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.

Investigations into the neurobiology of moral cognition are often done by examining clinical populations characterized by diminished moral emotions and a proclivity toward immoral behavior. Psychopathy is the most common disorder studied for this purpose. Although cocaine abuse is highly co-morbid with psychopathy and cocaine-dependent individuals exhibit many of the same abnormalities in socio-affective processing as psychopaths, this population has received relatively little attention in moral psychology. To address this issue, the authors used functional magnetic resonance imaging (fMRI) to record (...) hemodynamic activity in 306 incarcerated male adults, stratified into regular cocaine users (n = 87) and a matched sample of non-cocaine users (n = 87), while viewing pictures that did or did not depict immoral actions and determining whether each depicted scenario occurred indoors or outdoors. Consistent with expectations, cocaine users showed abnormal neural activity in several frontostriatial regions during implicit moral picture processing compared to their non-cocaine using peers. This included reduced moral/non-moral picture discrimination in the vACC, vmPFC, lOFC, and left vSTR. Additionally, psychopathy was negatively correlated with activity in an overlapping region of the ACC and right lateralized vSTR. These results suggest that regular cocaine abuse may lead to affective deficits which can impact relatively high-level processes like moral cognition. Moreover, they add to a growing body of research suggesting an important role for the mesocorticolimbic dopamine pathway in socio-affective processing. (shrink)

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)

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.

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)

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.

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)

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.

"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)

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)

Statistical distributions have great applicability for modeling data in almost every applied sector. Among the available classical distributions, the inverse Weibull distribution has received considerable attention. In the practice of distribution theory, numerous methods have been studied and suggested/introduced to increase the flexibility level of the traditional probability distributions. In this paper, we implement different distribution methods to obtain five new different versions of the inverse Weibull model. The new modifications of the inverse Weibull model are called the logarithm transformed-inverse (...) Weibull, a flexible reduced logarithmic-inverse Weibull, the weighted TX-inverse Weibull, a new generalized-inverse Weibull, and the alpha power transformed extended-inverse Weibull distributions. To illustrate the flexibility and applicability of the new modifications of the inverse Weibull model, a biomedical data set is analyzed. The data set consists of 108 observations and represents the mortality rate of the COVID-19-infected patients. The practical application shows that the new generalized-inverse Weibull is the best modification of the inverse Weibull distribution. (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)

This article investigates the impacts of proper modeling of the wake effects and wind speed delays, between different wind turbines' rows, on the dynamic performance accuracy of the wind farms models. Three different modeling scenarios were compared to highlight the impacts of wake effects and wind speed time-delay models. In the first scenario, wind wake effect and time delay are ignored. Consequently, all wind turbines are assumed subjected to the same wind speed profile. The second scenario considers the wind wake (...) effect, and it was modeled by reducing the incident wind speed values by 0.5 m/s from one row to the next row facing the wind. The last scenario, the proposed model, used the wind wake effect model developed for wind turbines micrositting applications and considered the effect of the delay time between the wind speed profiles incident on the different wind turbines' rows. (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)

Cook (1995) criticized Kosslyn, Chabris, Marsolek & Koenig's (1992) network simulation models of spatial relations encoding in part because the absolute position of a stimulus in the input array was correlated with its spatial relation to a landmark; thus, on at least some trials, the networks did not need to compute spatial relations. The network models reported here include larger input arrays, which allow stimuli to appear in a large range of locations with an equal probability of being above (...) or below a “bar,” thus eliminating the confound present in earlier models. The results confirm the original hypothesis that as the size of the network's receptive fields increases, performance on a coordinate spatial relations task (which requires computing precise, metric distance) will be relatively better than on a categorical spatial relations task (which requires computing above/below relative to a landmark). (shrink)

Paper-based privacy policies fail to resolve the new changes posed by electronic healthcare. Protecting patient privacy through electronic systems has become a serious concern and is the subject of several recent studies. The shift towards an electronic privacy policy introduces new ethical challenges that cannot be solved merely by technical measures. Structured Patient Privacy Policy (S3P) is a software tool assuming an automated electronic privacy policy in an electronic healthcare setting. It is designed to simulate different access levels and rights (...) of various professionals involved in healthcare in order to assess the emerging ethical problems. The authors discuss ethical issues concerning electronic patient privacy policies that have become apparent during the development and application of S3P. (shrink)

This book provides a clear and nuanced appraisal of Hegel's treatment of Africa, India, and Islam, and of the implications of this treatment for postcolonial and global studies. Analyzing Hegel's master-slave dialectic and his views on Africa, India, and Islam, it situates these views not only within Hegel's historical scheme but also within a broader European philosophical context and the debates they have provoked within Hegel scholarship. Each chapter explores various in depth readings of Hegel by postcolonial critics, investigating both (...) the Eurocentric and potentially global nature of his dialectic. Ultimately, the book shows both where of this profoundly influential thinker archetypally embodies certain Eurocentric traits that have characterized modernity and how, ironically, he himself gives us the tools for working towards a more global vision. Offering a concise introduction not only to an important dimension of Hegel's thought - his orientation towards "empire" - but also to the various issues raised by postcolonial theory and global studies, this book will be of use to philosophers as well as advanced students of literary and cultural theory alike. (shrink)