, and suggests that it is an as yet overlooked masterpiece of mid-century English poetry.
(2013). Disrespectful Care in the Treatment of Sickle Cell Disease Requires More Than Ethics Consultation. The American Journal of Bioethics: Vol. 13, No. 4, pp. 12-14. doi: 10.1080/15265161.2013.768857.