Hospital ethics committees (HECs) and ethicists generally describe themselves as engaged in four domains of practice: case consultation, research, education, and policy work. Despite the increasing attention to quality indicators, practice standards, and evaluation methods for the other domains, comparatively little is known or published about the policy work of HECs or ethicists. This article attempts to open the ?black box? of this health care ethics practice by providing two detailed case examples of ethics policy reviews. We also describe (...) the development and application of an evaluation strategy to assess the quality of ethics policy review work, and to enable continuous improvement of ethics policy review processes. Given the potential for policy work to impact entire patient populations and organizational systems, it is imperative that HECs and ethicists develop clearer roles, responsibilities, procedural standards, and evaluation methods to ensure the delivery of consistent, relevant, and high-quality ethics policy reviews. (shrink)

The male muse in the psychic territory Adrienne Rich called in 1971 ‘The Man’ represents sexualized death and phallic mourning, a concept of masculinity marked by the legacy of the 20th century’s two world wars. In the context of representations of ‘The Man’ in North American white women writers coming of age in the late 1950s and early 1960s, Sylvia Plath’s journal account of the Saint Botolph’s Review party, where she met her husband, and its fictional transformation in her (...) 1957 short story, ‘Stone Boy with Dolphin’, demonstrate Plath’s examination of the Bostonian Puritan heritage and the psychic aftermath of the Second World War. Plath’s constructions of heterosexual romance as participating in the history of Fascism and her concept of writing as sexy violence coincide culturally with Lacan’s theory of phallic signification. (shrink)

Through an engagement with Sylvia Wynter, this article explores how black feminist critiques of the human can inform critical genealogies of religion. Specifically, the article develops a theoretical framework to interrogate how the modern construction of religion and the secular also produces racial identities and hierarchies. To draw attention to the global dimensions of this project, the article foregrounds the seminal work of Jason Ā. Josephson-Storm in his book, The Invention of Religion in Japan. The article argues that (...) studies like Josephson-Storm's show how religion helps transform existing forms of social organization within a bio-evolutionary conception of the nation, and is used by the state to differentiate between who can be considered fully human and who cannot. In this process “superstition” or “irrationality” is rewritten as a biological threat to the health and well-being of “the people,” and political domination is represented as a struggle to purify the nation. (shrink)

This article invites critical inquiry into the rhetorical form of Sylvia Wynter’s thought. The author identifies the key to Wynter’s thought as charting a cartography that is intransigently committed to a vision of the intellectual imagination at its most ambitious while staying true to the grain and detail of the liminal, the lumpen, and the particular. The upshot is that Wynter wants to open up a space for the imagination and labor of Black thought, one that comes after (...) and beyond philosophy and theory. (shrink)

How does Sylvia Wynter’s theory of the human depart from Western bio-centric and teleological accounts of the human? To grapple with this question I clarify five key concepts in her theory: the Third Emergence, auto- and socio-poiesis, the autopoietic overturn, the human as hybrid, and sociogenesis. I draw on parts of Wynter’s oeuvre, texts she works with and my conversations with Anthony Bogues. Wynter invents a Third Emergence of the world to mark the advent of the human as a (...) hybrid being. She challenges Western conceptions that reduce the human to biological properties. In opposition to Western teleology, her counter-cartography of a history of human life offers a relational conception of human existence which pivots around Frantz Fanon’s theory of sociogeny. She draws on Aimé Césaire’s call for a conception of the human made to the measure of the world, not to the measure of ‘Man’. This makes Wynter’s theory counter-, not post-humanist. (shrink)

Drawing upon the work of various critical race theorists, including Frantz Fanon, Kevin Quashie, Hortense J. Spillers, Calvin L. Warren and Sylvia Wynter, this article suggests that if Blackness has historically been, and continues to be, cast outside of being and into being, or what Wynter terms désêtre, then for Blackness to give expression to itself and/or to prove (or improvise) its “aliveness” is a necessarily “poetic” process, given that poetry/ poiesis is the bringing into being of that which (...) previously did not exist. Looking at a range of films, including Arthur Jafa’s Dreams are colder than Death (USA, 2014) and Love Is the Message, The Message Is Death (USA, 2016), Barry Jenkins’s The Gaze (USA, 2021) and Paige Taul’s I am (USA, 2017), the article considers this cinematic poiesis in the light of Martin Heidegger’s philosophy of poetry, drawing out the structuring antiblackness at work in the latter and in modernity more generally, before suggesting that cinematically to present Blackness in a loving fashion/to love Blackness through film is what Denise Ferreira da Silva might term a radical and “poethical” gesture, using poetry to decolonise our white supremacist world. (shrink)

This essay seeks to unsettle the overrepresented, Eurocentric grounds of a pivotal debate in the history of Western philosophy. The debate between Michel Foucault and Jacques Derrida on the topic of madness has had central significance for twentieth-century continental thought due to its lasting impact on the development, reception, and stakes of the respective thinker’s methodologies. While heavily written on and analyzed from the perspective of Western academic philosophy, little attention has been paid to the racialized, ‘Third World’ origins and (...) structures of the debate and its content. I contend that the work of Sylvia Wynter addresses, critiques, and ameliorates these structures in heretofore previously unacknowledged ways. Specifically, Wynter’s work in “Unsettling the Coloniality of Being/Power/Truth/Freedom”, her diptych on the Ceremony (Must Be) Found, and her critical engagements with the submerged “abducting logic” of Western thought marks an incisive critique of both Foucault and Derrida’s interpretation of reason and madness in Western philosophy. As I argue, Wynter is committed to deconstructing the binary of madness/reason so as to unsettle the overrepresentation of Western logos. She does so through the liminal figure of the “black cogito” which disrupts and shakes the foundations of the debate, nor can either conflicting interpretation neatly assimilate this figure. That is, by deconstructing the debate on the history of madness Wynter demonstrates the paucity of their arguments about, on the one hand, the history of reason and the exclusion of madness, and, on the other, the metaphysical ambiguity of the Cartesian cogito. This essay aims to set out on an alternative history of the deconstruction of Western metaphysics initiated from the demonic grounds of being. (shrink)

Background In this study, we examined the ethical implications of Egypt’s new clinical trial law, employing the ethical framework proposed by Emanuel et al. and comparing it to various national and supranational laws. This analysis is crucial as Egypt, considered a high-growth pharmaceutical market, has become an attractive location for clinical trials, offering insights into the ethical implementation of bioethical regulations in a large population country with a robust healthcare infrastructure and predominantly treatment-naïve patients. Methods We conducted a comparative analysis (...) of Egyptian law with regulations from Sweden and France, including the EU Clinical Trials Regulation, considering ethical human subject research criteria, and used a directed approach to qualitative content analysis to examine the laws and regulations. This study involved extensive peer scrutiny, frequent debriefing sessions, and collaboration with legal experts with relevant international legal expertise to ensure rigorous analysis and interpretation of the laws. Results On the rating of the seven different principles (social and scientific values, scientific validity, fair selection of participants, risk-benefit ratio, independent review, informed consent and respect for participants) Egypt, France, and EU regulations had comparable scores. Specific principles (Social Value, Scientific Value, and Fair selection of participants) were challenging to directly identify due to certain regulations embodying 'implicit' principles more than explicitly stated ones. Conclusion The analysis underscores Egypt's alignment with internationally recognized ethical principles, as outlined by Emanuel et al., through its comparison with French, Swedish, and EU regulations, emphasizing the critical need for Egypt to continuously refine its ethical regulations to safeguard participant protection and research integrity. Key issues identified include the necessity to clarify and standardize the concept of social value in research, alongside concerns regarding the expertise and impartiality of ethical review boards, pointing towards a broader agenda for enhancing research ethics in Egypt and beyond. (shrink)

In this paper, we review the literature on moderators and mediators in the corporate sustainability –corporate financial performance relationship. We provide some clarity on what has been learned so far by taking a contingency perspective on this much-researched relationship. Overall, we find that this research has made some progress in the past. However, we also find this research stream to be characterized by three major shortcomings, namely low degree of novelty, missing investment in theory building, and a lack of research (...) design and measurement options. To address these shortcomings, we suggest avenues for future research. Beyond that we also argue for a stronger emphasis on the strategic perspective of CS. In particular, we propose future research to take a step back and aim for an integration of the CS–CFP relationship into the strategic management literature. (shrink)

This article discusses how the concept of a fair finite lottery can best be extended to denumerably infinite lotteries. Techniques and ideas from non-standard analysis are brought to bear on the problem.

I respond to H. M. Collins's claim (1985, 1990, 1993) that experimental inquiry cannot be objective because the only criterium experimentalists have for determining whether a technique is "working" is the production of "correct" (i.e., the expected) data. Collins claims that the "experimenters' regress," the name he gives to this data-technique circle, cannot be broken using the resources of experiment alone. I argue that the data-technique circle, can be broken even though any interpretation of the raw data produced by techniques (...) is theory-dependent. However, it is possible to break this circle by eliminating dependence on even those theoretical presuppositions that are shared by an entire scientific community through the use of multiple independently theory-dependent techniques to produce robust bodies of data. Moreover, I argue, that it is the production of robust bodies of data that convinces experimentalists of the objectivity of their data interpretations. (shrink)

Rasmussen (1993) argues that, because electron microscopists did not use robustness and would not have been warranted in using it as a criterion for the reality or the artifactuality of mesosomes, the bacterial mesosome serves as a test case for robustness that it fails. I respond by arguing that a more complete reading of the research literature on the mesosome shows that ultimately the more robust body of data did not support the mesosome and that electron microscopists used and were (...) warranted in using robustness as a criterion for the artifactuality of mesosomes. (shrink)

Noradrenergic pathways are involved in mediating the central and peripheral effects of physiological arousal. The aim of the present study was to investigate the role of noradrenergic transmission in moral decision-making. We studied the effects in healthy volunteers of propranolol (a noradrenergic beta-adrenoceptor antagonist) on moral judgement in a set of moral dilemmas pitting utilitarian outcomes (e.g., saving five lives) against highly aversive harmful actions (e.g., killing an innocent person) in a double-blind, placebo-controlled, parallel group design. Propranolol (40 mg orally) (...) significantly reduced heart rate, but had no effect on self-reported mood. Importantly, propranolol made participants more likely to judge harmful actions as morally unacceptable, but only in dilemmas where harms were ‘up close and personal’. In addition, longer response times for such personal dilemmas were only found for the placebo group. Finally, judgments in personal dilemmas by the propranolol group were more decisive. These findings indicate that noradrenergic pathways play a role in responses to moral dilemmas, in line with recent work implicating emotion in moral decision-making. However, contrary to current theorising, these findings also suggest that aversion to harming is not driven by emotional arousal. Our findings are also of significant practical interest given that propranolol is a widely used drug in different settings, and is currently being considered as a potential treatment for post-traumatic stress disorder in military and rescue service personnel. (shrink)

Non-Archimedean probability functions allow us to combine regularity with perfect additivity. We discuss the philosophical motivation for a particular choice of axioms for a non-Archimedean probability theory and answer some philosophical objections that have been raised against infinitesimal probabilities in general.

This collection of essays analyzes relations of social inequality that appear to be logical extensions of a "natural order," and in the process demonstrates that a revitalized feminist anthropology of the 1990s has much to offer the field of feminist theory. Fashioned as a response to the lack of cultural analysis in feminist scholarship, the contributors question the category of gender within the inclusive context of the structural dynamics of inequality. They also examine how cultural identities, domains and institutions affect (...) our perception of gender in society. The first selection of essays addresses how ideas of family and kinship have fostered society's hierarchies and legitimized the status quo. In part two, the essays show how several dimensions of inequality are implicit in the construction of identities that are based upon ideas of social solidarity. Contributors: Susan McKinnon, University of Virginia; Kath Weston, Arizona State West; Rayna Rapp, New School for Social Research; Janet Dolgin, Hofstra University; Harriet Whitehead, Duke University; Carol Delaney, Stanford University; Brackette Williams, University of Arizona; Sylvia Yanagisako, Stanford University; Phyllis Chock, Catholic University; Sherry Ortner, University of Michigan; Anna Tsing, University of California, Santa Cruz. (shrink)

Traditional approaches to theory structure and theory change in science do not fare well when confronted with the practice of certain fields of science. We offer an account of contemporary practice in molecular biology designed to address two questions: Is theory change in this area of science gradual or saltatory? What is the relation between molecular biology and the fields of traditional biology? Our main focus is a recent episode in molecular biology, the discovery of enzymatic RNA. We argue that (...) our reconstruction of this episode shows that traditional approaches to theory structure and theory change need considerable refinement if they are to be defended as generally applicable. 1This paper emerged from discussions between us, and we are both equally responsible for its errors. We would like to thank Yvonne Paterson for helpful comments. (shrink)

Human freedom is in tension with nomological determinism and with statistical determinism. The goal of this paper is to answer both challenges. Four contributions are made to the free-will debate. First, we propose a classification of scientific theories based on how much freedom they allow. We take into account that indeterminism comes in different degrees and that both the laws and the auxiliary conditions can place constraints. A scientific worldview pulls towards one end of this classification, while libertarianism pulls towards (...) the other end of the spectrum. Second, inspired by Hoefer, we argue that an interval of auxiliary conditions corresponds to a region in phase space, and to a bundle of possible block universes. We thus make room for a form of non-nomological indeterminism. Third, we combine crucial elements from the works of Hoefer and List; we attempt to give a libertarian reading of this combination. On our proposal, throughout spacetime, there is a certain amount of freedom that can be interpreted as the result of agential choices. Fourth, we focus on the principle of alternative possibilities throughout and propose three ways of strengthening it. (shrink)

Entrevista realizada durante a conferência proferida por Sylvia Serbin nas atividades do “Congresso Internacional Territorialidade e Saude: desigualdades raciais e sociais em contextos locais e globais”, organizado e coordenado pelo Nucleo de Estudos e Pesquisa em Psicanalise, Identidade, Negritude e Sociedade, ocorrido de 03 a 7 de setembro de 2014, no Centro de Ciências da Saude da Universidade Federal do Recôncavo da Bahia, em Santo Antonio de Jesus/BA.

This essay argues that ideals of cooperation or adversariality in argumentation are not equally attainable for women. Women in argumentation contexts face oppressive limitations undermining argument success because their authority is undermined by gendered norms of politeness. Women endorsing or, alternatively, transgressing feminine norms of politeness typically defend their authority in argumentation contexts. And yet, defending authority renders it less legitimate. My argument focuses on women in philosophy but bears the implication that other masculine dis- course contexts present similar double (...) binds that urge social and political change. (shrink)

Traditional theories of moral development emphasize the role of controlled cognition in mature moral judgment, while a more recent trend emphasizes intuitive and emotional processes. Here we test a dual-process theory synthesizing these perspectives. More specifically, our theory associates utilitarian moral judgment (approving of harmful actions that maximize good consequences) with controlled cognitive processes and associates non-utilitarian moral judgment with automatic emotional responses. Consistent with this theory, we find that a cognitive load manipulation selectively interferes with utilitarian judgment. This interference (...) effect provides direct evidence for the influence of controlled cognitive processes in moral judgment, and utilitarian moral judgment more specifically. (shrink)

A popular way to relate probabilistic information to binary rational beliefs is the Lockean Thesis, which is usually formalized in terms of thresholds. This approach seems far from satisfactory: the value of the thresholds is not well-specified and the Lottery Paradox shows that the model violates the Conjunction Principle. We argue that the Lottery Paradox is a symptom of a more fundamental and general problem, shared by all threshold-models that attempt to put an exact border on something that is intrinsically (...) vague. We propose application of the language of relative analysis—a type of non-standard analysis—to formulate a new model for rational belief, called Stratified Belief. This contextualist model seems well-suited to deal with a concept of beliefs based on probabilities ‘sufficiently close to unity’ and satisfies a moderately weakened form of the Conjunction Principle. We also propose an adaptation of the model that is able to deal with beliefs that are less firm than ‘almost certainty’. The adapted version is also of interest for the epistemicist account of vagueness. (shrink)

The Eurocentric canon remains the predominant focus of music education often excluding the role of music and experiences of Black individuals and people of color. This singular perspective creates an incomplete and inaccurate understanding of the comprehensive nature of music and the humans who create, perform, and engage with it. In this article, the author shares her experience as a Black music educator and her aspirations for a music profession that incorporates the full range of human music engagement (...) and expression. The paper begins with a reflection on W.E.B. DuBois’s double consciousness followed by an exploration of the nuances, complexities, contradictions, and beauty of being a Black educator in a primarily white field. Subsequently, the essay presents four conceptual principles for a reimagined, inclusive music education approach, drawing inspiration from Sylvia Wynter’s “new science of the Word.” These principles advocate retelling the music education narrative to incorporate historically marginalized voices, reorienting music education to be human-centered, embracing interdisciplinary approaches to view music teaching and learning, and acknowledging the power of music in uplifting the human condition. Finally, this paper proposes a pathway for reconciling diverse identities prevalent in American culture with music education and academia. (shrink)

The Snow White problem is introduced to demonstrate how learning something of which one could not have learnt the opposite (due to observer selection bias) can change an agent’s probability assignment. This helps us to analyse the Sleeping Beauty problem, which is deconstructed as a combinatorial engine and a subjective wrapper. The combinatorial engine of the problem is analogous to Bertrand’s boxes paradox and can be solved with standard probability theory. The subjective wrapper is clarified using the Snow White problem. (...) Sample spaces for all three problems are presented. The conclusion is that subjectivity plays no irreducible role in solving the Sleeping Beauty problem and that no reference to centered worlds is required to provide the answer. (shrink)

Cesarean delivery rates have been steadily increasing worldwide. In response, many countries have introduced target goals to reduce rates. But a focus on target goals fails to address practices embedded in standards of care that encourage, rather than discourage, cesarean sections. Obstetrical standards of care normalize use of technology, creating an imperative to use technology during labor and birth. A technological imperative is implicated in rising cesarean rates if physicians or patients fear refusing use of technology. Reproductive autonomy is at (...) stake since a technological imperative undermines patients’ ability to choose cesareans or refuse use of technology increasing the likelihood of cesareans. To address practices driven by a technological imperative I outline three physician obligations that are attached to respecting patient autonomy. These moral obligations show that a focus on respect for autonomy may prove not only an ideal ethical response but also an achievable practical response to lowering cesarean rates. (shrink)

Der Begriff »Race«, aus den universitären Kulturwissenschaften stammend, will unbewusste Rassifizierungsprozesse beschreiben, die wir unweigerlich vornähmen und denen wir zugleich ausgesetzt seien. Der vorliegende Beitrag will diesen Begriff für Psychoanalyse und Psychotherapie fruchtbar machen. Zwei Fallvignetten illustrieren, welche Fallstricke für Psychoanalytiker und Patienten bereit lägen, wenn »Race« in Übertragung und Gegenübertragung verleugnet werden müsse. Tauchen negativ konnotierte »racial« Phantasien auf, könne die Angst, rassistisch zu denken oder zu agieren, zum Stillstand und sogar Scheitern einer Behandlung führen. Da rassifizierte Projektionen nach (...) Ansicht der Autorin unvermeidbar seien, sieht sie die Entstehung des Gefühls einer »racial Melancholia« als Möglichkeit, dem drohenden Stillstand entgegenzuwirken. (shrink)

Neoclassical and Austrian/evolutionary economic paradigms have different implications for integrating corporate social responsibility (corporate citizenship) and competitive strategy. porter's "Five Forces" model implicitly rests on neoclassical theory of the firm and is not easily reconciled with corporate social responsibility. Resource-based models of competitive strategy do not explicitly embrace a particular economic paradigm, but to the extent their conceptualization rests on neoclassical assumptions such as imperfect factor markets and profits as rents, these models also imply a trade-off between competitive advantage and (...) corporate social responsibility. Differences in Austrian/evolutionary economic model's assumptions about equilibrium, profits, and other economic concepts allow this paradigm to embrace alternative views of strategy such as the activities or dynamic capabilities views. These alternative views of strategy focus on learning and adaptation; they align more easily with corporate social responsibility. In practice this alignment comes about because social engagement facilitates the learning and adaptation that are a source of competitive advantage. Among the many business arguments for CSR such as improved employee morale/productivity or brand differentiation, this view prioritizes innovation. (shrink)

Over the last 20 years, a paternalistic view in health care has been losing ground. The question about less asymmetrical positions in the healthcare professional–patient relationship is, for example, being addressed by the increased emphasis on person‐centred care, promoted in disciplines such as medicine and nursing. Partnership is considered as a key component in person‐centred care. Although the previous studies have addressed the attributes inherent in partnership, there is still potential for further discussion on how the various interpretations of partnership (...) influence their use in healthcare literature. A vague understanding might also affect education and evaluation. As we see it, the philosophical underpinnings of the idea of partnership have not been sufficiently explored and discussed. The study reveals that partnership originates in the term “partener” defined as a relationship between individuals or groups characterized by cooperation and responsibility. Etymologically speaking, partnership is hence bound by a contract, which in this study is discussed in the frame of Rawls’ contract theory, which in turn intersects with Benhabib and her distinction between “the abstract” and “the concrete Other.” Further, the expression “equal partnership,” which often appears in the context of person‐centredness, is explored in relation to the philosophies of Rawls and Benhabib. The opportunity for partnership, as well as the risk of partnership becoming a tempting magnet with a vague and imprecise meaning, is discussed. Without exploration, reflection and discussion of the philosophical underpinnings, partnership carries a substantial risk of becoming an indistinct idea used in health care. (shrink)

The Snow White problem is introduced to demonstrate how learning something of which one could not have learnt the opposite (due to observer selection bias) can change an agent’s probability assignment. This helps us to analyse the Sleeping Beauty problem, which is deconstructed as a combinatorial engine and a subjective wrapper. The combinatorial engine of the problem is analogous to Bertrand’s boxes paradox and can be solved with standard probability theory. The subjective wrapper is clarified using the Snow White problem. (...) Sample spaces for all three problems are presented. The conclusion is that subjectivity plays no irreducible role in solving the Sleeping Beauty problem and that no reference to centered worlds is required to provide the answer. (shrink)

This dissertation is a contribution to formal and computational philosophy. -/- In the first part, we show that by exploiting the parallels between large, yet finite lotteries on the one hand and countably infinite lotteries on the other, we gain insights in the foundations of probability theory as well as in epistemology. Case 1: Infinite lotteries. We discuss how the concept of a fair finite lottery can best be extended to denumerably infinite lotteries. The solution boils down to the introduction (...) of infinitesimal probability values, which can be achieved using non-standard analysis. Our solution can be generalized to uncountable sample spaces, giving rise to a Non-Archimedean Probability (NAP) theory. Case 2: Large but finite lotteries. We propose application of the language of relative analysis (a type of non-standard analysis) to formulate a new model for rational belief, called Stratified Belief. This contextualist model seems well-suited to deal with a concept of beliefs based on probabilities ‘sufficiently close to unity’. -/- The second part presents a case study in social epistemology. We model a group of agents who update their opinions by averaging the opinions of other agents. Our main goal is to calculate the probability for an agent to end up in an inconsistent belief state due to updating. To that end, an analytical expression is given and evaluated numerically, both exactly and using statistical sampling. The probability of ending up in an inconsistent belief state turns out to be always smaller than 2%. (shrink)

Relations between effect algebras with Riesz decomposition properties and AF C*-algebras are studied. The well-known one-one correspondence between countable MV-algebras and unital AF C*-algebras whose Murray-von Neumann order is a lattice is extended to any unital AF C* algebras and some more general effect algebras having the Riesz decomposition property. One-one correspondence between tracial states on AF C*-algebras and states on the corresponding effect algebras is proved. In particular, pure (faithful) tracial states correspond to extremal (faithful) states on corresponding effect (...) algebras. (shrink)

Arguments in the neuroenhancement debate are sometimes based upon idealistic scenarios involving the assumption of using a drug that has no or negligible side effects. At least it is often implicitly assumed – as technology and scientific knowledge advances - that there soon will be a drug with no or negligible side effects. We will review evidence from neuroscience, complex network research and evolution theory and demonstrate that - at least in terms of psychopharmacological intervention – on the basis of (...) our understanding of brain function it seems inconceivable that there ever will be a drug that has the desired effect without undesirable side effects. We will illustrate this by reference to enhancing edge detection in V2 in monkeys and demonstrate that even for this localised single neuron coded function there would be numerous side effects. Taking the more realistic case of pharmacological enhancement that is inevitably associated with side effects will change consequentialist arguments for neuroenhancement and have implications for the conception of autonomy, specifically in the case of performance enhancement. We conclude that a neuroethics debate that aims to inform policy decisions should take these findings into account. We hope that our article will precipitate more interdisciplinary research in neuroscience and philosophy. (shrink)

Research Ethics, Volume 18, Issue 3, Page 193-209, July 2022. This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used to (...) convey information and enhance research participants’ understanding and challenges faced during the consenting process. Several barriers and facilitators for obtaining consent were identified. Innovative and potentially effective consenting strategies were identified in this study that should be studied and independently verified. (shrink)

Big Data enhances the possibilities for storing personal data extracted from social media and web search on an unprecedented scale. This paper draws on the political economy of information which explains why the online industry fails to self-regulate, resulting in increasingly insidious web-tracking technologies. Content analysis of historical blogs and request for comments on HTTP cookies published by the Internet Engineering Task Force illustrates how cookie technology was introduced in the mid-1990s, amid stark warnings about increased system vulnerabilities and deceptive (...) personal data extractions. In conclusion, online users today are left with few alternatives but to enter into unconscionable contracts about the extraction of their personal data when using the Internet for private purposes. (shrink)

In developing the concept of assemblages, Gilles Deleuze draws at least some inspiration from Gilbert Simondon’s concept of information. While his acknowledgement of Simondon’s influence is almost entirely positive, Deleuze explicitly distances himself from the concept of information in order to avoid its link to the field of cybernetics. However, a Deleuzian informational ontology could instead be leveraged as an alternative to cybernetics. Drawing on the Spinozan link between the work of Deleuze and Simondon, it is possible to develop a (...) hybrid informational ontology. This system can not only offer a different approach to information, data and technology than the essentialist concept of information embraced by cybernetics, but also aligns well with recent research in the biological sciences that has disrupted a long-held concept of individuals as entirely separate and autonomous. Shifting away from the Platonic Form to a Deleuzian/simondonian in-formation furthers the post-human project aimed at understanding processes of subjectivation at multiple scales, including the micro and macro. (shrink)

This study aimed to explore stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV. A qualitative approach to investigation involved five focus group discussions with 30 Community representatives, 12 key informant interviews with researchers, and 12 in-depth interviews with research ethics committee members. In total, 54 stakeholders who were involved in pharmacogenomics research and HIV treatment and care contributed to the data collection between September 2021 and February 2022. The study explored five (...) prominent themes: (i) defining the nature of research results to return to participants; (ii) preparing research participants to receive their results; (iii) obtaining informed consent for the return of results; (iv) opinions on health personnel to return the results to participants; and (v) opinions on how research results should be communicated to participants. Respondents identified various strategies for the return of individual results with minimal ethical risks including the setting up of a diverse and independent committee to undertake a risk-benefit assessment based on local context; ongoing discussions about the possible kinds of results and their implications throughout the study; and employing genetic counsellors to communicate results to participants. The strategies identified in this study should be further studied and independently verified. (shrink)

Alcohol consumption during pregnancy can lead to fetal alcohol spectrum disorders. FASD is a spectrum of structural, functional, and neurodevelopmental problems with often lifelong implications, affecting communities worldwide. It is a leading preventable form of intellectual disabilities and therefore warrants effective prevention approaches. However, well-intended FASD prevention can increase stigmatization of individuals with FASD, women who consume or have consumed alcohol during pregnancy, and non-biological parents and guardians of individuals with FASD. This narrative review surveyed the literature on stigmatization related (...) to FASD. Public stigma appears to be the most common form of stigma studied. Less is known about FASD-related self-stigma, stigma by association, and structural stigma. Accordingly, the current literature on FASD-related stigma does not appear to provide sufficient guidance for effectively reducing FASD-related stigma. However, lessons can be learned from other related health topics and the use of a systematic approach for the development of health promotion programs, namely Intervention Mapping. (shrink)

Cancer treatment decisions should be based on all available evidence. But this evidence is complex and varied: it includes not only the patient’s symptoms and expert knowledge of the relevant causal processes, but also clinical databases relating to past patients, databases of observations made at the molecular level, and evidence encapsulated in scientific papers and medical informatics systems. Objective Bayesian nets offer a principled path to knowledge integration, and we show in this chapter how they can be applied to integrate (...) various kinds of evidence in the cancer domain. This is important from the systems biology perspective, which needs to integrate data that concern different levels of analysis, and is also important from the point of view of medical informatics. (shrink)

This article considers the question of whether corporate entities can benefit from the criminal-law defence of duress. The excuse of duress is accorded in recognition of the defendant’s extreme fear of a threatened consequence, and it is unclear whether corporate entities—as distinct from their members—can experience fear. Many proponents of corporate rationality deny that corporations can have emotional states. I argue that corporations can experience the fear that is necessary to ground a claim of duress, but that the law should (...) only allow fear to excuse coerced corporate action in a narrow set of circumstances. (shrink)