Participant-driven research is a burgeoning domain of research innovation, often facilitated by mobile technologies. Return of results and data are common hallmarks, grounded in transparency and data democracy. PDR has much to teach traditional research about these practices and successful engagement. Recommendations calling for new state laws governing research with mHealth modalities common in PDR and federal creation of review mechanisms, threaten to stifle valuable participant-driven innovation, including in return of results.

Developing ethical standards for clinical use of large-scale genome and exome sequencing has proven challenging, in part due to the inevitability of incidental or secondary findings. Policy of the American College of Medical Genetics and Genomics has evolved but remains problematic. In 2013, ACMG issued policy recommending mandatory analysis of 56 extra genes whenever sequencing was ordered for any indication, in order to ascertain positive findings in pathogenic and actionable genes. Widespread objection yielded a 2014 amendment allowing patients to opt-out (...) from analysis of the extra genes. In 2015, ACMG published the amended policy, providing that patients could opt out of the full set of extra genes, but not a subset. In 2016, ACMG enlarged the set and indicated planned expansion of the roster of extra genes to include pharmacogenetic findings. ACMG policy does not protect the respect for patient choice that prevails in other domains of clinical medicine, where informed consent allows patients to opt in to desired testing. By creating an expanding domain of genomic testing that will be routinely conducted unless patients reject the entire set of extra tests, ACMG creates an exceptional domain clinical practice that is not supported by ethics or science. (shrink)

Using the infamous research studies in Tuskegee and Guatemala, the article examines the difference between victims and bystanders. The victims can include families, sexual partners, and children not just the participants. There are also the bystanders in the populations who are affected, even vaguely, decades after the initial studies took place. Differing reparations for victims and bystanders through lawsuits and historical acknowledgments has to be part of broader discussions of historical justice, and the weighing of the impact of racism and (...) imperial research endeavors. (shrink)

This paper examines Hutcheson’s moral sense theory’s attack on internalism and his defense of an innovative version of externalism. I show that Hutcheson’s distinction between exciting and justifying reasons supports a type of externalist theory not anticipated by Brink, Smith, or McDowell. In Moral Sense Externalism, moral judgment relies upon the perceptions of a moral sense, and the felt quality of these perceptions introduces to judgment an affective dimension. Thus feeling is a constituitive part of what it is to have (...) a justifying reason for a moral act even when it is not the direct motive to action. (shrink)

How could it happen that the very processes intended to assure ethical research in Australia might, themselves, undermine good research practice?This paper describes one PhD candidate’s recent experiences of multicentre review for a Human Research Ethics Committee approved, low/negligible risk, qualitative study, at the crossroad of health services research and organisational research.A retrospective review of international literature about multi-centre review processes revealed that many of these experiences were not unique and might have been expected, notwithstanding Australian efforts at harmonisation of (...) multi-centre review. This paper examines not only the burden of red-tape that was applied to a small doctoral study, but also the way in which the red-tape threatened the anonymity of potential study participants and risked exposing them to undue pressure and distress.These experiences support the view that harmonisation initiatives have not yet developed as the Australian National Health and Medical Research Council may have hoped and that further attention is needed to harmonise research governance processes. (shrink)

Mouse models of human genetic disorders provide a valuable resource for investigating the pathogenesis of genetic disease and for testing potential therapies. The high degree of resolution of linkage mapping in the mouse allows mutant phenotypes to be mapped precisely which, combined with the accurate definition of areas of homology between the mouse and human genomes, greatly facilitates the identification of mouse models. We describe here mouse models of human single gene disorders dividing them into three categories depending on the (...) information available; phenotypic similarities, comparative mapping and identification of the underlying genetic lesion. (shrink)

Hutchesonʹs theories offer an objective referent for beauty linked with a subjective determination to be pleased. As Kenneth Winkler’s terminology suggests, Hutcheson is an eighteenth‐century aesthetic realist, a beauty realist, because the aesthetic object need not be identified with the natural object. I argue that this aesthetic realism helps to settle key disputes concerning moral qualities in the moral sense theory. The natural and automatic operation of the aesthetic and moral senses allows a role for new experiences of beauty and (...) virtue beyond their root forms, and permits a cultural refinement that remains true to a widely held, even if not universal, set of moral parameters for virtuous motivation. (shrink)

This research investigates the development of transferable - "adaptive" expertise. The study contrasts problem-solving performance of two kinds of experts (business consultants and restaurant managers) on novel problems at the intersection of their two domains, as well as a group of novices (non-business undergraduates). Despite a lack of restaurant experience, consultants performed better than restaurant managers and undergraduates, even though the problems concerned a restaurant. Process measures suggest this was due to the use of more theoretical reasoning. Analyses show this (...) resulted from differences in work experience and not other factors (e.g., education). We discuss aspects of experience that might be responsible for development of theoretical understanding and, thus, expertise that transfers to novel problems. One possible explanation, consistent with existing research from multiple approaches, is that to transfer to novel problems, experience must include substantive variability. The social context of learning may also play a role. (shrink)

In museum settings, caregivers support children's learning as they explore and interact with exhibits. Museums have developed exhibit design and facilitation strategies for promoting families' exploration and inquiry, but these strategies have rarely been contrasted. The goal of the current study was to investigate how prompts offered through staff facilitation vs. labels printed on exhibit components affected how family groups explored a circuit blocks exhibit, particularly whether children set and worked toward their own goals, and how caregivers were involved in (...) children's play. We compared whether children, their caregivers, or both set goals as they played together, and the actions they each took to connect the circuits. We found little difference in how families set goals between the two conditions, but did find significant differences in caregivers' actions, with caregivers in the facilitation condition making fewer actions to connect circuits while using the exhibit, compared to caregivers in the exhibit labels condition. The findings suggest that facilitated and written prompts shape the quality of caregiver-child interactions in distinct ways. (shrink)

A Skeptical View of the Liberal Peace reflects on the place of democracy in the global community. The article pays particular attention to the widespread assumption that there is an inherent relationship between democracy and peace, and that peace most assuredly is derived from democracy itself. I find these assertions to be highly questionable and overstated. Reflection on the philosophy which underpins these claims can only be helpful for international relations. In particular, given the United States’ apparent imperialistic urge to (...) force democracies on other nations as Iraq, the article seems especially timely. (shrink)

Adrienne Asch pioneered a way of doing bioethics that few are brave enough to attempt. In addition to summoning logic, arguing values, and applying reasoning to cases, Adrienne lived bioethics. Without compromising the strength of her analysis, she grounded that analysis explicitly in her own lived experience of disability. Hers was the view from somewhere—a deep invitation to others to rethink everything from embryo selection to end‐of‐life decisions through the lens of lived disability.

A critical difference between 1978, the first time the U.S. Supreme Court heard on its merits a case involving affirmative action policies (AAPs), and its 2003 revisiting of the issue was that the context for hearing the issue had significantly changed from that of medical education to that of undergraduate and law school programs. This shift in context mattered. I argue here that medicine has particular interests and insights into the problem of race, and in this, its participation in the (...) debate is critical not only for medical education and practice but for the development of sound judicial approaches to AAPs. (shrink)

_Hegel or Spinoza_ is the first English-language translation of the modern classic _Hegel ou Spinoza._ Published in French in 1979, it has been widely influential, particularly in the work of the philosophers Alain Badiou, Antonio Negri, and Gilles Deleuze. _Hegel or Spinoza_ is a surgically precise interrogation of the points of misreading of Spinoza by Hegel. Pierre Macherey explains the necessity of Hegel’s misreading in the kernel of thought that is “indigestible” for Hegel, which makes the Spinozist system move in (...) a way that Hegel cannot grasp. In doing so, Macherey exposes the limited and situated truth of Hegel’s perspective—which reveals more about Hegel himself than about his object of analysis. Against Hegel’s characterization of Spinoza’s work as immobile, Macherey offers a lively alternative that upsets the accepted historical progression of philosophical knowledge. He finds in Spinoza an immanent philosophy that is not subordinated to the guarantee of an a priori truth. Not simply authorizing a particular reading—a “good” Spinoza against a “bad” Hegel—_Hegel or Spinoza_ initiates an encounter that produces a new understanding, a common truth that emerges in the interval that separates the two. (shrink)

The Moral Economies of American Authorship argues that the moral character of authors became a kind of literary property within mid-nineteenth-century America's expanding print marketplace, shaping the construction, promotion, and reception of texts as well as of literary reputations.

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

Portable MRI for neuroimaging research in remote field settings can reach populations previously excluded from research, including communities underrepresented in current brain neuroscience databases and marginalized in health care. However, research conducted far from a medical institution and potentially in populations facing barriers to health care access raises the question of how to manage incidental findings (IFs) that may warrant clinical workup. Researchers should not withhold information about IFs from historically excluded and underserved population when members consent to receive it, (...) and instead should facilitate access to information and a pathway to clinical care. (shrink)

This piece explores the proposition that environmental restoration is the only acceptable alternative to a world left with diminishing natural regions. The article reviews the ethical debate concerning the moral obligation of humankind to restore regions that have been stripped of their resources. It demonstrates thatthrough the assistance of both legislative and technological measures nature can be renewed to spawn healthy ecosystems when permitted to do so. Furthermore, the article claims that the restoration thesis is proven by the paradigm of (...) the Adirondack region – a region that was once clear-cut and enabled to restore itself through both rewilding and the “Forever Wild” clause in the New York State Constitution. The article is particularly timely and provocative given the current Bush Administration’s environmental policies. (shrink)

Museums and collecting is now a major area of cultural studies. This selected group of key texts opens the investigation and appreciation of museum history. Edward Edwards, chief pioneer of municipal public libraries, chronicles the founders and early donors to the British Museum. Greenwood and Murray provide informative pictures of the early history of the museum movement. Sir William Flower, Director of the British Museum (Natural History), takes a pioneering philosophical approach to the sphere of natural history in relation to (...) museums. Similarly, Acland and Ruskin discuss and explore the relationships of art and architecture to museums. (shrink)

From the foregoing discussion we can note that whilst Marx transcends the fact-value distinction he embraces neither a scientistic approach nor a moral theory. Rather he gives a sociological account of morality, illustrating that description and evaluation cannot be separated and that juridical conceptions need to be understood in relation to the mode of production in which they arise.30 In the absence of an absolute notion of justice it is mistaken to see Marx as offering a critique of capitalism based (...) on moral principles. Of course Marx had reasons for attacking capitalism but these are contained within his account of the capitalist mode of production. Yet whilst this theory is not a moral theory it cannot be described as a descriptive theory either. In Marx's work description and evaluation cannot be meaningfully separated.In portraying Communist society as the solution to problems generated within capitalist society Marx is not sketching out a picture of a morally superior society but rather considering the possibilities of an alternative way of life with its own moral and judicial standards. Indeed the fact that Marx did not provide blueprints for future Communist society is itself symptomatic of his awareness of the difficulties involved in the attempt to describe in detail a form of social life based upon principles different from our own. (shrink)

In this paper I examine the particularist attack on deductive uses of moral principles, reviewing the critiques of the uniformity of moral reasons and impartiality in ethics, looking principally at arguments from Larry Blum, Jonathan Dancy, and Margaret Walker. I defend the action-guiding-ness of moral principles themselves, but consider various ways to accommodate the objections coming fromparticularism. I conclude that one objection to the impartialist theory of value must be conceded without qualification: generalism is unable to account for the unique (...) and irreplaceable value of individual persons. I present an example which supports my view andshows that, in the context of lived experience, replaceability is contradicted. Indeed there may be few constants of value in the narrative of one’s life, as experiences overlay supposed constants with continual new shading, and create even deeper sorts of transformation in valuing. In the end, both particularized moral judgment and the articulation of fact with principle contribute to moral discernment. (shrink)

Kant objects on principle to any duty of moral self-perfection that would aim at the moral self-perfection of another person. Yet, despite the apparent barrier posed by the introspective technique of self-perfecting effort, I argue that such a duty is both possible and desirable as a part of moral friendship. Through mutual sincere efforts at self-disclosure, we escape the prison of mutual distrust which otherwise characterizes social life and consolidate the very sincerity necessary for moral improvement.

In lieu of an abstract, here is a brief excerpt of the content:Hume Studies Volume XXIII, Number 2, November 1997, pp. 195-212 The Moral Self and the Indirect Passions SUSAN M. PURVIANCE David Hume1 and Immanuel Kant are celebrated for their clear-headed rejection of dogmatic metaphysics, Hume for rejecting traditional metaphysical positions on cause and effect, substance, and personal identity, Kant for rejecting all judgments of experience regarding the ultimate ground of objects and their relations, not just judgments of (...) cause and substantiality. Nevertheless, each argues that practical activity is not compromised by the rejection of metaphysical claims that others had taken to be crucial. Kant and Hume thought that political and moral life did not depend upon theoretical knowlege of the nature of the self, free will, or knowledge of the true motives of actions or the character of the agent. Because the grounds of morality and politics were too important to leave to the mercies of speculative metaphysics, each moved their foundations to higher ground, insulating the grounds of practical activity from the threat of metaphysical turmoil and skepticism. Contemporary philosophers have generally followed Hume and Kant in this regard, but often select very different strategies. Some think that the best way to avoid the problems associated with contemporary scientific ontologies is to separate ethics from the factual domain entirely. Some give moral and political language a noncognitivist interpretation, and others have interpreted values as a projection of the passions and affections of the subject or as the constructions of suitably situated practical reasoners.2 At the same time there has been a resurgence of interest in moral realism. Moral realists think that the objectivity of moral discourse, and hence the Susan M. Purviance is at the Department of Philosophy, The University of Toledo, Toledo OH 43606-3390 USA. 196 Susan M. Purviance possibility of moral truth, depend upon the existence of moral facts.3 Moral realists have tended to concentrate on the role of facts in establishing the truth of general moral principles, or the Tightness or moral value of particular individual actions. For moral realists, moral facts are the states of affairs that make general moral principles or particular moral judgments true. Whether these facts are of a naturalistic sort or not, whether they are literally on a par with natural facts, or whether they simply play the same role in practical knowledge that natural facts play in theoretical knowledge, is an open question. Moral realists often are naturalists, like David O. Brink and Jonathan Dancy, but they may be nonnaturalists, like G. E. Moore.4 Ethical naturalism accounts for moral motivation and the cultivation of good character in terms of moral qualities, and many hope to ground it in (or at least show that it is compatible with) the scientific understanding of objects and their relations and qualities. Naturalism is only one option, but realism has received support because it is not clear that antirealists have developed a convincing alternative to the grounding of concepts of moral agency and moral judgment in some sort of moral facts. Questions abound about what it means to ascribe responsibility to a moral self and how we can defend a notion of enduring character. Although moral realists have paid less attention to the ontological status of virtues and character traits than to moral principles, their status is equally important. Here the concern is with the sort of metaphysics of the self thought to be necessary to account for moral agency, responsibility, praise, and blame. I shall argue that there is a class of moral facts that justify or perhaps merely vindicate the ascription of moral powers to agents, and that these are the sorts of facts another sort of theorist is interested in, whereas the states of affairs that make moral judgments true are the sorts of facts that moral realists have been interested in. In order to distinguish this use of moral facts I shall call this sort of theory a Fact of Agency Theory, and it is a version of this theory that can be found in Hume's discussion of the problem of the self and the indirect passions. A realist metaphysics of morals needs to address two questions, the question of the reality of the... (shrink)

The spring I first offered a graphic medicine graduate seminar, I wasn't sure what to expect. Every class meeting included one hour in which the students, from fields that stress rigorous verbal and written achievement, were required to embrace the position of the amateur by learning to create comics. They experimented with putting images and words together in sequential drawn panels in order to tell a story of their own devising. Of course, they did more than draw; the other two (...) hours of the seminar introduced them both to the medium of comics and to graphic medicine in particular.What happened surprised me. Not only did the students, none of whom were medical students, explore illness, disability, and medical treatment in their comics, but they also often articulated bioethics issues as well. (shrink)

This paper considers feministperspectives on the Human Rights Act. Itdiscusses the reasons why many feminists aresceptical regarding the impact the Act willhave on women''s lives, including theimplications for anti-discrimination law,problems with the framework of rights in theEuropean Convention and deeper difficulties facingfeminism in negotiating rights discourse. Whileacknowledging these problems, it is argued thatthere are grounds for a more positiveinterpretation of incorporation. Questions arethen raised about the nature and scope of rightsand the role of the state in challenging genderinequality.