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.

Adrian Piper argues that the Humean conception can be made to work only if it is placed in the context of a wider and genuinely universal conception of the self, whose origins are to be found in Kant’s Critique of Pure Reason. This conception comprises the basic canons of classical logic, which provide both a model of motivation and a model of rationality. These supply necessary conditions both for the coherence and integrity of the self and also for unified (...) agency. The Kantian conception solves certain intractable problems in decision theory by integrating it into classical predicate logic, and provides answers to longstanding controversies in metaethics concerning moral motivation, rational final ends, and moral justification that the Humean conception engenders. In addition, it sheds light on certain kinds of moral behavior – for example, the whistleblower – that the Humean conception is at a loss to explain. (shrink)

We need modal imagination in order to extend our conception of reality - and, in particular, of human beings - beyond our immediate experience in the indexical present; and we need to do this in order to preserve the significance of human interaction. To make this leap of imagination successfully is to achieve not only insight but also an impartial perspective on our own and others' inner states. This perspective is a necessary condition of experiencing compassion for others. This is (...) the primary thesis I will try to defend in this discussion. (shrink)

The Humean conception of the self consists in the belief-desire model of motivation and the utility-maximizing model of rationality. This conception has dominated Western thought in philosophy and the social sciences ever since Hobbes’ initial formulation in Leviathan and Hume’s elaboration in the Treatise of Human Nature. Bentham, Freud, Ramsey, Skinner, Allais, von Neumann and Morgenstern and others have added further refinements that have brought it to a high degree of formal sophistication. Late twentieth century moral philosophers such as Rawls, (...) Brandt, Frankfurt, Nagel and Williams have taken it for granted, and have made use of it to supply metaethical foundations for a wide variety of normative moral theories. But the Humean conception of the self also leads to seemingly insoluble problems about moral motivation, rational final ends, and moral justification. Can it be made to work? (shrink)

This article outlines procedures for the feedback of individual research data to participants. This feedback framework was developed in the context of a personalized medicine research project in Canada. Researchers in this domain have an ethical obligation to return individual research results and/or material incidental findings that are clinically significant, valid and actionable to participants. Communication of individual research data must proceed in an ethical and efficient manner. Feedback involves three procedural steps: assessing the health relevance of a finding, re-identifying (...) the affected participant, and communicating the finding. Re-identification requires researchers to break the code in place to protect participant identities. Coding systems replace personal identifiers with a numerical code. Double coding systems provide added privacy protection by separating research data from personal identifying data with a third "linkage" database. A trusted and independent intermediary, the "keyholder", controls access to this linkage database. (shrink)

In an earlier discussion, I argued that Kant's moral theory satisfies some of the basic criteria for being a genuine theory: it includes testable hypotheses, nomological higher-and lower-level laws, theoretical constructs, internal principles, and bridge principles. I tried to show that Kant's moral theory is an ideal, descriptive deductive-nomological theory that explains the behavior of a fully rational being and generates testable hypotheses about the moral behavior of actual agents whom we initially assume to conform to its theoretical constructs. I (...) argued that the moral "ought" is best understood as the "ought" of tentative prediction expressed in the range of uses of the German sollen; and that the degree to which such a theory is well-confirmed is a function of the degree to which we actually judge individual human agents, on a case-by-case basis, to be motivated by rationality, stupidity, or moral corruption in their actions. I assume that a similar case could be made for other major contenders, such as Utilitarianism or Aristotelianism. But there still remains unanswered the question of which of these theories is the best among the available alternatives. To answer this question, further criteria of selection must be invoked. Among these are structural elegance and explanatory simplicity, but even these do not exhaust the desiderata for an adequate moral theory. More pressing in the case of moral theory is the requirement that the theory enable us to understand all the available data of moral experience; that the theory be sufficiently inclusive that in the formulation of its descriptive laws and practical principles, it be capable of identifying as morally significant all the behavior to which moral praise, condemnation, or acquittal is a relevant and appropriate response. (shrink)

Most moral theories share certain features in common with other theories. They consist of a set of propositions that are universal, general, and hence impartial. The propositions that constitute a typical moral theory are (1) universal, in that they apply to all subjects designated as within their scope. They are (2) general, in that they include no proper names or definite descriptions. They are therefore (3) impartial, in that they accord no special privilege to any particular agent's situation which cannot (...) be justified under (2) and (3). These three features do not distinguish moral theories from other theories, nor indeed from most general categorical propositions we assert. Yet, in recent years, these features of moral theories have been the target of a certain concerted and sustained criticism, namely, that to be committed to such a moral theory, or to aspire to act in accordance with its requirements, results in what has come to be known as moral alienation. Moral alienation, according to this criticism, consists in (i) viewing one's ground projects from an impersonal, "moral point of view" engendered by one's acceptance of the theory; (ii) being prepared to sacrifice these projects to the requirements of moral principle; and (iii) making such a sacrifice specifically and self-consciously in order to conform to these requirements. Moral alienation is said to manifest itself in one (or both) of two ways, depending on the nature of the project thus susceptible to sacrifice. One may be alienated from oneself, if the project consists of tastes, convictions, or aspirations that are centrally definitive of one's self. In this case one's commitment to the project can be at best conditional on its congruence with one's moral theory. It is claimed that this must make for a rather tepid and unenthusiastic commitment indeed. Alternatively, one may be alienated from others, if the project is an interpersonal relationship such as a friendship, marriage, or collegial relationship. In this case one's responses to the other are motivated by one's awareness of what one's moral theory requires. It is claimed that this obstructs a genuine and unmediated emotional response to the other as such. My aim here will be to argue that this very compelling criticism - call it the moral-alienation criticism - is nevertheless misdirected. The real culprit is not any particular moral theory, but rather a certain familiar personality type that may or may not adopt it. (shrink)

In our dealings with young children, we often get them to do or think things by arranging their environments in certain ways; by dissembling, simplifying, or ambiguating the facts in answer to their queries; by carefully selecting the states of affairs, behavior of others, and utterances to which they shall be privy. We rightly justify these practices by pointing out a child's malleability, and the necessity of paying close attention to formative influences during its years of growth. This filtering of (...) influences is necessary, we point out, if children are ever to reach a degree of maturity and inner stability that will enable them to understand and cope adequately with the complexities, contradictions, and difficulties of the world from which we now seek to shield them. Thus a child's eventual state of competence, maturity, and autonomy adequately justifies our current practices of manipulation and selection of his environment: such practices are rightly held to be ultimately in the child's best interests as an adult. There is no future state of things with reference to which the Utilitarian night justify his policy of secrecy and manipulation, and in light of which this policy night eventually be dispensed with and commonly validated, in retrospect, as a means to the worthwhile goal of moral maturity. That is, there is no point at which the attitude of the Utilitarian to the rest of the community can develop past the analogous attitude of the parent towards the child; no point at which the Utilitarian might eventually bear to others a relationship of mutual acknowledgement and respect as mature, autonomous, moral adults. The consistent Utilitarian, then, largely regards himself as if he were the only adult in a community of children. (shrink)

Most published discussions in contemporary metaethics include some textual exegesis of the relevant contemporary authors, but little or none of the historical authors who provide the underpinnings of their general approach. The latter is usually relegated to the historical, or dismissed as expository. Sometimes this can be a useful division of labor. But it can also lead to grave confusion about the views under discussion, and even about whose views are, in fact, under discussion. Elijah Millgram’s article, “Does the Categorical (...) Imperative Give Rise to a Contradiction in the Will?” is a case in point. In it, he takes the New Kantians to task for various flaws in their interpretation of Kant’s moral theory, to be detailed shortly. He concludes with a question and a suggestion. In order to properly dissect the first, “universal law” formulation of the Categorical Imperative, he argues, we first need to understand “why an agent wills the universalization of his maxim” (549). He also suggests that in order to answer this question, we must recur to what Kant himself actually says (550). His question is a good one, and his advice on how to go about answering it is sound. But to take Millgram’s advice is to call this division of labor into question, at least for this case. For it demands close and sustained exegesis, not only of his argument against the New Kantians, but also – in order to assess whether and where they go wrong – of Kant’s text itself. (shrink)

This discussion treats a set of familiar social derelictions as consequences of the perversion of a universalistic moral theory in the service of an ill-considered or insufficiently examined personal agenda.The set includes racism, sexism, anti-Semitism, homophobia, and class elitism, among other similar pathologies, under the general heading of discrimination. The perversion of moral theory from which these derelictions arise, I argue, involves restricting its scope of application to some preferred subgroup of the moral community of human beings. -/- The following (...) analysis of higher-order discrimination suggests that we often select the individuals who constitute such subgroups for reasons that we ourselves would reject on moral grounds were we to examine them carefully, but that we choose instead to put our rational resources in the service of avoiding any such examination at all costs. The implication is that arguments that truncate the scope of moral theory in fact justify bestowing the gift of moral treatment on a select few who deserve it no more than the many from whom we withhold it. Therefore, it would be precipitous to conclude that universalistic moral theory can be legitimately restricted in its practical scope of application in any way at all. (shrink)

The purpose of this discussion is twofold. First, I want to shed some light on Kant's concept of personhood as rational agency, by situating it in the context of the first Critique's conception of the self as defined by its rational dispositions. I hope to suggest that this concept of personhood cannot be simply grafted onto an essentially Humean conception of the self that is inherently inimical to it, as I believe Rawls, Gewirth, and others have tried to do. Instead (...) I will try to show how deeply embedded this concept of personhood is in Kant's conception of the self as rationally unified consciousness. Second, I want to deploy this embedded concept of personhood as the basis for an analysis of the phenomenon of xenophobia. (shrink)

In an era of unrivalled sequencing, computation and networking capability, international sharing of genomic samples and data is becoming a modus operandi for modern medical research. Researchers are collaborating to establish large collections with global scale. Having never before set foot outside the cell, the molecules that shape us are being digitized and launched across the globe. Protecting individual privacy interests in this information is a central challenge of the genomic research era. This article reviews international privacy norms governing human (...) genomic biobanks and databases. It will not directly consider biobanks established for other health-related purposes, such as screening or therapy. A genomic biobank is “a hybrid infrastructure,” an organized collection of human biological material combined with associated health information: physical measurements, outcome data in medical records, and epidemiological information, as well as genomic data derived from the samples. (shrink)

I wish to defend the claim that given the content and structure of any moral theory we are likely to find palatable, there is no way of uniquely breaking down that theory into either consequentialist or deontological elements. Indeed, once we examine the actual structure of any such theory more closely, we see that it can be classified in either way arbitrarily. Hence if we ignore the metaethical pronouncements often made by adherents of the consequentialist-deontological distinction, we are quickly led (...) to the conclusion that this distinction contributes nothing of consequence to an understanding of moral theory. I will try to show that there are basically two reasons for this. First, what we mean by the terms endemic to the consequentialist-deontological distinction have no unique references to particular states of affairs in actual cases of moral decision making. Hence we may justify any such concrete moral decision by reference to typically consequentialist or deontological reasoning indifferently. Second, scrutiny of actual and viable moral theories reveals a much finer-grained structure than the consequentialist-deontological taxonomy can capture. And it is this structure, rather than simple attention to consequences or principles, that determines practical moral decision making. We would thus do better to develop the richer vocabulary of causes and constituents, goals and effects, states and events (mental, social, or physical). So in the end, the consequentialist-deontological distinction is irrelevant at the normative level of actual moral reasoning, whereas at the metaethical level it crudely schematizes two opposing types of dummy theory, neither of which is convincing, upon reflection, to any practicing moral philosopher. (shrink)

Kant identifies what are in fact Free Riders as the most noxious species of polemicists. Kant thinks polemic reduces the stature and authority of reason to a method of squabbling that destabilizes social equilibrium and portends disintegration into the Hobessian state of nature. In the first Critique, Kant proposes two textually related solutions to the Free Rider problem.

Rapid technological advances have produced a variety of novel techniques that allow a comprehensive assessment of brain function to be combined with detailed information about brain structure and connectivity. Any assessment that is based on exhibited behavior after brain injury will be prone to error for a number of reasons. These questions are explored in the context of recent studies in both healthy populations and brain injured patients that have sought to investigate covert awareness through the use of functional neuroimaging. (...) Those circumstances in which functional magnetic resonance imaging data can be used to infer awareness in the absence of a behavioral response are contrasted with those circumstances in which it cannot. This distinction is fundamental for understanding and interpreting patterns of brain activity following acute brain injury and has implications for clinical care, diagnosis, prognosis, and medicolegal decision-making after serious brain injury. (shrink)

THE MAIN OBJECTIVES of the following discussions are, first, to show the logical inconsistency of Hegel’s theory of the necessity of private property and, second, to show its exegetical inconsistency with the most plausible and consistent interpretations of Hegel’s theory of the self and its relation to the state in Ethical Life. I begin with the latter objective, by distinguishing three basic conceptions of the self that can be gleaned from various passages in the Philosophy of Right. I suggest viable (...) connections between each of these three conceptions and three respective interpretations of what I call the Hegelian requirement, i.e., that the individual be able to identify his personal interests and values with those of the state [141, 147, 147r, 151, 155].1 This can be understood as the requirement that the individual be capable of transcending certain limits of individuality in the service of broader and more inclusive political goals. I argue that Hegel’s theory of Personality and the requirements of Ethical Life in the state commit him to a conception of the self as capable of achieving such selftranscendence through action, despite appearances to the contrary that suggest that self-transcendence is to be primarily achieved through acquisition of various kinds. I then try to demonstrate the logical inconsistency of Hegel’s theory of the necessity of private property. I argue that the fallacies inherent in his exposition of this theory can be explained by his presupposing a conception of the self which both is inadequate to meet the criteria of Hegel’s theories of Personality and Ethical Life and also, therefore, fails the Hegelian requirement. (shrink)

I want to examine critically a certain strategy of moral justification which I shall call instrumentalism. By this I mean the view that a moral theory is rationally justified if the actions, life-plan, or set of social arrangements it prescribes can be shown to be the best means to the achievement of an agent's final ends, whatever these may be. Instrumentalism presupposes a commitment to what I shall call the Humean conception of the self. By this I mean a certain (...) way of conceiving the motivational and structural constituents of the self. Briefly, the self on this conception is motivated by its desires for states of affairs that are temporally or spatiotemporally external to the self. And it is structured by the normative requirements of instrumental rationality: The self is conceived as rationally coherent to the extent that theoretical reason calculates and schedules the satisfaction of as many of its desires as possible, with the minimum necessary costs. The motivational and structural elements of the Humean conception of the self combine to form a familiar explanatory model of human agency: We make sense of an agent's behavior by ascribing to her the desire to achieve the ends that she does in fact achieve, and the theoretically rational belief that, given the information and resources available to her, behaving as she did was the most efficient way to do so. I shall want to argue that to the extent that instrumentalism is successful in providing an objective justification of a moral theory - and I shall contend that it cannot be completely successful - it cannot provide a moral justification. But when we attempt to modify it so as to produce a specifically moral justification, we see that either it is impossible to do this, or else the Humean notion of instrumental rationality is doing no justificatory work. (shrink)

I want to examine the implications of a metaphysical thesis which is presupposed in various objections to Rawls' theory of justice.Although their criticisms differ in many respects, they concur in employing what I shall refer to as the continuity thesis. This consists of the following claims conjointly: (1) The parties in the original position (henceforth the OP) are, and know themselves to be, fully mature persons who will be among the members of the well-ordered society (henceforth the WOS) which is (...) generated by their choice of principles of justice. (2) The OP is a conscious event among others, integrated (compatibly with the constraints on knowledge and motivation imposed on the parties) into the regular continuity of experience that comprises each of their ongoing constitutes lives. (3) The parties in the OP thus are, and regard themselves as, psychologically continuing persons, partially determined in personality and interests by prior experiences, capable of recollection and regret concerning the past, anticipation and apprehensiveness regarding the future, and so on. Although the continuity thesis as stated above is not at odds with any of the conditions that define the OP, its exegetical validity is a matter for discussion. I shall be concerned to argue that if it is indeed contained in or a consequence of Rawls' theory, then it casts into doubt the capacity of the OP to generate or justify any principles of justice at all. On the other hand, if the continuity thesis is viewed as dispensable and unnecessary to the Rawlsian enterprise, then Rawls is correct in maintaining the irrelevance of the question of personal identity to the construction of his moral theory. In this case, the contract-theoretic, instrumentalist justification for the two principles of justice (henceforth the 2PJ) needs to be supplanted by a modified conception of wide reflective equilibrium. The considerations that form the bulk of this discussion then may be understood as providing a rationale for Rawls' recent revisions in the model of justification on which his theory of justice rests, and for his increasing emphasis on us as moral mediators between the OP and the WOS. Now I want to consider the question of whether or not, given the textual evidence, anything like the continuity thesis is stated or implied by Rawls, and what problems for his theory, if any, turn on a positive or negative answer to this question. -/- . (shrink)

My aim in this discussion is to argue, not only that government should provide funding for the arts, but a fortiori that it should provide funding for unconventional, disruptive works of art.

Historically, the view, prevalent in contemporary economics and decision theory as well as philosophy, that rational action consists simply in satisfying one’s desires, whatever they may be, as efficiently as possible, is to be found first in Book II of Hume’s Treatise of Human Nature. This view has counterintuitive and self-refuting implications, in that it recognizes as rational behavior that may reveal a clear degree of irresponsibility or psychological instability. Accordingly, many Hume scholars have tried to show recently that this (...) view was not Hume’s; and that, on the contrary, Hume did supply an account of rational final ends--in his discussion of the calm passions, the “steady and general view” that corrects the biases and contingencies of an individual’s desires and perceptions, and elsewhere. But a detailed reconstruction of Hume’s views on these matters that assembles all the relevant texts does not support this thesis. Instead, it undermines it. Hence the counterintuitive and self-refuting implications of Hume’s view of rational action must be allowed to stand. (shrink)

Book review of "The Emergence of Norms.

I want to argue that self-deception is a species of a more general phenomenon, which I shall call pseudorationality, which in turn is necessitated by what I shall describe as our highest-order disposition to literal self-preservation. By "literal self-preservation," I mean preservation of the rational intelligibility of the self, in the face of recalcitrant facts that invariably threaten it.

In 1951 John Rawls expressed these convictions about the fundamental issues in metaethics: [T]he objectivity or the subjectivity of moral knowledge turns, not on the question whether ideal value entities exist or whether moral judgments are caused by emotions or whether there is a variety of moral codes the world over, but simply on the question: does there exist a reasonable method for validating and invalidating given or proposed moral rules and those decisions made on the basis of them? For (...) to say of scientific knowledge that it is objective is to say that the propositions expressed therein may be evidenced to be true by a reasonable and reliable method, that is, by the rules and procedures of what we may call "inductive logic"; and, similarly, to establish the objectivity of moral rules, and the decisions based upon them, we must exhibit the decision procedure, which can be shown to be both reasonable and reliable, at least in some cases, for deciding between moral rules and lines of conduct consequent to them.1 In this passage Rawls reconfigured the issue of moral objectivity and so reoriented the practice of metaethics from linguistic analysis to rational methodology. In so doing, his work has provided inspiration to philosophers as disparate in normative views as Thomas Nagel,2 Richard Brandt3, Alan Gewirth4, and David Gauthier.5 Rawls replaced the Moorean question, Do moral terms refer? with the Rawlsian question, Can moral judgments be the outcome of a rational and reliable procedure? He later gave a resoundingly positive answer to this question6 and later still, a more tentative one.7 Rawls' considered qualification of his earlier enthusiasm about the extent to which moral philosophy could be "part of the theory of rational choice"8 is a tribute to the seriousness with which he took his critics' objections. (shrink)

That human beings have the potential for rationality and the ability to cultivate it is a fact of human nature. But to value rationality and its subsidiary character dispositions - impartiality, intellectual discrimination, foresight, deliberation, prudence, self-reflection, self-control - is another matter entirely. -/- I am going to take it as a given that if a person's freedom to act on her impulses and gratify her desires is constrained by the existence of others' equal, or more powerful, conflicting impulses and (...) desires, then she will need the character dispositions of rationality to survive. The more circumscribed one's freedom and power, the more essential to survival and flourishing the character dispositions of rationality and the spirit may become. (shrink)

The notion of a level of consciousness is a key construct in the science of consciousness. Not only is the term employed to describe the global states of consciousness that are associated with post-comatose disorders, epileptic absence seizures, anaesthesia, and sleep, it plays an increasingly influential role in theoretical and methodological contexts. However, it is far from clear what precisely a level of consciousness is supposed to be. This paper argues that the levels-based framework for conceptualizing global states of consciousness (...) is untenable and develops in its place a multidimensional account of global states. (shrink)

We identify a species of experiment—Kon-Tiki experiments—used to demonstrate the competence of a cause to produce a certain effect, and we examine their role in the historical sciences. We argue that Kon-Tiki experiments are used to test middle-range theory, to test assumptions within historical narratives, and to open new avenues of inquiry. We show how the results of Kon-Tiki experiments are involved in projective inferences, and we argue that reliance on projective inferences does not provide historical scientists with any special (...) protection against the problem of unconceived alternatives. (shrink)

Patient outcome after serious brain injury is highly variable. Following a period of coma, some patients recover while others progress into a vegetative state (unresponsive wakefulness syndrome) or minimally conscious state. In both cases, assessment is difficult and misdiagnosis may be as high as 43%. Recent advances in neuroimaging suggest a solution. Both functional magnetic resonance imaging and electroencephalography have been used to detect residual cognitive function in vegetative and minimally conscious patients. Neuroimaging may improve diagnosis and prognostication. These techniques (...) are beginning to be applied to comatose patients soon after injury. Evidence of preserved cognitive function may predict recovery, and this information would help families and health providers. Complex ethical issues arise due to the vulnerability of patients and families, difficulties interpreting negative results, restriction of communication to “yes” or “no” answers, and cost. We seek to investigate ethical issues in the use of neuroimaging in behaviorally nonresponsive patients who have suffered serious brain injury. The objectives of this research are to: (1) create an approach to capacity assessment using neuroimaging; (2) develop an ethics of welfare framework to guide considerations of quality of life; (3) explore the impact of neuroimaging on families; and, (4) analyze the ethics of the use of neuroimaging in comatose patients. (shrink)

After severe brain injury, one of the key challenges for medical doctors is to determine the patient’s prognosis. Who will do well? Who will not do well? Physicians need to know this, and families need to do this too, to address choices regarding the continuation of life supporting therapies. However, current prognostication methods are insufficient to provide a reliable prognosis. -/- Functional Magnetic Resonance Imaging (MRI) holds considerable promise for improving the accuracy of prognosis in acute brain injury patients. Nonetheless, (...) research on functional MRI in the intensive care unit context is ethically challenging. These studies raise several ethical issues that have not been addressed so far. In this article, Prof. Charles Weijer and his co-workers provide a framework for researchers and ethics committees to design and review these studies in an ethically sound way. (shrink)