The Human Genome Project showed that there is signifcant genetic variation within the population. Current research is accumulating large databases that may reveal genetic variations associated with disease or health risks, even if not intended as part of the study design. These incidental fnd-ings create legal, ethical, and fnancial challenges for researchers. Current federal and international guidelines are not adequate. Plans for dealing with incidental fndings need to be established in the study design and reviewed and approved by the Institutional (...) Review Board. (shrink)

Medical practice is poised to incorporate genomescale testing into treatment decisions. However, broad genome testing in laboratories may lead to discoveries not anticipated, yet highly significant to the health of the patient. Understanding the complexity of our genome and its relationship to our health is an overwhelming task. Currently, much of the effort to unravel this complexity is in the realm of research. However, researchers are often neither qualified nor prepared to deal with incidental findings of genetic abnormalities that influence (...) health and disease. These incidental observations, referred to recently by Issac Kohane et al. as the “incidentalome,” may lead to complex legal, ethical, and financial problems that may seriously complicate the role of the research community in medical genomics. Currently, most genetics researchers, while aware of the potential for incidental findings, simply do not want to deal with them. (shrink)

An established ethical principle of biomedical research involving human subjects stipulates that risk to subjects should be proportionate to an experiment’s potential benefits. Sometimes this principle is imprecisely stated as a requirement that ‘risks and benefits’ be balanced. First, it is noted why this language is imprecise. Second, the persistence of such language is attributed to how it functions as a rhetorical trope. Finally, an argument is made that such a trope is infelicitous because it may not achieve its intended (...) persuasive purposes. More importantly, it should be avoided because it masks the important role that chance plays in clinical research. Risk is the possibility of harm. As a precondition of harm it is unintended and undesirable in projects of biomedical research. It requires ethical vigilance. As a vehicle of chance, however, it is both intended and desirable. It requires methodological appreciation. (shrink)

Inspired by Weber’s charismatic carrier groups, Eisenstadt coined the term institutional entrepreneur to capture the rare but epochal collective capable of reorienting a group’s value-orientations and transferring charisma, while making them an evolutionary force of structural and cultural change. As a corrective to Parsons’ abstract, ‘top-down’ theory of change, Eisenstadt’s theory provided historical context and agency to moments in which societies experienced qualitative transformation. The concept has become central to new institutionalism, neo-functionalism, and evolutionary-institutionalism. Drawing from the former two, a (...) more robust theory of institutional entrepreneurship from an evolutionary-institutionalist’s perspective is posited. In essence, entrepreneurs formulate institutional projects with dual logic: a collective side focused on innovation where efforts are directed towards organizational symbolic mechanisms of integration and a self-interested side directed towards resource independence, monopolization, mobility, and power-dependence. While outcomes vary based on numerous environmental factors, success leads to greater structural/symbolic independence and ability to reconfigure physical-temporal-social-symbolic space. (shrink)

My initial task in this essay is to identify precisely the original philosophical import of philosophical renections about religion. Next I outline their changing natures and interrelations in the works of exemplary figures from the history of Western religious thought. Finally I argue that the relative desuetude of the traditional forms of apology and speculalion is emblemalic of the present faring of philosophy as a form of cultural discourse.

Some philosophers argue that a commitment to religious pluralism precludes the affirmation and encouragement of religious conversions on the grounds that decisions to convert are rationally unwarranted and, thus, their encouragement is ethically suspect. I challenge this view; furthermore, I contend that a proper understanding of religious conversion from a Christian and pluralistic point of view requires instead the identification of pluralism’s multiple meanings, i.e., as a descriptive category, a philosophical position, and an ideological construct.

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)

ABSTRACTAttentional bias to uncertain threat is associated with anxiety disorders. Here we examine the extent to which emotional face distractors and individual differences in intolerance of uncertainty, impact saccades in two versions of the “follow a cross” task. In both versions of the follow the cross task, the probability of receiving an emotional face distractor was 66.7%. To increase perceived uncertainty regarding the location of the face distractors, in one of the tasks additional non-predictive cues were presented before the onset (...) of the face distractors and target. We did not find IU to impact saccades towards non-cued face distractors. However, we found IU, over Trait Anxiety, to impact saccades towards non-predictive cueing of face distractors. Under these conditions, IU individuals’ eyes were pulled towards angry face distractors and away from happy face distractors overall, and the speed of this deviation of the eyes was determined by the combination of the c... (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.

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)

My initial task in this essay is to identify precisely the original philosophical import of philosophical renections about religion. Next I outline their changing natures and interrelations in the works of exemplary figures from the history of Western religious thought. Finally I argue that the relative desuetude of the traditional forms of apology and speculalion is emblemalic of the present faring of philosophy as a form of cultural discourse.

Some philosophers argue that a commitment to religious pluralism precludes the affirmation and encouragement of religious conversions on the grounds that decisions to convert are rationally unwarranted and, thus, their encouragement is ethically suspect. I challenge this view; furthermore, I contend that a proper understanding of religious conversion from a Christian and pluralistic point of view requires instead the identification of pluralism’s multiple meanings, i.e., as a descriptive category, a philosophical position, and an ideological construct.

Research biobanks are heterogeneous and exist to manage diverse biosample types with the goal of facilitating and serving biomedical discovery. The perspectives of biobank managers are reviewed, and the perspectives of two biobank directors, one with experience in institutional biobanks and the other with national cooperative group banks, are presented. Most research biobanks are not designed, nor do they have the resources, to return research results and incidental findings to participants or their families.

The authors of this commentary concur with the viewpoint presented by Mareschal et al. (2007a; 2007b) concerning the relevance of neurological data when theorizing about cognitive development. However, we argue here that Mareschal et al. fail to consider adequately the relevance of reorganizational brain events occurring through adolescence and early adulthood, especially regarding the prefrontal cortex and the ontogeny of executive functioning. In addition, evidence from the lifespan neurodevelopmental literature indicates that increased activity of neural networks may signify less efficient (...) processing. This observation is of potential relevance when considering the neurological changes associated with cognitive development during childhood and adolescence. (shrink)

A balanced approach that considers human strengths and weaknesses will lead to a more flattering set of empirical findings, but will distract researchers from focusing on the mental processes that produce such findings and will diminish the practical implications of their work. Psychologists ought to be doing research that is theoretically informative and practically relevant, exactly as they are doing.

Anticipating the ethical impact of emerging technologies is an essential part of responsible innovation. One such emergent technology is the digital twin which we define here as a living replica of a physical system (human or non-human). A digital twin combines various emerging technologies such as AI, Internet of Things, big data and robotics, each component bringing its own socio-ethical issues to the resulting artefacts. The question thus arises which of these socio-ethical themes surface in the process and how they (...) are perceived by stakeholders in the field. In this report we present the results of a qualitative study into the socio-ethical benefits and socio-ethical risks of using digital twins in healthcare. Employing insights from ethics of technology and the Quadruple Helix theory of innovation, we conducted desk research of white literature and 23 interviews with representatives from the four helixes: industry, research, policy and civil society. The ethical scan revealed several important areas where the digital twin can produce socio-ethical value (e.g., prevention and treatment of disease, cost reduction, patient autonomy and freedom, equal treatment) but also several important areas of socio-ethical risks (e.g., privacy and property of data, disruption of existing societal structures, inequality and injustice). We conclude with a reflection on the employed analytical tool and suggestions for further research. (shrink)

This study, the third in a series of three, draws on a broader Norwegian research project exploring the phenomenon of support for young persons with mental health issues. The aim was to explore and explicate the sense of “nourishing communion”, as a somewhat neglected aspect of support. Fourteen Norwegian young adults, aged 18-25, were interviewed about their experiences of support. Data was analyzed using van Manen’s hermeneutic-phenomenological approach to open up possible meanings of how nourishing communion is concretely lived. Analysis (...) was supplemented by in-depth reflexive dialogues between the first and second author, which fostered a nourishing communion akin to the processes and dimensions of our phenomenon of interest. Findings highlight five intertwined existential themes: a) trusting the other to hold vulnerability safely; b) flourishing in mutual participation; c) acceptance in a felt togetherness; d) feeling found and received; and e) feeling an attuned resonance. The notion of “nourishing communion” as a significant but neglected element of support challenges current practice, suggesting the need for a different approach to collaboration with young persons and their networks. From the perspectives both of individual professional engagement and of policy making, there is a need for further exploration of how young persons might be supported to create and maintain a broader range of nourishing relationships. (shrink)