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)

Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a “Medical Information Commons”. We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.

Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.

Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a “layered” approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in advancing translation.

Obtaining informed consent, an ethical obligation of nurses and other health care providers, occurs routinely when patients make health care decisions. The values underlying informed consent (promotion of patients’ well-being and respect for their self-determination) are embedded in the dominant American culture. Nurses who apply the USA’s cultural values of informed consent when caring for patients who come from other cultures encounter some ethical dilemmas. This descriptive study, conducted with Latino, Chinese and Anglo-American cancer patients in a large, public, west-coast (...) clinic, describes constraints on the informed consent process in a multicultural setting, including language barriers, the clinical environment, control in decision making, and conflicting desired health outcomes for health care providers and patients, and suggests some implications for nursing practice. (shrink)

Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors then (...) negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. (shrink)

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Background: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands’ biological relatives. Researchers question their obligations to return findings not only to participants but also to family members. Given the social value of privacy protection, should researchers offer a proband’s results to family members, including after the proband’s death? Methods: Preferences were elicited using interviews and a survey. Respondents included probands from two pancreatic cancer research resources, plus biological and nonbiological family members. (...) Hypothetical scenarios based on actual research findings from the two cancer research resources were presented; participants were asked return of results preferences and justifications. Interview transcripts were coded and analyzed; survey data were analyzed descriptively. Results: Fifty-one individuals (17 probands, 21 biological relatives, 13 spouses/partners) were interviewed. Subsequently, a mailed survey was returned by 464 probands, 1,040 biological family members, and 399 spouses/partners. This analysis highlights the interviews, augmented by survey findings. Probands and family members attribute great predictive power and lifesaving potential to genomic information. A majority hold that a proband’s genomic results relevant to family members’ health ought to be offered. While informants endorse each individual’s choice whether to learn results, most express a strong moral responsibility to know and to share, particularly with the younger generation. Most have few concerns about sharing genetic information within the family; rather, their concerns focus on the health consequences of not sharing. Conclusions: Although additional studies in diverse populations are needed, policies governing return of genomic results should consider how families understand genomic data, how they value confidentiality within the family, and whether they endorse an ethics of sharing. A focus on respect for individual privacy—without attention to how the broad social and cultural context shapes preferences within families—cannot be the sole foundation of policy. (shrink)

Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.

Psychopathy is a disorder characterized by severe and frequent moral violations in multiple domains of life. Numerous studies have shown psychopathy-related limbic brain abnormalities during moral processing; however, these studies only examined negatively valenced moral stimuli. Here, we aimed to replicate prior psychopathy research on negative moral judgments and to extend this work by examining psychopathy-related abnormalities in the processing of controversial moral stimuli and positive moral processing. Incarcerated adult males (N = 245) completed a functional magnetic resonance imaging protocol (...) on a mobile imaging system stationed at the prison. Psychopathy was assessed using the Hare Psychopathy Checklist–Revised (PCL-R). Participants were then shown words describing three types of moral stimuli: wrong (e.g., stealing), not wrong (e.g., charity), and controversial (e.g., euthanasia). Participants rated each stimulus as either wrong or not wrong. PCL-R total scores were correlated with not wrong behavioral responses to wrong moral stimuli, and were inversely related to hemodynamic activity in the anterior cingulate cortex in the contrast of wrong > not wrong. In the controversial > noncontroversial comparison, psychopathy was inversely associated with activity in the temporal parietal junction and dorsolateral prefrontal cortex. These results indicate that psychopathy-related abnormalities are observed during the processing of complex, negative, and positive moral stimuli. (shrink)

Incidental fndings of potential medical signifcance are seen in approximately 5-8 percent of asymptomatic subjects and 16 percent of symptomatic subjects participating in large computed tomography colonography studies, with the incidence varying further by CT acquisition technique. While most CTC research programs have a well-defned plan to detect and disclose IFs, such plans are largely communicated only verbally. Written consent documents should also inform subjects of how IFs of potential medical signifcance will be detected and reported in CTC research studies.

In lieu of an abstract, here is a brief excerpt of the content:The Joy and Aggravation of Being a Career Nursing AssistantDonald KoenigI am a male career nursing assistant with 10 years experience. I also happen to be the Ohio Chair Person for the Male Nursing Assistants Task Force. This task force is designed to help recruit, offer continuing education, increase public awareness, and help maintain the good quality men that work as career nursing assistants.Today I want to talk to (...) you about what it is like to be a nursing assistant. Let me walk you through a day of a nursing assistant. I work the day shift. My day starts at 6:45 am. The first thing I do when I arrive at work is to check the schedule for three things: first, to see what my assignment is; second, to note how many nursing assistants are scheduled for the whole nursing home for that shift; and finally, I check to see if there are any shower aides scheduled and, if so, what sections they are assigned to that day.Once I arrive at my assignment area I check to see how many of my residents are showers and how many assistants from the night shift have already done the morning care of getting residents dressed and up for the day. Federal Regulations are one nursing assistant for every fifteen residents. There are some days that there are more staff scheduled and I will have fewer residents; unfortunately those days do not occur often enough. If I am lucky I end up only having six to eight residents to do morning care with.Now it is time for the breakfast trays to arrive on the floor. Even though I am only assigned to take care of my residents, I have to help pass trays to all residents on my side of the building (61 in my case). First I pass the trays to all residents that require help eating or are total feeds. It is now about 8:30 a.m. and all the residents have been fed and it is time to pick up all the trays and record their intake.Now I am ready to get my report from the nurse and start doing my morning get-ups. Like I said earlier, I have anywhere from six to eight residents to do morning care with. This will include washing, [End Page 141] dressing, mouth and hair care and finally getting them up into their chair. I usually have about two or two and a half hours to accomplish this before it is time for me to go to lunch. During the time I am doing morning care, I am also responsible for answering call lights in my section for all fifteen residents under my care. Most sections will have residents who require two or three assistants per resident for transfers from bed to chair, so when it is time to transfer I have to go looking for help in my area and also must help my co-workers with their transfers. So what this averages out to, if I am lucky, is about fifteen minutes with each resident. I do not know about you but I take longer than that to get ready in the morning. It is now 11:00 a.m. and time for my lunch break of 30 minutes, my first break of the day to sit and relax.It is now lunchtime and there are four aides on the floor. Two at a time go to lunch, leaving the other two to cover the floor for the next hour. Hopefully, everyone got all their residents up and all you have to do is answer call lights, which can be for anything from wanting a pain pill, or wanting to go to the toilet, or needing to be changed because they had an accident. Oh yes, and in between all that I start to take residents down to one of the two dining rooms. One dining room is for those who can feed themselves and the other is for residents who need assistance eating or need to be fed.Lunch is over for the aides and it is time for two aides to... (shrink)

"Et toutes ces belles idées sur la liberté, elles sont appliquées quelque part? - Ensemble, non. Mais par petits bouts, oui. Enfin, je crois. - Hé bien, tu n'as qu'à aller voir." C'est ainsi que je fus arraché à la torpeur de ma bibliothèque. Depuis lors, je voyage à travers le monde avec une ambition simple : étudier les thèmes de philosophie politique qui me sont chers là où ils sont mis en oeuvre. Faire apparaître derrière les concepts des histoires, (...) des visages. Pour comprendre la tolérance religieuse, j'ai parcouru le Kerala, en Inde, où les grands monothéismes coexistent depuis la nuit des temps. Pour me faire une opinion sur le libre-échange, j'ai suivi dans son quotidien le directeur de l'Organisation mondiale du commerce. Pour tester la libéralisation des drogues, j'ai côtoyé les entrepreneurs de la marijuana au Colorado. Pour mieux saisir les enjeux du revenu universel, j'ai enquêté dans les villages brésiliens où il est expérimenté. Pour apprécier la réalité du micro-crédit, j'ai sillonné les bidonvilles de Lima. Et pour m'assurer des vertus de la liberté, j'ai rencontré ceux qui en sont privés, dans les "prisons ouvertes" finlandaises. Chemin faisant, j'ai perdu certains préjugés, découvert de nouvelles idées, croisé des auteurs insoupçonnés. Et j'ai acquis une conviction : les problèmes posés par la liberté se résolvent par... davantage de liberté. G.K. (shrink)

The confusion/non-consequential thinking explanation proposed by Newstead, Girotto, and Legrenzi (1995) for poor performance on Wason's THOG problem (a hypothetico-deductive reasoning task) was examined in three experiments with 300 participants. In general, as the cognitive complexity of the problem and the possibility of non-consequential thinking were reduced, correct performance increased. Significant but weak facilitation (33-40% correct) was found in Experiment 1 for THOG classification instructions that did not include the indeterminate response option. Substantial facilitation (up to 75% correct) was obtained (...) in Experiment 2 with O'Brien et al.'s (1990) one-other-THOG classification instruction. In Experiment 3, a revised version of O'Brien et al.'s pre-test problem format also led to substantial facilitation, even with the use of the standard three-choice THOG classification instruction. These findings are discussed in terms of Newstead et al.'s theoretical proposal and possible attentional factors. (shrink)

When people engage in conversation, they tailor their utterances to their conversational partners, whether these partners are other humans or computational systems. This tailoring, or adaptation to the partner takes place in all facets of human language use, and is based on a mental model or a user model of the conversational partner. Such adaptation has been shown to improve listeners' comprehension, their satisfaction with an interactive system, the efficiency with which they execute conversational tasks, and the likelihood of achieving (...) higher level goals such as changing the listener's beliefs and attitudes. We focus on one aspect of adaptation, namely the tailoring of the content of dialogue system utterances for the higher level processes of persuasion, argumentation and advice-giving. Our hypothesis is that algorithms that adapt content for these processes, according to a user model, will improve the usability, efficiency, and effectiveness of dialogue systems. We describe a multimodal dialogue system and algorithms for adaptive content selection based on multi-attribute decision theory. We demonstrate experimentally the improved efficacy of system responses through the use of user models to both tailor the content of system utterances and to manipulate their conciseness. (shrink)

Cook (1995) criticizes the work of Jacobs and Kosslyn (1994) on spatial relations, shape representations, and receptive fields in neural network models on the grounds that first‐order correlations between input and output unit activities can explain the results. We reply briefly to Cook's arguments here (and in Kosslyn, Chabris, Marsolek, Jacobs & Koenig, 1995) and discuss how new simulations can confirm the importance of receptive field size as a crucial variable in the encoding of categorical and coordinate spatial relations (...) and the corresponding shape representations; such simulations would testify to the computational distinction between the different types of representations. (shrink)

A new characterization of tabularity in tense logic is established, namely, a tense logic L is tabular if and only if $\mathsf {tab}_n^T\in L$ for some $n\geq 1$. Two characterization theorems for the Post-completeness in tabular tense logics are given. Furthermore, a characterization of the Post-completeness in the lattice of all tense logics is established. Post numbers of some tense logics are shown.

Two major functions of the visual system are discussed and contrasted. One function of vision is the creation of an internal model or percept of the external world. Most research in object perception has concentrated on this aspect of vision. Vision also guides the control of object-directed action. In the latter case, vision directs our actions with respect to the world by transforming visual inputs into appropriate motor outputs. We argue that separate, but interactive, visual systems have evolved for the (...) perception of objects on the one hand and the control of actions directed at those objects on the other. This 'duplex' approach to high-level vision suggests that Marrian or 'reconstructive' approaches and Gibsonian or 'purposive-animate-behaviorist' approaches need not be seen as mutually exclusive, but rather as complementary in their emphases on different aspects of visual function. (shrink)

The vast majority of contributions to the literature on spirituality in nursing make extravagant claims about transcendence, eternity, the numinous, higher powers, higher levels of existence, invisible forces, cosmic unity, the essence of humanity, or other supernatural concepts. Typically, these assertions are made without the support of argument or evidence; and, as a consequence, alternative ways of theorizing ‘spirituality’ have been closed off, while the lack of consistent scholarship has turned the topic into a metaphysical backwater. In this paper, I (...) adopt a different premise, rejecting unsupported claims, and surveying the ‘spirituality’ terrain from a naturalistic and reductionist perspective. I argue that, if we rid ourselves of non‐naturalistic assumptions, we will discover theoretical and clinical resources in health psychology, social psychology, neuropsychology, and pharmacopsychology – resources which confirm that it is possible to conceptualize the study of existential concerns, and how health professionals might respond to them, in a properly scientific manner. In order to illustrate the potential usefulness of these resources, I will take palliative care as an example. (shrink)

This text explores how human beings construe experience: experience as a resource, as a potential for understanding, representing and acting on reality.

This book analyzes for the first time in English the ethical theory that underpins Qur’anic legislation by providing a classification of specific verses in which Islam’s holy book discusses moral issues. The principal purpose of this book is to demonstrate the ways in which the Qur’an theoretically and practically provides the moral code to which Muslims around the world adhere. The author divides his analysis into a survey of Qur’anic attitudes towards the basic ethical issues of obligation and responsibility, issues (...) of moral psychology such as motivation and intention, as well as matters of social ethics such as the function of law in society. He then explores the meanings of individual morality, morality within the family and civil society, and the relationship of morality to the idea of the state. (shrink)