This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine elements (...) of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both “public” and “engagement.”. (shrink)

Julie Childers and Bob Arnold’s (2019) article, “The Inner Lives of Doctors: Physician Emotion in the Care of the Seriously Ill,” uses Kübler-Ross’s influential work on death and dying to remind us...

Bowman-Smart et al. (2023) argue for a framework to examine the ethical issues associated with genetic screening for non-medical traits in the context of noninvasive prenatal testing (NIPT). Such s...

Today’s medical training environment exposes medical trainees to many aspects of what has been called “the hidden curriculum.” In this article, we examine the relationship between two aspects of the hidden curriculum, the performance of emotional labor and the characterization of patients and proxies as “bad,” by analyzing clinical ethics discussions with resident trainees at an academic medical center. We argue that clinicians’ characterization of certain patients and proxies as “bad,” when they are not, can take an unnecessary toll on (...) trainees’ emotions. We conclude with a discussion of how training in ethics may help uncover and examine these aspects of the hidden curriculum. (shrink)

The current ethical norms of genomic biobanking creating and maintaining large repositories of human DNA and/or associated data for biomedical research have generated criticism from every angle, at both the practical and theoretical levels. The traditional research model has involved investigators seeking biospecimens for specific purposes that they can describe and disclose to prospective subjects, from whom they can then seek informed consent. In the case of many biobanks, however, the institution that collects and maintains the biospecimens may not itself (...) be directly involved in research, instead banking the biospecimens and associated data for other researchers. Moreover, the future uses of biospecimens may be unknown, if not unknowable, at the time of collection. Biobanking may thus stretch the meanings of inform and consent to their breaking point: if you cannot inform subjects about what their biospecimens will be used for, what can they consent to? Given that informed consent by individual subjects is the ethical gold standard, the seeming dilution of the concept in the context of biobanking is a profound problem. (shrink)

The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly (...) address the question with protocols dictating that researchers place research results directly into study participants’ existing medical records, without participant consent. Such privileging of researcher judgment over participant choice may be motivated by a desire to discharge a duty that researchers perceive themselves as owing to participants. However, the underlying ethical, professional, legal, and regulatory duties that would compel or justify this action have not been fully explored. (shrink)

The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly (...) address the question with protocols dictating that researchers place research results directly into study participants’ existing medical records, without participant consent. Such privileging of researcher judgment over participant choice may be motivated by a desire to discharge a duty that researchers perceive themselves as owing to participants. However, the underlying ethical, professional, legal, and regulatory duties that would compel or justify this action have not been fully explored. (shrink)

The COVID-19 pandemic has resulted in widespread disruption of the typical way of doing things. In nearly every industry, responses to the pandemic have brought about departures from standard opera...

Background: A growing literature has raised—skeptically—the question of whether cutting-edge scientific research can identify and address broader ethical and policy considerations in real time. In genomics, the question is: Can ELSI contribute to genomics in real time, or will it be relegated to its historical role of after-the-fact outsider critique? We address this question against the background of a genomic screening project where we participated as embedded, real-time ELSI researchers and observers, from its initial design through its conclusion.Methods: As part (...) of the ELSI study design, the project included an ongoing reflexive ethnography in which the authors studied the process of its design and implementation. The authors were true participant observers, serving as members of various task-oriented groups while recording meetings and other events for ongoing qualitative analysis. We also conducted and analyzed interviews of multiple participants at the conclusion of the project.Results: Our real-time ELSI initiative had a mixed record of successes and challenges. If we define success as ELSI researchers having had an opportunity to participate fully in the project and to make the ELSI perspective heard, then our assessment is largely positive. If, however, we define successes as instances where real-time ELSI contributions changed the direction of the genomic or public health aspects of the GeneScreen project or, after careful deliberation, confirmed the appropriateness of the status quo, then we can identify only a few examples. While we had a seat at the table, we were, for the most part, tolerated guests.Conclusions: We conclude that there are significant barriers to real-time ELSI influence. The difficulty does not reside in any intended exclusion of an ELSI perspective, but in factors endemic to genomic research, including knowledge disparities, epistemological biases, and the pressures of time and money. (shrink)

Biobanking can promote valuable health research that may lead to significant societal benefits. However, collecting, storing and sharing human samples and data for research purposes present numerous ethical challenges. These challenges are exacerbated when the biobanking efforts aim to facilitate research on public health emergencies and include the sharing of samples and data between low/middle-income countries (LMICs) and high-income countries (HICs). In this article, we explore ethical challenges for COVID-19 biobanking, offering examples from two past infectious disease outbreaks in LMICs (...) where biobanking activities contributed to the perpetuation of global inequities. We focus on how the ethical imperative to promote the common good during public health emergencies can conflict with protecting the interests of biobank participants. We discuss how conducting biobank research under a waiver of informed consent during public health emergencies is ethically permissible, provided guidance is in place to prevent biopiracy and exploitation of vulnerable communities. We also highlight the need for biobank collaborations between LMICs and HICs to promote capacity building and benefit sharing. Finally, we offer guidance to promote the ethical oversight of biobanks and biobank research during the COVID-19 pandemic or other future public health emergencies. (shrink)

At first approach the use of the word “superstition” is such that it is impossible to apply the term strictly in the human sciences. Its connotation, that is its content, is particularly subjective and negative. And its extension, that is its area of application, is indefinite and makes of it a concept that can refer to just about anything.

The general theme of this reflection on laughing is that the place of laughter in everyday life has been reduced a great deal in Western societies since the beginning of the century and that this fact could have major consequences for the mental equilibrium of individuals and for the future of our civilizations. Moreover, philosophy and human sciences seem to have a certain responsibility for this disenchantment of our contemporaries with laughing.

Out of what the West now terms contemporary art, some would construct the synthesis and final accomplishment of every civilization, of all the great forms of art that have followed one another, blending and overlapping ever since man has existed and began expressing himself, like a fugue with innumerable developments that always returns to focus on the same theme, headed in the same direction. This evolution, as strangely loaded with analogies as it is rigidly anachronous, has borne, followed and determined (...) without failing, the mutations in our image. Art of the West in particular, in all its principal incarnations from ancient mythologies all the way to Rodin, from the Romanesque pilgrimage down to Daumier and Picasso—moving through culminating points of extreme harmony or tension: Rembrandt, Goya, Soutine—is presented as the great figure of a God in human appearance. Around this figure has been formed an entire world in which the real has continually been re-invented as art renewed its statements of it. Did this God and this world lose soul and memory on the day when the photographer's lens, a disastrously incorruptible witness, indicated the limits of very strict anthropomorphism? (shrink)

Genomic biobanks present ethical challenges that are qualitatively unique and quantitatively unprecedented. Many critics have questioned whether the current system of informed consent can be meaningfully applied to genomic biobanking. Proposals for reform have come from many directions, but have tended to involve incremental change in current informed consent practice. This paper reports on our efforts to seek new ideas and approaches from those whom informed consent is designed to protect: research subjects. Our model emerged from semi-structured interviews with healthy (...) volunteers who had been recruited to join either of two biobanks , and whom we encouraged to explain their concerns and how they understood the relationship between specimen contributors and biobanks. These subjects spoke about their DNA and the information it contains in ways that were strikingly evocative of the legal concept of the trade secret. They then described the terms and conditions under which they might let others study their DNA, and there was a compelling analogy to the commonplace practice of trade secret licensing. We propose a novel biobanking model based on this trade secret concept, and argue that it would be a practical, legal, and ethical improvement on the status quo. (shrink)

The use of traditional ethical methodologies is inadequate in addressing a constructed maternal–fetal rights conflict in a multicultural obstetrical setting. The use of caring ethics and a relational approach is better suited to address multicultural conceptualizations of autonomy and moral distress. The way power differentials, authoritative knowledge, and informed consent are intertwined in this dilemma will be illuminated by contrasting traditional bioethics and a caring ethics approach. Cultural safety is suggested as a way to develop a relational ontology. Using caring (...) ethics and a relational approach can alleviate moral distress in health-care providers, while promoting collaboration and trust between providers and their patients and ultimately decreasing reproductive disparities. This article examines how a relational approach can be applied to a cross-cultural reproductive dilemma. (shrink)

This paper argues for a largely unnoted distinction between relational and modal components in the lexical semantics of verbs. Wehypothesize that many verbs encode two kinds of semantic information:a relationship among participants in a situation and a subset ofcircumstances or time indices at which this relationship isevaluated. The latter we term sublexical modality.We show that linking regularities between semantic arguments andsyntactic functions provide corroborating evidence in favor of thissemantic distinction, noting cases in which the semantic groundingof linking through participant-role properties (...) apparently fails. Thissemantic grounding can be preserved, however, once we abstractaway from sublexical modality in lexical semantic representations.Semantically-based linking constraints are insensitive to the sublexicalmodality component of lexical entries and depend only on informationin a predicator's situational core. (shrink)

Though antiretroviral therapy is the standard of care for people living with HIV, its treatment limitations, burdens, stigma and costs lead to continued interest in HIV cure research. Early-phase cure trials, particularly those that include analytic treatment interruption, involve uncertain and potentially high risk, with minimal chance of clinical benefit. Some question whether such trials should be offered, given the risk/benefit imbalance, and whether those who choose to participate are acting rationally. We address these questions through a longitudinal decision-making study (...) nested in a Thai acute HIV research cohort. In-depth interviews revealed central themes about decisions to join. Participants felt they possessed an important identity as members of the acute cohort, viewing their bodies as uniquely suited to both testing and potentially benefiting from HIV cure approaches. While acknowledging risks of ATI, most perceived they were given an opportunity to interrupt treatment, to test their own bodies and increase normalcy in a safe, highly monitored circumstance. They were motivated by potential benefits to themselves, the investigators and larger acute cohort, and others with HIV. They believed their own trial experiences and being able to give back to the community were sufficient to offset participation risks. These decisions were driven by the specific circumstances experienced by our participants. Judging risk/benefit ratios without appreciating these lived experiences can lead to false determinations of irrational decision- making. While this does not minimise vital oversight considerations about risk reduction and protection from harm, it argues for inclusion of a more participant-centered approach. (shrink)

Revisits, reassesses, and reclaims the legacy of May '68 in light of our present cultural and historical emergency.

How do we frame decisions to use-or not use-military force? Who should do the killing? Do we need new paradigms to guide the use of force? And what does "victory" mean in contemporary conflict? In many ways, these are timeless questions. But they should be asked again in light of changing circumstances in the twenty-first century. The post-Cold War, post-9/11 world is one of contested and fragmented sovereignty. Contested because the norm of territorial integrity has shed some of its absolute (...) nature. Fragmented because some states do not control all of their territory and cannot defeat violent groups operating within their borders. Humanitarian intervention, preventive war, and just war are all framing mechanisms aimed at convincing domestic and international audiences to go to war (or not), as well as to decide who is justified in legally and ethically killing. The international group of scholars assembled for this book critically examine these frameworks to ask if they are flawed, and if so, how they can be improved. Finally, the volume contemplates what all the killing and dying is for if victory may prove, ultimately, to be elusive. (shrink)

Revisits, reassesses, and reclaims the legacy of May '68 in light of our present cultural and historical emergency.

This text provides an account of dissonance theory and reduction. It studies the evolution of cognitive dissonance theory, providing a review and a new interpretation of Festinger's original theory - the "radical conception". The authors present research arising from this new interpretation, adding to Festinger's theory by emphasizing the importance of the status of behaviour. Their research and evidence is intended to strengthen and clarify Festinger's original and innovative arguments.

Parkinson's disease (PD) is generally sporadic but a number of genetic diseases have parkinsonism as a clinical feature. Two dominant genes, α‐synuclein (SNCA) and leucine‐rich repeat kinase 2 (LRRK2), are important for understanding inherited and sporadic PD. SNCA is a major component of pathologic inclusions termed Lewy bodies found in PD. LRRK2 is found in a significant proportion of PD cases. These two proteins may be linked as most LRRK2 PD cases have SNCA‐positive Lewy bodies. Mutations in both proteins are (...) associated with toxic effects in model systems although mechanisms are unclear. LRRK2 is an intracellular signaling protein possessing both GTPase and kinase activities that may contribute to pathogenicity. A third protein, tau, is implicated as a risk factor for PD. We discuss the potential relationship between these genes and suggest a model for PD pathogenesis where LRRK2 is upstream of pathogenic effects through SNCA, tau, or both proteins. (shrink)