In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 12.3 (2002) 299-303 [Access article in PDF] Bioethics Inside the Beltway What Should IRBs Consider When Applying the Privacy Rule to Research? Julie Waltz Gerlach In 1996, Congress mandated the establishment of standards for the privacy of individually identifiable health information through the Health Insurance and Portability and Accountability Act of 1996 (HIPAA). Until the establishment of HIPAA, personal health information could be (...) distributed without notice or consent for reasons that had nothing to do with a patient's medical treatment or health care reimbursement. Patient information held by a health plan could be passed on to a lender who then might deny the patient's application for a home mortgage or a credit card or to an employer who might use it for personnel decisions. Congress failed to meet its 21 August 1996 deadline established by HIPAA to pass privacy legislation; the Act passed the responsibility to Department of Health and Human Services (DHHS). On 28 December 2000, the Secretary of Health and Human Services released final privacy regulations relating to the protection of patients' individually identifiable health information. The "Standards for Privacy of Individually Identifiable Health Information" (Privacy Rule/current) took effect 14 April 2001. As required by HIPAA, the Privacy Rule established conditions for the collection, use, and disclosure of protected health information by covered entities for research purposes. Covered entities, defined as health plans, health care clearinghouses, and health care providers that engage electronically in a wide range of financial and administrative transactions related to payment and reimbursement, must comply by 14 April 2003 (DHHS 2000, p. 82462). To ensure that the provisions of the final rule provide strong privacy protection without hindering access to health care, the Department of Health and Human Services (DHHS 2002, p. 14776) has proposed modifications to the Privacy Rule.The final Privacy Rule (DHHS 2001) grants substantial rights to individuals/research participants to be informed of how their protected health information is maintained and how that information may be used or disclosed. It also defines individual's/research participants' rights with regard to gaining access to information about themselves, when such information is held by covered entities. [End Page 299]The Privacy Rule requires researchers either to receive authorization from individuals/research participants to collect, use, and disclose protected health information, or to obtain a waiver of authorization that is approved by an institutional review board (IRB) or Privacy Board, or to use de-identified data. Section 164.508 of the Privacy Rule, entitled "Use and Disclosures for Which an Authorization Is Required," describes how IRBs will be directly affected. The rule focuses not just on research but on the overall privacy of all identifiable health information. Institutions have the option of adding these required duties to IRBs or establishing "privacy boards." Privacy boards, as defined by the Privacy Rule, are to be composed of members with varying backgrounds and professional competency to review the effect of the research protocol on the individual/research participant's privacy rights. The board must include at least one member who is not affiliated with the covered entity, or any entity conducting or sponsoring the research, and not related to any person who is affiliated with such entities. Board members cannot participate in the review of any research project in which the member has a conflict of interest.The basic concepts and tenets of privacy and confidentiality are well known to IRBs in the United States, which operate under the Common Rule (45 CFR 46) and/or the Food and Drug Administration's (FDA) human subject protection regulations. Both sets of regulations require IRBs to ensure that risks (including privacy risks) are minimized. Under these regulations, IRBs must consider the confidentiality of research data and whether researchers should have access to confidential medical information. IRBs also must review the consent form as a process of communication that will inform research subjects about the research study.One noteworthy aspect of the Privacy Rule is its application to all research regardless of funding source. Currently, research funded by... (shrink)

The plays written about AIDS in the past dozen years form a radical canon establishing gay men as the locus for public attention. These plays have been all but silent in their representation of women with AIDS. This article examines the marginalized women in early plays such as The Normal Heart and As Is, and the women more central to later plays such as The Baltimore Waltz, Before It Hits Home, and Patient A. It foregrounds some of the most (...) problematic issues surrounding the AIDS virus: the perception of women as vectors of disease for men and unborn children, the insistent representation of women as mothers and caregivers, and the denial of patterns of abuse, sexual exploitation, and poverty which contribute to the marginalization of woman and people of color. (shrink)

Background The ethical use both of human and non-human animals in research is predicated on the assumption that it is of a high quality and its projected benefits are more significant than the risks and harms imposed on subjects. Yet questions remain about whether and how IRBs and IACUCs should consider the scientific value of proposed research studies.Methods We draw upon 45 interviews with IRB and IACUC members and researchers with oversight experience about their perceptions of their own roles in (...) reviewing the quality and value of scientific protocols. Interview transcripts were memoed to highlight specific findings, which were then used to identify key themes through an iterative process.Results IRB and IACUC members expressed broad trust in the need for and value of research, and they often assumed that protocols had social value or that prior review, especially when associated with funding, affirmed both the rigor and merit of those protocols. Some oversight members also took an explicit stance against scientific review by stating that such review is not within the regulatory mandates governing their parts in the oversight system. Yet other interviewees expressed uneasiness about the current paradigm for evaluating the quality and overall value of science, suggesting that IRB and IACUC members perceive gaps in the oversight systems.Conclusions These findings reveal many similarities in how IRB and IACUC members understand the roles and limitations of their respective oversight committees. We conclude with a discussion of how the lack of a clear mandate regarding scientific review within US federal regulations may undermine ethical engagement of whether human and animal research is scientifically justified, resulting in a “mission lapse” wherein no organizational body is clearly responsible for ensuring that the research being conducted has the potential to advance science and benefit society. (shrink)

The incredible achievements of modern scientific theories lead most of us to embrace scientific realism: the view that our best theories offer us at least roughly accurate descriptions of otherwise inaccessible parts of the world like genes, atoms, and the big bang. In Exceeding Our Grasp, Stanford argues that careful attention to the history of scientific investigation invites a challenge to this view that is not well represented in contemporary debates about the nature of the scientific enterprise. The historical record (...) of scientific inquiry, Stanford suggests, is characterized by what he calls the problem of unconceived alternatives. Past scientists have routinely failed even to conceive of alternatives to their own theories and lines of theoretical investigation, alternatives that were both well-confirmed by the evidence available at the time and sufficiently serious as to be ultimately accepted by later scientific communities. Stanford supports this claim with a detailed investigation of the mid-to-late 19th century theories of inheritance and generation proposed in turn by Charles Darwin, Francis Galton, and August Weismann. He goes on to argue that this historical pattern strongly suggests that there are equally well-confirmed and scientifically serious alternatives to our own best theories that remain currently unconceived. Moreover, this challenge is more serious than those rooted in either the so-called pessimistic induction or the underdetermination of theories by evidence, in part because existing realist responses to these latter challenges offer no relief from the problem of unconceived alternatives itself. Stanford concludes by investigating what positive account of the spectacularly successful edifice of modern theoretical science remains open to us if we accept that our best scientific theories are powerful conceptual tools for accomplishing our practical goals, but abandon the view that the descriptions of the world around us that they offer are therefore even probably or approximately true. (shrink)

The place of the emotions among the passions -- The analytic of the emotions I -- The analytic of the emotions II -- The dialectic of the emotions -- Pride, arrogance, and humility -- Shame, embarrassment, and guilt -- Envy -- Jealousy -- Anger -- Love -- Friendship -- Sympathy and empathy.

This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine elements (...) of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both “public” and “engagement.”. (shrink)

Some scientific categories seem to correspond to genuine features of the world and are indispensable for successful science in some domain; in short, they are natural kinds. This book gives a general account of what it is to be a natural kind and puts the account to work illuminating numerous specific examples.

By the time of his death in 2006, Sir Peter Strawson was regarded as one of the world's most distinguished philosophers. Unavailable for many years,_ Scepticism and Naturalism_ is a profound reflection on two classic philosophical problems by a philosopher at the pinnacle of his career. Based on his acclaimed Woodbridge lectures delivered at Columbia University in 1983, Strawson begins with a discussion of scepticism, which he defines as questioning the adequacy of our grounds for holding various beliefs. He then (...) draws deftly on Hume and Wittgenstein to argue that we must distinguish between 'hard', scientific naturalism; or 'soft', humanistic naturalism. In the remaining chapters the author takes up several issues in which sceptical doubts play an important role, in particular the nature of transcendental arguments and including the objectivity of moral philosophy, the mental and the physical, and the existence of abstract entities. _Scepticism and Naturalism_ is essential reading for those seeking an introduction to the work of one of the twentieth century’s most important and original philosophers. This reissue includes a substantial new foreword by Quassim Cassam and a fascinating intellectual autobiography by Strawson, which together form an excellent introduction to his life and work. (shrink)

In the US, research payments are technically taxable income. This article argues that tax liability is a form of possible economic and legal risk of paid research participation. Findings are presented from empirical research on Phase I healthy volunteer trials. The article concludes by discussing the implications of these findings for the informed consent process, as well as for broader ethical issues in whether and how payments for research participation should be regulated.

In an atmosphere of shrinking state funds for edu cation and the glistening power of information technology, the administrators of educational institutions, especially higher education, are investing heavily in the construction and increased use of distance learning classrooms. Yet, in this rush to be both economi cally streamlined and technologically advanced, few policy makers are inquiring into the educational bene fits actually proffered to the end users, that is, teachers and students. This article advances such an inquiry by revealing how (...) the equipment in such facilities explic itly or implicitly embodies, and thereby determines, pedagogical choices. Such "hardwired" pedagogy may enhance the type and amount of data flow, but it effectively restricts the options for teaching and learn ing on the part of both the teacher and the student. Furthermore, virtual classrooms functionally transfer parametric control of classroom interaction from the participants to the equipment and therefore to the technicians, accountants, bureaucrats, manufacturers, and engineers. (shrink)

The political contours of social actions appear not only in the relationships between cultural actors but in the artifacts that surround them. This is increasingly the case as digital technology becomes the vehicle for education. This article focuses on the rhetoric that accompanies such educational technology. All too often, both the hype and the criticism surrounding technology in education implicitly accept that digital machines and media represent the impending future. However, if technology is understood as the instantiation of enduring social (...) relations, then it must always represent the sociopolitical configurations of the past, however recent that past is. Seen in this light, technology does not drive change so much as it resists it. Technology becomes a tool of maintenance, not innovation. This article spins out how this might be the case and accompanies the arguments with concrete instances of how this is being played out in public schooling. (shrink)

Julie Childers and Bob Arnold’s (2019) article, “The Inner Lives of Doctors: Physician Emotion in the Care of the Seriously Ill,” uses Kübler-Ross’s influential work on death and dying to remind us...

Halford et al.'s analysis of relational complexity provides a possible framework for characterizing the symbolic functions of the prefrontal cortex. Studies of prefrontal patients have revealed that their performance is selectively impaired on tasks that require integration of two binary relations (i.e., tasks that Halford et al.'s analysis would identify as three-dimensional). Analyses of relational complexity show promise of helping to understand the neural substrate of thinking.

The concept of normal is so familiar that it can be hard to imagine contemporary life without it. Yet the term entered everyday speech only in the mid-twentieth century. Before that, it was solely a scientific term used primarily in medicine to refer to a general state of health and the orderly function of organs. But beginning in the middle of the twentieth century, normal broke out of scientific usage, becoming less precise and coming to mean a balanced condition to (...) be maintained and an ideal to be achieved. In Normality, Peter Cryle and Elizabeth Stephens offer an intellectual and cultural history of what it means to be normal. They explore the history of how communities settle on any one definition of the norm, along the way analyzing a fascinating series of case studies in fields as remote as anatomy, statistics, criminal anthropology, sociology, and eugenics. Cryle and Stephens argue that since the idea of normality is so central to contemporary disability, gender, race, and sexuality studies, scholars in these fields must first have a better understanding of the context for normality. This pioneering book moves beyond binaries to explore for the first time what it does—and doesn’t—mean to be normal. (shrink)

By the time of his death in 2006, Sir Peter Strawson was regarded as one of the world's most distinguished philosophers. Unavailable for many years,_ Scepticism and Naturalism_ is a profound reflection on two classic philosophical problems by a philosopher at the pinnacle of his career. Based on his acclaimed Woodbridge lectures delivered at Columbia University in 1983, Strawson begins with a discussion of scepticism, which he defines as questioning the adequacy of our grounds for holding various beliefs. He then (...) draws deftly on Hume and Wittgenstein to argue that we must distinguish between 'hard', scientific naturalism; or 'soft', humanistic naturalism. In the remaining chapters the author takes up several issues in which sceptical doubts play an important role, in particular the nature of transcendental arguments and including the objectivity of moral philosophy, the mental and the physical, and the existence of abstract entities. _Scepticism and Naturalism_ is essential reading for those seeking an introduction to the work of one of the twentieth century’s most important and original philosophers. This reissue includes a substantial new foreword by Quassim Cassam and a fascinating intellectual autobiography by Strawson, which together form an excellent introduction to his life and work. (shrink)

An Interdisciplinary Approach to Cognitive Modelling presents a new approach to cognition that challenges long-held views. It systematically develops a broad-based framework to model cognition, which is mathematically equivalent to the emerging 'quantum-like modelling' of the human mind. The book argues that a satisfactory physical and philosophical basis of such an approach is missing, a particular issue being the application of quantization to the mind for which there is no empirical evidence as yet. In response to this issue, the book (...) adopts a COM (classical optical modelling) approach, broad-based but mathematically equivalent to quantum-like modelling while avoiding its problematic features. It presents a philosophically informed and empirically motivated mathematical model of cognition, mainly concerning decision making processes. It also deals with applications to different areas of the social sciences. It will be of interest to scholars and research students interested in the mathematical modelling of cognition and decision making, and also interdisciplinary researchers interested in broader issues of cognition. (shrink)

This study concerns the ideas of one particular philosopher, Henri Bergson, whose views of time, intuition, and creativity have had a significant impact on art, literature, and the humanities, both in his time and in our own. Although it is generally recognized that Bergson's ideas have significantly impacted the arts and the humanities, it has not been recognized how they have also had a creative influence on the sciences as well. Nor has it been realized that this was one of (...) his most basic contentions. Bergson's conception of intuition--his fundamental insight into reality--was not limited to fugitive insights into human existence. By realizing previously unsuspected possibilities for research and discovery, his endeavors were also meant to make possible new advances in the sciences. If it enabled his cousin by marriage, Marcel Proust, to explore human memory in depth, it also inspired psychologists like Daniel Schachter to use Bergson's ideas to make real contributions to contemporary memory science. If his notion of creative evolution brought many thinkers to a belief in human creative freedom, it brought others (notably Alexis Carrel and Pierre Lecomte de Noüy) to a scientific study of biological time. Among his successful speculations was the theory of the Big Bang cosmology. 'Getting Bergson Straight' shows many points at which Bergson's ideas anticipated future developments in the sciences. This was seen clearly by the Nobel Prize-winning physicist Luis de Broglie who viewed Bergson's physics as presaging quantum physics. Thus, the text is well situated for arts, humanities, social science, and natural science classrooms studying creative thinking and/or intellectual history. (shrink)

Profoundly important ethical and political controversies turn on the question of whether biological life is an essential aspect of a human person, or only an extrinsic instrument. Lee and George argue that human beings are physical, animal organisms - albeit essentially rational and free - and examine the implications of this understanding of human beings for some of the most controversial issues in contemporary ethics and politics. The authors argue that human beings are animal organisms and that their personal identity (...) across time consists in the persistence of the animal organisms they are; they also argue that human beings are essentially rational and free and that there is a radical difference between human beings and other animals; criticize hedonism and hedonistic drug-taking; present detailed defenses of the prolife positions on abortion and euthanasia; and defend the traditional moral position on marriage and sexual acts. (shrink)

Do the ethical features of an artwork bear on its aesthetic value? This movie endorses misogyny, that song is a civil rights anthem, the clay constituting this statue was extracted with underpaid labor—are facts like these the proper bases for aesthetic evaluation? I argue that this debate has suffered from a false presupposition: that if the answer is yes (for at least some such ethical features), such considerations feature as pro tanto contributions to an artwork's overall aesthetic value, i.e., as (...) merits or flaws which make something have more or less overall aesthetic value. As the case of ethically laden, aesthetic evaluation makes clear, however, good aesthetic judgement is irreducibly multi-dimensional, e.g., "the movie has an engaging soundtrack, tasteful camera work, and takes a misogynistically prurient perspective on its female lead.'' Such a "non-summative" judgement refuses to reduce those various dimensions of aesthetic value to a single aggregate aesthetic evaluation, like "it's a 6/10" or "it's a pretty good movie!" I defend both the modest claim that such non-summative evaluations are not mistaken and the extremist claim that summative (i.e., unidimensional) aesthetic evaluation is defective by considering other domains of normative assessment in which summing seems inappropriate, notably including evaluations of people's character. (shrink)

This practical and essential text, co-authored by an engineer and an ethicist, covers ethical dilemmas that any engineer might encounter on the job, emphasizing the responsibility of a practicing engineer to act in an ethical manner. To illustrate the complexities involved, the authors present characters who encounter situations that test the engineering code of ethics. The dialogue between the characters highlights different perspectives of each dilemma. As they proceed through the book, students see how the code of ethics can help (...) in decision making, as well as the implications of various decisions. The philosophical theory that supports the ethical situations encountered is presented as boxed material following each section. Important Notice: Media content referenced within the product description or the product text may not be available in the ebook version. (shrink)

The conflict in Gaza and Israel that ignited on October 7, 2023 signals a catastrophic breakdown in the possibility of ethical dialogue in the region. The actions on both sides have revealed a dissolution of ethical restraints, with unimaginably cruel attacks on civilians, murder of children, destruction of health facilities, and denial of basic needs such as water, food, and shelter. There is a need both to understand the nature of the ethical singularity represented by this conflict and what, if (...) any, options are available to allow the reconstruction of communication between the warring parties. This article seeks to address these tasks by analysing the conflict as inherently an ethical one, in the sense that it exposes a rupture in the fabric of communicative relationships that has evolved systematically out of the deep cultural structures from which all protagonists have emerged. Drawing on the work of Levinas, Habermas, Arendt, and others, and referring to the specific circumstances in the region, it examines the ethical sources of the crisis and tries to identify conditions for its resolution. The possibility of reconciliation—that is, of refiguring relationships to open up a space for dialogue to create pathways to heal the ruptures—is examined. The dark legacy of the Holocaust is identified as an abiding cultural vulnerability for both societies. It is concluded, however, that the rich history of partnerships and collaborations between Jews and Palestinians provides a robust infrastructure on the basis of which a sustainable peace might be built, providing a much-needed source of hope. (shrink)