This is a study involving three HIV clinics in the Canadian provinces of Newfoundland and Labrador, and Manitoba. We sought to identify ethical issues involving health care providers and clinic clients in these settings, and to gain an understanding of how different ethical issues are managed by these groups. We used an institutional ethnographic method to investigate ethical issues in HIV clinics. Our researcher conducted in-depth semi-structured interviews, compiled participant observation notes, and studied health records in order to document ethical (...) issues in the clinics, and to understand how health care providers and clinic clients manage and resolve these issues. We found that health care providers and clinic clients have developed work processes for managing ethical issues of various types: conflicts between client-autonomy and public health priorities, difficulties associated with the criminalization of nondisclosure of HIV positive status, challenges with non-adherence to HIV treatment, the protection of confidentiality, barriers to treatment access, and negative social determinants of health and well-being. Some ethical issues resulted from structural disadvantages experienced by clinic clients. The most striking findings in our study were the negative social determinants of health and well-being experienced by some clinic clients – such as experiences of violence and trauma, poverty, racism, colonization, homelessness, and other factors affecting well-being such as problematic substance use. These negative determinants were at the root of other ethical issues, and are themselves of ethical concern. (shrink)

mHealth refers to the rapidly evolving use of mobile devices for health care treatment purposes, particularly the use of apps and texting as adjuncts to psychotherapy. Although there is currently an extensive literature on issues related to telehealth, to date little guidance has been developed to help professionals function ethically in the rapidly emerging area of mHealth. This article identifies the major ethical considerations that need attention and proposes several recommendations to address mHealth use as an adjunct to psychotherapy, including (...) the pressing need for relevant American Psychological Association practice guidelines to assist mental health providers in the ethical implementation of mHealth. (shrink)

Poor ability to regulate one's own food intake based on hunger cues may encourage children to eat beyond satiety, leading to increased risk of diet-related diseases. Self-regulation has multiple forms, yet no one has directly measured the degree to which different domains of self-regulation predict overeating in young children. The present study investigated how three domains of self-regulation (i.e., appetitive self-regulation, inhibitory control, and attentional control) predicted eating in the absence of hunger (EAH) in a community sample of 47 preschool-aged (...) children (Mage = 4.93, SD = 0.86). Appetitive self-regulation, as measured using a delay of gratification task, was significantly and negatively associated with EAH 1 year later (p< 0.5). Measures of inhibitory and attentional control did not significantly predict EAH. These results suggest that food-related self-regulation may be a better predictor of overeating behaviors than general measures of self-regulation. (shrink)

This chapter discusses seven of nine and the doctor experience various ups and downs as they navigate the deepest reaches of social and emotional interactions. Conscious experiences have two basic components: the experience itself and the meaning you derive from it, what it means to you. Husserl used two Greek terms, noesis and noema, to explain these aspects. Noesis gives meaning to an experience, as opposed to simply dismissing everyday occurrence as just “things” that happen without any intention or influence. (...) Husserl goes as far as to say that the noesis becomes the “real content” of the experience. In contrast, the noema is the actual meaning of the experience: its point about something, so that the events that happen to us make sense to us in terms of generating personal significance. Husserl distinguishes between the content of an act, what makes an experience meaningful or intentional from its object. (shrink)

Previous discussions of the evolution of the self have diverged greatly in their estimates of the date at which the capacity for self-thought emerged, the factors that led self-reflection to evolve, and the nature of the evidence offered to support these disparate conclusions. Beginning with the assumption that human self-awareness involves a set of distinct cognitive abilities that evolved at different times to solve different adaptive problems, we trace the evolution of self-awareness from the common ancestor of humans and apes (...) to the beginnings of culture, drawing upon paleontological, anthropological, biological, and psychological evidence. These data converge to suggest that that modern self-thought appeared just prior to the Middle-Upper Paleolithic transition, approximately 60,000 years ago.Recto running head: Evolution of the Self. (shrink)

When ethical decisions have to be taken in critical, complex medical situations, they often involve decisions that set the course for or against life-sustaining treatments. Therefore the decisions have far-reaching consequences for the patients, their relatives, and often for the clinical staff. Although the rich psychology literature provides evidence that reasoning may be affected by undesired influences that may undermine the quality of the decision outcome, not much attention has been given to this phenomenon in health care or ethics consultation. (...) In this paper, we aim to contribute to the sensitization of the problem of systematic reasoning biases by showing how exemplary individual and group biases can affect the quality of decision-making on an individual and group level. We are addressing clinical ethicists as well as clinicians who guide complex decision-making processes of ethical significance. Knowledge regarding exemplary group psychological biases (e.g. conformity bias), and individual biases (e.g. stereotypes), will be taken from the disciplines of social psychology and cognitive decision science and considered in the field of ethical decision-making. Finally we discuss the influence of intuitive versus analytical (systematical) reasoning on the validity of ethical decision-making. (shrink)

Harrowing stories reported in the media describe Covid‐19 ravaging through families. This essay reports professional experiences of this phenomenon, family clustering, as encountered during the pandemic's spread across Southern California. We identify three ethical challenges following from it: Family clustering impedes shared decision‐making by reducing available surrogate decision‐makers for incapacitated patients, increases the emotional burdens of surrogate decision‐makers, and exacerbates health disparities for and the suffering of people of color at increased likelihood of experiencing family clustering. We propose that, in (...) response to these challenges, efforts in advance care planning be expanded, emotional support offered to surrogates and family members be increased, more robust state guidance be issued on ethical decision‐making for unrepresented patients, ethics consultation be increased in the setting of conflict following from family clustering dynamics, and health care professionals pay more attention to systemic and personal racial biases and inequities that affect patient care and the surrogate experience. (shrink)

Bidirectional deep brain stimulation (DBS) platforms have enabled a surge in hours of recordings in naturalistic environments, allowing further insight into neurological and psychiatric disease states. However, high amplitude, high frequency stimulation generates artifacts that contaminate neural signals and hinder our ability to interpret the data. This is especially true in psychiatric disorders, for which high amplitude stimulation is commonly applied to deep brain structures where the native neural activity is miniscule in comparison. Here, we characterized artifact sources in recordings (...) from a bidirectional DBS platform, the Medtronic Summit RC + S, with the goal of optimizing recording configurations to improve signal to noise ratio (SNR). Data were collected from three subjects in a clinical trial of DBS for obsessive-compulsive disorder. Stimulation was provided bilaterally to the ventral capsule/ventral striatum (VC/VS) using two independent implantable neurostimulators. We first manipulated DBS amplitude within safe limits (2–5.3 mA) to characterize the impact of stimulation artifacts on neural recordings. We found that high amplitude stimulation produces slew overflow, defined as exceeding the rate of change that the analog to digital converter can accurately measure. Overflow led to expanded spectral distortion of the stimulation artifact, with a six fold increase in the bandwidth of the 150.6 Hz stimulation artifact from 147–153 to 140–180 Hz. By increasing sense blank values during high amplitude stimulation, we reduced overflow by as much as 30% and improved artifact distortion, reducing the bandwidth from 140–180 Hz artifact to 147–153 Hz. We also identified artifacts that shifted in frequency through modulation of telemetry parameters. We found that telemetry ratio changes led to predictable shifts in the center-frequencies of the associated artifacts, allowing us to proactively shift the artifacts outside of our frequency range of interest. Overall, the artifact characterization methods and results described here enable increased data interpretability and unconstrained biomarker exploration using data collected from bidirectional DBS devices. (shrink)

We estimate that 208,000 deep brain stimulation (DBS) devices have been implanted to address neurological and neuropsychiatric disorders worldwide. DBS Think Tank presenters pooled data and determined that DBS expanded in its scope and has been applied to multiple brain disorders in an effort to modulate neural circuitry. The DBS Think Tank was founded in 2012 providing a space where clinicians, engineers, researchers from industry and academia discuss current and emerging DBS technologies and logistical and ethical issues facing the field. (...) The emphasis is on cutting edge research and collaboration aimed to advance the DBS field. The Eighth Annual DBS Think Tank was held virtually on September 1 and 2, 2020 (Zoom Video Communications) due to restrictions related to the COVID-19 pandemic. The meeting focused on advances in: (1) optogenetics as a tool for comprehending neurobiology of diseases and on optogenetically-inspired DBS, (2) cutting edge of emerging DBS technologies, (3) ethical issues affecting DBS research and access to care, (4) neuromodulatory approaches for depression, (5) advancing novel hardware, software and imaging methodologies, (6) use of neurophysiological signals in adaptive neurostimulation, and (7) use of more advanced technologies to improve DBS clinical outcomes. There were 178 attendees who participated in a DBS Think Tank survey, which revealed the expansion of DBS into several indications such as obesity, post-traumatic stress disorder, addiction and Alzheimer’s disease. This proceedings summarizes the advances discussed at the Eighth Annual DBS Think Tank. (shrink)

Recent advances in wireless data transmission technology have the potential to revolutionize clinical neuroscience. Today sensing-capable electrical stimulators, known as “bidirectional devices”, are used to acquire chronic brain activity from humans in natural environments. However, with wireless transmission come potential failures in data transmission, and not all available devices correctly account for missing data or provide precise timing for when data losses occur. Our inability to precisely reconstruct time-domain neural signals makes it difficult to apply subsequent neural signal processing techniques (...) and analyses. Here, our goal was to accurately reconstruct time-domain neural signals impacted by data loss during wireless transmission. Towards this end, we developed a method termed Periodic Estimation of Lost Packets. PELP leverages the highly periodic nature of stimulation artifacts to precisely determine when data losses occur. Using simulated stimulation waveforms added to human EEG data, we show that PELP is robust to a range of stimulation waveforms and noise characteristics. Then, we applied PELP to local field potential recordings collected using an implantable, bidirectional DBS platform operating at various telemetry bandwidths. By effectively accounting for the timing of missing data, PELP enables the analysis of neural time series data collected via wireless transmission—a prerequisite for better understanding the brain-behavior relationships underlying neurological and psychiatric disorders. (shrink)

Peer review is a widely accepted instrument for raising the quality of science. Peer review limits the enormous unstructured influx of information and the sheer amount of dubious data, which in its absence would plunge science into chaos. In particular, peer review offers the benefit of eliminating papers that suffer from poor craftsmanship or methodological shortcomings, especially in the experimental sciences. However, we believe that peer review is not always appropriate for the evaluation of controversial hypothetical science. We argue that (...) the process of peer review can be prone to bias towards ideas that affirm the prior convictions of reviewers and against innovation and radical new ideas. Innovative hypotheses are thus highly vulnerable to being “filtered out” or made to accord with conventional wisdom by the peer review process. Consequently, having introduced peer review, the Elsevier journal Medical Hypotheses may be unable to continue its tradition as a radical journal allowing discussion of improbable or unconventional ideas. Hence we conclude by asking the publisher to consider re-introducing the system of editorial review to Medical Hypotheses. (shrink)

Background Over the last decade, the return of results (ROR) in precision medicine research (PMR) has become increasingly routine. Calls for individual rights to research results have extended the “duty to report” from clinically useful genetic information to traits and ancestry results. ROR has thus been reframed as inherently beneficial to research participants, without a needed focus on who benefits and how. This paper addresses this gap, particularly in the context of PMR aimed at increasing participant diversity, by providing investigator (...) and researcher perspectives on and questions about the assumed value of ROR in PMR.Methods Semi-structured interviews with a purposive sample of investigators and researchers across federally funded PMR studies in three national consortia, as well as observations of study activities, focused on how PM researchers conceptualize diversity and implement inclusive practices across research stages, including navigating ROR.Results Interviewees (1) validated the value of ROR as a benefit of PMR, while others (2) questioned the benefit of clinically actionable results to individuals in the absence of sufficient resources for translating findings into health care for diverse and disadvantaged populations; (3) expressed uncertainties in applying the presumed value of ROR as a benefit for non-clinical results; and (4) and debated when the promise of the value of ROR may undermine trust in PMR, and divert efforts to return value beyond ROR.Conclusions Conceptualizations of diversity and inclusion among PM researchers and investigators raise unique ethical questions where unexamined assumptions of the value of ROR inform study recruitment efforts to enroll minoritized and under-represented populations. A lack of consideration for resources and infrastructure necessary to translate ROR into actionable information may hinder trustworthy community-research relationships. Thus, we argue for a more intentional interrogation of ROR practices as an offer of benefit and for whom. (shrink)

The purpose of this study was to empirically investigate the role of pluralistic ignorance in perceptions of unethical behavior. Buckley, Harvey, and Beu (2000) suggested that pluralistic ignorance plays a role such that individuals mistakenly believe that others are more unethical than they actually are. In two studies, we confirmed that pluralistic ignorance influences perceptions of ethics in a manner consistent with what Buckley et al. suggested. The implications of pluralistic ignorance in perceptions of ethics are discussed with suggestions for (...) how pluralistic ignorance might be reduced and how research in this area may be extended. (shrink)

The next steps in health reform, like all such efforts before it, will have to engage the issue of American health care federalism – the relationship between the federal and state governments in the realm of health law and policy. Since its enactment in 2010, the Patient Protection and Affordable Care Act has offered a robust example of modern federalism and revealed new complexities. This article recounts the findings of our five-year study of the federalist and nationalist features of ACA (...) implementation. Contrary to the claims of ACA opponents that the law marked a federal “takeover,” the ACA's governance structures have advanced rather than suppressed state power. But we also found that the advances in state power occurred seemingly independently of the statute's structural arrangements; that is, the ACA's nationalist and federalist features both enhanced state power over health policy. These findings raise questions about whether cherished American federalism values are unique to federalist structures; they also raise the question of what exactly health care federalism is for, and why we continue to design health policy with federalism front and center. It is not clear that enhanced state power has brought better health policy. If it has not, is federalism for its own sake worth the trade-off? (shrink)