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.

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)

Molly is just a unique little girl who likes what she likes. But if she were concerned about the way Disney portrays women, she would do well to consider The Little Mermaid. Ariel represents a major step forward from Snow White. Ariel's treasure trove is full of dinglehoppers and snarfblats, but once she lays eyes on Prince Eric, the young man is the prize she wants most. When the Prince's ship splits, The Little Mermaid flips the script. For all her (...) shortcomings from a feminist perspective, unruly Ariel represents a move in the right direction. The Little Mermaid does not belong in the hall of shame, like Song of the South. Adolescent Ariel sings and leads a viewing public into a new, fresh take on Disney princesses, with a voice reminding everyone to be assertive, speak their minds, and do what they want to do. (shrink)

In this target article by Morain and Largent (2023), the authors focus on an investigator’s duty to patient-subjects specifically regarding incidental or collateral findings within the context of e...

In practice, scoring rules elicit good probability estimates from individuals, while betting markets elicit good consensus estimates from groups. Market scoring rules combine these features, eliciting estimates from individuals or groups, with groups costing no more than individuals. Regarding a bet on one event given another event, only logarithmic versions preserve the probability of the given event. Logarithmic versions also preserve the conditional probabilities of other events, and so preserve conditional independence relations. Given logarithmic rules that elicit relative probabilities of (...) base event pairs, it costs no more to elicit estimates on all combinations of these base events. (shrink)

The topic of fake news has received increased attention from philosophers since the term became a favorite of politicians (Habgood-Coote 2016; Dentith 2016). Notably missing from the conversation, however, is a discussion of fake news and conspiracy theory media as a market. This paper will take as its starting point the account of noxious markets put forward by Debra Satz (2010), and will argue that there is a pro tanto moral reason to restrict the market for fake news. Specifically, we (...) begin with Satz’s argument that restricting a market may be required when i) that market inhibits citizens from being able to stand in an equal relationship with one another, and ii) this problem cannot be solved without such direct restrictions. Our own argument then proceeds in three parts: first, we argue that the market for fake news fits Satz’s description of a noxious market; second, we argue against explanations of the proliferation of fake news that are couched in terms of “epistemic vice”, and likewise argue against prescribing critical thinking education as a solution to the problem; finally, we conclude that, in the absence of other solutions to mitigate the noxious effects of the fake news market, we have a pro tanto moral reason to impose restrictions on this market. At the end of the paper, we consider one proposal to regulate the fake news market, which involves making social media outlets potentially liable in civil court for damages caused by the fake news hosted on their websites. (shrink)

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)

Moral distress has been characterised in the nursing literature as a major problem affecting nurses in all healthcare systems. It has been portrayed as threatening the integrity of nurses and ultimately the quality of patient care. However, nursing discourse on moral distress is not without controversy. The notion itself is conceptually flawed and suffers from both theoretical and practical difficulties. Nursing research investigating moral distress is also problematic on account of being methodologically weak and disparate. Moreover, the ultimate purpose and (...) significance of the research is unclear. In light of these considerations, it is contended that the notion of moral distress ought to be abandoned and that concerted attention be given to advancing inquiries that are more conducive to improving the quality and safety of moral decision-making, moral conduct and moral outcomes in nursing and healthcare domains. (shrink)

I argue that propaganda does not characteristically interfere with individual rationality, but instead with group agency. Whereas it is often claimed that propaganda involves some sort of incitement to irrationality, I show that this is neither necessary nor sufficient for a case’s being one or propaganda. For instance, some propaganda constitutes evidence of the speaker’s power, or else of the risk and futility of opposing them, and there is nothing irrational about taking such evidence seriously. I outline an alternative account (...) of propaganda inspired by Hannah Arendt, on which propaganda characteristically creates or destroys group agency. One aspiring to control the public should have an interest in both creating and suppressing group agency, I argue, both because groups have capacities that individuals don’t, and because participation in group action can have a transformative effect upon the individual. Finally, I suggest that my characterization of propaganda suggests a vision of resistance to propaganda quite unlike the one that emerges from irrational-belief accounts, on which propaganda cannot be resisted by oneself. (shrink)

This paper provides an analysis of U.S. farmland owners, operators, and workers by race, ethnicity, and gender. We first review the intersection between racialized and gendered capitalism and farmland ownership and farming in the United States. Then we analyze data from the 2014 Tenure and Ownership Agricultural Land survey, the 2012 Census of Agriculture, and the 2013–2014 National Agricultural Worker Survey to demonstrate that significant nation-wide disparities in farming by race, ethnicity and gender persist in the U.S. In 2012–2014, White (...) people owned 98% and operated 94% of all farmland. They generated 98% of all farm-related income from land ownership and 97% of income from farm owner-operatorship. Meanwhile, People of Color farmers were more likely to be tenants rather than owners, owned less land, and generated less farm-related wealth per person than their White counterparts. Hispanic farmers were also disproportionately farm laborers. In addition to racial and ethnic disparities, there were disparities by gender. About 63% of non-operating landowners, 86% of farm operators, and 87% of tenant farmers were male, and female farmers tended to generate less income per farmer than men. This data provides evidence of ongoing racial, ethnic and gender disparities in agriculture in the United States. We conclude with a call to address the structural drivers of the disparities and with recommendations for better data collection. (shrink)

According to many accounts, propaganda is a variety of politically significant signal with a distinctive connection to irrationality. This irrationality may be theoretical, or practical; it may be supposed that propaganda characteristically elicits this irrationality anew, or else that it exploits its prior existence. The view that encompasses such accounts we will call irrationalism. This essay presents two classes of propaganda that do not bear the sort of connection to irrationality posited by the irrationalist: hard propaganda and propaganda by the (...) deed. Faced with these counterexamples, some irrationalists will offer their account of propaganda as a refinement of the folk concept rather than as an attempt to capture all of its applications. The author argues that any refinement of the concept of propaganda must allow the concept to remain essentially political, and that the irrationalist refinement fails to meet this condition. (shrink)

For much of their history, the relationship between anthropology and psychology has been well captured by Robert Frost's poem, “Mending Wall,” which ends with the ironic line, “good fences make good neighbors.” The congenial fence was that anthropology studied what people think and psychology studied how people think. Recent research, however, shows that content and process cannot be neatly segregated, because cultural differences in what people think affect how people think. To achieve a deeper understanding of the relation between process (...) and content, research must integrate the methodological insights from both anthropology and psychology. We review previous research and describe new studies in the domain of folk biology which examine the cognitive consequences of different conceptualizations of nature and the place of humans within it. The focus is on cultural differences in framework theories among Native Americans and European American children and adults living in close proximity in rural Wisconsin. Our results show that epistemological orientations affect memory organization, ecological reasoning, and the perceived role of humans in nature. This research also demonstrates that cultural differences in framework theories have implications for understanding intergroup conflict over natural resources and are relevant to efforts to improve science learning, especially among Native American children. (shrink)

Representing two generations of counselor education and practice, Megan Anna Neff and Mark McMinn provide practitioners with a fresh look at integration in a postmodern world. Modeling how to engage hard questions, they consider how different theological views, gendered perspectives, and cultures integrate with psychology and counseling.

Recent scholarship in intellectual humility (IH) has attempted to provide deeper understanding of the virtue as personality trait and its impact on an individual's thoughts, beliefs, and actions. A limitations-owning perspective of IH focuses on a proper recognition of the impact of intellectual limitations and a motivation to overcome them, placing it as the mean between intellectual arrogance and intellectual servility. We developed the Limitations-Owning Intellectual Humility Scale to assess this conception of IH with related personality constructs. In Studies 1 (...) (n= 386) and 2 (n = 296), principal factor and confirmatory factor analyses revealed a three-factor model – owning one's intellectual limitations, appropriate discomfort with intellectual limitations, and love of learning. Study 3 (n = 322) demonstrated strong test-retest reliability of the measure over 5 months, while Study 4 (n = 612) revealed limitations-owning IH correlated negatively with dogmatism, closed-mindedness, and hubristic pride and positively with openness, assertiveness, authentic pride. It also predicted openness and closed-mindedness over and above education, social desirability, and other measures of IH. The limitations-owning understanding of IH and scale allow for a more nuanced, spectrum interpretation and measurement of the virtue, which directs future study inside and outside of psychology. (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...

The field of science communication is plagued by challenges. Communicators face the difficulty of responding to unjustified public skepticism over issues like climate change and COVID-19 while also acknowledging the fallibility and limitations of scientific knowledge. Our goal in this paper is to suggest a new model for science communication that can help foster more productive, respectful relationships among all those involved in science communication. Inspired by the pragmatist philosophy of John Dewey, we develop an experience model, according to which (...) science communication consists in people’s experiences with science and the meanings they develop from those experiences. Three principles are central to the model: experience is cumulative, context matters, and audiences have agency. We argue that this model has significant implications both for communication research and practice, which we illustrate by applying it to the phenomenon of vaccine hesitancy. We show how science communicators can help to identify and alleviate structural factors that contribute to skepticism as well as fostering opportunities for meaning making around shared experiences. (shrink)

Business Ethics: A European Review, EarlyView.

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)

This paper takes up the question of how videographic public announcements (VPAs)---i.e. videos that a wide swath of the public sees and knows that everyone else can see too--- have functioned to mobilize people politically, and how the presence of deepfakes in our information environment stands to change the dynamics of this mobilization. Existing work by Regina Rini, Don Fallis and others has focused on the ways that deepfakes might interrupt our acquisition of first-order knowledge through videos. But I point (...) out that even where every audience member takes a video to be veridical, where first-order knowledge acquisition is secure, an audience aware of deepfakes in their environment will not acquire higher order knowledge in the way that has erstwhile been characteristic for audiences of VPAs. Engaging with ideas from the literatures on public announcement logic, common knowledge, and convention, I enumerate a variety of ways in which we should expect this absence of higher order knowledge to throw up barriers to political mobilization. I go on to apply my analysis of VPAs to the mechanisms by which an uptick in publicly available videos of police brutality over the last decade, mediated by camera phones and social media, was responsible for the largest mass protests in US history in summer 2020. This makes vivid the stakes of the transformation in our mobilizing environment that I've claimed deepfakes effect: where we lose the common-knowledge-generating effects of VPAs, there are fresh obstacles to this sort of mass mobilization. (shrink)

Here are two widely held positions on the ethics of dating: First, people are generally morally justified in excluding people they don’t find attractive from their dating pool. Second, people are not justified in maintaining a dating pool that is racially exclusive, even on grounds like attraction. In this paper, we demonstrate how these positions are consistent. To do so we differentiate our attitudes in dating and our dating behavior. Then we show how existing criticisms of racialized attitudes in dating (...) are incomplete as practical criticisms of our behavior. Finally, we give our account of the moral reasons whites have to change their dating preferences when they exclude people of color. In doing so, we supplement existing discussions of race-based discrimination in dating. (shrink)

Marshall and colleagues (2024) contribute to the literature on autonomy and decision-making capacity by focusing on the case of individuals with opioid use disorder who refuse to remain in the hosp...

According to a recent survey by the HR Research Institute, as the presence of artificial intelligence (AI) becomes increasingly common in the workplace, HR professionals are worried that the use of recruitment algorithms will lead to a “dehumanization” of the hiring process. Our main goals in this paper are threefold: i) to bring attention to this neglected issue, ii) to clarify what exactly this concern about dehumanization might amount to, and iii) to sketch an argument for why dehumanizing the hiring (...) process is ethically suspect. After distinguishing the use of the term “dehumanization” in this context (i.e., removing the human presence) from its more common meaning in the interdisciplinary field of dehumanization studies (i.e., conceiving of other humans as subhuman), we argue that the use of hiring algorithms may negatively impact the employee-employer relationship. We argue that there are good independent reasons to accept a substantive employee-employer relationship, as well as an applicant-employer relationship, both of which are consistent with a stakeholder theory of corporate obligations. We further argue that dehumanizing the hiring process may negatively impact these relationships because of the difference between the values of human recruiters and the values embedded in recruitment algorithms. Drawing on Nguyen’s (2021) critique of how Twitter “gamifies communication”, we argue that replacing human recruiters with algorithms imports artificial values into the hiring process. We close by briefly considering some ways to potentially mitigate the problems posed by recruitment algorithms, along with the possibility that some difficult trade-offs will need to be made. (shrink)

As members of the fetal surgery advisory board at a large tertiary care center, we read with great interest Hendriks’ et al. target article proposing a new ethical framework for fetal therap...

Reductionism is a central issue in the philosophy of biology. One common objection to reduction is that molecular explanation requires reference to higher-level properties, which I refer to as the context objection. I respond to this objection by arguing that a well-articulated notion of a mechanism and what I term mechanism extension enables one to accommodate the context-dependence of biological processes within a reductive explanation. The existence of emergent features in the context could be raised as an objection to the (...) possibility of reduction via this strategy. I argue that this objection can be overcome by showing that there is no tenable argument for the existence of emergent properties that are not susceptible to a reductive explanation. (shrink)

Elizabeth Lanphier and Uchenna E. Anani provide a powerful argument for the value of a trauma-informed approach to the ethics consultation, which acknowledges the perspectives of all stakeho...

To address climate change fairly, many conflicting claims over natural resources must be balanced against one another. This has long been obvious in the case of fossil fuels and greenhouse gas sinks including the atmosphere and forests; but it is ever more apparent that responses to climate change also threaten to spur new competition over land and extractive resources. This makes climate change an instance of a broader, more enduring and - for many - all too familiar problem: the problem (...) of human conflict over how the natural world should be cared for, protected, shared, used, and managed. -/- This work develops a new theory of global egalitarianism concerning natural resources, rejecting both permanent sovereignty and equal division, which is then used to examine the problem of climate change. It formulates principles of resource right designed to protect the ability of all human beings to satisfy their basic needs as members of self-determining political communities, where it is understood that the genuine exercise of collective self-determination is not possible from a position of significant disadvantage in global wealth and power relations. These principles are used to address the question of where to set the ceiling on future greenhouse gas emissions and how to share the resulting emissions budget, in the face of conflicting claims to fossil fuels, climate sinks, and land. It is also used to defend an unorthodox understanding of responsibility for climate change as a problem of global justice, based on its provenance in historical injustice concerning natural resources. (shrink)

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.

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)

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

Some claim that a commitment to egalitarianism is in tension with support for reparations for historical injustice. This tension appears to arise insofar as egalitarianism is a forward-looking approach to justice: an approach that tells us what kind of world we should aim to build, where that world is not defined in terms of the decisions or actions of previous generations. Some have claimed that egalitarianism thereby renders reparations redundant. One popular option for egalitarians who aim to reject this thesis (...) is to insist that historical injustices demand reparations when they have caused present-day inequality. A promising alternative, skilfully defended by Alasia Nuti in Injustice and the Reproduction of History, is to argue that historical injustices stand in need of repair when they are reproduced into the present-day, such that some past and present injustices are in fact the same injustice. In this paper, I assess these egalitarian responses to the redundancy thesis. I find that Nuti’s account is equipped to reject this thesis, but that the same lines of reply can be adopted by proponents of the causal approach. I suggest that both approaches therefore be viewed as potential ways to conceptualise the relationship between historical injustice and our present normative circumstances; and that in choosing between them, we should understand ourselves to be engaged in an ameliorative project – a project that is guided by, and designed to help us to achieve, our legitimate purposes. (shrink)

Generative artificial intelligence has given us synthetic media that are increasingly easy to create and increasingly hard to distinguish from photographs and videos. Whereas an existing literature has been concerned with how these new media might make a difference for would-be knowers—the viewers of photographs and videos—I advance a thesis about how they will make a difference for would-be communicators—those who embed photos and videos in their speech acts. I claim that the presence of these media in our information environment (...) reduces our ability to show one another things, even as it may increase our resources for telling. And I argue that this has consequences beyond the disruption of knowledge acquisition; showing is a way that we preserve relational equality through superficial asymmetries in political communication, and thereby express respect for our audiences. If synthetic media reduce our options for showing, they then interfere in the way that we manage our relationships in the context of collective political action. (shrink)

We were interested to read the current target article, given our admiration for the senior author’s comprehensive coverage of these same topics a decade ago (Donley, Hul...

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...

Introduction: toward a theory of infrahumanity -- Bioexpansionism, 1900s-1930s -- Brief histories of time: nature, culture, and the making of modern childhood -- Ocular anthropomorphisms: eugenics and primatology at the threshold of the "almost human" -- Extraterrestriality, 1940s-1970s -- On alien ground: extraterrestrial sightings, atomic warfare, and the undoing of the human body -- Inner and outer spaces: exobiology, human genetics, and the disembodiment of corporeal difference -- Interiority, 1980s-2010s -- Of sodomy and cannibalism: disgust, dehumanization, and the rhetorics of (...) same-sex and cross-species contagion -- Everything except the squeal: porcine hybridity in the obesity epidemic and xenotransplantation research -- Conclusion. the plurality is near: techniques of symbiotic re-speciation. (shrink)

Kolbe and de Melo-Martin (2023) describe fatal problems in current definitions and measurement of moral distress and injury (MD/I) in medical professionals, which impede development of genuine atte...

In this paper, we examine how the availability of massive quantities of data i.e., the “Big Data” phenomenon, contributes to the creation, spread, and harms of online misinformation. Specifically, we argue that a factor in the problem of online misinformation is the evolved human instinct to recognize patterns. While the pattern-recognition instinct is a crucial evolutionary adaptation, we argue that in the age of Big Data, these capacities have, unfortunately, rendered us vulnerable. Given the ways in which online media outlets (...) profit from the spread of misinformation by preying on this pattern-finding instinct, we conceptualize the problem that we identify as a morally objectionable form of “epistemic exploitation.” As we argue, the consumer of digital misinformation is often exploited by having her pattern-recognition instinct used against her. This exploitation is morally objectionable because it deprives her of an epistemic good to which she has a right. This epistemic good is the integrity of the pattern-recognition instinct itself which, we argue, is a capacity that allows us to participate in uniquely human goods. While our primary goal is to bring attention to this form of epistemic exploitation, we conclude by briefly evaluating some general solutions to the growing problem of online misinformation. (shrink)