It is unclear whether the regulatory distinction between non-identifiable and identifiable information—information used to determine informed consent practices for the use of clinically derived samples for genetic research—is meaningful to patients. The objective of this study was to examine patients' attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research. Telephone interviews were conducted with 1,193 patients recruited from general medicine, thoracic surgery, or medical oncology clinics at five United States academic medical centers. Wanting to know (...) about research being done was important to 72% of patients when samples would be anonymous and to 81% of patients when samples would be identifiable. Only 17% wanted to know about the identifiable scenario but not the anonymous scenario. Curiosity-based reasons were the most common among patients who wanted to know about anonymous samples. Of patients wanting to know about either scenario, approximately 57% would require researchers to seek permission, whereas 43% would be satisfied with notification only. Patients were more likely to support permission in the anonymous scenario if they had more education, were Black, less religious, in better health, more private, and less trusting of researchers. The sample, although not representative of the general population, does represent patients at academic medical centers whose clinical samples may be used for genetic research. Few patients expressed preferences consistent with the regulatory distinction between non-identifiable and identifiable information. Data from this study should cause policy-makers to question whether this distinction is useful in relation to research with previously collected clinically derived samples. (shrink)

The timing of this special issue of AJOB probing whether public engagement (PE)1 might help achieve equity in genomics is no coincidence. While many issues discussed by the authors are not entirely...

Whole genome sequencing is quickly becoming more affordable and accessible, with the prospect of personal genome sequencing for under $1,000 now widely said to be in sight. The ethical issues raised by the use of this technology in the research context have received some significant attention, but little has been written on its use in the clinical context, and most of this analysis has been futuristic forecasting. This is problematic, given the speed with which whole genome sequencing technology is likely (...) to be incorporated into clinical care. This paper explores one particular subset of these issues: the implications of adopting this technology in the prenatal context without a good understanding of when and how it is useful. Prenatal whole genome sequencing differs from current prenatal genetic testing practice in a number of ethically relevant ways. Most notably, whole genome sequencing would radically increase the volume and scope of available prenatal genetic data. The wealth of new data could enhance reproductive decision‐making, promoting parents' freedom to make well‐informed reproductive decisions. We argue, however, that there is potential for prenatal whole genome sequencing to alter clinical practice in undesirable ways, especially in the short term. We are concerned that the technology could (1) change the norms and expectations of pregnancy in ways that complicate parental autonomy and informed decision‐making, (2) exacerbate the deleterious role that genetic determinism plays in child rearing, and (3) undermine children's future autonomy by removing the option of not knowing their genetic information without appropriate justification. (shrink)

A case study in the kinds of problems to expect from this increasingly popular marketing tactic.

Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the protection of human (...) subjects cannot be achieved by relying solely on procedural safeguards. There are more nuanced issues related to recruitment and retention of subjects, and to the process of informed consent, that are generated during the interaction between study staff and subjects. It is only through an examination of these relationships that one can more fully define and understand the challenges of protecting subjects in research. (shrink)

Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the protection of human (...) subjects cannot be achieved by relying solely on procedural safeguards. There are more nuanced issues related to recruitment and retention of subjects, and to the process of informed consent, that are generated during the interaction between study staff and subjects. It is only through an examination of these relationships that one can more fully define and understand the challenges of protecting subjects in research. (shrink)

Saunkeah et al. argue convincingly that although respect for Tribal sovereignty is often invoked as a core justification for Tribal research protections, an expanded ethical framework is req...

It is unclear whether the regulatory distinction between non-identifiable and identifiable information—information used to determine informed consent practices for the use of clinically derived samples for genetic research—is meaningful to patients. The objective of this study was to examine patients' attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research. Telephone interviews were conducted with 1,193 patients recruited from general medicine, thoracic surgery, or medical oncology clinics at five United States academic medical centers. Wanting to know (...) about research being done was important to 72% of patients when samples would be anonymous and to 81% of patients when samples would be identifiable. Only 17% wanted to know about the identifiable scenario but not the anonymous scenario. Curiosity-based reasons were the most common among patients who wanted to know about anonymous samples. Of patients wanting to know about either scenario, approximately 57% would require researchers to seek permission, whereas 43% would be satisfied with notification only. Patients were more likely to support permission in the anonymous scenario if they had more education, were Black, less religious, in better health, more private, and less trusting of researchers. The sample, although not representative of the general population, does represent patients at academic medical centers whose clinical samples may be used for genetic research. Few patients expressed preferences consistent with the regulatory distinction between non-identifiable and identifiable information. Data from this study should cause policy-makers to question whether this distinction is useful in relation to research with previously collected clinically derived samples. (shrink)

Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...) range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and tim.. (shrink)

Whole-genome analysis and whole-exome analysis generate many more clinically actionable findings than traditional targeted genetic analysis. These findings may be relevant to research participants themselves as well as for members of their families. Though researchers performing genomic analyses are likely to find medically significant genetic variations for nearly every research participant, what they will find for any given participant is unpredictable. The ubiquity and diversity of these findings complicate questions about disclosing individual genetic test results. We outline an approach for (...) disclosing a select range of genetic results to the relatives of research participants who have died, developed in response to relatives? requests during a pilot study of large-scale medical genetic sequencing. We also argue that studies that disclose individual research results to participants should, at a minimum, passively disclose individual results to deceased participants? relatives. (shrink)

Hastings Center Report, Volume 52, Issue 1, Page 51-58, January/February 2022.

In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...) to grow. The budget of the National Institutes of Health, for example, was $20,298 million in 2001, having more than doubled from a budget of $9,218 million 10 years before. This growing body of research includes increased efforts to use stored medical records as a source of data for health services, epidemiologic, and clinical studies. (shrink)

In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...) to grow. The budget of the National Institutes of Health, for example, was $20,298 million in 2001, having more than doubled from a budget of $9,218 million 10 years before. This growing body of research includes increased efforts to use stored medical records as a source of data for health services, epidemiologic, and clinical studies. (shrink)

Research participants' views about investigator financial interests were explored. Reactions ranged from concern to acceptance, indifference, and even encouragement. Although most wanted such information, some said it did not matter, was private, or was burdensome, and other factors were more important to research decisions. Very few said it would affect their research decisions, and many assumed that institutions managed potential conflicts of interest. Although disclosure of investigator financial interest information to research participants is often recommended, its usefulness is limited, especially (...) when participation is desired because of illness. (shrink)

Concerns about the influence of financial interests on research have increased, along with research dollars from pharmaceutical and other for-profit companies. Researchers’ financial ties to industry sponsors of research have also increased. Financial interests in biomedical research could influence research design, conduct, or reporting, and could compromise data integrity, participant safety, or both. Investigators’ financial ties with for-profit companies may influence reported scientific results, and may have compromised research participant safety.Disclosure is one commonly accepted method of managing financial relationships in (...) order to minimize possible threats to scientific objectivity, the safety of research participants, or public trust in the integrity of clinical research. Disclosure is presumed useful to the extent that “it gives those who would be affected, or who are otherwise in a good position to assess the risks, information they need to make their own decision.”. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 54-55, October 2012.

This book investigates the role of inference in argumentation, considering how arguments support standpoints on the basis of different loci. The authors propose and illustrate a model for the analysis of the standpoint-argument connection, called Argumentum Model of Topics. A prominent feature of the AMT is that it distinguishes, within each and every single argumentation, between an inferential-procedural component, on which the reasoning process is based; and a material-contextual component, which anchors the argument in the interlocutors’ cultural and factual common (...) ground. The AMT explains how these components differ and how they are intertwined within each single argument. This model is introduced in Part II of the book, following a careful reconstruction of the enormously rich tradition of studies on inference in argumentation, from the antiquity to contemporary authors, without neglecting medieval and post-medieval contributions. The AMT is a contemporary model grounded in a dialogue with such tradition, whose crucial aspects are illuminated in this book. (shrink)

This paper revisits Derrida’s and Deleuze’s early discussions of “Platonism” in order to challenge the common claim that there is a fundamental divergence in their thought and to challenge one standard narrative about the history of deconstruction. According to that narrative, deconstruction should be understood as the successor to phenomenology. To complicate this story, I read Derrida’s “Plato’s Pharmacy” alongside Deleuze’s discussion of Platonism and simulacra at the end of Logic of Sense. Both discussions present Platonism as the effort to (...) establish a representative order (of original ideas and authorized reproductions of them) with no excess or outside (simulacra, or ideas that cannot be tied to an eidos). Since such pure representation is impossible, Platonism functions by means of the violent suppression of the simulacra and pharamakoi that exceed its eidetic structures. To overcome Platonism is thus not to reverse it, but to establish something like a practice of counter-memorials: detecting, exhuming, and writing back textual traces of what Platonism excludes. I then briefly apply this practice to narratives about the history of deconstruction, and suggest that they tend to occlude precisely the materialist elements of that history, as (for example) the importance of Spinoza as an interlocutor. In other words, the emerging canonical narrative about deconstruction runs the risk of repeating the Platonic gesture that Derrida spent his career writing against. (shrink)

Proponents of grounding often describe the notion as "metaphysical causation" involving determination and production relations similar to causation. This paper argues that the similarities between grounding and causation are merely superficial. I show that there are several sorts of causation that have no analogue in grounding; that the type of "bringing into existence" that both involve is extremely different; and that the synchronicity of ground and the diachronicity of causation make them too different to be explanatorily intertwined.

In the autumn of 1912, C. G. Jung, then president of the International Psychoanalytic Association, set out his critique and reformulation of the theory of psychoanalysis in a series of lectures in New York, ideas that were to prove unacceptable to Freud, thus creating a schism in the Freudian school. Jung challenged Freud's understandings of sexuality, the origins of neuroses, dream interpretation, and the unconscious, and Jung also became the first to argue that every analyst should themselves be analyzed. Seen (...) in the light of the subsequent reception and development of psychoanalysis, Jung's critiques appear to be strikingly prescient, while also laying the basis for his own school of analytical psychology. This volume of Jung's lectures includes an introduction by Sonu Shamdasani, Philemon Professor of Jung History at University College London, and editor of Jung's Red Book. (shrink)

Awe has traditionally been considered a religious or spiritual emotion, yet scientists often report that awe motivates them to answer questions about the natural world, and to do so in naturalistic terms. Indeed, awe may be closely related to scientific discovery and theoretical advance. Awe is typically triggered by something vast (either literally or metaphorically) and initiates processes of accommodation, in which existing mental schemas are revised to make sense of the awe‐inspiring stimuli. This process of accommodation is essential for (...) the kind of belief revision that characterizes scientific reasoning and theory change. Across six studies, we find that the tendency to experience awe is positively associated with scientific thinking, and that this association is not shared by other positive emotions. Specifically, we show that the disposition to experience awe predicts a more accurate understanding of how science works, rejection of creationism, and rejection of unwarranted teleological explanations more broadly. (shrink)

The social categories to which we belong—Latino, disabled, American, woman— causally influence our lives in deep and unavoidable ways. One might be pulled over by police because one is Latino, or one might receive a COVID vaccine sooner because one is American. Membership in these social categories most often falls outside of our control. This paper argues that membership in social categories constitutes a restriction on human agency, creating a situation of non-ideal agency for many human individuals. -/- However, there (...) are ways to resist the causal influence of social categories, and certain socially marginalized groups can be understood as attempting to do just this. I discuss two instances of social category resistance: gender pronouns and the rights of trans individuals. I suggest that the intentional declaration of gender pronouns (“she/her” or “they/them”) can be understood as an attempt to resist the causal powers of nonconsensual social categorization. Similarly, one among many reasons to support the rights of trans individuals is that their self-declarations of gender identity can be viewed as a reclamation of agency in the face of causal constraints imposed by socially defined and imposed gender categories. This lesson can be generalized to people belonging to a broad range of marginalized groups. (shrink)

In "Changing the Past" (2010), Peter van Inwagen argues that a time traveler can change the past without paradox in a growing block universe. After erasing the portion of past existence that generates paradox, a new, non-paradox-generating block can be "grown" after the temporal relocation of the time traveler. -/- I articulate and explore the underlying mechanism of Van Inwagen's model: the time traveler's control over the location of the objective present. Van Inwagen's model is aimed at preventing paradox by (...) changing the past, but it achieves something broader than paradox avoidance: it gives tools for a new model of time travel. I use van Inwagen's tools to develop a new kind of time travel in which in which the location of the objective present is shifted by the time traveler. I call this type of time travel Movable Objective Present, or MOP. After defining MOP, I argue that it is compatible with any theory of time that accepts hypertime, including presentism and moving spotlight theory. (shrink)

I argue that fitting envy plays a special role in safeguarding our happiness and flourishing. After presenting my theory of envy and its fittingness conditions, I contrast Kant’s view that envy is always unfitting with D’Arms and Jacobson’s defense of fitting envy as an evolutionarily-shaped response to a deep and wide human concern, that is, relative positioning. However, D’Arms and Jacobson don’t go far enough. First, I expand on their analysis of positional goodness, distinguishing between an epistemic claim, according to (...) which we use implicit or explicit comparison to know what position we occupy in a continuum of goodness, and thus to form judgments of goodness, and a metaphysical one, according to which much human goodness depends on implicit or explicit rankings and positionality. Second, I argue that fitting envy is not only intrinsically valuable qua fitting response to authentic goodness, but can be epistemically, morally and prudentially valuable. (shrink)

Faith and Modern Thought is a jargon-busting and engaging introduction providing an imaginative and creative way into the great minds that have forged the modern world, especially Kant and Hegel and the revolutionary philosophies of existentialism and Marxism they inspired. Tim Hull provides the wider intellectual picture, the fuller philosophical story in which modern theology was forged. After an engaging introduction to the European Enlightenment and the cultural crisis it triggered, the stage is set to understand the essence of (...) modern theology. From that essential background the radical faith of many of the most influential of modern theologians and philosophers of religion is explored, exposing a deep-rooted indebtedness to the Enlightenment tradition"-- Back cover. (shrink)

This paper suggests that time travelling scenarios commonly depicted in science fiction introduce problems and dangers for the time traveller. If time travel takes time, then time travellers risk collision with past objects, relocation to distant parts of the universe, and time travel-specific injuries. I propose several models of time travel that avoid the dangers and risks of time travel taking time, and that introduce new questions about the relationship between time travel and spatial location.

This paper discusses a puzzling tension in attributions of moral responsibility in cases of resultant moral luck: we seem to hold agents fully morally responsible for unlucky outcomes, but less-than-fully-responsible for unlucky outcomes brought about differently than intended. This tension cannot be easily discharged or explained, but it does shed light on a famous puzzle about causation and responsibility, the Thirsty Traveler.

In this paper I will develop a lambda-term calculus, lambda-2Int, for a bi-intuitionistic logic and discuss its implications for the notions of sense and denotation of derivations in a bilateralist setting. Thus, I will use the Curry-Howard correspondence, which has been well-established between the simply typed lambda-calculus and natural deduction systems for intuitionistic logic, and apply it to a bilateralist proof system displaying two derivability relations, one for proving and one for refuting. The basis will be the natural deduction system (...) of Wansing's bi-intuitionistic logic 2Int, which I will turn into a term-annotated form. Therefore, we need a type theory that extends to a two-sorted typed lambda-calculus. I will present such a term-annotated proof system for 2Int and prove a Dualization Theorem relating proofs and refutations in this system. On the basis of these formal results I will argue that this gives us interesting insights into questions about sense and denotation as well as synonymy and identity of proofs from a bilateralist point of view. (shrink)

Ausgangspunkt dieser Untersuchung sind Wittgensteins Analysen der Kippbilder, seine Reflexionen über das Sehen-als und die damit verbundene Spannung zwischen Identität und Differenz. Wittgenstein, so lautet die zentrale These des Buches, beschäftigte sich mit solchen außergewöhnlichen Phänomenen, weil sie die übersichtliche Darstellung der komplexen, symbolischen Praktiken menschlicher Lebensformen erlauben. Anhand unterschiedlicher Beispiele – physiognomischer Ausdruck, Witz, Kunst, Dichtung, sadomasochistische Perversion – erstellt Sara Fortuna eine Grammatik der Aspekte, die eng auf ethische Fragestellungen bezogen bleibt. Dadurch erscheinen Wittgensteins späte Gedanken als (...) Kritik einer philosophischen und kulturellen Tradition und es gelingt der Autorin, ihn mit Dante, Vico, Kant, der Psychoanalyse, der Anthropologie und der feministischen Philosophie in ein fruchtbares Gespräch zu bringen. (shrink)

Do we need a right to mental privacy? In an era of increasing sophistication in recording, interpreting, and directly intervening on our neural activity – not to mention efforts at combining neural...

This paper argues that causal idealism, the view that causation is a product of mental activity, should be considered a competetitor to contemporary views that incorporate human thought and agency into the causal relation. Weighing contextualism, contrastivism, or pragmatism about causation against causal idealism results in at least a tie with respect to the virtues of these theories.

This chapter develops an alternative to the dominant articulation of human existence on the basis of classical phenomenology, arguing that Edmund Husserl's phenomenological inquiries into the structures of embodiment provide a very different and more fruitful starting point for the investigation of sexual difference than the ideas of social gender and biological sex. The ways of classifying sex and gender characteristics mark them out on several different conceptual bases, and thus their categories may not correspond or coincide. Moreover historical and (...) biological inquiries indicate that the dimorphic notion of sex is prescriptive and constructive. Finally the sex/gender paradigm is dominated by the explanatory framework of causes and effects. The phenomenological analysis shows that the causal-functional framework is inadequate for the investigation of the plurality of the bodily existence and sexual difference as a dimension of this existence. In the light of the explication of the concepts of sex and gender, and the phenomenological analysis of embodiment, the sex/gender paradigm cannot offer a basis for a comprehensive philosophy of sexual existence. (shrink)

China is rising. As China ascends in power, it is likely that ?Western? administrators ? American and European, in particular ? will find that they must interact with Chinese administrators more and more. In this article, I offer readers a brief glimpse into Chinese administrative ethics through an investigation of two forms of Chinese philosophy ? Confucianism and Taoism. In addition to reviewing these philosophies, I derive some consequences for a public service ethic that lies between the East and the (...) West. In particular, this article includes some recommendations for the managerial implications of these two philosophies in the context of increased political and administrative connections between the West and China. (shrink)

The concept of solidarity is of central importance to the political sense of collective action. But it is a curious fact that solidarity is virtually unmentioned across the large and growing literature in philosophical collective action theory. Instead, we see discussions of collective action overwhelmingly focus on epistemic conditions and group-level correlates of individual action explanations such as collective intentions, collective beliefs, and so on. The aim of this paper is to elucidate the relationship between solidarity and collective action theory. (...) I will try to answer two questions: (1) What is it about the structure of accounts of collective action that seems to preclude discussions of solidarity and related concepts; and (2) How can solidarity be made to play a useful role in those accounts? (shrink)