Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...) research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance. (shrink)

Richard Stanley Peters appreciates the centrality of concepts for everyday life, however, he fails to recognize their pedagogical dimension. He distinguishes concepts employed at the first-order (our ordinary language-use) from second-order conceptual clarification (conducted exclusively by academically trained philosophers). This distinction serves to elevate the discipline of philosophy at the expense of our ordinary language-use. I revisit this distinction and argue that our first-order use of concepts encompasses second-order concern. Individuals learn and teach concepts as they use them. Conceptual understanding (...) is an obligation that all individuals, and not just academically trained philosophers, must fulfil. I conclude that the role of philosophy in education is to provide a conversational context for the pedagogical dimension of concepts. I draw upon the philosophies of Cora Diamond, Stephen Mulhall, Iris Murdoch and Rush Rhees. (shrink)

In this paper, we explore the recent creation of “iBlastoids,” which are 3-D structures that resemble early human embryos prior to implantation which formed via self-organization of reprogrammed ad...

Contemporary educational theorists focus on the significance of Dewey’s conception of experience, learning-by-doing and collateral learning. In this essay, I reexamine the chapters of Dewey’s Democracy and Education, that pertain to thinking and highlight their relationship to Dewey’s How We Think: A Restatement of the Relation of Reflective Thinking in the Educative Process—another book written explicitly for teachers. In How We Think Dewey explains that nothing is more important in education than the formation of concepts. Concepts introduce permanency into an (...) otherwise impermanent world. He defines concepts as established meanings, or intellectual deposits used to found a better understanding of new experiences; they are what makes any experience educationally worthwhile. Dewey accuses traditional and progressive education of failing to appropriately form concepts in students. His position is that concepts are formed and transformed by experience, reflection and activity. He argues that the individual makes a personalized use of concepts for which he or she requires: continuity of experience, exposure to new or surprising possibilities, and sustained communication with others—all of which are discussed at length in Democracy & Education. I conclude with the practical recommendation that K-12 schools introduce philosophy into the curriculum. Philosophy not only invites students to engage their concepts in a reflective manner, but it also provides a valuable resource for that engagement. Most if not all of philosophy’s canonical texts are dedicated to analyzing such concepts as beauty, friendship, love and justice. The introduction of philosophy in K-12 education would, I suggest, offer a correction to both traditional and progressive education. (shrink)

It is twelve years since the article you are about to read was published. During that time, the philosophy in schools movement has expanded and diversified in response to curriculum developments, teaching guides, web-based resources, dissertations, empirical research and theoretical scholarship. Philosophy and philosophy of education journals regularly publish articles and special issues on pre-college philosophy. There are more opportunities for undergraduate and graduate philosophy students to practice and research philosophy for/with children in schools. The Ontario Philosophy Teachers Association reports (...) that in English-speaking Canada there are over 28,000 senior high school students studying philosophy in over 440 schools, and philosophy is now a Teachable Qualification. In the USA, the Philosophy Learning and Teaching Organization was founded in 2009 to create a network of pre-college philosophy teachers. With the loss of its founders—Matthew Lipman, Ann Margaret Sharp and Gareth Matthews —the Institute for the Advancement of Philosophy for Children is developing a digital archive in P4C. My original article was inspired by the design and pilot of a new philosophy elective for the Victorian Certificate of Education. This initiative garnered considerable interest from the P4C community because many believed that the decision to offer a VCE philosophy elective reflected the effectiveness and popularity of P4C in elementary schools, and the new philosophy elective would establish P4C as an essential prerequisite for the study of philosophy in senior secondary school and at university. In my view, enthusiasts overlooked an important difference in the conception of philosophy informing the new philosophy elective: it introduced students to the theoretical or academic discipline of philosophy, whereas P4C conceived of philosophy as a wisdom tradition—otherwise known as the art of living. (shrink)

This chapter contains sections titled: Introduction R. S. Peters and Analytic Philosophy of Education Revisiting First‐Order Ordinary Language‐Use Conclusion Notes References.

Parents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is “incompatible with life” even though some children with the condition live for several years. This paper considers parents’ response to current medical discourse concerning trisomy 18 by examining blogs written by the parents of those diagnosed. Using interpretive humanistic reading and foregrounding (...) Cathryn Molloy’s recuperative ethos theory, we find that parents demonstrate recuperative ethos in response to physicians’ descriptions of trisomy 18, particularly in rhetoric addressing survival, medicalized language, and religious and/or spiritual rhetoric. We argue that, by using language such as “incompatible with life,” physicians distance themselves from families, creating not care, but the very gulf that requires recuperation. We conclude that medical professionals would do well to engage with the trisomy 18 community—including learning from blogs and online forums— employ palliative care practices, and seek more accurate, descriptive language that is compatible with care. (shrink)

Do the humanities have a future? In the face of an increased emphasis on the so-called practical applicability of education, some educators worry that the presence of humanistic study in schools and universities is gravely threatened. In the short-term, scholars have rallied to defend the humanities by demonstrating how they do, in fact, advance our practical interests. Martha Nussbaum, for example, argues that the humanities uniquely support democratic citizenship by cultivating critical thinking and narrative imagination — two skills needed for (...) the development of sympathetic and autonomous judgment. Defending the humanities in this manner, however, puts practitioners of the humanities in an impossible position. In this essay, Megan Laverty explains that while arguments such as Nussbaum's, which defend the instrumental value of the humanities, are persuasive and strategic, their use is double-edged. They belie the fact that the humanities are valuable for their own sake. Such arguments imply that the humanities derive their value from their ability to provide extrinsic benefits such as critical thinking and narrative imagination. Moreover, they can prevent individuals from discovering that the value of the humanities is revealed over time and from the inside out. In fact, having to answer the question of why the humanities matter puts us in an impossible position precisely because humanistic study is what Laverty describes, drawing upon the work of Talbot Brewer and R. F. Holland, as a form of dialectical activity: one in which the activity's constitutive ideals and internal goods are progressively clarified by means of the individual's ongoing engagement in the activity itself. Having redescribed the humanities as intrinsically valuable, Laverty goes on to distinguish humanistic study from other forms of dialectical activity, arguing that the humanities call upon students to imagine alternative linguistic and conceptual possibilities — thereby connecting us with others. It is in the pursuit of this question about the nature of our humanity — not its answer, but the question itself — that the meaning of humanistic study continues, indefinitely, to unfold. (shrink)

Throughout history, philosophers have reflected on educational questions. Some of their ideas emerged in defense of, or opposition to, skepticism about the possibility of formal teaching and learning. These philosophers include Plato, Augustine, St Thomas Aquinas, Søren Kierkegaard, Martin Heidegger, and Ludwig Wittgenstein. Together, they comprise a tradition that establishes the impossibility of instruction and the imperative to undertake it. The value of this tradition for contemporary education is that it redirects attention away from performance assessments and learning outcomes to (...) the ethical, aesthetic, and metaphysical dimensions of schooling. I argue that philosophers of education are uniquely responsible for teaching this tradition so that instruction might be undertaken in the right spirit. To this end, my essay is divided into three parts. In the first part, I explain why instructional skepticism has not been prominent in philosophy of education. I follow up, in the second part, by clarifying my choice of the term ‘instruction.’ In the third part, I sketch the instructional philosophies that ‘book-end’ this tradition: those of Plato and Wittgenstein. (shrink)

In this essay Megan J. Laverty argues that Jean-Jacques Rousseau's conception of humane communication and his proposal for teaching it have implications for our understanding of the role of listening in education. She develops this argument through a close reading of Rousseau's most substantial work on education, Emile: Or, On Education. Laverty elucidates Rousseau's philosophy of communication, beginning with his taxonomy of the three voices—articulate, melodic, and accentuated—illustrating the ways in which they both enhance and obfuscate understanding. Next, Laverty (...) provides an account of Rousseau's philosophical psychology, with specific reference to amour-propre and amour de soi. Listening plays a central role in Rousseau's philosophy of communication, Laverty maintains, because it is in the act of listening that humans fulfill, or fail to fulfill, the imperative that we seek to understand others. (shrink)

In “Developing a Reflexive, Anticipatory, and Deliberative Approach to Unanticipated Discoveries: Ethical Lessons from iBlastoids,” we proposed a RAD approach to meet the challenging issues...

The perceived importance of a global experience in higher education is hard to underestimate. University presidents are known to boast of their “percentage,” or the proportion of undergraduates who study abroad. At least part of the rationale is a cosmopolitan one: an essential part of being acknowledged as educated derives in part from an appreciation of different cultures and development of worldliness. The expectation is that a global experience will stand out as an enduring memorial of an encounter with others. (...) These experiences are edified in resumes and narrated with veneration, further illuminating their cultural importance as coming-of-age rituals, particularly among a striding upper middle class... (shrink)

The reconstruction of philosophy, of education, and of social ideals and methods thus go hand in hand.In society today, we are inundated with reports on climate change, nuclear accidents, sectarian violence, terrorism, school shootings, police brutality, shrill mainstream politics, dire poverty, civil wars, and migration crises. As we observe their proliferation and escalation, it can feel as if we lack not only solutions to these social ills, but, even more fundamentally, ways to communicate about and make sense of their conditions (...) and consequences. Unfortunately, our failure to parse these events will not make them go away. To the contrary, their full impact will be endured for generations to come. As with other... (shrink)

BackgroundMulti-centre studies generally cost more than single-centre studies because of larger sample sizes and the need for multiple ethical approvals. Multi-centre studies include clinical trials, clinical quality registries, observational studies and implementation studies. We examined the costs of two large Australian multi-centre studies in obtaining ethical and site-specific approvals.MethodsWe collected data on staff time spent on approvals and expressed the overall cost as a percent of the total budget.ResultsThe total costs of gaining approval were 38 % of the budget for (...) a study of 50 centres (mean cost AUD $6960 per site) and 2 % for a study of 11 centres (mean cost AUD $2300 per site). Seventy-five and 90 % of time was spent on repeated tasks, respectively, and many time-consuming tasks, such as reformatting documents, did nothing to improve the study design or participant safety.ConclusionsImprovements have been made to the ethical approval application system, but more gains could be made without increasing risks of harm to research participants. We propose that ethical review bodies and individual sites publish statistics on how long they take to process approvals which could then be nationally benchmarked. (shrink)

The functional basis of disgust in disease avoidance is widely accepted; however, there is disagreement over what disgust is. This is a significant problem, as basic questions about disgust require...

A key feature of unregulated mHealth research is the diversity of participants in this space. Applying an approach drawn from user experience design, we describe a set of archetypal unregulated mHealth researcher “personas,” which range from individuals who seek empowerment or have philanthropic objectives to those who are primarily motivated by financial gain or have misanthropic objectives. These descriptions are useful for evaluating policies applicable to mHealth to understand how they will impact various stakeholders.

Dynamic Consent is both a model and a specific web-based tool that enables clear, granular communication and recording of participant consent choices over time. The DC model enables individuals to know and to decide how personal research information is being used and provides a way in which to exercise legal rights provided in privacy and data protection law. The DC tool is flexible and responsive, enabling legal and ethical requirements in research data sharing to be met and for online health (...) information to be maintained. DC has been used in rare diseases and genomics, to enable people to control and express their preferences regarding their own data. However, DC has never been explored in relationship to historical collections of bioscientific and genetic heritage or to contexts involving Aboriginal and Torres Strait Islander people.In response to the growing interest by First Peoples throughout Australia in genetic and genomic research, and the increasing number of invitations from researchers to participate in community health and wellbeing projects, this article examines the legal and ethical attributes and challenges of DC in these contexts. It also explores opportunities for including First Peoples' cultural perspectives, governance, and leadership as a method for defining DC on cultural terms that engage best practice research and data analysis as well as respect for meaningful and longitudinal individual and family participation. (shrink)

Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during (...) this consent process? 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region. We used descriptive statistics to determine the proportion of participants who consented to cell line creation and immortalization. Logistic regression methods were used to examine the predictors of consent. Reflections from study recruiters were elicited and discussed to identify key questions raised by participants about consent. Approximately 40% of participants consented to cell line storage. The recruiter who sought consent was a strong predictor of participant’s consent. Participants recruited from the South African Eastern Cape, and older participants, were more likely to consent; both these groups were more likely to hold traditional Xhosa values. Neither illness nor education were significant predictors of consent. Key questions raised by participants included two broad themes: clarification of what cell immortalisation means, and issues around individual and community benefit. These findings provide guidance on the proportion of participants likely to consent to cell line immortalisation in genomics research in Africa, and reinforce the important and influential role that study recruiters play during seeking of this consent. Our results reinforce the cultural and contextual factors underpinning consent choices, particularly around sharing and reciprocity. Finally, these results provide support for the growing literature challenging the stigmatizing perception that people with severe mental illness are overly vulnerable as a target group for heath research and specifically genomics studies. (shrink)

BackgroundCommunity engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community from research-related risks, (...) as well as intrinsic goals such as promoting the respect of participants and their community. However, successful community engagement depends on the degree to which CABs legitimately represent and engage with communities targeted for research. Currently, there is little literature describing the use of CABs in genomics research taking place in developing countries, and even less in the field of genomics research relating to mental illness. The aim of this article is to describe and consider the contributions made by a researcher-driven, population-specific CAB in a genomics of schizophrenia research project taking place in South Africa, from the perspective of the research team.DiscussionFour broad discussion topics emerged during the CAB meetings namely: 1) informed consent procedures, 2) recruitment strategies, 3) patient illness beliefs and stigma experiences, and 4) specific ethical concerns relating to the project. The authors consider these discussions in terms of their contributions to instrumental and intrinsic goals of community engagement.SummaryThe CAB gave valuable input on the consent processes and materials, recruitment strategies and suggested ways of minimizing the potential for stigma and discrimination. All of these contributions were of an instrumental nature, and helped improve the way in which the research took place. In addition, and perhaps more importantly, the CAB made a unique and important contribution relating to intrinsic functions such as promoting the respect and dignity of research participants and their community. This was particularly evident in ensuring sensitivity and respect of the community’s traditional beliefs about schizophrenia and its treatment, and in this way promoting a respectful relationship between the research team and the participants. (shrink)

Cancer cells seem to exploit mechanisms that evolve as part of physiological tolerance, which is a complementary and often beneficial form of defense. The study of physiological systems of tolerance can therefore provide insights into the development of a state of host tolerance of cancer, and how to break it. Analysis of these models has the potential to improve our understanding of existing immunological therapeutic targets, and help to identify future targets and rational therapeutic combinations. The treatment of cancer with (...) immune checkpoint inhibitors aims to reverse the progression to tolerance of cancer, and achieve an immunogenic, rather than tolerogenic, homeostasis. Broadening the efficacy and durability of checkpoint inhibitors focuses on reversing tolerance and stimulating immunogenicity in the cancer, host, and environment. Two examples of important physiological states of tolerance that may inform tolerance of cancer are microbial infection and placental reproduction. These states of tolerance result from bilateral shaping of host and non‐self, akin to immunoediting in cancer, and offer reliable models to study the immune tolerance paradigm. (shrink)

SUMMARYContemporary scholars seeking to advance the study of political phenomena identify their inquiry as a ‘science' that attains success through rigorous method. Thus the ‘methodological anarchism' of Paul Feyerabend's philosophy of science might seem an inauspicious place to find a fruitful disciplinary vision. Nonetheless, it echoes a longstanding conception of the ‘science' of politics articulated by Niccolò Machiavelli. Looking to Feyerabend, we propose to surmount the impasse between Machiavelli's account of politics and the demands of modern science and recover his (...) contribution to the scientific study of politics. In doing so, Machiavelli illustrates the potential of a Feyerabendian political science. (shrink)

Incapacitated adults with a legally appointed guardian or conservator may be recruited for or involved with medical, behavioral, or social science research. Much of the research in which such persons participate is aimed at evaluating medical interventions for them, or contributing to general knowledge about disorders from which they may suffer. In this paper we will consider how the appointment of guardians for patients with disorders of consciousness —severe brain injuries that affect a patient’s level of arousal and ability to (...) interact —impacts such patients’ access to research.Such persons may be under guardianship because they have lost decisional capacity (i.e., those in a coma or... (shrink)

Ethics courses are most commonly evaluated using reaction measures. However, little is known about the specific types of reaction data being collected and how these reaction data relate to improvements in trainee performance. Using a sample of 381 ethics training sessions, major reaction data categories were identified. Content and course satisfaction were the most frequently collected types of reaction criteria. Furthermore, content relevance and course satisfaction showed strong, positive relationships with performance criteria, whereas content satisfaction demonstrated a moderate, negative relationship. (...) These results and future directions for ethics training evaluation are discussed. (shrink)

As clinical trials end, little is understood about how participants exiting from clinical trials approach decisions related to the removal or post-trial use of investigational brain implants, such as deep brain stimulation (DBS) devices. This empirical bioethics study examines how research participants experience the process of exit from research at the end of clinical trials of implanted neural devices. Using a modified grounded theory study design, we conducted semi-structured, in-depth interviews with 16 former research participants from clinical trials of DBS (...) and responsive neurostimulation (RNS). Open-ended questions elicited motivations for joining the trial, understanding of study procedures at the time of initial informed consent, the process of exiting from research, and decisions about device removal or post-trial device use. Thematic analysis identified categories related to: limited preparedness for the end of research participation, straightforwardness of decisions to explant or keep the device, reconciling with the end of research participation, reconciling post-trial expectations, and achieving a sense of closure after exit from research. A preliminary theoretical model describes contextual factors influencing the process and experience of exit from research. Experiences of clinical trial participants should guide research practices to enhance the ethical design and conduct of clinical trials in DBS and other brain devices. (shrink)

Rising energy costs, increasing herd sizes, and other structural changes affecting the New York dairy industry may make farmers receptive to new energy production technologies. Anaerobic digestion represents a possible benefit to farmers by reducing odor while producing methane for electricity. However, current digester designs are for herd sizes of 300 or more cows, with significant economies of scale, so smaller operators may have little interest in the technology. Moreover, without a favorable policy environment and reliable grant programs, the initial (...) investments required for digester installation might deter operators. One solution to these issues may be community digesters, which are centrally located facilities that accept manure from multiple farms. Data from a survey of New York dairy farmers were used to assess farmers’ interest in community digesters. In general, interest was associated with power generation outcomes and reservations about organic farming practices; advocates might encourage their use among smaller conventional farm operators looking for new sources of profit and diversification. (shrink)

The Theory of Planned Behavior predicts that a combination of attitudes, perceived norms, and perceived behavioral control predict intentions, and that intentions ultimately predict behavior. Previous studies have found that the TPB can predict students’ engagement in plagiarism. Furthermore, the General Theory of Crime suggests that self-control is particularly important in predicting engagement in unethical behavior such as plagiarism. In Study 1, we incorporated self-control in a TPB model and tested whether norms, attitudes, and self-control predicted intention to plagiarize and (...) plagiarism behavior. The best statistical fit for the path-analytic model was achieved when a direct path from self-control to plagiarism engagement was specified. In Study 2, we added a measure of perceived behavioral control and split the measurement of norms into descriptive and injunctive components. This study found that both self-control and perceived-behavioral control additively contributed to the prediction of plagiarism and the path-analytic model achieved its best fit when direct paths from perceived norms to plagiarism behavior were specified. These studies suggest that setting strong anti-plagiarism norms, such as by the use of honor codes, and seeking to enhance students’ self-control may reduce engagement in plagiarism. (shrink)

Delivering high quality genomics-informed care to patients requires accurate test results whose clinical implications are understood. While other actors, including state agencies, professional organizations, and clinicians, are involved, this article focuses on the extent to which the federal agencies that play the most prominent roles — the Centers for Medicare and Medicaid Services enforcing CLIA and the FDA — effectively ensure that these elements are met and concludes by suggesting possible ways to improve their oversight of genomic testing.

Patient narratives from two investigational deep brain stimulation trials for traumatic brain injury and obsessive‐compulsive disorder reveal that injury and illness rob individuals of personal identity and that neuromodulation can restore it. The early success of these interventions makes a compelling case for continued post‐trial access to these technologies. Given the centrality of personal identity to respect for persons, a failure to provide continued access can be understood to represent a metaphorical identity theft. Such a loss recapitulates the pain of (...) an individual's initial injury or illness and becomes especially tragic because it could be prevented by robust policy. A failure to fulfill this normative obligation constitutes a breach of disability law, which would view post‐trial access as a means to achieve social reintegration through this neurotechnological accommodation. (shrink)

This is the first article in a two-part series describing subject and family perspectives from the central thalamic deep brain stimulation for the treatment of traumatic brain injury using the Medtronic PC + S first-in-human invasive neurological device trial to achieve cognitive restoration in moderate to severe traumatic brain injury, with subjects who were deemed capable of providing voluntary informed consent. In this article, we report on interviews conducted prior to surgery wherein we asked participants about their experiences recovering from (...) brain injury and their perspectives on study enrollment and participation. We asked how risks and benefits were weighed, what their expectations and fears were, and how decisions were reached about trial participation. We found that informed consent and enrollment decisions are fraught. Subjects and families were often split, with subjects more focused on putative benefits and families concerned about incremental risk. Both subjects and families viewed brain injury as disruptive to personal identity and relationships. As decisions were made about study enrollment, families struggled with recognizing the re-emergent agency of subjects and ceding decision-making authority to subjects who had previously been dependent upon them for protection and guidance. Subjects and family members reported a hope for the relief of cognitive disabilities, improved quality of life, normalization of interpersonal interactions, and a return to work or school as reasons for study participation, along with altruism and a desire to advance science. Despite these aspirations, both subjects and families appreciated the risks of the intervention and did not suffer from a therapeutic misconception. A second essay to be published in the next issue of Cambridge Quarterly of Healthcare Ethics—Clinical Neuroethics will describe interviews conducted after surgery, the effects of cognitive restoration for subjects, families, and challenges presented to the social structures they will call upon to support them through recovery. This subsequent article will be available online prior to its formal publication in October 2023. (shrink)