Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...) research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance. (shrink)

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.

In the United States, final amendments to the Federal Policy for the Protection of Human Subjects (“the Common Rule”) were published on January 19, 2017, and they will take effect on January 21, 2019. One of the most widely discussed provisions is that for the first time, federal regulations governing research with humans authorize the use of broad consent for future, unspecified research on individually identifiable biospecimens and associated data. Many questions have been raised about broad consent, including what effect (...) it will have on research and whether it adequately protects the interests of research participants.There are lessons to be learned for the U.S. and other countries by looking to countries that already have experience with broad consent for biobank collection and with the storage and subsequent use of the biospecimens and data. This article describes how broad consent works in five countries—Canada (in Quebec), Israel, Nigeria, Taiwan, and the United Kingdom—and with different types of biobanks: national biobanks, federated biobanks, and regional biobanks. Evaluating the provisions and challenges of the broad consent approaches in these countries can inform policies for this increasingly used approach to biobank regulation. (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)

I väntan på den engelska Festschriften, den definitiva biografin eller de självförhärligande memoarerna kommer här för första gången en samling porträtt av den internationellt mest uppmärksammade svenska statsvetaren, den kontroversielle samhällsdebattören Bo Rothstein. Få samhällsforskare har med sådan intensitet tagit universitetens tredje uppgift till intäkt för att ifrågasätta gängse uppfattningar om sakernas tillstånd i riket. Många är de läsare, tittare eller åhörare som knappast kunnat undgå att beröras av hans synpunkter på allt från metoo till tiggeri, något färre är (...) nog de som på allvar tagit del av hans forskningsresultat om korruption och statsförvaltning. I denna bok tecknar ett tjugotal svenska forskare, författare och vänner sin bild av forskaren, debattören och livsnjutaren Bo Rothstein."--Back cover. (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)

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)

New developments in genetics could affect a variety of real property rights. Mortgage lenders, mortgage insurers, real estate sellers, senior living centers, retirement communities, or other parties in residential real estate transactions begin requiring predictive genetic information as part of the application process. One likely use would be by retirement communities to learn an individual's genetic risk for Alzheimer's disease. The federal Fair Housing Act prohibits discrimination based on disability, but it is not clear that it would apply to genetic (...) risk assessments. Only California law explicitly applies to this situation and there have been no reported cases. (shrink)

Residency training in the Netherlands is to be restructured over the coming years. To this end a general competence profile for medical specialists has been introduced. This profile is nearly the same as the Canadian CanMEDS 2000 model, which describes seven general areas of medical specialist competence, one of which is professionalism. In order to establish a training programme for residents and their instructors based on this competence, it is necessary to develop a vision that does justice to everyday medical (...) practice. The two most prevailing views of professionalism—as personal, or as a behavioural characteristic—fall short of this. Only when professionalism is understood as reflective professionalism does it encompass the fundamental contextuality of medical treatment. This means that the focus of training and assessment must be shifted to accountability for treatment. (shrink)

The article addresses the issue of using English songs to assist students of non-language departments master basic linguistic skills and communicative abilities. The authors offer a systematic and flexible approach to dealing with educational songs, demonstrate advantages of implementing numerous tasks to be varied and adapted to the needs of particular target audiences. The considered approach is intended to raise students’ motivation in learning foreign language.