In this issue of the American Journal of Bioethics, Kraft and colleagues (2018) provide important insights into the role trust plays in donor's decisions to contribute data and samples to local bio...

As sharing and secondary research use of biospecimens increases, IRBs and researchers face the challenge of protecting and respecting donors without comprehensive regulations addressing the human subject protection issues posed by biobanking. Variation in IRB biobanking policies about these issues has not been well documented.

As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. (...) Using stasis theory to draw out the important connection between definitional issues and resulting policies, we argue that the framework of genomic contextualism is better suited to evaluating genomics and its policy-relevant features to arrive at more productive discussion and resolve policy debates. (shrink)

In the article, “Precision Medicine for Whom? Public Health Outputs from “Genomics England” and “All of Us” to Make Up for Upstream and Downstream Exclusion,” Galasso focuses on how marginalized pe...

There may be compelling reasons to return to parents a limited subset of results from research conducted using residual newborn screening dried blood samples. This article explores the circumstances under which research results might be returned, as well as the mechanisms by which state newborn screening programs might facilitate the return of research results. The scope of any responsibility to return results of research conducted using DBS should be assessed in light of the potential impact on the primary mission of (...) state newborn screening programs. (shrink)

The COVID-19 pandemic has resulted in widespread disruption of the typical way of doing things. In nearly every industry, responses to the pandemic have brought about departures from standard opera...

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a given disease (...) can depend on the education, financial resources, and social capital available to the patients in a given community. In this article, we utilize three case examples to illustrate ethical challenges at the intersection of rare diseases, advocacy and justice, including how reliance on advocacy in rare disease may drive unintended consequences for equity. We conclude with a discussion of opportunities for diverse stakeholders to begin to address these challenges. (shrink)

Many scientists and doctors hope that affordable genome sequencing will lead to more personalized medical care and improve public health in ways that will benefit children, families, and society more broadly. One hope in particular is that all newborns could be sequenced at birth, thereby setting the stage for a lifetime of medical care and self‐directed preventive actions tailored to each child's genome. Indeed, commentators often suggest that universal genome sequencing is inevitable. Such optimism can come with the presumption that (...) discussing the potential limits, cost, and downsides of widespread application of genomic technologies is pointless, excessively pessimistic, or overly cautious. We disagree. Given the pragmatic challenges associated with determining what sequencing data mean for the health of individuals, the economic costs associated with interpreting and acting on such data, and the psychosocial costs of predicting one's own or one's child's future life plans based on uncertain testing results, we think this hope and optimism deserve to be tempered.In the analysis that follows, we distinguish between two reasons for using sequencing: to diagnose individual infants who have been identified as sick and to screen populations of infants who appear to be healthy. We also distinguish among three contexts in which sequencing for either diagnosis or screening could be deployed: in clinical medicine, in public health programs, and as a direct‐to‐consumer service. Each of these contexts comes with different professional norms, policy considerations, and public expectations. Finally, we distinguish between two main types of genome sequencing: targeted sequencing, where only specific genes are sequenced or analyzed, and whole‐exome or whole‐genome sequencing, where all the DNA or all the coding segments of all genes are sequenced and analyzed.In a symptomatic newborn, targeted or genome‐wide sequencing can help guide other tests for diagnosis or for specific treatment that is urgently needed. Clinicians use the infant's symptoms (or phenotype) to interrogate the sequencing data. These same complexities and uncertainties, however, limit the usefulness of genome‐wide sequencing as a population screening tool. While we recognize considerable benefit in using targeted sequencing to screen for or detect specific conditions that meet the criteria for inclusion in newborn screening panels, use of genome‐wide sequencing as a sole screening tool for newborns is at best premature. We conclude that sequencing technology can be beneficially used in newborns when that use is nuanced and attentive to context. (shrink)

This article provides practical guidance for researchers who wish to enroll and collect data from pediatric research participants through online and mobile platforms, with a focus on the involvement of both children and their parents in the decision to participate.

If the global economy seems unfair, how should we understand what a fair global economy would be? What ideas of fairness, if any, apply, and what significance do they have for policy and law? Working within the social contract tradition, this book argues that fairness is best seen as a kind of equity in practice.

While there are many issues to be raised in using lethal autonomous robotic weapons (beyond those of remotely operated drones), we argue that the most important question is: should the decision to take a human life be relinquished to a machine? This question is often overlooked in favor of technical questions of sensor capability, operational questions of chain of command, or legal questions of sovereign borders. We further argue that the answer must be ?no? and offer several reasons for banning (...) autonomous robots. (1) Such a robot treats a human as an object, instead of as a person with inherent dignity. (2) A machine can only mimic moral actions, it cannot be moral. (3) A machine run by a program has no human emotions, no feelings about the seriousness of killing a human. (4) Using such a robot would be a violation of military honor. We therefore conclude that the use of an autonomous robot in lethal operations should be banned. (shrink)

In this third edition of "John Locke", the text is divided into three parts. The first is biographical, giving an account of the development of Locke's mind. The second expounds the teaching of the "Essay", and relates this to its background; while the third deals with Locke's teaching in political theory, moral philosophy, education, and religion. -- From publisher's description.

Recent philosophical discussions of self-knowledge have focused on basic cases: our knowledge of our own thoughts, beliefs, sensations, experiences, preferences, and intentions. Empiricists argue that we acquire this sort of self-knowledge through inner perception; rationalists assign basic self-knowledge an even more secure source in reason and conceptual understanding. I try to split the difference. Although our knowledge of our own beliefs and thoughts is conceptually insured, our knowledge of our experiences is relevantly like our perceptual knowledge of the external world.

This discussion responds to important questions raised about my theory of fairness in the global economy by Christian Barry, Charles Beitz, A.J. Julius and Kristi Olson. I further elaborate how moral argument can be ‘internal’ to a social practice, how my proposed principles of fairness depend on international practice, how I can admit several relevant conceptions of ‘harm’ and why my account does not depend on a problematic conception of societal ‘endowments’.

Jordi Fernandez has recently offered an interesting account of introspective justification according to which the very states that (subjectively) justify one's first-order belief that p justify one's second order belief that one believes that p. I provide two objections to Fernandez's account.

Is the procreation asymmetry intuitively supported? According to a recent article in this journal, an experimental study suggests the opposite. Dean Spears (2020) claims that nearly three-quarters of participants report that there is a reason to create a person just because that person’s life would be happy. In reply, I argue that various confounding factors render the study internally invalid. More generally, I show how one might come to adopt the procreation asymmetry for the wrong reasons by misinterpreting one’s intuitions.

Neo-Cartesian approaches to belief place greater evidential weight on a subject's introspective judgments than do neo-behaviorist accounts. As a result, the two views differ on whether our absent-minded and weak-willed actions are guided by belief. I argue that simulationist accounts of the concept of belief are committed to neo-Cartesianism, and, though the conceptual and empirical issues that arise are inextricably intertwined, I discuss experimental results that should point theory-theorists in that direction as well. Belief is even less closely connected to (...) behaviour than most contemporary functionalists allow. (shrink)

For Émilie Du Châtelet, I argue, a central role of the principle of sufficient reason is to discriminate between better and worse explanations. Her principle of sufficient reason does not play this role for just any conceivable intellect: it specifically enables understanding for minds like ours. She develops this idea in terms of two criteria for the success of our explanations: “understanding how” and “understanding why.” These criteria can respectively be connected to the determinateness and contrastivity of explanations. The crucial (...) role Du Châtelet’s principle of sufficient reason plays in identifying good explanations is often overlooked in the literature, or else run together with questions about the justification and likelihood of explanations. An auxiliary goal of the article is to situate Du Châtelet’s principle of sufficient reason with respect to some of the general epistemological and metaphysical commitments of her Institutions de Physique, clarifying how it fits into the broader project of that work. (shrink)

The coupling-constitution fallacy claims that arguments for extended cognition involve the inference of “x and y constitute z” from “x is coupled to y” and that such inferences are fallacious. We argue that the coupling-constitution fallacy fails in its goal to undermine the hypothesis of extended cognition: appeal to the coupling-constitution fallacy to rule out possible empirical counterexamples to intracranialism is fallacious. We demonstrate that appeals to coupling-constitution worries are problematic by constructing the fallacious argument against the hypothesis of extended (...) cognition. We consider several objections to our argument and find them insufficient to rebut our conclusion. (shrink)

Patent landscaping is the process of finding patents related to a particular topic. It is important for companies, investors, governments, and academics seeking to gauge innovation and assess risk. However, there is no broadly recognized best approach to landscaping. Frequently, patent landscaping is a bespoke human-driven process that relies heavily on complex queries over bibliographic patent databases. In this paper, we present Automated Patent Landscaping, an approach that jointly leverages human domain expertise, heuristics based on patent metadata, and machine learning (...) to generate high-quality patent landscapes with minimal effort. In particular, this paper describes a flexible automated methodology to construct a patent landscape for a topic based on an initial seed set of patents. This approach takes human-selected seed patents that are representative of a topic, such as operating systems, and uses structure inherent in patent data such as references and class codes to “expand” the seed set to a set of “probably-related” patents and anti-seed “probably-unrelated” patents. The expanded set of patents is then pruned with a semi-supervised machine learning model trained on seed and anti-seed patents. This removes patents from the expanded set that are unrelated to the topic and ensures a comprehensive and accurate landscape. (shrink)

Counter-terrorism officials in the USA and the UK responded to the events of 11 September 2001 and 7 July 2005 with an increasing resort to the use of ?intelligence-led policing? methods such as racial and religious profiling. Reliance on intelligence, to the effect that most people who commit a certain crime have a certain ethnicity, can lead to less favourable treatment of an individual with that ethnicity because of his membership in that group, not because of any act he is (...) suspected or known to have committed. This paper explains the context in which intelligence-led policing flourishes, and how this discussion contributes to the profiling debate in both the USA and the UK, and then sets out two key contentions. First, we argue that Article 14 ECHR as applied under the UK Human Rights Act has a more protective, and less ?prosecutorial?, conception of discrimination than has the US Equal Protection Clause, meaning that judges need not find a discriminatory motive to find that discrimination has occurred. Second, we contend that Article 14 provides the judiciary with the key tool of proportionality, which, when properly applied, makes it harder for discrimination to stand up to scrutiny. (shrink)

There is a tension in Emilie Du Châtelet’s thought on mathematics. The objects of mathematics are ideal or fictional entities; nevertheless, mathematics is presented as indispensable for an account of the physical world. After outlining Du Châtelet’s position, and showing how she departs from Christian Wolff’s pessimism about Newtonian mathematical physics, I show that the tension in her position is only apparent. Du Châtelet has a worked-out defense of the explanatory and epistemic need for mathematical objects, consistent with their metaphysical (...) nonfundamentality. I conclude by sketching how Du Châtelet’s conception of mathematical indispensability differs interestingly from many contemporary approaches. (shrink)

According to Thomas Reid, every act of mind is accompanied by a conception of its object. For instance, he holds that the thing one conceives in an act of perception is always an individual thing that exists, and that the thing one conceives in an act of judgment is the thing expressed by the proposition judged. However, Reid never is clear about what kind of thing is expressed by a proposition; neither is it clear from the existing literature on Reid. (...) What he says about judgments, propositions, and general conceptions together suggests four distinct candidates. But I will argue that each of these candidates either fails to have sufficient textual support, or leads to absurd conclusions (such as that we conceive semi-existent things). In conclusion, I argue that while Reid does not offer an account of the kind of conception accompanying judgments, his writings leave the matter open. (shrink)

Recommended: Edo Airoldi, David M. Blei, Stephen E. Fienberg, Anna Goldenberg, Eric P. Xing and Alice X. Zheng (eds.), Statistical Network Analysis: Models, Issues, and New Directions [Disclaimer: contains one of my papers .] Aaron Clauset and Cristopher Moore, "Accuracy and Scaling Phenomena in Internet Mapping", cond-mat/0410059 = Physical Review Letters 94 (2005).

In this paper I argue that, according to Peirce’s mature account of perception, we directly perceive generals, or "Thirds," in external reality which should be described as physical and not as mental. I argue against three other interpretations of the role of Thirdness in Peirce’s account: (I) we do not directly perceive Thirds, although they are involved in the interpretive and judgmental part of perception; (II) we directly perceive Thirds, but they are imposed on external objects by our minds; and (...) (III) we directly perceive Thirds in external objects, but external reality is comprised of the representations of an objective mind. I address questions about the role of the percept and the percipuum in his account, in what exact sense he thought that perception is interpretive, and how he thought it is even possible to directly perceive generals in the external world. (shrink)

A theory of fairness in international trade should answer at least three questions. What, at the basic level, are we to assess as fair or unfair in the trade context? What sort of fairness issue does this basic subject of assessment raise? And, what moral principles must be fulfilled if trade is to be fair in the relevant sense? This discussion presents answers to these questions that derive from a “constructivist” methodology inspired by John Rawls and the social contract tradition.

Jordi Fernández has recently responded to my objection that his 'extrospectionist' account of self-knowledge posits necessary and sufficient conditions for introspective justification which are neither necessary nor sufficient. I show that my criticisms survive his response unscathed.

How do we know right from wrong? Do we even have moral knowledge? Moral epistemology studies these and related questions about our understanding of virtue and vice. It is one of philosophy’s perennial problems, reaching back to Plato, Aristotle, Aquinas, Locke, Hume and Kant, and has recently been the subject of intense debate as a result of findings in developmental and social psychology. Throughout the book Zimmerman argues that our belief in moral knowledge can survive sceptical challenges. He also draws (...) on a rich range of examples from Plato’s Meno and Dickens’ David Copperfield to Bernard Madoff and Saddam Hussein. (shrink)

Investments in mitigating climate change have their greatest environmental impact over the long term. As a consequence the incentives to invest in cutting greenhouse gas emissions today appear to be weak. In response to this challenge, there has been increasing attention given to the idea that current generations can be motivated to start financing mitigation at much higher levels today by shifting these costs to the future through national debt. Shifting costs to the future in this way benefits future generations (...) by break- ing existing patterns of delaying large-scale investment in low-carbon energy and efficiency. As we will see in this chapter, it does appear to be technically feasible to transfer the costs of investments made today to the future in such a way that people alive today do not incur any net cost. the aim of this chapter is to take seriously the possibility that climate change has produced an extremely intractable political problem and that we must now consider strong measures that can break existing patterns of delaying mitigation. I defend the claim that if climate change involves a stark conflict of interests between current and future generations, then borrowing from the future would be both strategically and normatively much better than the status quo. Nevertheless, I challenge the borrowing from the future proposal on the grounds that it is not in fact the powerful tool for motivating existing agents that its proponents imagine it to be. The purpose of developing this critical argument is not, however, simply to throw doubt onto the idea of borrowing from the future. If we really do find ourselves in a political context where the prospects for effective action are very poor then strategic forms of buck-passing may make an important positive contribution to avoiding dangerous global cli- mate change. Consequently, if debt financing is not as powerful of a motivational tool as imagined we still have strong reasons, I will argue, to identify other strategies that will change agents’ incentive structures. To this end, I propose an alternative form of passing on the costs of mitigation to the future that warrants consideration. (shrink)

The left ventricular assist device was originally designed to be surgically implanted as a bridge to transplantation for patients with chronic end-stage heart failure. On the basis of the REMATCH trial, the US Food and Drug Administration and the US Centers for Medicare & Medicaid Services approved permanent implantation of the left ventricular assist device as a destination therapy in Medicare beneficiaries who are not candidates for heart transplantation. The use of the left ventricular assist device as a destination therapy (...) raises certain ethical challenges. Left ventricular assist devices can prolong the survival of average recipients compared with optimal medical management of chronic end-stage heart failure. However, the overall quality of life can be adversely affected in some recipients because of serious infections, neurologic complications, and device malfunction. Left ventricular assist devices alter end-of-life trajectories. The caregivers of recipients may experience significant burden (e.g., poor physical health, depression, anxiety, and posttraumatic stress disorder) from destination therapy with left ventricular assist devices. There are also social and financial ramifications for recipients and their families. We advocate early utilization of a palliative care approach and outline prerequisite conditions so that consenting for the use of a left ventricular assist device as a destination therapy is a well informed process. These conditions include: (1) direct participation of a multidisciplinary care team, including palliative care specialists, (2) a concise plan of care for anticipated device-related complications, (3) careful surveillance and counseling for caregiver burden, (4) advance-care planning for anticipated end-of-life trajectories and timing of device deactivation, and (5) a plan to address the long-term financial burden on patients, families, and caregivers. Short-term mechanical circulatory devices (e.g. percutaneous cardiopulmonary bypass, percutaneous ventricular assist devices, etc.) can be initiated in emergency situations as a bridge to permanent implantation of ventricular assist devices in chronic end-stage heart failure. In the absence of first-person (patient) consent, presumed consent or surrogate consent should be used cautiously for the initiation of short-term mechanical circulatory devices in emergency situations as a bridge to permanent implantation of left ventricular assist devices. Future clinical studies of destination therapy with left ventricular assist devices should include measures of recipients' quality of end-of-life care and caregivers' burden. (shrink)

In this paper, I investigate backward-looking accounts of death's badness. I begin by reviewing deprivationism—the standard, forward-looking account of death's badness. On deprivationism, death is bad for its victims when it deprives them of a good future. This account famously faces two problems—Lucretius’s symmetry problem and the preemption problem. This motivates turning to backward-looking accounts of death's badness on which death is bad for its victim (in a respect) when it involves a decline from a good life. I distinguish three (...) different backward-looking accounts of death's badness in terms of decline, and I argue for the attractiveness of one in particular. I conclude by considering how the backward-looking consideration of decline might factor into our overall account of death's badness. (shrink)

A peculiar feature of Hutcheson’s system is his claim that there exist no original pains in the imagination, and hence no real displeasures concerning form or beauty. This position, when set against a clear emphasis upon the pains of the moral sense in apprehending evil, seems to render tenuous his frequent analogies between the experiences of beauty and goodness. In light of this apparent discrepancy in Hutcheson’s argument, the repeated use of the term “moral beauty” presents interpretive difficulties, particularly on (...) the matter of whether, and in what way, goodness is itself a species of beauty. These problems can be surmounted by way of close attention to Hutcheson’s connection and ordering of the various “senses.” On the present interpretation, Hutcheson denies formal displeasure aspart of a broader theological argument concerning the moral function of the imagination. On this view, “moral beauty” is a special type of imaginative pleasure. (shrink)

Too often the study of philosophical texts is carried out in ways that do not pay significant attention to how the ideas contained within them are presented, articulated, and developed. This was not always the case. The contributors to this collected work consider Jewish philosophy in the medieval period, when new genres and forms of written expression were flourishing in the wake of renewed interest in ancient philosophy. Many medieval Jewish philosophers were highly accomplished poets, for example, and made conscious (...) efforts to write in a poetic style. This volume turns attention to the connections that medieval Jewish thinkers made between the literary, the exegetical, the philosophical, and the mystical to shed light on the creativity and diversity of medieval thought. As they broaden the scope of what counts as medieval Jewish philosophy, the essays collected here consider questions about how an argument is formed, how text is put into the service of philosophy, and the social and intellectual environment in which philosophical texts were produced. (shrink)

_ Source: _Page Count 21 This paper develops John Rawls’s famous objection to the system of natural liberty as against the contemporary system of international trade. Even as “dynamic” policies have proven successful in several recent development success stories, the current system enforces a “static,” laissez-faire system of comparative advantage that threatens to consign poorly-endowed countries to a low-productivity, low-income destiny in agriculture and raw materials. I discuss two very different fairness arguments in favor of allowing and encouraging “dynamic,” pro-development (...) polices: an argument from “structural equity” and an argument from “equity of fortune.” I suggest that the former is of more central importance, and that the difference between the two kinds of fairness argument shows why Rawls’s original objection to the system of natural liberty does not imply “luck egalitarianism.”. (shrink)