In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often‐ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and potential benefits. They conclude with a discussion of responsible behavior in the context of SBG research. (...) SBG research that compares individuals within a group according to a “sensitive” phenotype requires extra attention to responsible conduct and to responsible communication about the research and its findings. SBG research (1) on sensitive phenotypes that (2) compares two or more groups defined by (a) race, (b) ethnicity, or (c) genetic ancestry (where genetic ancestry could easily be misunderstood as race or ethnicity) requires a compelling justification to be conducted, funded, or published. All authors agree that this justification at least requires a convincing argument that a study's design could yield scientifically valid results; some authors would additionally require the study to have a socially favorable risk‐benefit profile. (shrink)

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a “living (...) ethics”, described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process. (shrink)

Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this (...) movement usually offer four ways in which their approach to medical diagnosis and health care improves upon current practices, arguing that it is more “personalized,” “predictive,” “preventive,” and “participatory” than the medical status quo. Initially, it was personalization that seemed to best sum up the movement's appeal. By 2012, however, powerful opinion leaders were abandoning “personalized medicine” in favor of a new label: “precision medicine.” The new label received a decisive seal of approval when, in January 2015, President Obama unveiled plans for a national “precision medicine initiative” to promote the development and use of genomic tools in health care. (shrink)

Neuroethics is an interdisciplinary field that arose in response to novel ethical challenges posed by advances in neuroscience. Historically, neuroethics has provided an opportunity to synergize different disciplines, notably proposing a two-way dialogue between an ‘ethics of neuroscience’ and a ‘neuroscience of ethics’. However, questions surface as to whether a ‘neuroscience of ethics’ is a useful and unified branch of research and whether it can actually inform or lead to theoretical insights and transferable practical knowledge to help resolve ethical questions. (...) In this article, we examine why the neuroscience of ethics is a promising area of research and summarize what we have learned so far regarding its most promising goals and contributions. We then review some of the key methodological challenges which may have hindered the use of results generated thus far by the neuroscience of ethics. Strategies are suggested to address these challenges and improve the quality of research and increase neuroscience's usefulness for applied ethics and society at large. Finally, we reflect on potential outcomes of a neuroscience of ethics and discuss the different strategies that could be used to support knowledge transfer to help different stakeholders integrate knowledge from the neuroscience of ethics. (shrink)

Considering that some university-based principal preparation programmes may not be properly training principals for leadership roles, “grow your own” leadership development programmes have become more popular across the US. This study provides a contribution to previous research in terms of the specific components a district leadership development programme may incorporate into its curriculum in order to positively influence school principals’ effectiveness as school leaders. A purposeful sample of second-, third- and fourth-year campus principals working in a large urban school district (...) in the south-west region of the US who had participated in their district’s leadership development programme were administered the Principal Effectiveness Survey and participated in semi-structured interviews to examine the influence of the programme on the participants’ effectiveness as leaders. Survey results indicated that principals consider training activities related to human capital, executive leadership, s... (shrink)

Harcourt argues that in clinical contexts, children and young people with mental health illness can experience epistemic, specifically testimonial, injustice when their perspectives are unjustifiably discounted by health service providers.1 Our goal in this commentary was to illustrate how caregivers, a critical component of CYP treatment triad, can also engage in testimonial injustice towards CYP patients. Testimonial injustice occurs when one suffers a credibility deficit and that credibility deficit is based on prejudice.2 Harcourt expands Fricker’s account of testimonial injustice by (...) arguing that for CYPs, the credibility deficits attributed to them by clinicians, for example, may result from epistemic arrogance in that CYPs are viewed as having unreliable knowledge about their condition. Harcourt writes: ‘Being a CYP is treated as a heuristic for epistemic unreliability across a wide range of domains’, including clinical settings. Harcourt’s expansion of Fricker’s account thus includes epistemic arrogance as an alternative necessary condition, in addition to prejudice, to apply the concept of testimonial injustice. We think Harcourt’s argument can also be extended to caregivers, who are central to the CYP treatment triad. We illustrate how this may be the case by drawing from research we conducted to understand the perspectives of clinicians and prospective families, both caregivers and paediatric patients with obsessive–compulsive disorder about the possibility of …. (shrink)

ABSTRACTJudgments of emotional stimuli’s valence and arousal can differ based on the perceiver’s age. With most of the existing literature on age-related changes in such ratings based on perception...

Residents’ councils in Quebec’s residential and long-term care centres have the mandate to promote the improvement of living conditions for residents, to assess their level of satisfaction, and to defend their rights. Based on two studies on the autonomy of councils, we examined how committees can express themselves on topics other than those the management is already aware of, to reveal various previously unknown aspects of the services, and to voice unexpressed concerns. We are especially interested in what makes management (...) receptive, or not, to what the committee members say. The councils’ ability to express them selves is, in fact, inseparable from its capacity to listen to the management teams, and we seek to determine the conditions required to perform this dual capacity. (shrink)

Scholars have debated the role that altruistic considerations play—and should play—in recruitment and decision-making processes for clinical trials. Little empirical data are available to support their various perspectives. We analyzed 140 audiotaped pediatric informed consent sessions, of which 95 (68%) included at least one discussion of how participation in a cancer clinical trial might benefit: 1) the pursuit of scientific knowledge generally; 2) other children with cancer specifically; and 3) “the future” and other vaguely defined recipients. Clinicians initiated most (80%) (...) of these discussions of altruism. The enrollment rate of children in the clinical trial was high (83%) overall, but not higher among children whose parents were involved in an altruism-oriented discussion. These findings suggest that: (1) clinicians invoke a spectrum of altruistic considerations rather than a single monothematic notion of altruism, and (2) the effect of altruistic considerations on subsequent enrollment decisions is marginal. While further research on this topic is warranted, bioethical debate should strive to reflect the diversity of altruistic discourse in clinical research encounters and to place this discourse in the context of other, including nonaltruistic, considerations. (shrink)

Background: Treatment of psychotic disorders in pregnancy is often ethically and clinically challenging, especially when psychotic symptoms impair decision-making capacity. There are several competing ethical obligations to consider: the ethical obligation to maternal autonomy, the maternal and fetal beneficence-based obligations to treat peripartum psychosis, and the fetal beneficence-based obligation to minimize teratogenic exposure. Objective: This article outlines an ethical framework for clinical decision-making for the management of chronic psychosis in pregnancy, with an emphasis on special considerations in the previable and (...) periviable period. Case Presentation: A 31-year-old gravida 2, para 1 with intrauterine pregnancy at 12 weeks and 4 days gestation was brought to the emergency department by her husband seven months after delivering her first child, due to sudden onset of behavioral changes that included self-isolation, not eating, and not taking care of her child. Her past medical history included hypothyroidism and inflammatory bowel disease, but no prior psychiatric illness. After being admitted to the psychiatric hospital, she continued to have poor oral intake and weight loss despite initial inpatient treatment with antipsychotics, levothyroxine, and discontinuation of corticosteroids. Her pregnancy was also complicated by the diagnosis of multiple fetal anomalies at 20 weeks gestation, when the fetus was periviable. Conclusions: For previable or periviable pregnancies, the patient and/or surrogate should decide whether to pursue prenatal genetic screening and invasive diagnostic testing, as well as whether to continue or terminate the pregnancy. When the choice is made to continue the pregnancy, initiation of long-term psychiatric treatment (including medications with potential adverse fetal effects) should be based on shared decision-making between the physician and the patient and/or surrogate. Although some pharmacologic interventions may have potential adverse effects on the developing fetus, the use of psychotropic medications can be ethically justified, even if the patient herself does not have the capacity to consent and requires a surrogate, when the goal is to restore maternal autonomy and minimize the risks of maternal and fetal harm from untreated psychiatric illness. (shrink)

Le respect de la vie privée et de l’intimité est un droit reconnu aux usagers des services de santé et des services sociaux par différents codes d’éthique, par la Charte des droits et libertés de la personne du Québec et par la Loi sur les services de santé et les services sociaux. Pour autant, la signification que prend ce droit demeure incertaine. Il n’y a pas une signification, mais bien des significations. S’appuyant sur un important travail d’observation dans deux comités (...) d’éthique clinique situés dans des établissements de santé et de services sociaux, les auteurs présentent et analysent ici un certain nombre de situations litigieuses dans lesquelles une interprétation du droit à la vie privée et à l’intimité a été faite. Au terme de l’exercice, il ressort entre autres que, selon les situations analysées, les discussions qui se font dans les CÉC conduisent à des modalités différentes (« déplacement et hiérarchisation », « opposition et évitement », « ouverture et compromis », « élargissement et remise en question ») qui ont pour effet de changer le regard porté sur l’usager et plus spécifiquement de faire comprendre son point de vue. En outre, si le droit à la vie privée et à l’intimité contribue à modifier l’interprétation que l’on se fait d’une situation ou des usagers, il est lui-même objet d’interprétation. C’est la diversité de sens qu’il peut prendre qui lui préserve son pouvoir d’interroger. (shrink)

The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists....

Tribute to Jean-Yves Jaffray by the French Group of Decision Theory.

Autistic disorders are characterized by deficits in social interactions and communication, strong aversion or non-response to social stimuli. However, these children are often reported to develop strong bonds with companion animals. We hypothesized that children with autism would present different behavioural profiles when encountering an unfamiliar animal in a Strange Animal Situation close-to-life test. Twenty seven CAD were compared to 59 children with typical development. Our results. revealed similarities in the behaviour of both groups of children as well as patterns (...) specific to the CAD. Different profiles emerged depending on everyday living conditions. This study constitutes, to our knowledge, the first clear description of how children with autism react when encountering an unfamiliar animal and one of the first direct comparisons between CAD and CTD using a naturalistic but standardized setting. Keywords: autism; animal; profile; interaction; ethology. (shrink)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in the context (...) of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

Québec's complaint examination system has devoted considerable effort to supporting dissatisfied users who may wish to register complaints. It is open to question, however, whether this level of effort has, in fact, aided users in filing their complaints, and whether, once filed, the intake and processing of complaints has been rigorous and fair. Has the intake and handling of complaints at least improved? This is the question we shall attempt to answer here by presenting the results of our study concerning (...) the impact of the Complaint Assistance and Support Centers (CAAPs) on the intake of complaints. The results show that the Québec complaint examination system and its Complaint Assistance and Support Centers help make complaints more admissible and ensure that each complaint is examined. However, the system is also hindered by differences and conflicting interpretations among the various stakeholders regarding the legitimacy of complaints, respect for users’ rights, and the mission of the system. Although complaint examination systems seek to encourage users to express their points of view, users’ voices are still only partly audible. (shrink)

Biomedical Ontologies integrate diverse biomedical data and enable intelligent data-mining and help translate basic research into useful clinical knowledge. We present the RNA Ontology (RNAO), an o...

Between November 30th and December 2nd, 2015, the Jacques Loeb Centre for the History and Philosophy of the Life Sciences at Ben-Gurion University of the Negev in Beer Sheva held its Eighth International Workshop under the title “From Genome to Gene: Causality, Synthesis and Evolution”. Eric Davidson, the founder of the concept of developmental Gene Regulatory Networks, had regularly attended the previous meetings, and his participation in this one was expected, but he suddenly passed away 3 months before. In (...) this paper, we provide an introduction and overview on five papers that were presented at the workshop and examine the importance of genomes and gene regulatory networks in extant biology, developmental biology, evolutionary biology and medicine, as well as a collection of remembrances of Eric Davidson, of his personality as well as of his scientific contributions. Historical perspectives are provided, and the ethical issues raised by the new tools developed to modify the genome are also discussed. (shrink)

The conflicts of interest that may arise in relationships between academic researchers and industry continue to prompt controversy. The bulk of attention has focused on financial aspects of these relationships, but conflicts may also arise in the legal obligations that faculty acquire through consulting contracts. However, oversight of faculty members' consulting agreements is far less vigorous than for financial conflicts, creating the potential for faculty to knowingly or unwittingly contract away important rights and freedoms. Increased regulation could prevent this, but (...) it is unclear what forms of oversight universities view as feasible and effective. In this article, we report on a Delphi study to evaluate several approaches for oversight of consulting agreements by medical schools. The panel was comprised of 11 senior administrators with responsibility for oversight of faculty consulting relationships. We found broad agreement among panelists regarding the importance of institutional oversight to protect universities' interests. There was strong support for two specific approaches: providing educational resources to faculty and submitting consulting agreements for institutional review. Notwithstanding the complexities of asserting authority to regulate private consulting agreements between faculty members and companies, medical school administrators reached consensus that several approaches to improving institutional oversight are feasible and useful. (shrink)

Background: Notwithstanding near-universal agreement on the theoretical importance of truthfulness, empirical research has documented gaps between ethical norms and physician behaviors. Although prior research has explored situations in which physicians may not be truthful with patients, it has focused on contexts within specialty practice. In this article, we report on a qualitative study of truthfulness in primary care. Methods: We conducted a qualitative study during December 2014–March 2015 involving both focus groups and in-depth, semistructured interviews with 32 primary care physicians (...) from the Boston, MA, and Baltimore, MD, metro areas in three specialties: internal medicine, family practice, and pediatrics. Interviews and focus groups were led using a semistructured guide, which explored situations in which primary care physicians find it difficult to be honest with patients; factors shaping truthfulness; and rationales for truthful and untruthful communication. Results: While physicians described outright lying to patients as rare, other deviations from truthfulness were not uncommon, including slanting and deliberately withholding information. Physicians described a range of factors as influencing truthfulness, from patient-level characteristics such as educational background to societal considerations including avoiding unnecessary tests and procedures. Physicians described truthfulness as an ethical requirement, deviations from which required further justification. Perceived justifications included promoting patient well-being and avoiding harm. Conclusions: Our results suggest a potential need to augment opportunities for training in “everyday ethics” challenges, such as the appropriateness of deception in response to patient requests for inappropriate tests or pain medications. Furthermore, they indicate that, in various circumstances encountered in primary care, physicians perceive other moral duties as potentially in conflict with the duty of truthfulness. Further ethical analysis should focus on identifying when deviations from complete truthfulness do and do not serve patients' interests, to guide physicians in striking a reasonable balance among principles of medical ethics that may conflict with one another. (shrink)

Ce bref article relit le début de la Logique de la philosophie d´Eric Weil et le confronte à la pensée de Hegel. Ce sont ainsi les trois premières catégories de la Logique de la Philosophie qui sont mises en parallèle avec le début de la première partie de la «petite Logique» de Hegel, c´est-à-dire, avec la section Être de l´Encyclopédie des Sciences Philosophiques. Il est intéressant, en effet, de chercher à comprendre ce qui met en mouvement la pensée dialectique, (...) la Vérité chez Weil, l´Etre chez Hegel. La même question se posera dans l´analyse de la seconde catégorie de Weil, le non-sens, dont il s´agira d´interroger la parenté avec le «néant» (das Nichts) de Hegel. C´est alors que surgira le concept de «reprise», dont le contraste avec l´Aufhebung hégélienne apparaîtra de façon surprenante. La catégorie Le vrai et le faux per­mettra de mieux préciser le sens de la «reprise». (shrink)

The Britten–Davidson model of genetic regulation was well received by American molecular biologists and embryologists, but not by the members of the French School of molecular biology. In particular, François Jacob considered it too abstract and too removed from experiments. I re-examine the contrast between the Britten–Davidson model and the operon model by Jacob and Monod, the different scientific contexts in which they were produced and the different roles they played. I also describe my recent encounters with Eric Davidson, (...) and how I discovered the extraordinary continuity of his work on the development of the sea urchin, as well as his rich personality. (shrink)

The article Pragmatismand the Importance of Interdisciplinary Teams in Investigating Personality Changes Following DBS.

This study explores the association between different types of morally challenging interactions during military deployment and response strategies, as well as the mediating role of moral emotions. Interviews with Dutch servicemen who participated in military operations were content coded. We found a relationship between local-cultural and team-related interactions and moral justification; these effects were mediated by other-condemning emotions. Similarly, other-condemning emotions mediated the relationship between local-cultural interactions and relativism. This study points at the importance of other-condemning emotions in shaping military (...) reactions to frequently occurring morally challenging interactions. (shrink)

The planetary boundaries concept has profoundly changed the vocabulary and representation of global environmental issues. The article starts by highlighting the strengths and weaknesses of planetary boundaries from a social science perspective. It is argued that the growth imperative of capitalist economies, as well as other particular characteristics detailed below, are the main drivers of the ecological crisis and exacerbated trends already underway. Further, the planetary boundaries framework can support interpretations that do not solely emphasize technocratic operational approaches and costs, (...) but also assume that these alone can be the solution. (shrink)

Este artículo quiere mostrar hasta qué punto se pueden acercar los proyectos fenomenológicos de Jan Patočka y Michel Henry explorando su pretensión común al describir el aparecer como tal. Más allá de lo que nos aparece como un plano de convergencia entre ambos pensamientos, queremos también enfatizar los puntos de divergencia y las aporías distintas que ellos conllevan, ver cómo se podría empezar a superarlas e iniciar un posible diálogo entre ambos autores.