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)
Background: There are few standardized measures available to assess executive function in a naturalistic setting for children. The Children’s Cooking Task is a complex test that has been specifically developed to assess EF in a standardized open-ended environment. The aim of the present study was to evaluate the internal consistency, inter-rater reliability, sensitivity and specificity, and also convergent and divergent validity of the Norwegian version of CCT among children with pediatric Acquired Brain Injury and healthy controls.Methods: The present study has (...) a cross-sectional design, based on baseline data derived from a multicenter RCT. Seventy-five children with pABI from two university hospitals with parent-reported executive dysfunction and minimum of 12 months since injury/completed cancer therapy, as well as 59 HCs aged 10–17 years, were assessed with CCT using total errors as the main outcome measure. The pABI group completed tests assessing EF on the impairment level within the ICF framework, and on the participation level. In addition, they completed tests of intellectual ability, processing speed, attention, learning, and memory. Finally, overall functional outcome was evaluated for the children with pABI.Results: Acceptable internal consistency and good inter-rater reliability were found for the CCT. Children with pABI performed significantly worse on the CCT than the HCs. The CCT identified group membership, but the sensitivity and specificity were overall classified as poor. Convergent validity was demonstrated by associations between the CCT and performance-based tests assessing inhibition, cognitive flexibility, and working memory, as well as teacher-reported executive dysfunction. Divergent validity was supported by the lack of association with performance-based measures of learning and memory, attention, and verbal intellectual ability. However, there was a moderate association between the CCT and performance-based tests of processing speed. Lastly, better performance on the CCT was associated with a better functional outcome.Conclusion: Our study with a relatively large sample of children with pABI and HC’s demonstrated good psychometric properties of the CCT. CCT performance was associated with the overall level of disability and function, suggesting that CCT is related to the level of activity in everyday life and participation in society. Hence, our study suggests that the CCT has the potential to advance the assessment of EF by providing a valid analysis of real-world performance. Nevertheless, further research is needed on larger samples, focusing on predictors of task performance, and evaluating the ability of CCT to detect improvement in EF over time. The patterns of error and problem-solving strategies evaluated by the CCT could be used to inform neuropsychological rehabilitation treatmentand represent a more valid outcome measure of rehabilitation interventions. (shrink)
"In this concluding volume of his impressive study of the history of Western thought about the nature of love, Irving Singer reviews the principal efforts that have been made by 20th-Century thinkers to analyze the phenomenon of love.... [T]he bulk of the book is taken up with critical accounts of the modern thinkers who have systematically called into question the possibility itself of love as a union of distinct human selves. For the most part, these critiques are effectively executed, and (...) they bring a high level of critical acumen to bear on skeptical theses about love that are now too often accepted as truisms."—Frederick A. Olafson, _Los Angeles Times Book Review_ "Irving Singer... has developed a method of historical analysis flexible enough to deal with all kinds of love, from Greek homosexual love in Plato, to the _philia_ and _agape_ of the New Testament, to the courtly love of medieval romance, to the Romantics, for whom love was magic.... [This] final volume brings us to the present. In 'The Modern World,' Singer offers readings of Freud, Proust, and Sartre, among others. He shows how their work was formed in reaction to the 19th-century ideal of 'merging' of the identities of lover and beloved. More often than not, the great modern writers portray love as impossible, as a field of failure and regret.... This masterpiece of critical thinking is a timely, eloquent, and scrupulous account of what, after all, still makes the world go round."—Thomas D'Evelyn, _Christian Science Monitor_ "This is the third of a three-volume history of the philosophy of love. It begins with Kierkegaard, Tolstoy, and Nietzsche in the nineteenth century and treats Freud, Proust, Bergson, D. H. Lawrence, G. B. Shaw, Santayana, Sartre, and others in the twentieth. Although the author's approach is primarily historical, he intersperses critical remarks throughout. Most of the major themes which are discussed by philosophers of love make their way into this history, including friendship, sexual love, and the distinction between love that is based on the value of the beloved and love that bestows value on the beloved. Singer devotes a number of pages to his own views on falling in love, being in love, and staying in love.... Singer's exposition is lucid and organized; his criticisms are insightful."—_Ethics_ "In this third volume of historical overview of the development of the Western conception of love, Singer uses writers, philosophers, and psychologists to provide the reader with an overview of love in the late 19th and 20th century.... Analyzing authors such as Tolstoy, Proust, D. H. Lawrence, and Shaw and philosophers such as Nietzsche, Kierkegaard, Sartre, and Santayana, as well as Freud, Singer... links each contributor's thoughts to the influence of previous writers and also provides some psycho-historical insight into their personal lives that might have been either a source or direct result of their views. In this final volume, Singer proceeds to look at not just the 'great men' influence but also provides a chapter overviewing scientific contributions to our understanding of love.... Singer's work is a significant contribution to understanding the social construction of important, abstract social and personal values. By tracing love through different historical periods through a variety of voices, Singer has created a rich history of the struggle between the ideal and the real, between the dreams of what love should provide and the reality of what relationships have been in each historical period. By personalizing the voice through psychohistorical analysis, Singer also provides insight into the shaping of ideas through the intimate struggles of the shapers."—Mark V. Chaffee, _Contemporary Psychology_. (shrink)
Julkaisematta jääneessä muistiossaan Mietteitä oikeuden yleiskäsitteestä (1702-1703?) G. W. Leibniz muotoilee uudelleen Platonin Euthyfron-dialogissa esitetyn kuuluisan kysymyksen. Hän kirjoittaa: ”Myönnetään, että kaikki mitä Jumala tahtoo, on hyvää ja oikein. Sen sijaan kysytään, onko se hyvää ja oikein siksi että Jumala niin tahtoo, vai tahtooko Jumala sitä koska se on hyvää ja oikein. Eli kysytään, onko hyvyys tai oikeus jotakin mielivaltaista, vai koostuvatko ne asioiden luonnetta koskevista välttämättömistä ja ikuisista totuuksista, kuten luvut ja suhteet.” Universaaleja, ikuisia totuuksia puolustava filosofi ei voi (...) hyväksyä ensin mainittua vaihtoehtoa. Hänen mukaansa ”Se toden totta tuhoaisi Jumalan oikeudenmukaisuuden. Sillä miksi ylistäisimme häntä oikeudenmukaisista teoista, jos oikeudenmukaisuuden käsite ei hänen tapauksessaan lisää mitään teon käsitteeseen? Ja sanonta stat pro ratione voluntas, minun tahtoni käyköön perusteesta, on todella tyrannin motto.” Leibnizin kritiikki on suunnattu erityisesti hänen aikalaisiaan René Descartesia, Thomas Hobbesia ja Samuel Pufendorfia vastaan. Hän ei voi hyväksyä näkemystä, jonka mukaan oikeudenmukaisuuden mitta on vain Jumalan tahto. Perustan on löydyttävä ikuisista totuuksista, jotka ovat myös Jumalan oikeudenmukaisuuden standardi. Erityisen kuuluisaksi tuli Leibnizin kritiikki Pufendorfin näkemyksiä kohtaan, sillä Pufendorfin laajalle levinneen teoksen De officio hominis et civis ranskalaisen laitoksen neljännen painoksen toimittaja Barbeyrac liitti siihen Leibnizin kiistakirjoituksen, joka tunnetaan lyhyellä nimellä Monita (Epistola viri excellentissimi ad amicum qua monita quaedam ad principia Pufendorfiani operis de officio hominis et civis continentur, 1706) ja puolusti Pufendorfia Leibnizia vastaan. Leibnizin onnistui kuitenkin ilmeisesti osoittaa eräs heikkous Pufendorfin näkemyksissä, jota Barbeyrac ei pystynyt sivuuttamaan: tämän mukaan Jumala on saman aikaan sekä ylin tuomari että lakien laatija. Siten Leibnizin näkökulmasta Jumala on tyranni – hänen tahtonsa on oikeuden ja etiikan mitta ja koska hän on kaikkivaltias, hän voi pakottaa ihmiset noudattamaan sellaista oikeudenmukaisuutta, joka on hänen mieleistään. Koska Jumalan yläpuolella ei ole Pufendorfin mukaan mitään, hän voi toimia aivan mielivaltaisesti. Leibnizin kritiikki kiteytyy Pufendorfin epäselvään erotteluun ulkoisen ja sisäisen velvollisuuden välillä, joka jättää hänen näkemyksensä arvoitukselliseksi. Tutkiskelen tässä esitelmässä oliko Leibnzin kritiikki johdonmukainen ja oikeutettu. Onko Pufendorfin näkemyksissä heikkous, jota hän ei itse huomannut? Vertailen myös asiaa koskevia eri kommentaareja (mm. Kari Saastamoinen, Petter Korkman, Fiametta Palladini) ja arvioin Leibnizin kritiikin reseptiota Pufendorf-tutkimuksessa. (shrink)
We introduce a new model of reduction inspired by Kemeny and Oppenheim’s model [Kemeny & Oppenheim 1956] and argue that this model is operative in a “ruthlessly reductive” part of current neuroscience. Kemeny and Oppenheim’s model was quickly rejected in mid-20th-century philosophy of science and replaced by models developed by Ernest Nagel and Kenneth Schaffner [Nagel 1961], [Schaffner 1967]. We think that Kemeny and Oppenheim’s model was correctly rejected, given what a “theory of reduction” was supposed to account for at (...) that time. But their guiding insights about what constitutes scientific reduction—increases in explanatory scope and systematization—reflect actual practices of current reductionistic neuroscience. The key rehabilitative step to make their insights fit current scientific details is to restate them using resources from recent work on causal-mechanistic explanation. We begin with a scientific case study, drawn from the relatively new field of “molecular and cellular cognition”. It provides an explanation of the well-known Ebbinghaus spacing effect on learning and memory in terms of interactions between a transcriptional enhancer protein and its inhibiting phosphatase in neurons recruited into the memory trace. Next we briefly describe some popular models of reduction from mid-20th-century philosophy of science. We point out how these models fail to illuminate key features of our scientific case study. Finally we present our causal-mechanistically updated Kemeny and Oppenheim-inspired model and argue that it nicely accounts for the details of our scientific case study. We close with a remark that will hopefully undercut the surprise many may feel to learn that a long-rejected philosophical account of reduction actually is at work in one of the most prominent reductionistic endeavors in current science. (shrink)
Traditional approaches to computer ethics regard computers as tools, andfocus, therefore, on the ethics of their use. Alternatively, computer ethicsmight instead be understood as a study of the ethics of computationalagents, exploring, for example, the different characteristics and behaviorsthat might benefit such an agent in accomplishing its goals. In this paper,I identify a list of characteristics of computational agents that facilitatetheir pursuit of their end, and claim that these characteristics can beunderstood as virtues within a framework of virtue ethics. This (...) frameworkincludes four broad categories – agentive, social, environmental, and moral– each of which can be understood as a spectrum of virtues rangingbetween two extreme subcategories. Although the use of a virtue frameworkis metaphorical rather than literal, I argue that by providing a frameworkfor identifying and critiquing assumptions about what a `good' computer is,a study of android arete provides focus and direction to the developmentof future computational agents. (shrink)
The current antireductionist consensus rests in part on the indefensibility of the deductive-nomological model of explanation, on which classical reductionism depends. I argue that the DN model is inessential to the reductionist program and that mechanism provides a better framework for thinking about reductionism. This runs counter to the contemporary mechanists’ claim that mechanism is an alternative to reductionism. I demonstrate that mechanists are committed to reductionism, as evidenced by the historical roots of the contemporary mechanist program. This view shares (...) certain core commitments with reductionism. It is these shared commitments that constitute the essential elements of the reductionist program. (shrink)
Among the most outstanding discoveries of the last century is one that is not quite as momentous as the theory of relativity or cybernetics. It may even still be enigmatic. It has no one single author, it is not expressed in a single formula, conception, or invention. Nonetheless it is worth all the others combined.