In recent years an uneasy peace has descended in U.S. academe between those who feel research universities have done too little to advance the representation of minority groups and women and those who feel that the administrative policies developed to improve representation can and sometimes do come into conflict with core intellectual commitments of universities. Using quantitative and qualitative evidence from interviews with 47 natural sciences, engineering, and mathematics faculty members at a U.S. research university, the paper examines the background (...) characteristics of three sets of protagonists - academic progressives, academic traditionalists, and those whose views bridge the divide - and the way respondents discussed and justified their viewpoints. The paper draws on the theory of strategic action fields to illuminate the structure and dynamics of the conflict and suggests modifications to the theory that would improve its explanatory power for this case. (shrink)

Shavelson and colleagues (2023) describe how medical aid-in-dying laws in the United States prohibit assistance in administering aid-in-dying medication. This prohibition distinguishes aid in dying...

Discussion of supported decision making has been dominated by legal scholars, philosophers, and advocates for persons with disabilities. Peterson et al.’s primary contribution is introducing...

Persons with dementia often prefer to participate in decisions about their health care, but may be prevented from doing so because healthcare decision-making law facilitates use of advance directives or surrogate decision makers for persons with decisional impairments such as dementia. Federal and state disability law provide alternative decision-making models that do not prevent persons with mild to moderate dementia from making their own healthcare decisions at the time the decision needs to be made. In order to better promote autonomy (...) and wellbeing, persons with dementia should be accommodated and supported so they can make their own healthcare decisions. (shrink)

BackgroundThe proper and ethical inclusion of PWLHIV and their young children in research is paramount to ensure valid evidence is generated to optimize treatment and care. Little empirical data exists to inform ethical considerations deemed most critical to these populations. Our study aimed to systematically review the empiric literature regarding ethical considerations for research participation of PWLHIV and their young children.MethodsWe conducted this systematic review in partnership with a medical librarian. A search strategy was designed and performed within the following (...) electronic databases: Ovid MEDLINE, Embase and CINAHL. We screened titles and abstracts using the following inclusion criteria: (1) a study population of PWLHIV or children under 5 years of age; and (2) collection of qualitative or quantitative data regarding ethics of research participation. Excluded were reviews, commentaries, policy statements, clinical care-related ethics concerns, abstracts, case studies, or studies unrelated to HIV research. Studies were appraised for quality, data were extracted, and studies were qualitatively analyzed using a principle-based ethical framework within the Belmont Report.ResultsOf the 7470 titles identified, 538 full-text articles were reviewed for eligibility and only three articles met full criteria for inclusion within this review. While we allowed for inclusion of studies involving young children born to mothers with HIV, only articles focused on PWLHIV were identified. Within the results of these studies, four themes emerged: (1) adequacy of informed consent; (2) consideration of paternal involvement; (3) balancing risks; and (4) access to research and treatment. A strength of this review is that it included perspectives of international research investigators, community leaders, and male partners. However, only two studies collected empiric data from PWLHIV regarding their experiences participating in researchConclusionResearchers and funding agencies should be aware of these considerations and appreciate the value of and critical need for formative research to ensure clinical trials involving PWLHIV promote ethical, well-informed research participation and, ultimately, improve care outcomes. More research is needed to create a comprehensive ethical framework for researchers when conducting studies with PWLHIV. (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)

Pullman (2023) compares medically-assisted dying (MAiD) laws and rates of medically-assisted deaths in Canada and California, noting some differences in the legal regime and a higher rate of MAiD i...

McCarthy and Howard (2023) advocate for supported decision making for patients with intellectual and developmental disabilities (IDD). Departing from the “mental prosthesis” model of supported deci...

Volume 24, Issue 8, August 2024, Page 121-123.

Pickering, Newton-Howes, and Young assert that the traditional view of decisional capacity, premised on assessing patients’ abilities to communicate, understand, appreciate,...

Volume 24, Issue 8, August 2024, Page 121-123.

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)

This is the second paper in a two-part series describing subject and family perspectives from the CENTURY-S (CENtral Thalamic Deep Brain Stimulation for the Treatment of Traumatic Brain InjURY-Safety) first-in-human invasive neurological device trial to achieve cognitive restoration in moderate to severe traumatic brain injury (msTBI). To participate, subjects were independently assessed to formally establish decision-making capacity to provide voluntary informed consent. Here, we report on post-operative interviews conducted after a successful trial of thalamic stimulation. All five msTBI subjects met (...) a pre-selected primary endpoint of at least a 10% improvement in completion time on Trail-Making-Test Part B, a marker of executive function. We describe narrative responses of subjects and family members, refracted against that success. Interviews following surgery and the stimulation trial revealed the challenge of adaptation to improvements in cognitive function and emotional regulation as well as altered (and restored) relationships and family dynamics. These improvements exposed barriers to social reintegration made relevant by recoveries once thought inconceivable. The study’s success sparked concerns about post-trial access to implanted devices, financing of device maintenance, battery replacement, and on-going care. Most subjects and families identified the need for supportive counseling to adapt to the new trajectory of their lives. (shrink)

Ten years after the Human Genome Project’s completion the life sciences stand in a moment of uncertainty, transition, and contestation. The postgenomic era has seen rapid shifts in research methodology, funding, scientific labor, and disciplinary structures. Postgenomics is transforming our understanding of disease and health, our environment, and the categories of race, class, and gender. At the same time, the gene retains its centrality and power in biological and popular discourse. The contributors to Postgenomics analyze these ruptures and continuities and (...) place them in historical, social, and political context. Postgenomics, they argue, forces a rethinking of the genome itself, and opens new territory for conversations between the social sciences, humanities, and life sciences. Contributors. Russ Altman, Rachel A. Ankeny, Catherine Bliss, John Dupré, Michael Fortun, Evelyn Fox Keller, Sabina Leonelli, Adrian Mackenzie, Margot Moinester, Aaron Panofsky, Sarah S. Richardson, Sara Shostak, Hallam Stevens. (shrink)

In January 2016, Medicare began reimbursing clinicians for time spent engaging in advance care planning with their patients or patients’ surrogates. Such planning involves discussions of the care an individual would want to receive should he or she one day lose the capacity to make health care decisions or have conversations with a surrogate about, for example, end‐of‐life wishes. Clinicians can be reimbursed for face‐to‐face explanation and discussion of care and advance directives and for the completion of advance care planning (...) forms. Although it seems that political barriers to reimbursement for such planning have largely faded, the Medicare policy's impact on provider billing practices appears to be limited, suggesting other barriers to clinician engagement in advance care planning. Additionally, the effects of this policy on patient behavior and the clinician‐patient relationship are not yet known. (shrink)

The payment of human subjects is an area where Institutional Review Boards have wide discretion. Although the “Common Rule” requires the provision of full information to human research participants to secure valid consent, the Rule is silent on the issue of payment. Still, some federal agencies offer guidance on the matter. For example, the National Science Foundation cautions that high payments for risky research “may induce a needy participant to take a risk that they normally would prefer not to take.” (...) For research under its purview, the Food and Drug Administration guidance provides that “[a]dvertisements may state that subjects will be paid, but should not emphasize the payment or the amount to be paid, by such means as larger or bold type.” One might read the FDA guidance to permit the advertisement for human subjects to state the specific amount of payment, as long as it is not emphasized. (shrink)

The Lion King is a Disney version of Shakespeare's most famous play, Hamlet. It was going to be the first Disney animated feature film based on an original concept – no source material. Hamlet's famous “to be or not to be” soliloquy rings with existential absurdity, and his morbid brooding reflects a sense of meaninglessness. The existential question of being permeates both play and film. The Lion King transfers Hamlet's contemplative question about life and death to not one but two (...) delightful characters, perfect for manufacture and distribution as stuffed animals, plastic action figures, plates, cups, stickers, one names it. After he leaves the Pride Lands, Simba runs into Timon the meerkat and Pumbaa the warthog who offer him an answer to Hamlet's question. The Lion King ends with song and the celebration of Simba's own son – the circle of life continues. (shrink)

As improvements in neuroscience have enabled a better understanding of disorders of consciousness as well as methods to treat them, a hurdle that has become all too prevalent is the denial of coverage for treatment and rehabilitation services. In 2011, a settlement emerged from a Vermont District Court case, Jimmo v. Sebelius, which was brought to stop the use of an “improvement standard” that required tangible progress over an identifiable period of time for Medicare coverage of services. While the use (...) of this standard can have deleterious effects on those with many chronic conditions, it is especially burdensome for those in the minimally conscious state, where improvements are unpredictable and often not manifested through repeatable overt behaviors. Though the focus of this paper is on the challenges of brain injury and the minimally conscious state, which an estimated 100,000 to 200,000 individuals suffer from in the United States, the post-Jimmo arguments presented can and should have a broad impact as envisioned by the plaintiffs who brought the case on behalf of multiple advocacy groups representing patients with a range of chronic care conditions. (shrink)

The understanding of emergent, self-organizing phenomena has been immensely deepened in recent years on the basis of simulation-based theoretical research. We discuss these new ideas, and illustrate them using examples from several fields. Our discussion serves to introduce equivalent self-organized phenomena in social interaction. Interaction systems appear to be structured partly by virtue of such emergents. These appear under specific conditions: When cognitive buffering is inadequate relative to the levels of stress persons are subjected to, anxiety-spreading has the potential of (...) pushing their interaction into nonlinear conditions. Arousal in these conditions produces effects on behavior arising from biological sources-indeed, behavior can come under the control of reflex patterns. When this occurs, psychological activity no longer screens off biological controls over behavior. As the direct effects of biological activity spill into interaction, attachment behavior introduced into an interaction system can produce effects that are transmitted beyond dyads to produce global social patterns. These effects illustrate how strong interactions based in biological activity can produce an architecture for social systems. (shrink)

Deaths of Despair (DoD), or mortality resulting from suicide, drug overdose, and alcohol-related liver disease, have been rising steadily in the United States over the last several decades. In 2020, a record 186,763 annual despair-related deaths were documented, contributing to the longest sustained decline in US life expectancy since 1915–1918. This forum feature considers how health humanities disciplines might fruitfully engage with this era-defining public health catastrophe and help society better understand and respond to the crisis.

Although Darwin insisted that human intelligence could be fully explained by the theory of evolution, the codiscoverer of natural selection, Alfred Russel Wallace, claimed that abstract intelligence was of no use to ancestral humans and could only be explained by intelligent design. Wallace’s apparent paradox can be dissolved with two hypotheses about human cognition. One is that intelligence is an adaptation to a knowledge-using, socially interdependent lifestyle, the “cognitive niche.” This embraces the ability to overcome the evolutionary fixed defenses of (...) plants and animals by applications of reasoning, including weapons, traps, coordinated driving of game, and detoxification of plants. Such reasoning exploits intuitive theories about different aspects of the world, such as objects, forces, paths, places, states, substances, and other people’s beliefs and desires. The theory explains many zoologically unusual traits in Homo sapiens, including our complex toolkit, wide range of habitats and diets, extended childhoods and long lives, hypersociality, complex mating, division into cultures, and language (which multiplies the benefit of knowledge because know-how is useful not only for its practical benefits but as a trade good with others, enhancing the evolution.. (shrink)

Contributors to the 2016 Special Issue of Discourse Studies on the ‘Epistemics of Epistemics’ claim that studies of epistemics in interaction have lost the ‘radical’ character of groundbreaking work in ethnomethodology and conversation analysis. We suggest that the critiques and related writings are a kind of mandarin EM, lacking an adequate definition of ‘radical’, other than to invoke brief and by now familiar statements from Garfinkel and Sacks regarding the pursuit of ‘ordinary everyday activities’ and the avoidance of ‘formal analysis’. (...) Drawing on Egon Bittner’s work, we further suggest that the EoE group shares properties and problems common to social movements claiming the mantle of radicalism. Because of their particular focus on CA and Harvey Sacks’ early work, we also demonstrate that Sacks was not, as asserted, preoccupied with the singularity of occasions. Rather, from his earliest available work, Sacks pursued trans-situational aspects of sequential organization, and documented these not only through single cases but also through the comparative analysis of specimen collections. We conclude by considering how EM and CA are compatible endeavors, both in their engagement with traditional research topics – or what Garfinkel called ‘asymmetric alternates’ – and in their appreciation of generic features implicated in the assembly of social actions and social worlds. This implies a relationship of mutual interchange between EM and CA. (shrink)

Despite recent empirical interest, the links between optimism and pessimism with pro-environmental behavior remain equivocal. This research is characterized by a reliance on cross-sectional data, a focus on trait-level at the neglect of state-level optimism–pessimism, and assessments of retrospective self-reported ecological behavior that are subject to response bias. To attend to these gaps, 140 North American adults were experimentally primed with bogus optimistic or pessimistic environmental news articles, and then asked to report their levels of state optimism–pessimism, intentions to purchase (...) green products, in vivo PEB, and support for geoengineering technologies. Results confirmed that optimistic environmental messaging enhanced the expression of state optimism, which then contributed to PEB and support for geoengineering. These results have important implications for the framing of environmental messaging intended to promote ecologically conscious behavior. (shrink)

Both dilation and non-conglomerability have been alleged to conflict with a fundamental principle of Bayesian methodology that we call \textit{Good's Principle}: one should always delay making a terminal decision between alternative courses of action if given the opportunity to first learn, at zero cost, the outcome of an experiment relevant to the decision. In particular, both dilation and non-conglomerability have been alleged to permit or even mandate choosing to make a terminal decision in deliberate ignorance of relevant, cost-free information. Although (...) dilation and non-conglomerability share some similarities, some authors maintain that there are important differences between the two that warrant endorsing different normative positions regarding dilation and non-conglomerability. This article reassesses the grounds for treating dilation and non-conglomerability differently. Our analysis exploits a new and general characterization result for dilation to draw a closer connection between dilation and non-conglomerability. (shrink)

This article is a critique of Thaddeus Metz’s modal relational approach to moral status in African ethics. According to moral relationalism, a being has moral status if it exhibits the capacity for communal relationship as either a subject or an object. While Metz defends a prima facie plausibility of MR as an African account of moral status, this article provides a fresh perspective to the debate on moral status in environmental and ethical discourse. It raises two objections against MR: the (...) capability criterion inherent in MR is not only exogenous to African thought but also undermines the viability of MR; and MR cannot account for the standing of species populations. Both objections have severe implications for biodiversity conservation efforts in Africa and beyond. (shrink)

Philosophy & Social Criticism, Volume 48, Issue 5, Page 655-673, June 2022. The standard account of the relation between democracy and the rule of law focuses on law’s liberty-enhancing role in constraining official action. This is a faint echo of the complex, constitutive relation between the two. The Greeks used one word – isonomia – to describe both. If democracy is the system in which people have an equal say in determining the rules that govern social life, then the rule (...) of law is simultaneously before, after, concurrent and synonymous with democracy: It contributes to the formation of citizens with the capacity for self-governance, serves as the instrument through which democratic decisions are implemented, functions as one of the central social practices that constitute citizens as equals and addresses the question of how to ensure that government by the people operates for the people. The rule of law has many independently valuable qualities, including impartiality and predictability. But, to valorise the rule of law for its own sake is to fetishize authority. The fundamental values of the rule of law are as the instrument of democratic self-governance and the expression of the equal dignity of all persons. Democracy thus entails the rule of law, but both implicate the yet more comprehensive ideal of equality. Core rule-of-law values require political norms and conditions of equality, generality and comprehensiveness. In a modern, differentiated society, however, the constitutive relation between democracy and the rule of law is fractured and law becomes the agent of authority. Courts in the modern constitutional state have contributed to the decline of rule-of-law values, supporting role specialization through judge-made immunity doctrines that protect officials at all levels. The crisis of police violence against minorities is a symptom of this breakdown. Greater accountability can ameliorate the problem. But an effective solution requires the fair and equal distribution of political power. (shrink)

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)

Under what conditions do you have a reason to perform some action? Do you only have reason to do what you want to do? Reasons-motives internalism is the appealingly simple view that unless an agent is, or could be, motivated to act in a certain way, he has no normative reason to act in that way. Thus, according to reasons-motives internalism, facts about an individual’s motivational psychology constrain what is rational for that agent to do. This article canvasses several ways (...) of formulating the view and considers some advantages and disadvantages of each. (shrink)

I examine an argument that appears to take us from Parfit’s [Reasons and Persons, Oxford: Clarendon Press (1984)] thesis that we have no reason to fulfil desires we no longer care about to the conclusion that the effect of posthumous events on our desires is a matter of indifference (the post-mortem thesis). I suspect that many of Parfit’s readers, including Vorobej [Philosophical Studies 90 (1998) 305], think that he is committed to (something like) this reasoning, and that Parfit must therefore (...) give up the post-mortem thesis. However, as it turns out, the argument is subtly equivocal and does not commit Parfit to the post-mortem thesis. I close with some doubts about Parfit’s case for his indifference thesis. (shrink)

This is an examination of the nature and extent of Cordemoy's commitment to the doctrine of occasionalism.

Through an exploration of theoretical physics, this paper suggests the need for regrounding natural science in phenomenological philosophy. To begin, the philosophical roots of the prevailing scientific paradigm are traced to the thinking of Plato, Descartes, and Newton. The crisis in modern science is then investigated, tracking developments in physics, science's premier discipline. Einsteinian special relativity is interpreted as a response to the threat of discontinuity implied by the Michelson-Morley experiment, a challenge to classical objectivism that Einstein sought to counteract. (...) We see that Einstein's efforts to banish discontinuity ultimately fall into the “black hole” predicted in his general theory of relativity. The unavoidable discontinuity that haunts Einstein's theory is also central to quantum mechanics. Here too the attempt has been made to manage discontinuity, only to have this strategy thwarted in the end by the intractable problem of quantum gravity. The irrepressible discontinuity manifested in the phenomena of modern physics proves to be linked to a merging of subject and object that flies in the face of Cartesian philosophy. To accommodate these radically non-classical phenomena, a new philosophical foundation is called for: phenomenology. Phenomenological philosophy is elaborated through Merleau-Ponty's concept of depth and is then brought into focus for use in theoretical physics via qualitative work with topology and hypercomplex numbers. In the final part of this paper, a detailed summary is offered of the specific application of topological phenomenology to quantum gravity that was systematically articulated in The Self-Evolving Cosmos (Rosen 2008a). (shrink)

The lymphatic vasculature plays a critical role in the regulation of body fluid volume and immune function. Extensive research into the molecular mechanisms that control blood vessel growth has led to identification of molecules that also regulate development and growth of the lymphatic vessels. This is generating a great deal of interest in the molecular control of the lymphatics in the context of embryogenesis, lymphatic disorders and tumor metastasis. Studies in animal models carried out over the past three years have (...) shown that the soluble protein growth factors, vascular endothelial growth factor (VEGF)‐C and VEGF‐D, and their cognate receptor tyrosine kinase, VEGF receptor‐3 (VEGFR‐3), are critical regulators of lymphangiogenesis. Furthermore, disfunction of VEGFR‐3 has recently been shown to cause lymphedema. The capacity to induce lymphangiogenesis by manipulation of the VEGF‐C/VEGF‐D/VEGFR‐3 signaling pathway offers new opportunities to understand the function of the lymphatic system and to develop novel treatments for lymphatic disorders. BioEssays 24:1030–1040, 2002. © 2002 Wiley‐Periodicals, Inc. (shrink)

This volume surveys the interpretation of St. Paul by patristic and medieval exegetes. It also examines the use of Paul by medieval reformers, canon lawyers, and spiritual teachers and Paul’s portrayal in medieval literature and art.

Kaveny recommends models drawn from the Gospel of John and the practices of the early church for modern Christians in their response to older women and their health needs. She draws upon a historical reconstruction of the early Christian Order of Widows to propose a normative standard of care for elderly women, one that attends seriously to their bodily needs but also to their needs for inclusion and engagement in the social and vocational world both as givers and recipients of (...) care. This is also to serve as an overarching model for a bioethics that prizes the embodied existence of all women and rejects judgments of appropriate treatment based on their social utility. The following response raises questions about the exegetical and historical foundations of Kaveny?s analysis. However, these caveats may not detract substantially from the normative usefulness of her work. (shrink)

This paper is a rejoinder to Robert Almeder's "On Reincarnation: A Reply to Hales". I argue that even if we stipulate the case studies of the reincarnationists to be good data, the explanatory hypothesis of reincarnation is a deus ex machina. Without a comprehensive scientific or philosophical theory of the mind that embeds the reincarnation hypothesis, the view should not be taken seriously. The fact that reincarnation is the first explanation of the case studies that comes to mind says more (...) about us and our culture than it does about which explanations are the most probable ones. (shrink)