Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

In ‘Reification and Assent in Research Involving Those Who Lack Capacity’, Smajdor argues that adults with impaired capacity to grant informed consent (AWIC) are often excluded from participating in biomedical research because they cannot provide informed consent, leading to decreased chances AWIC will benefit from such research. Smajdor uses Honneth’s concept of reification to propose that securing assent (rather than consent) in cases involving AWIC offers patients moral recognition that is not tied to their capacities. Assent provides this recognition by (...) including the patient in a shared moral sphere, highlighting her agency and worth without reducing her to her incapacity or a thing-to-be-managed. Assent also avoids grounding in, or a reliance on, the future development of autonomy (pp.5–6).1 Our recent research on patient and caregiver perspectives of potential paediatric deep brain stimulation (pDBS) for refractory obsessive–compulsive disorder (OCD) and dystonia demonstrates that paediatric neurosurgery patients desire the kind of recognition Smajdor associates with assent, and their caregivers largely agree.2 3 Since (generally) paediatric patients in the USA are unable to grant informed consent, their caregivers must provide it instead. This raises the question of how to properly integrate paediatric patients into the DBS decision-making process. One dimension along which this is evident is that …. (shrink)

Chapter 1 Introduction Jennifer Gunning and S0ren Holm Ethics as a discipline has begun to escape the theoretical domains of philosophy and to pervade many ...

Ontologies describe reality in specific domains in ways that can bridge various disciplines and languages. They allow easier access and integration of information that is collected by different groups. Ontologies are currently used in the biomedical sciences, geography, and law. A Biomedical Ethics Ontology would benefit members of ethics committees who deal with protocols and consent forms spanning numerous fields of inquiry. There already exists the Ontology for Biomedical Investigations (OBI); the proposed BMEO would interoperate with OBI, creating a powerful (...) information tool. We define a domain ontology and begin to construct a BMEO, focused on the process of evaluating human research protocols. Finally, we show how our BMEO can have practical applications for ethics committees. This paper describes ongoing research and a strategy for its broader continuation and cooperation. (shrink)

The ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients’ views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with adolescent patients with OCD and their parents/caregivers. Patients were asked about projected impacts (...) to PIA generally due to DBS. All patient respondents and half of caregivers reported that DBS would impact patient self-identity in significant ways. For example, many patients expressed how DBS could positively impact identity by allowing them to explore their identities free from OCD. Others voiced concerns that DBS-related resolution of OCD might negatively impact patient agency and authenticity. Half of patients expressed that DBS may positively facilitate social access through relieving symptoms, while half indicated that DBS could increase social stigma. These views give insights into how to approach decision-making and informed consent if DBS for OCD becomes available for adolescents. They also offer insights into adolescent experiences of disability identity and “normalcy” in the context of OCD. (shrink)

A global health archive consisting of podoconiosis tissue slides and blocks (which was collected and imported into the UK before the introduction of the Human Tissue Act), was donated to Brighton & Sussex Medical School in 2014. There is little guidance on the socioethical and legal issues surrounding the retrospective use of archived or ‘abandoned’ tissue samples, which poses a number of questions relating to the ethical standing of the archive. There is a great deal of interpretation in the guidelines (...) that are currently in existence; however, modern ethical principles cannot be applied as it is not feasible to either reconsent or retrospectively seek approval. Our research team believed that it was unethical to leave the archive in storage, as this option favours neither researcher nor subjects. Permission was obtained from the Human Tissue Authority and a local ethics board for the tissues to be utilized in on-going research on podoconiosis aetiology. There is a delicate balance between the benefits gained by society relating to the development and progress of scientific research and the risks to the donor regarding the reuse of their tissues. Clearer guidelines should be made available to ensure that researchers are able to reuse tissue archives in contemporary research. (shrink)

Background Deep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies have shown its efficacy in reducing symptom severity and improving quality of life. While similar deep brain stimulation treatment is available for pediatric patients with dystonia, it is not yet available for pediatric patients with obsessive-compulsive disorder, although soon could be. The prospect of growing indications for pediatric deep brain stimulation raises several ethical concerns relating (...) to bodily integrity, the ability to offer informed assent, and the role pediatric patients play in the decision-making process. Objective The aim of this study is to solicit and assess the views of stakeholders (children, parents, clinicians) on pediatric assent, autonomy, and bodily integrity in the context of potential pediatric deep brain stimulation for obsessive-compulsive disorder. Methods Semi-structured interviews were conducted with pediatric obsessive-compulsive disorder patients ( n = 21), caregivers of pediatric obsessive-compulsive disorder patients aged 14–18 ( n = 19), and clinicians with experience treating refractory obsessive-compulsive disorder ( n = 25). Interviews were transcribed and coded in MAXQDA 2018 and 2020 software and processed for thematic content analysis to isolate and compare specific themes. Results A majority of respondents (74%, 48/65) across all three stakeholder groups voiced that the decision-making process should be collaborative and involve everyone (clinicians: 84% or 21/25, caregivers 71% or 15/21, and patients 63% or 12/19). We identified a split between respondents’ views on who should have the final say in the event of disagreement (38% or 25/65 favored the patient versus 35% or 23/65 favoring caregivers). A split between respondents also emerged concerning the maturity relevant for deep brain stimulation decision-making, with 45% (29/65) favoring developmental maturity (age/physiological development) and 45% (29/65) favoring decisional maturity (capacity to understand and weigh information). A majority of clinicians indicated that they would not move forward with deep brain stimulation without securing patient assent (80% or 20/25), with some stating the only exception is if patient quality of life was very poor and/or they lacked insight. Both caregivers and patients expressed a significant respect for the patient's right to bodily integrity, with 67% of caregivers (14/21) and 68% of patients (13/19) justifying patient involvement in decision-making specifically with reference to infringements of bodily integrity. Conclusion Our findings demonstrate that despite broad agreement across stakeholders that the decision-making process for pediatric deep brain stimulation for obsessive-compulsive disorder should be collaborative and somehow involve pediatric patients, there is disagreement about what this process entails and what factors determine patient involvement in the process. However, there is agreement that children have a right to bodily and brain integrity, which should only be infringed upon in rare circumstances. (shrink)

We used a retrospective survey to model the patterns of appraisal, motivation, and coping that uniquely correspond with 12 positive emotions (affection/love, amusement, awe, challenge/det...

Critical discourse analysis is a useful and productive qualitative methodology but has been underutilized within nursing research. In order to redress this deficiency the research presented in this article represents an exploration of the way in which critical discourse analysis may be applied to the analysis of public debates around policy for nursing practice. In this article the author discusses the history of the application of critical discourse analysis and provides an example of its application to the debate around the (...) use of nurse practitioners within the Australian healthcare system. (shrink)

“Doomsday prepping” is a phenomenon which involves preparing for feared societal collapse by stockpiling resources and readying for self-sufficiency. While doomsday prepping has traditionally been reported in the context of extremists, during the COVID-19 pandemic, excessive stockpiling leading to supply shortages has been reported globally. It is unclear what psychological or demographic factors are associated with this stockpiling. This study investigated doomsday prepping beliefs and behaviors in relation to COVID-19 proximity, demographics, coping strategies, psychopathology, intolerance of uncertainty (IU), and personality (...) in 384 participants (249 female) in an online study. Participants completed a number of questionnaires including the Post-Apocalyptic and Doomsday Prepping Beliefs Scale and a scale designed for the current study to measure prepping in the context of COVID-19. These were analyzed using ANOVAs, correlational, and mediation analyses to examine relationships between psychometric variables and stockpiling. Prepping beliefs and behaviors were higher in males than females and positively associated with anxiety, obsessive-compulsive symptoms, IU, and traditional masculinity traits. Older age, male gender, obsessive-compulsive symptoms, and traditional masculinity predicted unique variance in prepping. The relationship between gender and stockpiling was mediated by social learning (witnessing other people panic buying) and the perceived threat of COVID-19 (doomsday interpretations) while proximity and personal vulnerability to COVID-19 were non-significant. Results indicate that panic buying was influenced more by witnessing others stockpiling, personality, and catastrophic thinking rather than by proximity to danger. Education could target these factors in ongoing waves of the pandemic or future catastrophes. (shrink)

While the Internet has emerged as a significant resource for women negotiating the questions and circumstances that arise during conception, pregnancy and childbirth, it remains unclear what role the Internet plays in challenging the current biomedical paradigm and empowering women to make meaningful choices. This article explores how women use the Internet to manage their pregnancies and mediate their doctor–patient relationships, particularly examining the role of social class and personal health history in shaping such Internet use. Drawing from in-depth interviews (...) with white middle-class mothers, the findings show that rather than using technology to resist the dominant biomedical paradigm, most women turned to online resources that affirmed mainstream medical authority and continued to rely on their doctors. By providing the means to confirm normalcy and take control in their reproductive experiences, the Internet enables socially privileged women to more fully perform the informed patient role in order to demonstrate their competence as mothers. (shrink)

An Archaeology of Disability is a research station designed for the Venice Biennale, Architettura 2021 by David Gissen, Jennifer Stager, and Mantha Zarmakoupi and exhibited later at La Gipsoteca di Arte Antica of Pisa in 2022, at the Canellopoulos Museum of Athens in 2023, and at the Archaeological Museum of Thessaloniki in 2024. The research station works with languages and forms used by contemporary disabled people to reproduce elements—a ramp, a seat, an art gallery—from the ancient Acropolis in Athens (...) that vanished long ago and that have little or no extant material forms. Among the many people who contributed to the research station are two performers, Christopher Tester and Pia Hargrove, who performed, respectively, the ekphrastic film and audio description Sēmata (Signs) (2021). The following dialogic essay draws on conversations with the curators and performers led by Brooke Holmes and Pasquale Toscano. This dialogic form surfaces some of the collaborative aspects of the research station to highlight the ways in which such collaboration brings different lenses to antiquity. (shrink)

The use of list-learning paradigms to explore false memory has revealed several critical findings about the contributions of similarity and relatedness in memory phenomena more broadly. Characterizing the nature of “similarity and relatedness” can inform researchers about factors contributing to memory distortions and about the underlying associative and semantic networks that support veridical memory. Similarity can be defined in terms of semantic properties (e.g., shared conceptual and taxonomic features), lexical/associative properties (e.g., shared connections in associative networks), or structural properties (e.g., (...) shared orthographic or phonological features). By manipulating the type of list and its relationship to a non-studied critical item, we review the effects of these types of similarity on veridical and false memory. All forms of similarity reviewed here result in reliable error rates and the effects on veridical memory are variable. The results across a variety of paradigms and tests provide partial support for a number of theoretical explanations of false memory phenomena, but none of the theories readily account for all results. (shrink)

The rapidly increasing wealth of genomic data has driven the development of tools to assist in the task of representing and processing information about genes, their products and their functions. One of the most important of these tools is the Gene Ontology (GO), which is being developed in tandem with work on a variety of bioinformatics databases. An examination of the structure of GO, however, reveals a number of problems, which we believe can be resolved by taking account of certain (...) organizing principles drawn from philosophical ontology. We shall explore the results of applying such principles to GO with a view to improving GO’s consistency and coherence and thus its future applicability in the automated processing of biological data. (shrink)

Cognitive Science, Volume 46, Issue 3, March 2022.

The modern slavery literature engages with history in an extremely limited fashion. Our paper demonstrates to the utility of historical research to modern slavery researchers by explaining the rise and fall of the ethics-driven market category of “free-grown sugar” in nineteenth-century Britain. In the first decades of the century, the market category of “free-grown sugar” enabled consumers who were opposed to slavery to pay a premium for a more ethical product. After circa 1840, this market category disappeared, even though considerable (...) quantities of slave-grown sugar continued to arrive into the UK. We explain the disappearance of the market category. Our paper contributes to the on-going debates about slavery in management by historicizing and thus problematizing the concept of “slavery”. The paper challenges those modern slavery scholars who argue that lack of consumer knowledge about product provenance is the main barrier to the elimination of slavery from today’s international supply chains. The historical research presented in this paper suggests that consumer indifference, rather than simply ignorance, may be the more fundamental problem. The paper challenges the optimistic historical metanarrative that pervades much of the research on ethical consumption. It highlights the fragility of ethics-driven market categories, offering lessons for researchers and practitioners seeking to tackle modern slavery. (shrink)

This article positions ‘safety’ and ‘risk’ as key public health problems in mental health. I demonstrate that discourse about safety occurs extensively in relation to mental health, but it does not occur in a way where the mental health system gets any safer for the key actors involved. Ongoing unproductive discourse occurs because the different actors involved are speaking at cross purposes and about different things against the background of a ‘public’ discourse focused on safety crises. I map the general (...) interests of the main set of actors to demonstrate the conflicted and complex nature of discourse around mental health safety. In response I outline a dialogical approach to safety and risk based on the work of Habermas and values of recovery. This is presented as a framework from which to assess whether discourse is occurring effectively to develop shared meanings. Shared understandings of safety will mean that the safety needs of relevant actors can be understood and negotiated rather than giving way to an actuarial process which does not take into consideration the context of a person’s life. (shrink)

Disturbances of consciousness, including fluctuations in attention and awareness, are a common and clinically important symptom in dementia with Lewy bodies. In the present study we investigate potential mechanisms of such disturbances of consciousness in a clinicopathological study evaluating specific components of the cholinergic system. [3H]Epibatidine binding to the high-affinity nicotinic receptor in the temporal cortex differentiated DLB cases with and without DOC, being 62–66% higher in those with DOC. The were no differences between DLB patients with or without DOC (...) in 125I-labeled α-bungaratoxin binding to the low-affinity nicotinic receptor, [3H]pirenzepine binding to the muscarinic M1 receptor, or in choline acetyltransferase activity. These findings provide support for the hypothesis that cholinergic activity is an important neural correlate if consciousness and suggest a mechanism of DOC in DLB involving alterations in the nicotinic receptor, composed of predominantly α4 and β2 subunits. (shrink)

We used a paper-based survey to explore dynamics of Local Food Networks for fish in the Icelandic Westfjords. Preference for local fish remains high, and fish consumption is largely embedded within a gift network, rather than typical commercial channels off ering costly, frozen, and non-local products. Individuals lacking personal connections to the fishing industry obtain fish from these commercial networks. LFNs for fish in rural Icelandic communities are therefore expressions of power dimensions that are symptomatic of the larger inequalities built (...) into the fisheries management system, designed for globalized food networks. The disconnect between large-scale production mechanisms and local consumption patterns highlights the lack of responsiveness of the fishing industry to local Icelandic consumers and demonstrates the impacts national political structures can have on LFNs. (shrink)

This article is a commentary on O’Donohue’s2019 37-point critique of the American Psychological Association Ethical Principles of Psychologists and Code of Conduct ([Ethics Code] 2017). In this brief paper, we respond to the article by addressing our most important disagreements with O’Donohue’s arguments as well as areas of agreement. While we disagree with many of O’Donohue’s points, we also view his critique as being important and timely given that the 2018 APA Ethics Task Force is currently exploring potential revisions to (...) the Code. (shrink)

In “Revive and Refuse: Capacity, Autonomy, and Refusal of Care After Opioid Overdose”, Marshall, Derse, Weiner, and Joseph contend that patients who may appear to satisfy the standard criteria for...

The University of Kentucky has required that all researchers and research-eligible individuals complete RCR training every 2 years to ensure there is at least a baseline of RCR training throughout the wider research community. The overall goal is to create a research climate that fosters RCR across the institution for approximately 14,400 researchers and research eligible faculty, staff, and trainees engaged in research or creative work. A systematic data strategy was developed and implemented to identify individuals required to complete the (...) RCR training and included real-time data tracking using data analytic tools and sophisticated data models. The RCR training consists of the completion of online asynchronous modules and an in-person RCR training event where case studies are discussed to apply the learning gained from the online modules and prepare participants to practice ethical decision-making in future real-world problem-solving. A train-the-trainer approach was implemented to conduct the in-person RCR training of all researchers and research eligible individuals. A library of interactive case scenarios was developed for the mandatory in-person RCR training applicable to various disciplines across the institution. A survey of participants on the RCR training provided empirical data from approximately 12% of participants. Over 72% of respondents indicated the training positively impacted their behavior. An initiative of this magnitude and reach is the broadest of its kind in the United States (US) and the article outlines the procedures and experiences in implementing the project. (shrink)

Controlled donation after circulatory determination of death (cDCDD) is an important strategy for increasing the pool of eligible organ donors.