Making data broadly accessible is essential to creating a medical information commons. Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.

Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...) groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers. (shrink)

BackgroundDecision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions. A systematic review of reasoning identified the range of reasons clinicians give in the literature when initiating technology dependence in a child, and as a result helps determine the (...) range of influences on these decisions.MethodsMedline, EMBASE, CINAHL, PsychINFO, Web of Science, ASSIA and Global Health Library databases were searched to identify all reasons given for the initiation of technology dependence in a child. Each reason was coded as a broad and narrow reason type, and whether it supported or rejected technology dependence.Results53 relevant papers were retained from 1604 publications, containing 116 broad reason types and 383 narrow reason types. These were grouped into broad thematic categories: clinical factors, quality of life factors, moral imperatives and duty and personal values; and whether they supported, rejected or described the initiation of technology dependence. The majority were conceptual or discussion papers, less than a third were empirical studies. Most discussed neonates and focused on end-of-life care.ConclusionsThere is a lack of empirical studies on this topic, scant knowledge about the experience of older children and their families in particular; and little written on choices made outside ‘end-of-life’ care. This review provides a sound basis for empirical research into the important influences on a child’s potential technology dependence. (shrink)

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Although children learn more when teachers gesture, it is not clear how gesture supports learning. Here, we sought to investigate the nature of the memory processes that underlie the observed benefits of gesture on lasting learning. We hypothesized that instruction with gesture might create memory representations that are particularly resistant to interference. We investigated this possibility in a classroom study with 402 second‐ and third‐grade children. Participants received classroom‐level instruction in mathematical equivalence using videos with or without accompanying gesture. After (...) instruction, children solved problems that were either visually similar to the problems that were taught, and consistent with an operational interpretation of the equal sign (interference), or visually distinct from equivalence problems and without an equal sign (control) in order to assess the role of gesture in resisting interference after learning. Gesture facilitated learning, but the effects of gesture and interference varied depending on type of problem being solved and the strategies that children used to solve problems prior to instruction. Some children benefitted from gesture, while others did not. These findings have implications for understanding the mechanisms underlying the beneficial effect of gesture on mathematical learning, revealing that gesture does not work via a general mechanism like enhancing attention or engagement that would apply to children with all forms of prior knowledge. (shrink)

The free market theory has as its basis the assumption of equity. This equity is ascribed to both purchasers and providers in a perfectly balanced system so that there are seen to be no 'winners' or 'losers' in the market-place. The health system that is developing in the UK is structured as a managed market, but agency relationships between GPs and health authorities buffer the costing process of goods and therefore may be described as distorting the price. This could also (...) be distorting the ability of the users, who are the real purchasers, from exercising their economic freedom. They may also lose the autonomy to choose goods that suit their particular needs, and equally not to choose those services that they do not want or wish to pay for vicariously (i.e. that the common good is respected by both providers and purchasers). This assumes that users of the service know the level of choice that they have and that not only are providers protected at present by the practices of the purchasers but also entry into the market for new providers is severely curtailed. The exercise of true freedom of the market in economic terms is one of moral obliga tion to provide services that not only have a market value that is affordable and a require ment of the 'common good' but also are historically acceptable for social requirements (i.e. that the services are valued as fundamental tenets of the rights of individuals in soci ety). The expression of this need will therefore be utilitarian (i.e. the users of the services should benefit from them rather than the providers). (shrink)

Providing efficient and clean power is a challenge for devices that range from the micro to macro in scale. Although there has been significant progress in the development of micro-, meso-, and macro-scale power supplies and technologies, realization of many devices is limited by the inability of power supplies to scale with the diminishing sizes of CMOS-based technology. Here, the authors provide an overview of piezoelectric energy harvesting technology along with a discussion of proof of concept devices, relevant governing equations, (...) and figures of merit. They present two case studies: (a) energy capture from the operation of a novel shear and elastic modulus indentation device subjected to applied voltage and (b) energy capture from vibrating commercial bimorph piezoelectric structures mounted on household appliances. Lastly, areas of development needed for realization of commercial energy harvesting devices are suggested. (shrink)

A dearth of literature focuses on the relationship between acculturation, power distance and liminality for migrant nurses entering foreign workplaces. Expectations are for migrant nurses to be practice‐ready swiftly. However, this aspiration is naïve given the complex shifts that occur in deeply held cultural beliefs and practices and is dependent on an organisational climate of reciprocal willingness to adapt and learn. This exploratory study identified that although a plethora of literature addresses challenges migrant nurses face, there are limited data that (...) link these transitional processes to concepts that might usefully guide transitions. This study draws from the overarching concept of acculturation, together with Hofstede's (2011) notion of power distance and the theory of liminality to explore the experiences of eight migrant nurses. Data highlighted that adjusting to altered hierarchical relationships took many months because negotiating power distance challenged deeply held beliefs and assumptions about professional and organisational hierarchies. Migrant nurses’ accounts indicated a paucity of organisational processes to address these difficulties; therefore, they navigated this liminal space of adjustment to power distance differences in an ad hoc manner. Their acculturation experiences, arguably unnecessarily prolonged, indicate the value in workplace commitment to exploring a collaborative, critically reflective approach to optimise transitions. (shrink)

A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

In lieu of an abstract, here is a brief excerpt of the content:240 Feminist Studies 45, no. 1. © 2019 by Mary Anna Evans Mary Anna Evans Personal Continuum The scent of gasoline is neither attractive nor repulsive. It falls somewhere on the continuum between. It is medicinal, but without the acrid bitterness of medicine. It draws children like a drug, but only when their parents aren’t hovering to warn of danger. Adults know about fire and poisoning and (...) long-range carcinogenic doom. Children only know that the odor around gas pumps smells naughty and fun, until their lips open and the flavor of petroleum turns their stomachs. Why do some things smell so much better than they taste? Gasoline, unlike honey, draws humans but not flies. Sarah was not thinking of fire, poisoning, or doom when she fitted the long metal nozzle into the mouth of her car’s fuel tank. She was trying not to think at all, though the customary thoughts slipped in. None of them were about gasoline. The pump’s air pollution control system was working well but not perfectly, so it took a moment for the odor to reach her nose. Her body roused and snarled at her. The baby. What are you thinking? If you breathe those fumes, what will they do to the baby? A moment passed while her body checked itself, remembering what it already knew. There was no baby. Where is the baby? Mary Anna Evans 241 The frantic voice didn’t echo between her ears. It had nothing to do with her brain at all. It was more than thought. It came from a place deeper than thought, and it wasn’t hers. Her body said things she didn’t want to say, and it needed things she didn’t need. Her body wanted things that were not good for her. Again, Where is the baby? And then, the darker question. What did you do? “Nothing,” she said aloud, since there was no one to hear. I didn’t do anything but bleed. I’m still bleeding. She resisted the instinct to clap her hands over her ears to shut out the voice that couldn’t be shut out. Her defiant hold on the nozzle kept her upright. She listened to the rhythmic throb of the pump. Refusing to turn her face from the gasoline’s stench, she opened her mouth and let the fumes seep in. * * * “Hello, sweetheart,” Frederick said as he came in the door. His peck on the cheek didn’t linger, so Sarah knew there would be no more expressions of affection that day. He had read in a self-help book that it was important for couples to use terms of endearment as a form of bonding. Physical displays of affection were important, too, or so said the self-affirmed relationship expert who wrote the book. In public, displays of affection affirmed the pair bond. In private, even a quick smooch forced men and women to secrete an attachment chemical called oxy-whatever. Oh, hell. She was a chemist. She knew what oxytocin was. She was just mystified by the notion of reading a book to find out how to get some. He turned away and went into the kitchen to fetch the marinating chicken. He always grilled when it was his night to cook. She had come to wonder whether modern men were drawn to cook with fire by an ageold hunter instinct, or whether they were attracted to an activity that put a well-insulated exterior wall between them and the women who remained inside to toss the salads. All across America, every warm summer night, lonely women toss salads and hope for romance. His head poked in the back door. “I bought slivered almonds and croutons.” 242 Mary Anna Evans Her “Thanks for remembering, sweetheart,” bounced off the closing door. Shit. She could have spared herself that soulless term of endearment. Leaving the lettuce in the refrigerator, she thrust her soapy hands under warm running water, because even thinking the word “shit” made the idea of handling raw food appalling. Her body, which had forgotten again that she’d lost the baby, approved of her caution. She guarded her thoughts against disturbing its... (shrink)

Language for God explores the ways language and images influence who we are and how we live. It declares the necessity of language and images for God that are expansive and inclusive of all genders. Lutheran perspectives are used as a compass to offer scriptural, theological, and historical insights to advance the reformation of Christian language.

Richard Lennan’s Tilling the Church treats ecclesial conflict, the possibility of change, and the tensions involved. He acknowledges the resistance to development within the Church’s structures. This resistance helps to explain the church’s distrust of women, which frustrates many Catholics. Cornell philosopher Kate Manne puts resistance to change in context by describing the social expectations of women, by showing that those who resist change feel entitled to do so, and by revealing how victimization is legitimated. “Tilling the church” is an (...) apt metaphor for transformation that does not sufficiently appreciate socially-mediated systems of privilege and vulnerability. (shrink)

The past decade has seen a burgeoning of scholarly interest in conscientious objection in healthcare. While the literature to date has focused primarily on individual healthcare practitioners who object to participation in morally controversial procedures, in this article we consider a different albeit related issue, namely, whether publicly funded healthcare institutions should be required to provide morally controversial services such as abortions, emergency contraception, voluntary sterilizations, and voluntary euthanasia. Substantive debates about institutional responsibility have remained largely at the level of (...) first-order ethical debate over medical practices which institutions have refused to offer; in this article, we argue that more fundamental questions about the metaphysics of institutions provide a neglected avenue for understanding the basis of institutional conscientious objection. To do so, we articulate a metaphysical model of institutional conscience, and consider three well-known arguments for undermining institutional conscientious objection in light of this model. We show how our metaphysical analysis of institutions creates difficulties for justifying sanctions on institutions that conscientiously object. Thus, we argue, questions about the metaphysics of institutions are deserving of serious attention from both critics and defenders of institutional conscientious objection. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 14.4 (2004) 411-425 [Access article in PDF] Vulnerability, Vulnerable Populations, and Policy Mary C. Ruof "Special justification is required for inviting vulnerable individuals to serve as research subjects and, if they are selected, the means of protecting their rights and welfare must be strictly applied."Guideline 13: Research Involving Vulnerable Persons International Ethical Guidelines for Biomedical Research Involving Human Subjects Council for International Organizations (...) of Medical Sciences (CIOMS) and World Health Organization (WHO) Geneva, Switzerland, 2002 Within medical research and healthcare certain groups are afforded special protections and services because of their designation as vulnerable. The vulnerable require special justification to participate in human subject research in order to eliminate potential human rights abuses. The Nuremberg Code of 1947 was written in response to the extreme human subject abuses that occurred under the Nazi regime, and, although the intent of the 1947 Code was to protect human rights, rigid voluntary consent requirements deprived some individuals of the right to participate in clinical trials. Recent human research guidelines, such as the CIOMS/WHO guidelines referenced above and the guidelines referenced in Section V of this Scope Note, attempt to balance both protection from abuse in research and access to new, experimental treatments for the vulnerable.Although various protective guidelines stipulate special protections for vulnerable populations, the concept of vulnerability and consequently the criteria designating vulnerable populations remain vague. Precisely who are the vulnerable? The word "vulnerability" stems from the Latin vulnerare, "to wound." (Oxford Encyclopedic English Dictionary 1995). In clinical research, the term [End Page 411] vulnerable generally is applied to individuals who are unable to give informed consent or who are susceptible to coercion. The Common Rule (45 CFR 46, Subpart A) includes as vulnerable research subjects: children, prisoners, pregnant women, and persons who are handicapped, mentally disabled, economically disadvantaged, or educationally disadvantaged. Although the Common Rule specifies certain vulnerable categories, the guidelines were not intended to be exclusive, leaving open the interpretation of vulnerability.In medical research and health policy, vulnerability is an abstract concept that has concrete effects both for those labeled vulnerable and for those not. Clinical researchers, healthcare workers, ethical reviewers, and policymakers must be able to identify vulnerable subjects to establish how healthcare resources will be allocated and who will qualify for special protections and socialized benefits. Attempts to quantify vulnerability in clear, measurable ways have met little if any consensus. As Alexander Morawa (II, 2003, p. 150) states, "There is no single approach to definition of vulnerability. In fact, there is no purposeful categorisation at all."Difficulties in defining vulnerability have prompted discourse surrounding its utility as a qualifying factor in the allocation of health resources and its appropriateness as a guiding principle in bioethics. Some of the authors cited in this Scope Note argue against the labeling and categorization of vulnerable individuals and populations. "Labeling individuals as 'vulnerable' risks viewing vulnerable individuals as 'others' worthy of pity, a view rarely appreciated" (III, Danis and Patrick 2002, p. 320). The categories of vulnerable groups listed under the Common Rule have been the source of controversy, "for example, many find the suggestion that pregnant women are vulnerable to be quite sexist" (IV, DeBruin 2001, p. 7). Instead of creating categories of vulnerable populations, would it not be better to derive an account of just treatment from a just social policy at large that encompasses human vulnerabilities (II, Brock 2002, p. 283).For some of the authors listed here, the concept of vulnerability is essential to bioethics. Robert Goodin (I, 1985, p. 107) writes that the vulnerability of other human beings is the source of our special responsibilities to them. In contrast to the four American principles of biomedical ethics—autonomy, nonmaleficence, beneficence, and justice—the four principles of European bioethics and biolaw include vulnerability along with autonomy, dignity, and integrity. According to, Jacob Dahl Rendtorff and Peter Kemp (I, 2000, p. 274) "the principle of vulnerability is ontologically prior to the other [European] principles, it expresses better than all of the other ethical principles... the finitude of the human condition."Some of the... (shrink)

Erich Hatala Matthes’s (2021)Drawing the Line is about what we ought to do when we discover that an artist whom we love has committed a great moral wrong. As it turns out, Matthes and I agree almost entirely on the moral obligations of the individual consumer. We both agree that it is necessary to ascertain whether the life of the artist affects the aesthetic quality of their work, and that we should attend to how continuing to engage with their work (...) publicly expresses our ethical values. Both of us wind up with a morally permissive stance, according to which individuals can, in some contexts, continue to engage with the artwork of immoral artists.There is one distinct difference in how we approached the problem. Matthes took up the question of the role and responsibility of institutions in his third chapter, a question I set aside almost entirely. In this article, I want to delve more deeply into the question of art institutions and their responsibilities to reform themselves. I will argue that the nature of aesthetic practice means that it is harder for an institution to tread the desirable middle ground between uncritically endorsing an immoral artist and cancelling them. (shrink)

Preservationism is a dominant account of the justification of beliefs formed on the basis of memory. According to preservationism, a memory belief is justified only if that belief was justified when it was initially held. However, we now know that much of what we remember is not explicitly stored, but instead reconstructed when we attempt to recall it. Since reconstructive memory beliefs may not have been continuously held by the agent, or never held before at all, a purely preservationist account (...) of memory does not allow for justified reconstructed memory beliefs. In this essay, I show how a process reliabilist account can maintain preservationism about reproductive memory beliefs while accommodating the justification of reconstructive memory beliefs. I argue that reconstructive memory is an inferential process, and that therefore the beliefs it produces are justified in the same way that other inferential beliefs are justified. Accordingly, my process reliabilist account combines a preservationist account of reproductive memory with an inferential account of reconstructive memory. I end by defending this view against objections. (shrink)

This book is an extensive survey and critical examination of the literature on the use of expert opinion in scientific inquiry and policy making. The elicitation, representation, and use of expert opinion is increasingly important for two reasons: advancing technology leads to more and more complex decision problems, and technologists are turning in greater numbers to "expert systems" and other similar artifacts of artificial intelligence. Cooke here considers how expert opinion is being used today, how an expert's uncertainty is (...) or should be represented, how people do or should reason with uncertainty, how the quality and usefulness of expert opinion can be assessed, and how the views of several experts might be combined. He argues for the importance of developing practical models with a transparent mathematic foundation for the use of expert opinion in science, and presents three tested models, termed "classical," "Bayesian," and "psychological scaling." Detailed case studies illustrate how they can be applied to a diversity of real problems in engineering and planning. (shrink)

One hundred years after Gestalt views first took hold our understanding of how perceptual processes organize the visual field into objects and their local backgrounds has progressed substantially. We now know that in addition to the image-based properties that the Gestalt psychologists identified as relevant, a myriad of other image-based factors influence figure–ground organization, as do subjective factors such as past experience, attention, and intentions. Moreover, properties of grounds as well as properties of figures play a role. The recent use (...) of indirect measures and brain imaging techniques has revealed that there is much more processing of the regions ultimately perceived as grounds than is supposed in traditional approaches, and that competition and feedback are involved in figure–ground organization. These recent advances offer great promise for uncovering the mechanisms that organize the visual field into figures and grounds. (shrink)

In this paper, we examine recent critiques of the debate about defining disease, which claim that its use of conceptual analysis embeds the problematic assumption that the concept is classically structured. These critiques suggest, instead, developing plural stipulative definitions. Although we substantially agree with these critiques, we resist their implication that no general definition of “disease” is possible. We offer an alternative, inductive argument that disease cannot be classically defined and that the best explanation for this is that the concept (...) is structured as a cluster. We further argue that we do not need to reject the possibility of defining the general concept “disease” to legitimate developing stipulative definitions of disease that are relative to particular purposes. A cluster definition of disease is compatible with contextually motivated definitions, which may be considered précisifications of the more general cluster concept. (shrink)

Known as the “Mother of Tibetan Buddhism” and the “Mother of Knowledge,” Yeshe Tsogyal built upon indigenous Bön philosophy and Mahāyāna Buddhism to bring about a Buddhism that is identifiably Tibetan. I report on her life, her works and teaching. Then summarize her significance as a philosopher of Tibetan Buddhist metaphysics, epistemology and ethics. Lastly, I append portions of several writings attributed to her.

I. Immanuel Kant claims that the existence of God cannot be proved by speculative theology, yet that speculative theology is the only means by which the existence of God can definitively be proved. All knowledge, Kant argues, including that of God’s existence, must be based on the forms of possible experience or deduced from premises known to be true: in the case of the existence of God, however, the former is impossible because God transcends experience, and the latter is impossible (...) because the premises themselves, to be known to be true, would have to be grounded in possible experience, while, by the very nature of the question, possible experience has been excluded. Thus, the existence of God cannot be known in the usual sense, that is, by means of the theoretical employment of reason. (shrink)

The distinction of fact and value and the problems entailed by it are concerns only for modern, Western thought. The distinction is supported by Kant, who, however, also attempts to solve its consequent problems. His first attempt is made by arguing that the standard of value is itself a fact. This brings fact and value together, but only in an intelligible world. Kant's second attempt is found in the third Critique in the argument that man, as both rational and animal, (...) must view the world in teleological terms; so doing advances the task of science, finds support in objects of natural beauty, and leads to the creation of beauty in art. Thus, ultimately, the highest complete good, a world under moral laws is itself seen as in fact really possible as the final goal of human creative artistic activity. (shrink)

_Imagination_ is an outstanding contribution to a notoriously elusive and confusing subject. It skillfully interrelates problems in philosophy, the history of ideas and literary theory and criticism, tracing the evolution of the concept of imagination from Hume and Kant in the eighteenth century to Ryle, Sartre and Wittgenstein in the twentieth. She strongly belies that the cultivation of imagination should be the chief aim of education and one of her objectives in writing the book has been to put forward reasons (...) why this is so. Purely philosophical treatment of the concept is shown to be related to its use in the work of Coleridge and Wordsworth, who she considers to be the creators of a new kind of awareness with more than literary implications. The purpose of her historical account is to suggest that the role of imagination in our perception and thought is more pervasive than may at first sight appear, and that the thread she traces is an important link joining apparently different areas of our experience. She argues that imagination is an essential element in both our awareness of the world and our attaching of value to it. (shrink)

Language and Reason opens up new territory for social theorists by providing thefirst general introduction to Habermas's program of formal pragmatics: his reconstruction of theuniversal principles of possible understanding that, he argues, ...

Cognition in work teams has been predominantly understood and explained in terms of shared cognition with a focus on the similarity of static knowledge structures across individual team members. Inspired by the current zeitgeist in cognitive science, as well as by empirical data and pragmatic concerns, we offer an alternative theory of team cognition. Interactive Team Cognition (ITC) theory posits that (1) team cognition is an activity, not a property or a product; (2) team cognition should be measured and studied (...) at the team level; and (3) team cognition is inextricably tied to context. There are implications of ITC for theory building, modeling, measurement, and applications that make teams more effective performers. (shrink)