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)
Preparing the Next Generation of Oral Historians is an invaluable resource to educators seeking to bring history alive for students at all levels. Filled with insightful reflections on teaching oral history, it offers practical suggestions for educators seeking to create curricula, engage students, gather community support, and meet educational standards. By the close of the book, readers will be able to successfully incorporate oral history projects in their own classrooms.
The American Academy of Pediatrics Task Force on Circumcision published its policy statement and technical report on newborn circumcision in September 2012.1 ,2 Since that time, some individuals and groups have voiced objections to the work of the Task Force, while others have conveyed their support. The AAP task force is pleased that the policy statement and technical reports on circumcision have stimulated debate on this topic and welcomes respectful discussion and dialogue about the scientific and ethical issues that surround (...) neonatal circumcision. We believe this is a complex issue that does not lend itself to simplistic solutions. The Task Force encourages those of all viewpoints to contribute to a vibrant, thoughtful and respectful evidence-based dialogue. We appreciate that the free exchange of competing ideas is a necessary component of scientific discovery. We also recognise that all clinical decisions carry ethical dimensions and that a respectful and thoughtful dialogue about these issues is important. However, the Task Force also feels strongly that this debate and the academic literature are demeaned when those with an ideological agenda disseminate inaccurate information, misapply scientific principles, make accusations that are unsupported, communicate in a vitriolic tone, and attempt to discredit and mischaracterise alternative views and those who hold them. Healthy debate and …. (shrink)
Pickering & Garrod's (P&G's) call to study language processing in dialogue context is an appealing one. Their interactive alignment model is ambitious, aiming to explain the converging behavior of dialogue partners via both intra- and interpersonal priming. However, they ignore the flexible, partner-specific processing demonstrated by some recent dialogue studies. We discuss implications of these data.
The Physician Orders for Life-Sustaining Treatment Paradigm is designed to improve end-of-life care by converting patients’ treatment preferences into medical orders that are transferable throughout the health care system. It was initially developed in Oregon, but is now implemented in multiple states with many others considering its use. Accordingly, an observational study was conducted in order to identify potential legal barriers to the implementation of a POLST Paradigm. Information was obtained from experts at state emergency medical services and long-term care (...) organizations/agencies in combination with a review of relevant state law. Legal analysis of survey responses and existing laws identified several potential state legal barriers to a POLST Paradigm implementation. The most potentially problematic barriers are detailed statutory specifications for out-of-hospital DNR protocols. Other potential barriers include limitations on the authority to consent to forgo life-sustaining treatments, medical preconditions, and witnessing requirements for out-of-hospital DNR protocols. (shrink)
The Physician Orders for Life-Sustaining Treatment Paradigm is designed to improve end-of-life care by converting patients' treatment preferences into medical orders that are transferable throughout the health care system. It was initially developed in Oregon, but is now implemented in multiple states with many others considering its use. An observational study was conducted in order to identify potential legal barriers to the implementation of a POLST Paradigm. Information was obtained from experts at state emergency medical services and long-term care organizations/agencies (...) in combination with a review of relevant state law. (shrink)
The use of high hypothetical payoffs has been justified by the realism and relevance of large monetary consequences and by the impracticality of making high cash payments. We argue that subjects may not be able to imagine how they would behave in high payoff situations.
No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)
In this interview, which took place in July 2020, Muhammad Asghari, an associate professor in the Department of Philosophy at the University of Tabriz, asked eleven questions to Professor Susan Haack, a distinguished professor of philosophy at the University of Miami. This American philosopher eagerly and patiently emailed me the answers to the questions. The questions in this interview are mainly about analytic philosophy and pragmatist philosophy.This interview was conducted via personal email between me and Professor Susan Haack (...) in July 2020. This interview, which Professor Hawk eagerly accepted, includes eleven questions about her biography and roles of various philosophers in her thought and finally about the influence of the philosophy of pragmatism on her thought. Of course, it goes without saying that the Haack's book Philosophy of Logic in Iran has been translated into Persian and he has published two articles in the quarterly journal of Philosophical Investigations and I also have translated one of her articles into Persian. What was most interesting to me was the influence of pragmatism on Haack's thought that Charles Sanders Pierce, among classical American pragmatists, had as much influence on this philosopher's thought as John Dewey had in Rorty's thought. Here I thank Professor Susan Haack for answering my questions patiently and eagerly. (shrink)
A new edition of the highly acclaimed book Multiculturalism and "The Politics of Recognition," this paperback brings together an even wider range of leading philosophers and social scientists to probe the political controversy surrounding ...
The universe, in Chinese eyes, is a harmonious organism; its pattern of movement is inherent and not imposed from without; and the world of man, being a part of the universe, follows a similar pattern. (Derk Bodde, Harmony and Conflict in ...
Denton and Hockx present thirteen essays treating a variety of literary organizations from China's Republican era . Interdisciplinary in approach, the essays are primarily concerned with describing and analyzing the social and cultural complexity of literary groupings and the role of these social formations in literary production of the period.
Background Currently there is increasing recognition of the need for research in developing countries where disease burden is high. Understanding the role of local factors is important for undertaking ethical research in developing countries. We explored factors relating to information and communication during the process of informed consent, and the approach that should be followed for gaining consent. The study was conducted prior to a family-based genetic study among people with podoconiosis (non-filarial elephantiasis) in southern Ethiopia. Methodology/Principal Findings We adapted (...) a method of rapid assessment validated in The Gambia. The methodology was entirely qualitative, involving focus-group discussions and in-depth interviews. Discussions were conducted with podoconiosis patients and non-patients in the community, fieldworkers, researchers, staff of the local non-governmental organisation (NGO) working on prevention and treatment of podoconiosis, and community leaders. We found that the extent of use of everyday language, the degree to which expectations of potential participants were addressed, and the techniques of presentation of information had considerable impact on comprehension of information provided about research. Approaching podoconiosis patients via locally trusted individuals and preceding individual consent with community sensitization were considered the optimal means of communication. Prevailing poverty among podoconiosis patients, the absence of alternative treatment facilities, and participants' trust in the local NGO were identified as potential barriers for obtaining genuine informed consent. Conclusions Researchers should evaluate the effectiveness of consent processes in providing appropriate information in a comprehensible manner and in supporting voluntary decision-making on a study-by-study basis. (shrink)
Based on four years of participant-observation field research and focused interviews with men and women child care workers, the author analyzes how the marking of men workers and their experiences doing child care work show how deeply feminized the work of child care is. When men choose to do child care work, they become suspect. This suspicion manifests in restriction of men's access to children in child care centers. Restricted access of men workers to children implies men's desire for access (...) to children is pathological. In these and other ways, the organization of child care and the accountability of persons to sex category systematically push men away from nurturing responsibilities and bind these responsibilities to women workers. (shrink)
This volume is a Festschrift dedicated to Charles Kahn comprised of more than 20 papers presented at the conference "Presocratics and Plato: Festschrift Symposium in Honor of Charles Kahn", 3-7 June 2009. The conference was held at the European Cultural Center of Delphi, Greece, and was organized and sponsored by the HYELE Institute for Comparative Studies and Parmenides Publishing, with endorsement from the International Plato Society, and the Dean of the School of Arts and Sciences, University of Pennsylvania. (...) Contributors: Julia Annas - University of Arizona; Sarah Broadie - University of St. Andrews; Lesley Brown - University of Oxford; Tomás Calvo-Martínez - Universidad Complutense de Madrid; Diskin Clay - Duke University; John M. Dillon - Trinity College, Dublin; Dorothea Frede - Humbolt University, Berlin; Arnold Hermann - HYELE Institute for Comparative Studies; Carl A. Huffman - DePauw University; Enrique Hülsz Piccone - Universidad Nacional Autonoma de Mexico; D.M. Hutchinson - St. Olaf College; Paul Kalligas - National and Kapodistrian University, Athens; Vassilis Karasmanis - National Technical University, Athens; Aryeh Kosman - Haverford College; Anthony A. Long - University of California, Berkeley; Richard McKirahan - Pomona College; Susan Sauvé Meyer - University of Pennsylvania; Alexander P.D. Mourelatos - University of Texas at Austin; Satoshi Ogihara - Tohoku University, Japan; Richard Patterson - Emory University; Christopher J. Rowe - Durham University; David Sedley - University of Cambridge; Richard Sorabji - University of Oxford. (shrink)