Mister Rogers’ Neighborhood, which began as The Children’s Corner in 1953 and terminated in 2001, left its mark on America. The show’s message of kindness, simplicity, and individual uniqueness made Rogers a beloved personality, while also provoking some criticism because, by arguing that everyone was special without having to do anything to earn it, the show supposedly created an entitled generation. -/- In Mister Rogers and Philosophy, thirty philosophers give their very different takes on the Neighborhood phenomenon.

The primary purpose of Institutional Review Boards (IRBs) is to protect the rights and welfare of human research participants. Evaluation and measurement of how IRBs satisfy this purpose and other important goals are open questions that demand empirical research. Research on IRBs, and the Human Research Protection Programs (HRPPs) of which they are often a part, is necessary to inform evidence-based practices, policies, and approaches to quality improvement in human research protections. However, to date, HRPP and IRB engagement in empirical (...) research about their own activities and performance has been limited. To promote engagement of HRPPs and IRBs in self-reflective research on HRPP and IRB quality and effectiveness, barriers to their participation need to be addressed. These include: extensive workloads, limited information technology systems, and few universally accepted or consistently measured metrics for HRPP/irb quality and effectiveness. Additionally, institutional leaders may have concerns about confidentiality. Professional norms around the value of participating in this type of research are lacking. Lastly, obtaining external funding for research on IRBs and HRPPs is challenging. As a group of HRPP professionals and researchers actively involved in a research consortium focused on IRB quality and effectiveness, we identify potential levers for supporting and encouraging HRPP and IRB engagement in research on quality and effectiveness. We maintain that this research should be informed by the core principles of patient- and community-engaged research, in which members and key stakeholders of the community to be studied are included as key informants and members of the research team. This ensures that relevant questions are asked and that data are interpreted to produce meaningful recommendations. As such, we offer several ways to increase the participation of HRPP professionals in research as participants, as data sharers, and as investigators. (shrink)

Recognizing the importance of empirical research to support theoretical claims in contemporary psychology, the eight sections of the anthology address topics such as birth order, dream theory, subjective perception, and the psychosocial stages of adolescent and young adult development. Students also learn about the hierarchy of needs, positive psychology, client-centered therapy, introversion and extroversion, and self-efficacy. These topics are explored through research into the work of seminal thinkers in the field including Sigmund Freud, Alfred Adler, Abraham Maslow, Carl Rogers, Rollo (...) May, and Albert Bandura. (shrink)

The U.S. Civil Rights Movement (CRM) is a relevant K-6 topic to learn foundational concepts of social justice and participatory citizenship. Year after year, though, U.S. elementary school lessons typically focus on a Martin Luther King, Jr.-Rosa Parks centered narrative, adapted for character education. This qualitative inquiry invited 66 pre-service teachers to explore social justice education embedded at the core of existing K-6 historical topics. Examining pre-service teachers' knowledge, beliefs, and what and how they plan to teach their future students (...) revealed dated educational philosophies. They held limited content knowledge and sociopolitical critical thinking needed to teach the CRM's civic significance and were conflicted by wanting to both empower students and withhold information. This study describes actions designed to model replicable, justice-oriented lessons and help K-6 pre-service teachers reflect on pedagogical choices and ideologies they adopt. It also calls attention to the challenges of K-6 teacher education and school reform when teachers lack content knowledge and political/cultural awareness. (shrink)

In this paper, we examine the case of psychedelic medicine for Alzheimer’s disease and related dementias (AD/ADRD). These “mind-altering” drugs are not currently offered as treatments to persons with AD/ADRD, though there is growing interest in their use to treat underlying causes and associated psychiatric symptoms. We present a research agenda for examining the ethics of psychedelic medicine and research involving persons living with AD/ADRD, and offer preliminary analyses of six ethical issues: the impact of psychedelics on autonomy and consent; (...) the impact of “ego dissolution” on persons experiencing a pathology of self; how psychedelics might impact caregiving; the potential exploitation of patient desperation; institutional review boards’ orientation to psychedelic research; and methods to mitigate inequity. These ethical issues are magnified for AD/ADRD but bear broader relevance to psychedelic medicine and research in other clinical populations. (shrink)

The increasing complexity of human subjects research and its oversight has prompted researchers, as well as institutional review boards, to have a forum in which to discuss challenging or novel ethical issues not fully addressed by regulations. Research ethics consultation services provide such a forum. In this article, we rely on the experiences of a national Research Ethics Consultation Collaborative that collected more than 350 research ethics consultations in a repository and published 18 challenging cases with accompanying ethical commentaries to (...) highlight four contexts in which REC can be a valuable resource. REC assists: 1) investigators before and after the regulatory review; 2) investigators, IRBs, and other research administrators facing challenging and novel ethical issues; 3) IRBs and investigators with the increasing challenges of informed consent and risk/benefit analysis; and 4) in providing flexible and collaborative assistance to overcome study hurdles, mediate conflicts within a team, or directly engage with research participants. Institutions that have established, or plan to establish, REC services should work to raise the visibility of their service and engage in open communication with existing clinical ethics consult services as well as the IRB. While the IRB system remains the foundation for the ethical review of research, REC can be a valuable service for investigators, regulators, and research participants aligned with the goal of supporting ethical research. (shrink)

Allocating access to unapproved COVID-19 drugs available via Pre-Approval Access pathways or Emergency Use Authorization raises unique challenges at the intersection of clinical care and research....

In her recent paper ‘The Epistemology of Propaganda’ Rachel McKinnon discusses what she refers to as ‘TERF propaganda’. We take issue with three points in her paper. The first is her rejection of the claim that ‘TERF’ is a misogynistic slur. The second is the examples she presents as commitments of so-called ‘TERFs’, in order to establish that radical (and gender critical) feminists rely on a flawed ideology. The third is her claim that standpoint epistemology can be used to establish (...) that such feminists are wrong to worry about a threat of male violence in relation to trans women. In Section 1 we argue that ‘TERF’ is not a merely descriptive term; that to the extent that McKinnon offers considerations in support of the claim that ‘TERF’ is not a slur, these considerations fail; and that ‘TERF’ is a slur according to several prominent accounts in the contemporary literature. In Section 2, we argue that McKinnon misrepresents the position of gender critical feminists, and in doing so fails to establish the claim that the ideology behind these positions is flawed. In Section 3 we argue that McKinnon’s criticism of Stanley fails, and one implication of this is that those she characterizes as ‘positively privileged’ cannot rely on the standpoint-relative knowledge of those she characterizes as ‘negatively privileged’. We also emphasize in this section McKinnon’s failure to understand and account for multiple axes of oppression, of which the cis/trans axis is only one. (shrink)

Racism is a pervasive issue in patient care and a key social determinant of health. Clinical ethicists, like others involved in patient care, have a duty to recognize and respond to racism on both individual and systems-wide levels to improve patient care. Doing so can be challenging and, like other skills in ethics consultation, may benefit from specialized training, standardized tools and approaches, and practice. Learning from existing frameworks and tools, as well as building new ones, can help guide clinical (...) ethicists to systematically approach racism as it affects clinical cases. Here, we propose an expansion of the commonly used four-box method to clinical ethics consultation, where racism is considered as a potential factor in each of the four boxes. We apply this method to two clinical cases to highlight ethically salient information that might be missed using the standard formulation of the four boxes but captured with the expanded version. We argue that this expansion of an existing clinical ethics consultation tool is ethically justified insofar as it (a) creates a more just approach, (b) supports individual consultants and services, and (c) facilitates communication in contexts where racism impinges on effecting good patient care. (shrink)

Sixty‐one million Americans and approximately a billion people worldwide live with some form of disability that limits one or more major life activities. The field of precision medicine continues to grapple with how to best serve disability communities. In this paper, we suggest that precision medicine faces an ethical tension between its goal to treat or cure disabling conditions and views that consider disability as a marginalized identity. We appeal to the concepts of recognition justice and distributive justice to argue (...) that the ELSI community should take a more proactive role in promoting disability inclusion in precision medicine's practice and research. We also highlight two priorities for the ELSI community moving forward: facilitating greater collaboration between genetics and genomic professionals and disability communities and advocating for inclusive research design and disability accommodations in the research process. (shrink)

The rapid advances in genomics over the last decade have come to fruition amid intense public discussions of justice in medicine and health care. While much emphasis has been placed on increasing diversity in genomics research participation, an overly narrow focus on recruitment eschews recognition of the disparities in health care that will ultimately shape access to the benefits of genomic medicine. In this essay, we suggest that achieving a just genomics, both now and in the future, requires an explicit (...) ELSI of translation—normative and pragmatic scholarship that embraces the interconnectedness of research and clinical care and centers the obligations of researchers, institutions, and funders to mitigate inequities throughout the translational pipeline. We propose core principles to guide an ELSI of translation and to ensure that this work balances the value of the generalizable knowledge that genomics research generates and the value of the individuals and communities who make this research possible. (shrink)

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a given disease (...) can depend on the education, financial resources, and social capital available to the patients in a given community. In this article, we utilize three case examples to illustrate ethical challenges at the intersection of rare diseases, advocacy and justice, including how reliance on advocacy in rare disease may drive unintended consequences for equity. We conclude with a discussion of opportunities for diverse stakeholders to begin to address these challenges. (shrink)

The use of social media as a recruitment tool for research with humans is increasing, and likely to continue to grow. Despite this, to date there has been no specific regulatory guidance and there has been little in the bioethics literature to guide investigators and institutional review boards faced with navigating the ethical issues such use raises. We begin to fill this gap by first defending a nonexceptionalist methodology for assessing social media recruitment; second, examining respect for privacy and investigator (...) transparency as key norms governing social media recruitment; and, finally, analyzing three relatively novel aspects of social media recruitment: the ethical significance of compliance with website “terms of use”; the ethics of recruiting from the online networks of research participants; and the ethical implications of online communication from and between participants. Two checklists aimed at guiding investigators and IRBs through the ethical issues are included as appendices. (shrink)

Background Diversity in Institutional Review Board (IRB) membership is important for both intrinsic and instrumental reasons, including fairness, promoting trust, improving decision quality, and responding to systemic racism. Yet U.S. IRBs remain racially and ethnically homogeneous, even as gender diversity has improved. Little is known about IRB chairpersons’ perspectives on membership diversity and barriers to increasing it, as well as current institutional efforts to promote diversity, equity, and inclusion (DEI) within IRB membership.Methods We surveyed IRB chairpersons leading U.S. boards registered (...) with the Office for Human Research Protections. Here, we focus exclusively on responses from a subset of 388 chairpersons of IRBs at universities and academic medical centers (AMCs).Results Board chairs were predominantly white and evenly split between men and women. Only about half reported that their boards had at least one member who is Black or African American (51%), Asian (56%), or Hispanic (48%), with 85% of university/AMC boards comprised entirely (15%) or mostly (70%) of white members. Most IRB chairpersons (64%) reported satisfaction with the current diversity of their membership. Participants largely agreed that considering diversity in the selection of IRB members is important (91%), including to improve the quality of IRB deliberation (80%), with an emphasis on racial/ethnic (85%) and gender diversity (74%). Most participants (80%) reported some type of active DEI effort regarding board membership at their university/AMC and just over half (57%) expressed satisfaction with these efforts.Conclusions Our national survey found that although university/AMC IRB chairpersons report valuing diversity in board membership, it may be lacking in key areas. Going forward, it will be important to specify clear reasons for diversity in the IRB context, as well to establish targets for acceptable levels of board diversity and to match DEI efforts to those targets. (shrink)

We have synthesized a 582,970-base pair Mycoplasma genitalium genome. This synthetic genome, named M. genitalium JCVI-1.0, contains all the genes of wild-type M. genitalium G37 except MG408, which was disrupted by an antibiotic marker to block pathogenicity and to allow for selection. To identify the genome as synthetic, we inserted "watermarks" at intergenic sites known to tolerate transposon insertions. Overlapping "cassettes" of 5 to 7 kilobases (kb), assembled from chemically synthesized oligonucleotides, were joined by in vitro recombination to produce intermediate (...) assemblies of approximately 24 kb, 72 kb ("1/8 genome"), and 144 kb ("1/4 genome"), which were all cloned as bacterial artificial chromosomes in Escherichia coli. Most of these intermediate clones were sequenced, and clones of all four 1/4 genomes with the correct sequence were identified. The complete synthetic genome was assembled by transformation-associated recombination cloning in the yeast Saccharomyces cerevisiae, then isolated and sequenced. A clone with the correct sequence was identified. The methods described here will be generally useful for constructing large DNA molecules from chemically synthesized pieces and also from combinations of natural and synthetic DNA segments. 10.1126/science.1151721. (shrink)

Volume 20, Issue 9, September 2020, Page W1-W4.

The Idea of Disability in the Eighteenth Century is a wide-ranging collection of essays that explores philosophy, biography, and texts about and by disabled people living in the eighteenth century. The book, which introduces and affirms the notion that disability studies predates most United States and United Kingdom findings by more than a hundred years, will be of interest to philosophers, historians, sociologists, and literary scholars.

"Readers of Badiou will have to take account of this remarkable book. Phelps shows how Saint Paul is not marginal to Badiou's philosophy but lies at the heart of it." - Clayton Crockett, University of Central Arkansas "This book offers an important step forward in the theological reception of Alain Badiou's philosophy by exploring how Badiou, despite his radical atheism, nevertheless remains entagled in theology." - Frederiek Depoortere, Catholic University of Leuven The place of theology in Alain Badious writings is (...) key to understanding his thought. Badiou is one of the most influential theorists of recent times. Alain Badiou: Between Theology and Anti-theology provides one of the first comprehensive analyses of the relationship between Badiou's philosophy and theology. Examining the full range of Badiou's writings, this provocative study explores how Badiou's philosophy relies on theology even if he claims otherwise and actively attempts to work against theology. Despite the complex questions discussed ranging across ontology, the theory of truth and the subject, philosophy and its conditions, and anti-philosophy this book presents a clear and accessible overview of the theological, religious and biblical themes which animate Badiou's philosophy. (shrink)

Background. In some organisations, traumatic events via direct or indirect exposure are routine experiences. A NICE review (2005; updated in December 2018) of Post-Traumatic Stress Disorder (PTSD) management in primary and secondary care did not address early interventions for trauma in emergency response organisations. Aims. This scoping review was designed to identify previous research which evaluated the use of early interventions following exposure to primary or secondary trauma, to report on the effectiveness of early interventions models. Method. A scoping review (...) was conducted to examine early interventions for trauma with staff in roles potentially exposed to trauma including: emergency response, military and humanitarian aid. Relevant data was extracted from included studies and outcomes were assessed using meta-ethnography. Results. Fifty studies of mixed quality met the inclusion criteria for this review. Synthesis of study outcomes found that early interventions help emergency responders to manage post-incident trauma when they: are delivered in a manner that respects distinct organisational culture; are supported by organisations and senior management, and; harness existing social cohesion and peer support systems within teams. Conclusions. This review demonstrates that early interventions support emergency responders following exposure to trauma when: tailored to the needs of the population, are supported by the host organisation, and harness existing social cohesion and peer support processes within a team or unit. We identify a number of recommendations for the delivery and evaluation of early interventions for psychological trauma in emergency response organisations. (shrink)

In this paper we develop a new methodology for normative theorising, which we call Directed Reflective Equilibrium. Directed Reflective Equilibrium is based on a taxonomy that distinguishes between a number of different functions of hypothetical cases, including two dimensions that we call representation and elicitation. Like its predecessor, Directed Reflective Equilibrium accepts that neither intuitions nor basic principles are immune to revision and that our commitments on various levels of philosophical enquiry should be brought into equilibrium. However, it also offers (...) guidance about how different types of cases ought to be sequenced to achieve this result. We argue that this ‘directional’ approach improves, in various ways, upon the non-directional approach of traditional Reflective Equilibrium. (shrink)

What should we do if we cannot figure what morality requires of us? Holly M. Smith argues that the best moral codes solve this problem by offering two tiers, one of which tells us what makes acts right and wrong, and the other of which provides user-friendly decision guides. She opens a path towards resolving a deep problem of moral life.

In the mid-1990s, fairtrade-organic registration data showed that only 9 % of Oaxaca, Mexico’s organic coffee ‘farm operators’ were women; by 2013 the female farmer rate had increased to 42 %. Our research investigates the impact of this significant increase in women’s coffee association participation among 210 members of two coffee producer associations in Oaxaca, Mexico. We find that female coffee organization members report high levels of household decision-making power and they are more likely than their male counterparts to report (...) control over their coffee income. These significant advances in women’s agency within the household are offset by the fact that the women experience significant time poverty as they engage in coffee production while bearing a disproportionate share of domestic labor obligations. The women coffee producers view organizational labor as a third burden on their time, after their reproductive and productive labor. The time poverty they experience limits their ability to fully participate in coffee organizational governance and consequently there are few women leaders at all levels of the coffee producer businesses. This is problematic because it limits women’s ability to fully benefit from organizational membership: when women fully participate in governance they gain valuable business and leadership skills and producer associations with active female members may also be more likely to develop and maintain programs and policies that enhance gender equity. Our findings indicate that targeted agricultural development programs to improve gender equity among agricultural smallholders should involve creative ways to ease women’s labor burdens and reduce their time poverty in order to facilitate full organizational participation. The research findings fill a gap in existing studies of agricultural global value chains (GVCs) by demonstrating how the certified coffee GVC depends on women’s under and un-paid labor not only within the household but also within producer organizations. (shrink)

Previous research indicates that individuals with depressive disorders have aberrant resting state functional connectivity and may experience memory dysfunction. While resting state functional connectivity may be affected by experiences preceding the resting state scan, little is known about this relationship in individuals with DD. Our study examined this question in the context of object memory. 52 individuals with DD and 45 healthy controls completed clinical interviews, and a memory encoding task followed by a forced-choice recognition test. A 5-min resting state (...) fMRI scan was administered immediately after the forced-choice task. Resting state networks were identified using group Independent Component Analysis across all participants. A network modeling analysis conducted on 22 networks using FSLNets examined the interaction effect of diagnostic status and memory accuracy on the between-network connectivity. We found that this interaction significantly affected the relationship between the network comprised of the medial prefrontal cortex, posterior cingulate cortex, and hippocampal formation and the network comprised of the inferior temporal, parietal, and prefrontal cortices. A stronger positive correlation between these two networks was observed in individuals with DD who showed higher memory accuracy, while a stronger negative correlation was observed in individuals with DD who showed lower memory accuracy prior to resting state. No such effect was observed for HC. The former network cross-correlated with the default mode network, and the latter cross-correlated with the dorsal attention network. Considering that the DMN and DAN typically anticorrelate, we hypothesize that our findings indicate aberrant reactivation and consolidation processes that occur after the task is completed. Such aberrant processes may lead to continuous “replay” of previously learned, but currently irrelevant, information and underlie rumination in depression. (shrink)

The ICD-11 personality disorder model is the first fully dimensional assessment of personality pathology. It consists of a personality disorder dysfunction-severity dimension, which encompasses both self- and interpersonal dysfunction, and six optional qualifiers for five prominent personality traits—Negative Affectivity, Detachment, Dissociality, Disinhibition, and Anankastia —plus a borderline pattern that is defined by the criteria of DSM-IV borderline PD. This article reports on the development of a new self-report measure to assess self- and interpersonal dysfunction and the five trait qualifiers. It (...) is the first comprehensive measure of the ICD-11 PD model in that it is the only one to include both PD dysfunction-severity as well as trait scales and because it is based on the Clinical Description and Diagnostic Guidelines, which are more detailed than the “statistical” model description that is currently on the ICD-11 website. The authors wrote 992 items and then reduced the pool to 300 items by eliminating redundancy and selecting the consensus best few items for each subconstruct. Data were collected using an online sample of 383 Prolific workers. Using exploratory factor analysis, seven domain scales were developed, each of which contained two to four scales assessing components of the domain. These preliminary scales’ psychometrics were excellent, as were the domains’ and their components’ convergent and discriminant validity, with a few generally minor exceptions. Structural analyses at the component level revealed a three-factor structure consisting of two moderately correlated Internalizing factors, one centered on Self Dysfunction with two NA components and a DSN component and the other on Interpersonal Dysfunction with DET and ANK components; as well as an Externalizing factor with DSL and a DSN component that was uncorrelated with the other two factors. Two aspects of the results in particular are striking: ANK was not the opposite end of a DSN dimension, but rather contributed to an Internalizing Interpersonal Dysfunction dimension and DSN had both an Internalizing and an Externalizing component. Implications of the findings and study limitations are discussed. (shrink)

Participants in clinical research sometimes view participation as therapy or exaggerate potential benefits, especially in phase I or phase II trials. We conducted this study to discover what methods might improve cancer patients’ understanding of early-phase clinical trials. We randomly assigned 130 cancer patients from three U.S. medical centers who were considering enrollment in a phase I or phase II cancer trial to receive either a multimedia intervention or a National Cancer Institute pamphlet explaining the trial and its purpose. Intervention (...) participants were 32 times more likely to believe that the trial’s purpose was to examine safety and 60 % less likely to believe they would experience long-term benefit or cure. There was no difference in enrollment decision. However, while patients’ understanding of the trial’s purpose improved and expectations of long-term benefit diminished, half the respondents still believed they would experience long-term benefit or cure from participation. Therefore, we conclude that multimedia interventions such as this one may help oncologists to explain the risks and benefits of early-phase cancer trials in a way that patients can more easily understand, helping them to make more informed decisions about participation. But further research into other factors that influence patients’ beliefs about the outcome of enrollment is needed, both to modify the interventions and to determine how malleable patient beliefs are. (shrink)

BackgroundThe present study examined the efficacy of the Michigan Model of Infant Mental Health-Home Visiting infant mental health treatment to promote the socioemotional wellbeing of infants and young children. Science illuminates the role of parental “co-regulation” of infant emotion as a pathway to young children’s capacity for self-regulation. The synchrony of parent–infant interaction begins to shape the infant’s own nascent regulatory capacities. Parents with a history of childhood adversity, such as maltreatment or witnessing family violence, and who struggle with symptoms (...) of post-traumatic stress may have greater challenges in co-regulating their infant, thus increasing the risk of their children exhibiting social and emotional problems such as anxiety, aggression, and depression. Early intervention that targets the infant–parent relationship may help buffer the effect of parental risk on child outcomes.MethodsParticipants were 58 mother–infant/toddler dyads enrolled in a longitudinal randomized control trial testing the efficacy of the relationship-based IMH-HV treatment model. Families were eligible based on child age and endorsement of at least two of four socio-demographic factors commonly endorsed in community mental health settings: elevated depression symptoms, three or more Adverse Childhood Experiences parenting stress, and/or child behavior or development concerns. This study included dyads whose children were born at the time of study enrollment and completed 12-month post-baseline follow-up visits. Parents reported on their own history of ACEs and current posttraumatic stress disorder symptoms, as well as their toddler’s socioemotional development.ResultsMaternal ACEs predicted more toddler emotional problems through their effect on maternal PTSD symptoms. Parents who received IMH-HV treatment reported more positive toddler socioemotional wellbeing at follow-up relative to the control condition. The most positive socioemotional outcomes were for toddlers of mothers with low to moderate PTSD symptoms who received IMH-HV treatment.ConclusionResults indicate the efficacy of IMH-HV services in promoting more optimal child socioemotional wellbeing even when mothers reported mild to moderate PTSD symptoms. Results also highlight the need to assess parental trauma when infants and young children present with socioemotional difficulties. (shrink)

Can humanity abandon its meat-based diet, and is it willing to? This diet is unique in that it institutes an endlessly bloody relationship to animals. Highlighted time and again in analyses of the sacrificial system, the possibility of substituting a plant-based offering for one that requires killing, replacing the latter with the former and eventually achieving equivalence between the two, could prove unexpectedly fruitful in contemporary discussions of substitutes for meat. This is the guiding question and the answer, in the (...) form of a structuralist hypothesis, that this article proposes to clarify and develop. (shrink)

ABSTRACT:Clinical ethics consultants bear witness to the direct harms of intersecting axes of oppression—such as racism and classism—as they impinge on elucidating and resolving ethical dilemmas in health care. Health Care Ethics Consultation (HCEC) professional guidance supports recognizing and analyzing power dynamics and social-structural obstacles to good care. However, the most relied upon bioethical principles in clinical ethics have been criticized for insufficiency in this regard. While individual ethics consultants have found ways to expand their approaches, they do so in (...) an ad hoc way without frameworks to guide consistency. Motivated by the practical expertise of clinical ethicists, this essay offers a new framework to support openness to analyzing power imbalances and respecting marginalized voices and values. This framework is grounded in transformative justice, where the aim is to take responsibility for oppression by centering and responding to moral perspectives and value systems that are all too often silenced. (shrink)

Everyday tasks, such as getting groceries en route from work, involve two distinct components, one prospective (i.e., remembering the plan) and the other retrospective (i.e., remembering the grocery list). The present investigation examined the size of the age-related performance declines in these components, as well as the relationship between these components and age-related differences in processing resources. The subjects were 133 community-dwelling adults between 65 and 95 years of age. They completed a large battery of tests, including tests of pro- (...) and retrospective memory as well as tests for indexing processing resources. The results showed similar age-related declines in pro- and retrospective memory. There was only a weak relationship between pro- and retrospective memory, and the age-related decline in processing resources was related more strongly to retro- than prospective memory. (shrink)

This paper introduces the design principle of legibility as means to examine the epistemic and ethical conditions of sensing technologies. Emerging sensing technologies create new possibilities regarding what to measure, as well as how to analyze, interpret, and communicate said measurements. In doing so, they create ethical challenges for designers to navigate, specifically how the interpretation and communication of complex data affect moral values such as autonomy. Contemporary sensing technologies require layers of mediation and exposition to render what they sense (...) as intelligible and constructive to the end user, which is a value-laden design act. Legibility is positioned as both an evaluative lens and a design criterion, making it complimentary to existing frameworks such as value sensitive design. To concretize the notion of legibility, and understand how it could be utilized in both evaluative and anticipatory contexts, the case study of a vest embedded with sensors and an accompanying app for patients with chronic obstructive pulmonary disease is analyzed. (shrink)

Background Institutional review board (IRB) expertise is necessarily limited by maintaining a manageable board size. IRBs are therefore permitted by regulation to rely on outside experts for review. However, little is known about whether, when, why, and how IRBs use outside experts.Methods We conducted a national survey of U.S. IRBs to characterize utilization of outside experts. Our study uses a descriptive, cross-sectional design to understand how IRBs engage with such experts and to identify areas where outside expertise is most frequently (...) requested.Results The survey response rate was 18.4%, with 55.4% of respondents reporting their institution’s IRB uses outside experts. Nearly all respondents who reported using outside experts indicated they do so less than once a month, but occasionally each year (95%). The most common method of identifying an outside expert was securing a previously known subject matter expert (83.3%). Most frequently, respondents sought consultation for scientific expertise not held by current members (69.6%). Almost all respondents whose IRBs had used outside experts reported an overall positive impact on the IRB review process (91.5%).Conclusions Just over half of the IRBs in our sample report use of outside experts; among them, outside experts were described as helpful, but their use was infrequent overall. Many IRBs report not relying on outside experts at all. This raises important questions about what type of engagement with outside experts should be viewed as optimal to promote the highest quality review. For example, few respondents sought assistance from a Community Advisory Board, which could address expertise gaps in community perspectives. Further exploration is needed to understand how to optimize IRB use of outside experts, including how to recognize when expertise is lacking, what barriers IRBs face in using outside experts, and perspectives on how outside expert review impacts IRB decision-making and review quality. (shrink)

When new drugs are approved by the Food and Drug Administration, the default assumption is that they will be available by prescription only, safe for use exclusively under clinical supervision. The paternalism underlying this default must be interrogated in order to ensure appropriate respect for patient autonomy. Upon closer inspection, prescription requirements are justified when nonprescription status would risk harm to third parties and when a large segment of the population would struggle to exercise their autonomy in using a drug (...) safely and effectively on their own. Although these justifications can support prescription status for many drugs, we propose that reversing the FDA's current default to instead begin with a presumption in favor of over‐the‐counter status is the best way to avoid interference with valid claims of patient autonomy. Under this approach, a range of drug products could be considered for an OTC switch, including oral contraceptives, statins, and HIV‐prevention drugs. (shrink)