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...

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...

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)

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)

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.

This collection of essays is the first of its kind to focus on the relationship between composition and identity. Twelve original articles--written by internationally renowned scholars and rising stars in the field--argue for and against the controversial doctrine that composition is identity.--Provided by publisher.

This paper is a systematic exploration of non-wellfounded mereology. Motivations and applications suggested in the literature are considered. Some are exotic like Borges’ Aleph, and the Trinity; other examples are less so, like time traveling bricks, and even Geach’s Tibbles the Cat. The authors point out that the transitivity of non-wellfounded parthood is inconsistent with extensionality. A non-wellfounded mereology is developed with careful consideration paid to rival notions of supplementation and fusion. Two equivalent axiomatizations are given, and are compared to (...) classical mereology. We provide a class of models with respect to which the non-wellfounded mereology is sound and complete. (shrink)

Ontological pluralism holds that there are different ways of being. Truth pluralism holds that there are different ways of being true. Both views have received growing attention in recent literature, but so far there has been very little discussion of the connections between the views. The authors suggest that motivations typically given for truth pluralism have analogue motivations for ontological pluralism; they argue that while neither view entails the other, those who hold one view and wish to hold the other (...) will find natural routes by which to do so. The authors additionally identify some disanalogies between the views, by considering whether certain “mixed” problems commonly pressed against truth pluralism have analogues for ontological pluralism. (shrink)

Robert Card criticises our proposal for managing some conscientious objections in medicine. Unfortunately, he severely mischaracterises the nature of our proposal, its scope and its implications. He also overlooks the fact that our proposal is a compromise designed for a particular political context. We correct Card’s mischaracterisations, explain why we believe compromise is necessary and explain how we think proposed compromises should be evaluated.

Liberalism has a complicated and sometimes uneasy relationship with truth. On one hand, liberalism requires that truth be widely valued and widely shared. It demands that governments be truthful and that citizens have ready access to numerous truths. Some liberals even take facilitating the discovery and dissemination of truth to be part of the raison d’être of liberal institutions. On the other hand, liberalism is averse to proclaiming or enforcing truth. It detaches truth from political legitimacy and deems certain truths (...) unfit to serve as bases of government. Some liberals have even suggested that liberal theory must work “without the concept of truth.” How has liberalism come to both demand truth and eschew it? This introductory section provides the beginnings of an answer by surveying some of the origins and core elements of liberal thought. (shrink)

Iam appreciative of the thoughtful comments and the diversity of the commentators’ perspectives and backgrounds. I take Hoffman’s original argument about psychotropic medications as risking ‘hyponarrativity’ as my starting point and my reply to her critique will naturally lead to a discussion of psychotherapeutic approach, importance of weighing Mr. A’s underlying autism and important bioethical considerations.It is important to imbed this case within the acuity of its clinical context: This individual presented for psychiatric hospitalization in the context of a...

The ultimate language of madness is that of reason.In short, under the chaotic and manifest delirium reigns the order of a secret delirium. In this second delirium, which is, in a sense, pure reason, reason delivered of all the external tinsel of dementia, is located the paradoxical truth of madness. And this in a double sense, since we find here both what makes madness true and what makes it truly madness.At the urging of his parents, Mr. A, a college-age young (...) man with a past diagnosis of Asperger’s... (shrink)

When selecting approaches to pursuing social change, activists commonly evaluate the merits of individual approaches without considering the distributions of approaches already in their movements. This is a problem. I argue, from both general considerations about the division of cognitive labor and empirical evidence from sociology, that some distributions of approaches are better for movements than others and that activists can and should change these distributions for the better rather than for the worse.

This article interrogates the concepts of faith, the ethical, and tragedy in Fear and Trembling by examining Johannes De Silentio’s allusions to heroic characters. I argue that these heroes are emblematic of faith or tragedy through their orientation to a promise in their respective mythic narratives. Abraham’s faith in the covenant with God commits him to the reconcilability of virtue and the good life, while the tragic heroes’ commitments to the ethical reveal their inability to transcend the (tragic) presumption that (...) virtue and the good life are ultimately incommensurable. I conclude by sketching a politics corresponding to De Silentio’s conception of tragedy. (shrink)

Preview: /Aaron J. Wendland interviewed by Przemysław Bursztyka/ “What Good Is Philosophy?” took place on 17-19 March 2023, and it aimed to raise the funds required to establish a Centre for Civic Engagement at Kyiv Mohyla Academy. This Centre will provide support for academic and civic institutions in Ukraine to counteract the destabilizing impact that Russia’s invasion has had on Ukrainian higher education and civilian life. Keynotes at the conference were delivered by world-renowned author, Margaret Atwood, one of the (...) most celebrated scholars of Ukrainian history, Timothy Snyder, and two of Ukraine’s preeminent public intellectuals, Mychailo Wynnyckyj and Volodymyr Yermolenko. Lectures were also given by some of the most influential philosophers writing today, including Peter Adamson, Elizabeth Anderson, Seyla Benhabib, Agnes Callard, Quassim Cassam, Tim Crane, Simon Critchley, David Enoch, Peter Godfrey-Smith, Sally Haslanger, Angie Hobbs, Barry Lam, Melissa Lane, Dominic Lopes, Kate Manne, Jeff McMahan, Jennifer Nagel, Philip Pettit, Kieran Setiya, Jason Stanley, Timothy Williamson, and Jonathan Wolff. The closing remarks were delivered by Ukraine’s Ambassador to Canada, Yulia Kovaliv. This benefit event was designed to provide members of the public, individual academics, colleges and universities, professional associations, charitable foundations, and private companies with a way to support students, scholars, and civic institutions in Ukraine. The entire conference is now available to be viewed online via on the Munk School of Global Affairs and Public Policy’s YouTube channel. Here is the relevant link. I encourage everyone who watches the conference to make a donation to support students, scholars, and publicly engaged academics in Ukraine. All donations can be made here. And as the conference organizer, I am extremely grateful for any and every contribution to this cause. (shrink)

In recent years, Philosophy Departments at universities in China and worldwide have experienced a renaissance in discussion on Confucian thought. As the country draws from indigenous traditions, rather than leaning completely on the importation of Western liberalism and Marxism, Confucianism has critical implications for politics, ethics, and law in modern China. At the same time, democracy never left the conversation. Democratic concepts cannot be ignored and must be disposed of, acknowledged, or incorporated. The relationship between Confucianism and democracy has been (...) described by various authors as one of conflict, critique, compatibility, and hybridity. In this article, we examine a compatibility model, in which compatibility between Confucianism and democracy can be divided into four types: soft, hard, coexistence, and integration. We examine compatibility by examining “what is compatible” and “how compatibility can be achieved” so as to design speculative models for what a contemporary Confucian government would look like. Our focus is mainly political philosophy in order to explain the effect of cross-pollination of Confucian and democratic thought on political society. (shrink)