In lieu of an abstract, here is a brief excerpt of the content:The Human Genome ProjectSharon J. Durfy (bio) and Amy E. Grotevant (bio)In recent years, scientists throughout the world have embarked upon a long-term biological investigation that promises to revolutionize the decisions people make about their lives and lifestyles, the way doctors practice medicine, how scientists study biology, and the way we think of ourselves as individuals and as a species. It is called the Human Genome Project, and its (...) ultimate goal is to map and determine the chemical sequence of the three billion nucleotide base pairs that comprise the human genome. The feat is expected to take about fifteen years (see General Surveys).These three billion base pairs include an estimated 50,000 to 100,000 genes. The rest of the genome—perhaps 95 percent of it—is nongenic sequences with unknown function, sometimes called "junk." Determining the order and organization of all this material has been likened to tearing six volumes of the Encyclopaedia Brittanica into pieces, then trying to put it all back together to read the information (Surveys: Hall 1990). The effort could be well worth it, many scientists say, because it is expected to yield major insights into many common and complex diseases, including cancer, cardiovascular disease, and Alzheimer's disease (Debate: Dulbecco 1986; Koshland 1989).The Human Genome Project is not without controversy, however (Debate: Davis 1990; Leder 1990; Rechsteiner 1990). Many scientists fear that funding for it will be diverted from other areas of research, rather than obtained from new funding sources. This has enlivened the debate about the relative value of "big" versus "small" science. Also, the value of undertaking a complete sequencing of the genome has been questioned, especially given the high proportion of non-genic sequences.Advocates of the effort converted many critics by making two alterations in the original plan. Plans were included to simultaneously determine the nucleotide sequence of the genomes of other organisms; this provides comparisons and points of reference for the human sequence (U.S.: NIH/DOE 1990). Second, in response to concerns about the high cost of developing technology to sequence the whole [End Page 347] genome, the focus moved from large-scale sequencing to mapping the genome, which would hasten the search for disease genes (U.S.: NIH/DOE 1990).The ideal map would be both genetic, locating DNA markers, or signposts, at closely spaced intervals along the chromosomes, and physical, indicating the exact distance between these markers (Map: McKusick 1991). Since 1973, Human Gene Mapping workshops (HGM) have been held at least every two years to locate, compare, and compile genetic markers. This information is published and is accessible through Genome Database at Johns Hopkins University (McKusick 1991). The most recent Human Genome Mapping workshop was held in August 1991, at which the Human Genome Organization (HUGO) began to assume increased responsibility for coordination of the international mapping effort (Surveys: Maddox 1991).Historical Background of the United States EffortThe first serious discussions about sequencing the entire human genome occurred at a workshop at the University of California at Santa Cruz in 1985 (U.S.: Sinsheimer 1989). A second workshop, organized by the U.S. Department of Energy (DOE) and held in March 1986, addressed the feasibility of an organized program (U.S.: DOE 1986). Shortly thereafter, DOE instituted its own genome project (U.S.: DOE 1987). Reports in early 1988 from both the National Research Council (NRC) of the National Academy of Sciences (NAS) and Congress' Office of Technology Assessment (OTA) (U.S.: NRC 1988; OTA 1988) served as catalysts, and in fiscal year 1988, the U.S. Congress officially launched the Human Genome Project by appropriating funds to both the Department of Energy and the National Institutes of Health (NIH).To avoid potential congressional "meddling" (U.S.: Roberts 1988), NIH and DOE drafted a memorandum of understanding for interagency coordination in October 1988 (U.S.: NIH/DOE 1990). The agencies then created both separate and joint committees, and working groups to administer the project. NIH established the Office of Human Genome Research in 1988 (directed by James D. Watson) to plan and coordinate NIH genome activities. That office has evolved into the National Center for Human Genome Research (NCHGR... (shrink)

This paper discusses recent neuroscientific research that indicates a solution for what we label the ''causal problem'' of pain qualia, the problem of how the brain generates pain qualia. In particular, the data suggest that pain qualia naturally supervene on activity in a specific brain region: the anterior cingulate cortex (ACC). The first section of this paper discusses several philosophical concerns regarding the nature of pain qualia. The second section overviews the current state of knowledge regarding the neuroanatomy and physiology (...) of pain processing. The third section highlights the recent research by Rainville et al. [(1997) Pain affect encoded in human anterior cingulate but not somatosensory cortex, Science, 277, 968-971], which suggests that pain affect is encoded in the ACC. The final section of the paper spells out exactly how these data affect the causal problem of pain qualia. (shrink)

Over the past decade, interest in human enhancement has waxed and waned. The initial surge of interest and funding, driven by the US Army’s desire for a ‘Future Force Warrior’ has partly given way to the challenges of meeting operational demands abroad. However the ethical opportunities provided by soldier enhancement demand that investigation of its possibilities continue. Benefits include enhanced decision-making, improved force capability, reduced force size and lower casualty rates. These benefits — and enhancement itself — carry concomitant risks, (...) including morale issues due to tension between enhanced and unenhanced soldiers, the issues of enhanced veterans and ownership of enhanced bodies, challenges to the army’s core values and personal identity issues. A range of measures should be designed to highlight the opportunities offered by enhancement while also minimising the potential risks. This includes providing advice on which areas the army ought to demonstrate restraint in research for ethical reasons. (shrink)

Invisible Hand accounts of the operations of the competitive market are often thought to have two implications for morality as it confronts economic life. First, explanations of agents economic activities eschew constitutive appeal to moral notions; and second, such moralism is pernicious insofar as it tends to undermine the operations of a socially valuable social process. This is the Mandevillean Conceit. The Conceit rests on an avarice-only reading of the profit-motive that is mistaken. The avarice-only reading is not the only (...) way of characterising the profit-motive, and there are some positive grounds for thinking the benefits of profit pursuit are better attributed to the "lucrephile", and not the avarice-only "lucrepath". (shrink)

Curbside ethics consultations occur when an ethics consultant provides guidance to a party who seeks assistance over ethical concerns in a case, without the consultant involving other stakeholders, conducting his or her own comprehensive review of the case, or writing a chart note. Some have argued that curbside consultation is problematic because the consultant, in focusing on a single narrative offered by the party seeking advice, necessarily fails to account for the full range of moral perspectives. Their concern is that (...) any guidance offered by the ethics consultant will privilege and empower one party’s viewpoint over—and to the exclusion of—other stakeholders. This could lead to serious harms, such as the ethicist being reduced to a means to an end for a clinician seeking to achieve his or her own preferred outcome, the ethicist denying the broader array of stakeholders input in the process, or the ethicist providing wrongheaded or biased advice, posing dangers to the ethical quality of decision-making. Although these concerns are important and must be addressed, we suggest that they are manageable. This paper proposes using conflict coaching, a practice developed within the discipline of conflict management, to mitigate the risks posed by curbside consultation, and thereby create new “spaces” for moral discourse in the care of patients. Thinking of curbside consultations as an opportunity for “clinical ethics conflict coaching” can more fully integrate ethics committee members into the daily ethics of patient care and reduce the frequency of ethically harmful outcomes. (shrink)

Why has right-wing activism in Japan, despite its persistence throughout the postwar era, only gained significant traction recently? Focusing on the Zaitokukai, an anti-Korean movement in Japan, this article demonstrates how the new Far Right were able to popularize formerly stigmatized right-wing ideas. The Zaitokukai represents a political group distinct from the traditional right and reflective of new Far Right movements spreading worldwide. In Japan, concerns about the growing influence of South Korea and China in the 1980s as well as (...) the decline of left-wing norms opened up a discursive opportunity for the new Far Right. By framing Korean postcolonial minorities as undeserving recipients of social welfare benefits, the Zaitokukai mobilized perceptions of threat that has continued to powerfully influence public perceptions of Koreans even following the group’s organizational decline. While past research has focused on the new Far Right’s political influence, this article stresses their roles as ideological entrepreneurs. (shrink)

This paper presents the behavioral interview model that we developed to formalize our hiring practices when we, most recently, needed to hire a new clinical ethicist to join our staff at the Center for Ethics at Washington Hospital Center.

Boyer suggests that laws cannot account for ownership intuitions, but there may be situations when intuitions hew to laws almost perfectly. Laws granting governments taxation powers provide an interesting case study. We report data here suggesting that people's intuitions track law very closely, and are unaffected by manipulating a P() tag input. We propose two hypotheses to explain this finding.

As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. (...) Using stasis theory to draw out the important connection between definitional issues and resulting policies, we argue that the framework of genomic contextualism is better suited to evaluating genomics and its policy-relevant features to arrive at more productive discussion and resolve policy debates. (shrink)

This book takes an interdisciplinary, transnational and cross-cultural approach to reflect on, critically examine, and challenge the surprisingly robust practice of making art after death in an artist's name, through the lenses of scholars from the fields of art history, economics and law, as well as practicing artists. Works of art conceived as multiples, such as sculptures, etchings, prints, photographs and conceptual art, can be - and often are - remade from original models and plans long after the artist has (...) passed. Recent sales have suggested a growing market embrace of posthumous works, contemporaneous with questioning on the part of art history. Legal norms seem unready for this surge in posthumous production and are beset by conflict across jurisdictions. Non-Western approaches to posthumous art, from Chinese emulations of non-living artists to Native American performances, take into account rituals of generational passage and emotional aspects foreign to Western ideas. The book will be of interest to scholars working in art history, the art market, art law, art management, museum studies, and economics. (shrink)

Functional imaging studies of neurologically intact adults have demonstrated that the right posterior cerebellum is activated during verb generation, semantic processing, sentence processing, and verbal fluency. Studies of patients with cerebellar damage converge to show that the cerebellum supports sentence processing and verbal fluency. However, to date there are no patient studies that investigated the specific importance of the right posterior cerebellum in language processing, because: case studies presented patients with lesions affecting the anterior cerebellum, and group studies combined patients (...) with lesions to different cerebellar regions, without specifically reporting the effects of right posterior cerebellar damage. Here we investigated whether damage to the right posterior cerebellum is critical for sentence processing and verbal fluency in four patients with focal stroke damage to different parts of the right posterior cerebellum. We examined detailed lesion location by going beyond common anatomical definitions of cerebellar anatomy, and employed a recently proposed functional parcellation of the cerebellum. All four patients experienced language difficulties that persisted for at least a month after stroke but three performed in the normal range within a year. In contrast, one patient with more damage to lobule IX than the other patients had profound long-lasting impairments in the comprehension and repetition of sentences, and the production of spoken sentences during picture description. Spoken and written word comprehension and visual recognition memory were also impaired, however, verbal fluency was within the normal range, together with object naming, visual perception and verbal short-term memory. This is the first study to show that focal damage to the right posterior cerebellum leads to language difficulties after stroke; and that processing impairments persisted in the case with most damage to lobule IX. We discuss these results in relation to current theories of cerebellar contribution to language processing. Overall, our study highlights the need for longitudinal studies of language function in patients with focal damage to different cerebellar regions, with functional imaging to understand the mechanisms that support recovery. (shrink)

Dynamic Consent is both a model and a specific web-based tool that enables clear, granular communication and recording of participant consent choices over time. The DC model enables individuals to know and to decide how personal research information is being used and provides a way in which to exercise legal rights provided in privacy and data protection law. The DC tool is flexible and responsive, enabling legal and ethical requirements in research data sharing to be met and for online health (...) information to be maintained. DC has been used in rare diseases and genomics, to enable people to control and express their preferences regarding their own data. However, DC has never been explored in relationship to historical collections of bioscientific and genetic heritage or to contexts involving Aboriginal and Torres Strait Islander people.In response to the growing interest by First Peoples throughout Australia in genetic and genomic research, and the increasing number of invitations from researchers to participate in community health and wellbeing projects, this article examines the legal and ethical attributes and challenges of DC in these contexts. It also explores opportunities for including First Peoples' cultural perspectives, governance, and leadership as a method for defining DC on cultural terms that engage best practice research and data analysis as well as respect for meaningful and longitudinal individual and family participation. (shrink)

When a person engages in a "game," that person may reason and behave in a manner that is inconsistent with non-game-situation moral reasoning. In this study we measured moral reasoning with the Defining Issues Test (DIT). We then engaged the students in a competitive game and collected accounts of their "reasoning" by having them explain their decisions with a forced choice inventory. The results indicate that there were significant inconsistencies in moral reasoning between non-game and game situations. The implications of (...) this for business ethics are discussed. (shrink)

Patients have received experimental pharmaceuticals outside of clinical trials for decades. There are no industry-wide best practices, and many companies that have granted compassionate use, or ‘preapproval’, access to their investigational products have done so without fanfare and without divulging the process or grounds on which decisions were made. The number of compassionate use requests has increased over time. Driving the demand are new treatments for serious unmet medical needs; patient advocacy groups pressing for access to emerging treatments; internet platforms (...) enabling broad awareness of compelling cases or novel drugs and a lack of trust among some that the pharmaceutical industry and/or the FDA have patients’ best interests in mind. High-profile cases in the media have highlighted the gap between patient expectations for compassionate use and company utilisation of fair processes to adjudicate requests. With many pharmaceutical manufacturers, patient groups, healthcare providers and policy analysts unhappy with the inequities of the status quo, fairer and more ethical management of compassionate use requests was needed. This paper reports on a novel collaboration between a pharmaceutical company and an academic medical ethics department that led to the formation of the Compassionate Use Advisory Committee. Comprising medical experts, bioethicists and patient representatives, CompAC established an ethical framework for the allocation of a scarce investigational oncology agent to single patients requesting non-trial access. This is the first account of how the committee was formed and how it built an ethical framework and put it into practice. (shrink)

We argue that the universal recommendations against “off-label” pediatric use of approved COVID-19 issued by the FDA, CDC, and AAP are overbroad. Especially for higher-risk children, vaccination can be ethically justified even before FDA authorization or approval – and similar reasoning is relevant for even younger patients. Legal risks can also be managed, although the FDA, CDC, and Department of Health and Human Services (HHS) should move quickly to provide clarity.

We argue that two main accounts of hypocrisy— the deception-based and the moral-non-seriousness-based account—fail to capture a specific kind of hypocrite who is morally serious and sincere "all the way down." The kind of hypocrisy exemplified by this hypocrite is irreducible to deception, self-deception or a lack of moral seriousness. We call this elusive and peculiar kind of hypocrisy, pure hypocrisy. We articulate the characteristics of pure hypocrisy and describe the moral psychology of two kinds of pure hypocrites.

Volume 19, Issue 9, September 2019, Page 1-4.

The book will be an invaluable source for cognitive psychologists, neuroscientists, and students interested in this active and exciting area of research. This volume is the third in a series.

From 1998 to 2005, six elections took place in postcommunist Europe that had the surprising outcome of empowering the opposition and defeating authoritarian incumbents or their designated successors. Valerie J. Bunce and Sharon L. Wolchik compare these unexpected electoral breakthroughs. They draw three conclusions. First, the opposition was victorious because of the hard and creative work of a transnational network composed of local opposition and civil society groups, members of the international democracy assistance community and graduates of successful electoral (...) challenges to authoritarian rule in other countries. Second, the remarkable run of these upset elections reflected the ability of this network to diffuse an ensemble of innovative electoral strategies across state boundaries. Finally, elections can serve as a powerful mechanism for democratic change. This is especially the case when civil society is strong, the transfer of political power is through constitutional means, and opposition leaders win with small mandates. (shrink)

This chapter contains sections titled: Uh, Because I Am a Buddhist Impermanence and Permanent Tattoos ‘No Self’ and Body Art as Self‐expression Suffering, the First Truth of Both Buddhism and Getting Tattooed Mindfulness of Ink.

This chapter contains sections titled: Marx Sings the Revolutionary Blues Did the Buddha Have the Blues? Kierkegaard's Passion and the Passion of the Blues Notes.

During the early Islamic period Cyprus was a frontier territory unlike most—control, influence, and tax revenue over the island were shared mutually by both the Byzantine and Islamic states—and the historiographical record demonstrates that its legal and administrative status was fraught with challenges. The present study is based on the surviving Arabic material in Abū ʿUbayd al-Qāsim b. Sallām’s Kitāb al-Amwāl, subsequently transmitted in Kitāb Futūḥ al-buldān of al-Balādhurī. It argues that the problematic nature of Cyprus in this period, coupled (...) with Abū ʿUbayd’s unprecedented access to genuine correspondence of jurists from the end of the eighth century, led the author to enshrine important documentary evidence that did not survive elsewhere. Furthermore, it suggests that the continued source-critical and comparative analysis of early Arabic narrative source material can still yield fruitful information for an understanding of the earliest centuries of Islamic history despite the sources’ many limitations. (shrink)