Purpose: This review identifies the prominent topics in the literature pertaining to the ethical, legal, and social issues raised by research investigating personalized genomic medicine. Methods: The abstracts of 953 articles extracted from scholarly databases and published during a 5-year period were reviewed. A total of 299 articles met our research criteria and were organized thematically to assess the representation of ELSI issues for stakeholders, health specialties, journals, and empirical studies. Results: ELSI analyses were published in both scientific and ethics (...) journals. Investigational research comprised 45% of the literature reviewed and the remaining 55% comprised normative analyses. Traditional ELSI concerns dominated the discourse including discussions about disclosure of research results. In fact, there was a dramatic increase in the number of articles focused on the disclosure of research results and incidental findings to research participants. Few papers focused on particular disorders, the use of racial categories in research, international communities, or special populations. Conclusion: Considering that strategies in personalized medicine increasingly target individuals’ unique health conditions, environments, and ancestries, further analysis is needed on how ELSI scholarship can better serve the increasingly global, interdisciplinary, and diverse PGM research community. (shrink)

Variant Creutzfeldt–Jakob disease is a fatal, transmissible, neurodegenerative disorder for which there is currently no effective treatment. vCJD arose from the zoonotic spread of bovine spongiform encephalopathy. There is now compelling evidence for human to human transmission through blood transfusions from presymptomatic carriers and experts are warning that the real epidemic may be yet to come. Imperatives exist for the development of reliable, non-invasive presymptomatic diagnostic tests. Research into such tests is well advanced. In this article the ethical implications of (...) the availability of these tests are elaborated and comparisons drawn with predictive genetic testing for Huntington’s disease and screening for HIV. Paramount to considerations is the issue of whom to test, weighing up respect for personal autonomy against obligations to benefit and protect society. A paradigm is proposed similar to that used for HIV screening but with unique features: compulsory testing of all blood/organ donors and individuals undergoing surgery or invasive procedures who have a significant risk of disease transmission. (shrink)

The dominant paradigm of experiments in the social and behavioral sciences views an experiment as a test of a theory, where the theory is assumed to generalize beyond the experiment's specific conditions. According to this view, which Alan Newell once characterized as “playing twenty questions with nature,” theory is advanced one experiment at a time, and the integration of disparate findings is assumed to happen via the scientific publishing process. In this article, we argue that the process of integration is (...) at best inefficient, and at worst it does not, in fact, occur. We further show that the challenge of integration cannot be adequately addressed by recently proposed reforms that focus on the reliability and replicability of individual findings, nor simply by conducting more or larger experiments. Rather, the problem arises from the imprecise nature of social and behavioral theories and, consequently, a lack of commensurability across experiments conducted under different conditions. Therefore, researchers must fundamentally rethink how they design experiments and how the experiments relate to theory. We specifically describe an alternative framework, integrative experiment design, which intrinsically promotes commensurability and continuous integration of knowledge. In this paradigm, researchers explicitly map the design space of possible experiments associated with a given research question, embracing many potentially relevant theories rather than focusing on just one. Researchers then iteratively generate theories and test them with experiments explicitly sampled from the design space, allowing results to be integrated across experiments. Given recent methodological and technological developments, we conclude that this approach is feasible and would generate more-reliable, more-cumulative empirical and theoretical knowledge than the current paradigm – and with far greater efficiency. (shrink)

The concept of selecting for a disability, and deafness in particular, has triggered a controversial and sometimes acrimonious debate between key stakeholders. Previous studies have concentrated on the views of the deaf and hard of hearing, health professionals and ethicists towards reproductive selection for deafness. This study, however, is the first of its kind examining the views of hearing children of deaf adults towards preimplantation genetic diagnosis and prenatal diagnosis to select for or against deafness. Hearing children of deaf adults (...) straddle both the deaf and hearing worlds, and this dual perspective makes them ideally placed to add to the academic discourse concerning the use of genetic selection for or against deafness. The study incorporated two complementary stages, using initial, semistructured interviews with key informants as a means to guide the subsequent development of an electronic survey, completed anonymously by 66 individuals. The participants shared many of the same views as deaf individuals in the D/deaf community. The similarities extended to their opinions regarding deafness not being a disability, their ambivalence towards having hearing or deaf children and their general disapproval of the use of genetic technologies to select either for or against deafness. (shrink)

Commentaries on the target article offer diverse perspectives on integrative experiment design. Our responses engage three themes: (1) Disputes of our characterization of the problem, (2) skepticism toward our proposed solution, and (3) endorsement of the solution, with accompanying discussions of its implementation in existing work and its potential for other domains. Collectively, the commentaries enhance our confidence in the promise and viability of integrative experiment design, while highlighting important considerations about how it is used.

The ratio of index- and ring-finger lengths is thought to be related to prenatal androgen exposure, and in many, though not all, populations, men have a lower average digit ratio than do women. In many studies an inverse relationship has been observed, among both men and women, between 2D:4D ratio and measures of athletic ability. It has been further suggested that, in hunter-gatherer populations, 2D:4D ratio might also be negatively correlated with hunting ability, itself assumed to be contingent on athleticism. (...) This hypothesis has been tested using endurance running performance among runners from a Western, educated, and industrialized population as a proximate measure of hunting ability. However, it has not previously been tested among actual hunter-gatherers using more ecologically valid measures of hunting ability and success. The current study addresses this question among Tanzanian Hadza hunter-gatherers. I employ a novel method of assessing hunting reputation that, unlike previous methods, allows granular distinctions to be made between hunters at all levels of perceived ability. I find no statistically significant relationship between digit ratio and either hunting reputation or two important hunting skills. I confirm that Hadza men have higher mean 2D:4D ratios than men in many Western populations. I discuss the notion that 2D:4D ratio may be the consequence of an allometric scaling relationship between relative and absolute finger lengths. Although it is difficult to draw clear conclusions from these results, the current study provides no support for the theorized relationship between 2D:4D ratio and hunting skill. (shrink)

Biological ontologies are used to organize, curate, and interpret the vast quantities of data arising from biological experiments. While this works well when using a single ontology, integrating multiple ontologies can be problematic, as they are developed independently, which can lead to incompatibilities. The Open Biological and Biomedical Ontologies Foundry was created to address this by facilitating the development, harmonization, application, and sharing of ontologies, guided by a set of overarching principles. One challenge in reaching these goals was that the (...) OBO principles were not originally encoded in a precise fashion, and interpretation was subjective. Here we show how we have addressed this by formally encoding the OBO principles as operational rules and implementing a suite of automated validation checks and a dashboard for objectively evaluating each ontology’s compliance with each principle. This entailed a substantial effort to curate metadata across all ontologies and to coordinate with individual stakeholders. We have applied these checks across the full OBO suite of ontologies, revealing areas where individual ontologies require changes to conform to our principles. Our work demonstrates how a sizable federated community can be organized and evaluated on objective criteria that help improve overall quality and interoperability, which is vital for the sustenance of the OBO project and towards the overall goals of making data FAIR. Competing Interest StatementThe authors have declared no competing interest. (shrink)

To characterize human emotions, researchers have increasingly utilized Automatic Facial Expression Analysis (AFEA), which automates the Facial Action Coding System (FACS) and translates the facial muscular positioning into the basic universal emotions. There is broad interest in the application of FACS for assessing consumer expressions as an indication of emotions to consumer product-stimuli. However, the translation of FACS to characterization of emotions is elusive in the literature. The aim of this systematic review is to give an overview of how FACS (...) has been used to investigate human emotional behavior to consumer product-based stimuli. The search was limited to studies published in English after 1978, conducted on humans, using FACS or its action units to investigate affect, where emotional response is elicited by consumer product-based stimuli evoking at least one of the five senses. The search resulted in an initial total of 1,935 records, of which 55 studies were extracted and categorized based on the outcomes of interest including (i) method of FACS implementation; (ii) purpose of study; (iii) consumer product-based stimuli used; and (iv) measures of affect validation. Most studies implemented FACS manually (73%) to develop products and/or software (20%) and used consumer product-based stimuli that had known and/or defined capacity to evoke a particular affective response, such as films and/or movie clips (20%); minimal attention was paid to consumer products with low levels of emotional competence or with unknown affective impact. The vast majority of studies (53%) did not validate FACS-determined affect and, of the validation measures that were used, most tended to be discontinuous in nature and only captured affect as it holistically related to an experience. This review illuminated some inconsistencies in how FACS is carried out as well as how emotional response is inferred from facial muscle activation. This may prompt researchers to consider measuring the total consumer experience by employing a variety of methodologies in addition to FACS and its emotion-based interpretation guide. Such strategies may better conceptualize consumers' experience with products of low, unknown, and/or undefined capacity to evoke an affective response such as product prototypes, line extensions, etc. (shrink)

Experiential evidence shows that pain is associated with common meanings. These include a meaning of threat or danger, which is experienced as immediately distressing or unpleasant; cognitive meanings, which are focused on the long-term consequences of having chronic pain; and existential meanings such as hopelessness, which are more about the person with chronic pain than the pain itself. This interdisciplinary book - the second in the three-volume Meanings of Pain series edited by Dr Simon van Rysewyk - aims to better (...) understand pain by describing experiences of pain and the meanings these experiences hold for the people living through them. The lived experiences of pain described here involve various types of chronic pain, including spinal pain, labour pain, rheumatic pain, diabetic peripheral neuropathic pain, fibromyalgia, complex regional pain syndrome, endometriosis-associated pain, and cancer-related pain. Two chapters provide narrative descriptions of pain, recounted and interpreted by people with pain. Language is important to understanding the meaning of pain since it is the primary tool human beings use to manipulate meaning. As discussed in the book, linguistic meaning may hold clues to understanding some pain-related experiences, including the stigmatisation of people with pain, the dynamics of patient-clinician communication, and other issues, such as relationships between pain, public policy and the law, and attempts to develop a taxonomy of pain that is meaningful for patients. Clinical implications are described in each chapter. This book is intended for people with pain, their family members or caregivers, clinicians, researchers, advocates, and policy makers. (shrink)

Autonomous and automatic weapons would be fire and forget: you activate them, and they decide who, when and how to kill; or they kill at a later time a target you’ve selected earlier. Some argue that this sort of killing is always wrong. If killing is to be done, it should be done only under direct human control. (E.g., Mary Ellen O’Connell, Peter Asaro, Christof Heyns.) I argue that there are surprisingly many kinds of situation where this is false and (...) where the use of Automated Weapons Systems would in fact be morally required. These include cases where a) once one has activated a weapon expected then to behave lethally, it would be appropriate to let it continue because this is part of a plan whose goodness one was best positioned to evaluate before activating the weapon; b) one expects better long-term consequences from allowing it to continue; c) allowing it to continue would express a decision you made to be resolute, a decision that could not have advantaged you had it not been true that you would carry through with it; d) the weapon is mechanically not recallable, so that, to not allow it to carry through, you would have had to refrain from activating it in the first place, something you expected would have disastrous consequences; e) you must deputize necessary killings to autonomous machines in order to protect yourself from guilt you shouldn’t have to bear; f) it would be morally better for the burden of responsibility for the killing to be shared among several agents, and the agents deputizing killing to machines can do this, especially where it’s not predictable which machine will be successful; g) a killing would be morally better done with elements of randomness and lack of deliberation, and a (relatively stupid) machine could do this where a person could not; h) the machine would be acting as a Doomsday Device, so that it could not have had its hoped for deterrent effect had you not ensured that you would be unable to recall it if enemy action activated it; i) letting it carry through is a necessary part of its own learning process, and you expect that this learning will have salutary effects later on; j) human intervention in the machine’s operation would disastrously impair its precision, or its speed and efficiency; k) using non-automated methods would require human resources you just don’t have in a task that nevertheless must be done (e.g., using land-mines to protect remote installations); l) the weapon has such horrible and indiscriminate power that it is doubtful whether it could be actually used in ways compatible with International Humanitarian Law and the Laws of War, which require that weapons be used only in ways respecting distinctness, necessity and proportionality, but its threat of use could respect these principles in affording deterrence provided human error cannot lead to their accidental deployment, this requiring that they be controlled by carefully designed autonomous and automatic systems. I then consider objections based on conceptions of human dignity and find that very often dignity too is best served by autonomous machine killing. Examples include saving your village by activating a robot to kill invading enemies who would inflict great indignity on your village, using a suicide robot to save yourself from a less dignified death at enemy hands, using a robotic drone to kill someone otherwise not accessible in order to restore dignity to someone this person killed and to his family, and using a robot to kill someone who needs killing, but the killing of whom by a human executioner would soil the executioner’s dignity. I conclude that what matters in rightful killing isn’t necessarily that it be under the direct control of a human, but that it be under the control of morality; and that could sometimes require use of an autonomous or automated device. (This paper was formerly called "Fire and Forget: A Defense of the Use of Autonomous Weapons in War" on Philpapers; the current title is the title of the published version.). (shrink)

The word ‘existentialism’ has become something of a catchword in religious circles today, and one suspects that it is sometimes a substitute rather than a medium for thought. Most theological teachers must from time to time have received from a pupil an essay in which the words ‘existential’, ‘existentially’ and ‘existentialism’ appear to have been sprinkled from a pepper-pot over an exposition whose meaning would remain unchanged if these words were excised altogether. Nevertheless, usum non tollit abusus, and the following (...) rather unsystematic remarks may perhaps be of some help in elucidating and evaluating a mode of thought and expression which has attracted the interest of some of the more profound, as well as of some of the more superficial, theological and philosophical writers of the present day. (shrink)

_Humanizing Education_ offers historic examples of humanizing educational spaces, practices, and movements that embody a spirit of hope and change. From Dayton, Ohio, to Barcelona, Spain, this collection of essays from the _Harvard Educational Review_ carries readers to places where people have first imagined—and then organized—their own educational responses to dehumanizing practices and conditions. Contributors include Montse Sánchez Aroca, William Ayers, Kathy Boudin, Fernando Cardenal, Jeffrey M. R. Duncan-Andrade, Marco Garrido, Jay Gillen, Maxine Greene, Kathe Jervis, Nancy Uhlar Murray, (...) Valerie Miller, Wendy Ormiston, Ana Y. Ramos-Zayas, Vanessa Siddle Walker, Arthur E. Thomas, and Travis Wright. (shrink)

ITA: In che modo il nostro cervello è in grado di produrre quel tipo di comportamento flessibile e volto a specifici scopi che chiamiamo intelligenza? Le differenze cognitive tra individui sono dovute a una varietà di abilità mentali o a una sola? Questo articolo discute gli elementi centrali della teoria dell’intelligenza generale proposta da John Duncan nel volume How intelligence happens, tradotto recentemente in italiano e corredato da un capitolo conclusivo inedito. Prendendo le mosse dalla ricerca di Charles Spearman (...) sull’intelligenza generale e sui test d’intelligenza, Duncan caratterizza l’intelligenza nei termini di integrazione e controllo cognitivo. I dati neuroscientifici raccolti da Duncan suggeriscono che questi aspetti chiave del comportamento intelligente siano realizzati da un circuito cerebrale, chiamato multiple-demand system, in grado di scomporre problemi complessi in sotto-problemi più semplici e integrare informazioni da varie aree del cervello. ENG: How does our brain generate that sort of flexible and goal-directed behaviour that we call intelligence? Are individual differences in intelligence due to a variety of cognitive abilities or do they depend on one single mental ability? In this commentary, I revise and critically assess the key elements of John Duncan’s theory of general intelligence presented in the popular-science book How intelligence happens, recently translated into Italian and edited by F. Pavani, with a new final chapter. Starting from Charles Spearman’s research on a general intelligence factor and psychometric tests, Duncan advances a theory that characterises intelligence in terms of integration and cognitive control. Neuropsychological and neuroimaging data suggest that such key aspects of intelligent behaviour are realised by a brain network called a multiple-demand system, which is capable of decomposing complex problems into simpler sub-problems and then integrating information from different brain areas. (shrink)

Synaesthesia is a neurodevelopmental condition characterised by anomalous sensory perceptions and associated alterations in cognitive function. This chapter summarises what is known about the familial transmission of synaesthesia and its genetic underpinnings. Early familiality studies showed evidence for a strong genetic predisposition, a highly skewed female: male ratio, and an absence of male-to-male transmission. These patterns supported an early hypothesis of a single-gene X-linked dominant mode of inheritance with male lethality. Subsequent analyses in larger samples indicated that the mode of (...) inheritance was likely to be more complex, with both the strong female skew and absence of male-to-male transmission brought into question. We review in detail the first whole genome linkage scan for auditory-visual synaesthesia and a subsequent family linkage study on coloured sequence synaesthesia. Together these results suggest linkage to five chromosomes but give no support for linkage to the X-chromosome. We discuss candidate genes within these regions and potential implications for the aetiology of synaesthesia. We also discuss the implications of these pioneering genome scans for our understanding of synaesthesia and of how different synaesthetic phenotypes may arise from different genetic predispositions interacting with other genes and with the environment. (shrink)

Research Ethics Committees (RECs) are frequently a focus of complaints from researchers, but evidence about the operation and decisions of RECs tends to be anecdotal. We conducted a systematic study to identify and compare the ethical issues raised in 54 letters to researchers about the same 18 applications submitted to three RECs over one year. The most common type of ethical trouble identified in REC letters related to informed consent, followed by scientific design and conduct, care and protection of research (...) participants, confidentiality, recruitment and documentation. Community considerations were least frequently raised. There was evidence of variability in the ethical troubles identified and the remedies recommended. This analysis suggests that some principles may be more institutionalized than others, and offers some evidence of inconsistency between RECs. Inconsistency is often treated as evidence of incompetence and caprice, but a more sophisticated understanding of the role of RECs and their functioning is required. (shrink)

The literature on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises concerns that these technologies may affect personality, mood, and behavior. We conducted semi-structured interviews with researchers (n = 23) involved in developing next-generation DBS systems, exploring their perspectives on ethics and policy topics including whether DBS/aDBS can cause such changes. The majority of researchers reported being aware of personality, mood, or behavioral (PMB) changes in recipients of DBS/aDBS. Researchers offered varying estimates of the frequency of PMB changes. A (...) smaller majority reported changes in personality specifically. Some expressed reservations about the scientific status of the term ‘personality,’ while others used it freely. Most researchers discussed negative PMB changes, but a majority said that DBS/aDBS can also result in positive changes. Several researchers viewed positive PMB changes as part of the therapeutic goal in psychiatric applications of DBS/aDBS. Finally, several discussed potential causes of PMB changes other than the device itself. (shrink)

Whether we like it or not, whether we realize it or not, the methods of science impinge upon and affect our daily lives. In the four centuries during which they have been properly understood and used, these scientific methods not only have enlarged man's stock of knowledge many thousandfold but also have helped bring about changes in outlook and, indeed, in man's physical environment, far outstripping the changes that took place throughout all the rest of recorded human history. Yet, one (...) of the paradoxes of our time is that, while we live in an increasingly scientific and technological society, the ordinary citizen's knowledge of and interest in scientific and technical matters seem, in fact, to be declining. This lack of interest sometimes amounts almost to hostility. As a result, leadership, possibly even direct control, of world affairs may be well pass to those nations which are prepared to cultivate their science and technology, while, on a national scale, if the trend continues, only an esoteric "scientific priesthood" will be able to make many of the most important decisions. The sole answer - the only defense - is knowledge. To arouse the interest of laymen and students in scientific and technical matters is E. L. Dellow's purpose in writing this book. To achieve this aim, he exploits a trait inherent in most of us - a delight in watching other people work. Rather than setting out to dazzle us by reciting the achievements of science and technology, however, he shows how scientific knowledge, which makes the spectacular achievements possible, is gained, and he gives us some insight into the way in which scientists and technicians think and work. In the course of doing so, he also gives the reader who may not previously have taken an interest in these subjects a painless introduction to basic mathematical principles and other techniques of scientific research, discovery, and invention. -- from dust jacket. (shrink)

Despite the growing body of literature on training in the responsible conduct of research, few studies have examined the effectiveness of delivery formats used in ethics courses. The present effort sought to address this gap in the literature through a meta-analytic review of 66 empirical studies, representing 106 ethics courses and 10,069 participants. The frequency and effectiveness of 67 instructional and process-based content areas were also assessed for each delivery format. Process-based contents were best delivered face-to-face, whereas contents delivered online (...) were most effective when restricted to compliance-based instructional contents. Overall, hybrid courses were found to be most effective, suggesting that ethics courses are best delivered using a blend of formats and content areas. Implications and recommendations for future development of ethics education courses in the sciences are discussed. (shrink)

Few years pass without an attempt to interpret Theocritus, Idyll 7. The poem's narrative and descriptive skill, dramatic subtlety and felicity of language are mercifully more than adequate to survive these scholarly onslaughts, so I have less hesitation in offering my own interpretation. The poem's chief problems seem to me to arise from uncertainty as to: Who is the narrator, and why are we kept waiting until line 21 before we are told that he is called Simichidas? Who, or what (...) sort of man, is the goatherd Lycidas, whom he encounters on his way from town to the harvest festival? Answers to these questions fundamentally affect our interpretation of their exchange of songs, which occupies almost half the idyll, and of Lycidas' gift of his stick to Simichidas; and these interpretations will go far towards interpreting the poem as a whole. (shrink)

Medical educators invoke professionalism as a core competency in curricula. This paper criticizes classic definitions. It also identifies some negative traits of medicine as a profession. The call to professionalism is naive nostalgia. Straightforward didactics in professionalism cannot do the desired work in medical education. The most we can say is that students should adopt the good aspects of professionalism and the profession should stop being some of what it has been. This is a platitude. If the notion is to (...) be more than shallow, each student and practitioner will have to engage in much dialogue, reflection and refinement over many years. (shrink)

The introduction explain the need for how an international, inclusive discussion about the range of different methodological approaches from different traditions of philosophy can be read alongside each other and be seen in sometimes very critical conversation with each other. In addition, the introduction identifies four broad themes in the volume: the largest group of chapters advocate methods that promote history of philosophy as an unapologetic, autonomous enterprise with its own criteria within philosophy. Second, three chapters can be seen as (...) historicizing the history of philosophy from within. Third, four chapters argue for history of philosophy as a means toward making contributions to contemporary philosophy. Finally, two chapters explore the relationship between the history of philosophy and the history of science. (shrink)

Darwin himself suggested the idea of generalizing the core Darwinian principles to cover the evolution of social entities. Also in the nineteenth century, influential social scientists proposed their extension to political society and economic institutions. Nevertheless, misunderstanding and misrepresentation have hindered the realization of the powerful potential in this longstanding idea. Some critics confuse generalization with analogy. Others mistakenly presume that generalizing Darwinism necessarily involves biological reductionism. This essay outlines the types of phenomena to which a generalized Darwinism applies, and (...) upholds that there is no reason to exclude social or economic entities. (shrink)