In lieu of an abstract, here is a brief excerpt of the content:The Ethical, Legal, and Social Implications Research Program at the National Human Genome Research InstituteEric M. Meslin (bio), Elizabeth J. Thomson (bio), and Joy T. Boyer (bio)Organizers of the Human Genome Project (HGP) understood from the beginning that the scientific activities of mapping and sequencing the human genome would raise ethical, legal, and social issues that would require careful attention by scientists, health care professionals, government officials, and (...) the public. The establishment of the ELSI (ethical, legal, and social implications) programs at the National Human Genome Research Institute (NHGRI) and the Department of Energy (DOE) was thought to be vital to the success of the HGP in the United States. It also provided a novel approach to the simultaneous study of ethical, legal, and social issues and basic scientific issues. Eric Juengst, the first director of the ELSI program, described its origins in a previous issue of the Kennedy Institute of Ethics Journal (Juengst 1991). Now in its seventh year, the ELSI program has accomplished much. This article summarizes the evolution and goals of the ELSI program at NHGRI, outlines the program’s current research priorities with examples of activities within each priority area, and provides a look to the future, including the initiation of a strategic planning process.Evolution and Goals of the ELSI Research ProgramThe HGP’s “genomic” goals are unique: to map and sequence the entire human genome—some 3 billion base pairs that make up approximately 80–100,000 genes—and the genomes of related model organisms by the year 2005. This goal was particularly ambitious since, when it was proposed, the technologies for mapping and sequencing had yet to be developed. When the HGP was first established, its organizers also elaborated a set of ELSI goals, which they saw as vital to the success of the genome project. The original ELSI goals were: (1) to anticipate and address the implications of the HGP for individuals and society and (2) to examine the ELSI consequences of mapping and sequencing the human genome in order to stimulate public discussion. To meet these goals, the NHGRI created its ELSI research program in 1990. Along with mapping, sequencing, [End Page 291] and mammalian genetics, ELSI was one of four original branches in the NHGRI Division of Extramural Research that funded research in those areas. Although the individual “branches” no longer exist, the mechanisms for funding research remain much the same. While the overall goals of the program have not changed, the specific ways of achieving the goals have continued to evolve. The importance of the ELSI program lies not in the collection of a full set of data that will be valuable in and of itself, but in the value of using and interpreting this new set of information.Early on, the NHGRI described a set of somewhat more specific goals: (1) to develop a program to help understand the ethical, legal, and social implications of the human genome project and (2) to identify and define the major issues of concern and develop policy options to address them. These more specific goals have been largely met. As the most recent biennial NHGRI Progress Report notes, “a robust ELSI research and education program has been established, many of the most urgent ELSI issues have been identified, and many policy options to address these issues have been proposed” (NCHGR 1995, p. 21). Between 1990 and 1996, ELSI provided more than $32.5 million in funding through 128 research and education grants in more than 30 states and in Canada (Table 1). The ELSI research budget is unique in that when originally created, it was specifically tied to the amount of money provided for the overall NHGRI budget. The NHGRI originally devoted 3 percent of its extramural budget to fund ELSI projects, but in FY 1991, it increased the ELSI budget to 5 percent, a figure that remains today. Table 2 lists the expenditures for each fiscal year since 1990 and the cumulative expenditures to date. The ELSI research budget at NHGRI this year will be about $7 million. When other sources of funding—e.g., co-funding arrangements with other institutes and agencies and the funding of ELSI... (shrink)

Genetic testing for cancer susceptibility is an application of biotechnology that has the potential both to improve the psychosocial and physical wellbeing of the population and to cause significant psychosocia1 and physical harms. In spite of the uncertain value of genetic testing, it has captured the interest of biotechnology companies, researchers, health care providers, and the public. As more tests become feasible, pressure may increase to make the tests available and reimbursable. Both the benefits and harms of these tests lie (...) not as much in the tests themselves, as in their power to predict or alter the future. The value of the tests does not derive from the information per se, but from the ability to communicate effectively the information to patients and providers, and the behavioral responses of patients, providers, and others to this information. (shrink)

Genetic testing for cancer susceptibility is an application of biotechnology that has the potential both to improve the psychosocial and physical wellbeing of the population and to cause significant psychosocia1 and physical harms. In spite of the uncertain value of genetic testing, it has captured the interest of biotechnology companies, researchers, health care providers, and the public. As more tests become feasible, pressure may increase to make the tests available and reimbursable. Both the benefits and harms of these tests lie (...) not as much in the tests themselves, as in their power to predict or alter the future. The value of the tests does not derive from the information per se, but from the ability to communicate effectively the information to patients and providers, and the behavioral responses of patients, providers, and others to this information. (shrink)

In my contribution to this volume, I (BHS) comment on on the stultifying rhetoric of contemporary analytic moral theory as illustrated in Judith Jarvis Thomson's Tanner Lectures, with particular reference to Thomson's anxieties about the moral relativism exhibited by college freshman and to her efforts--quite strained, in my view, and inevitably unsuccessful--to demonstrate the existence of objective judgments in matters of morality and taste .

Gilbert et al. argue that the neuroethics literature discussing the putative effects of Deep Brain Stimulation on personality largely ignores the scientific evidence and presents distorted claims that personality change is induced by the DBS stimulation. This study contributes to the first-hand primary research on the topic exploring DBS clinicians’ views on post-DBS personality change among their patients and its underlying cause. Semi-structured interviews were conducted with sixteen clinicians from various disciplines working in Australian DBS practice for movement disorders and/or (...) psychiatric conditions. Thematic analysis of the interviews revealed five primary themes: 1) types, frequency and duration of personality change, 2) causes of personality change, 3) impact on patient and family, 4) communication, comprehension and awareness, and 5) management. Clinicians described a variety of personality changes in Parkinson’s disease following DBS including irritability, impulsivity and impaired decision-making. The frequency of personality change seen in patients varied amongst clinicians, but changes were overwhelmingly transient. Clinicians considered both DBS stimulation and additional factors as inducing personality change. For DBS patients with major depressive disorder, a restoration of pre-morbid personality was associated with alleviation of illness. Considerations for future research of personality change following DBS include selecting suitable tools for quantitative examination and developing a common language between the scientific and ethics communities. Clinical implications including recommendations for the informed consent process for patients and families and clinicians’ management of personality change are discussed. (shrink)

Gilbert et al. argue that the neuroethics literature discussing the putative effects of Deep Brain Stimulation on personality largely ignores the scientific evidence and presents distorted claims that personality change is induced by the DBS stimulation. This study contributes to the first-hand primary research on the topic exploring DBS clinicians’ views on post-DBS personality change among their patients and its underlying cause. Semi-structured interviews were conducted with sixteen clinicians from various disciplines working in Australian DBS practice for movement disorders and/or (...) psychiatric conditions. Thematic analysis of the interviews revealed five primary themes: 1) types, frequency and duration of personality change, 2) causes of personality change, 3) impact on patient and family, 4) communication, comprehension and awareness, and 5) management. Clinicians described a variety of personality changes in Parkinson’s disease following DBS including irritability, impulsivity and impaired decision-making. The frequency of personality change seen in patients varied amongst clinicians, but changes were overwhelmingly transient. Clinicians considered both DBS stimulation and additional factors as inducing personality change. For DBS patients with major depressive disorder, a restoration of pre-morbid personality was associated with alleviation of illness. Considerations for future research of personality change following DBS include selecting suitable tools for quantitative examination and developing a common language between the scientific and ethics communities. Clinical implications including recommendations for the informed consent process for patients and families and clinicians’ management of personality change are discussed. (shrink)

Gilbert et al. argue that the neuroethics literature discussing the putative effects of Deep Brain Stimulation on personality largely ignores the scientific evidence and presents distorted claims that personality change is induced by the DBS stimulation. This study contributes to the first-hand primary research on the topic exploring DBS clinicians’ views on post-DBS personality change among their patients and its underlying cause. Semi-structured interviews were conducted with sixteen clinicians from various disciplines working in Australian DBS practice for movement disorders and/or (...) psychiatric conditions. Thematic analysis of the interviews revealed five primary themes: 1) types, frequency and duration of personality change, 2) causes of personality change, 3) impact on patient and family, 4) communication, comprehension and awareness, and 5) management. Clinicians described a variety of personality changes in Parkinson’s disease following DBS including irritability, impulsivity and impaired decision-making. The frequency of personality change seen in patients varied amongst clinicians, but changes were overwhelmingly transient. Clinicians considered both DBS stimulation and additional factors as inducing personality change. For DBS patients with major depressive disorder, a restoration of pre-morbid personality was associated with alleviation of illness. Considerations for future research of personality change following DBS include selecting suitable tools for quantitative examination and developing a common language between the scientific and ethics communities. Clinical implications including recommendations for the informed consent process for patients and families and clinicians’ management of personality change are discussed. (shrink)

Lists of species underpin many fields of human endeavour, but there are currently no universally accepted principles for deciding which biological species should be accepted when there are alternative taxonomic treatments (and, by extension, which scientific names should be applied to those species). As improvements in information technology make it easier to communicate, access, and aggregate biodiversity information, there is a need for a framework that helps taxonomists and the users of taxonomy decide which taxa and names should be used (...) by society whilst continuing to encourage taxonomic research that leads to new species discoveries, new knowledge of species relationships, and the refinement of existing species concepts. Here, we present 10 principles that can underpin such a governance framework, namely (i) the species list must be based on science and free from nontaxonomic considerations and interference, (ii) governance of the species list must aim for community support and use, (iii) all decisions about list composition must be transparent, (iv) the governance of validated lists of species is separate from the governance of the names of taxa, (v) governance of lists of accepted species must not constrain academic freedom, (vi) the set of criteria considered sufficient to recognise species boundaries may appropriately vary between different taxonomic groups but should be consistent when possible, (vii) a global list must balance conflicting needs for currency and stability by having archived versions, (viii) contributors need appropriate recognition, (ix) list content should be traceable, and (x) a global listing process needs both to encompass global diversity and to accommodate local knowledge of that diversity. We conclude by outlining issues that must be resolved if such a system of taxonomic list governance and a unified list of accepted scientific names generated are to be universally adopted. (shrink)

In Portraits of American Philosophy, eight of America's most prominent philosophers offer autobiographical narratives that remind us that the life of a scholar is both a tale of personal struggle and an adventure in ideas.

The 30th anniversary of the first DBS surgery of the subthalamic nucleus (STN) for Parkinson’s disease was celebrated in Grenoble this June. Since this initial surgery, the application of DBS has e...

Probably few scholars would now doubt that at least the bulk of the matter both of Servius' commentary on Virgil and of the additions to it which were first printed by Daniel descends from Donatus. The problem of these additions has been approached by a number of writers from different directions, and different lines of evidence have been found to converge on one conclusion. An important contribution to the discussion has recently been made by J. J. Savage in a thorough (...) study of the multifarious scholia contained in the well-known Bernensis 165 and some other Virgil manuscripts.1 He shows that some of these scholia go back to a commentary which was fuller than that of Servius, and which moreover was related both to S and to D.2 Other fragments of such a commentary are to be found by those who have the patience to sift the rubbish of the Latin glossaries,3 and also, among other sources, in Isidore, who is all the more useful for his habit of verbal transcription.4 When material of this kind is found, there is a strong temptation to say ‘Here is Donatus,’ and one can hardly doubt that that is where much of it ultimately comes from; but the question how far we may assume that the words of Donatus are directly reproduced can hardly yet be regarded as satisfactorily answered. I have before ventured to doubt whether Donatus was the immediate source of D.5 Professor Rand and Mr. Savage think that he was, that the compiler of SD supplemented S with material which S had not reproduce from Donatus the statement to which S had objected. (shrink)

The name of Gerhard PODSKALSKY is well known to all Byzantinists and his works on Russian Christianity and theology (988–1237) and Greek theology (1453–1821) published by Beck in 1982 and 1988 respectively have become classic works of reference. Since both Bulgaria and Serbia were the Empire's immediate neighbours and at various times integral parts of the Byzantine Empire this book is of greater importance for the Byzantinist than the previous two and without any doubt it will find a place in (...) every scholar's library. In his preface the author stresses (p. VII) that the book has been written with Western scholars in mind and for this reason he not only gives brief summaries of the contents of all original Slav works but also lists translations in Western languages of the works discussed, which makes the book invaluable for scholars who do not have a working knowledge of Slavonic and modern Slav languages. (shrink)

Cistifero was the reading of A and B, but for want of a satisfactory interpretation of it, or indeed any evidence for it, cistibero has been preferred. Hirschfeld, who first brought this forward , explained it as meaning one of the ‘quinqueuiri cis Tiberim,’ a low official contrasting effectively with the senator of Gellia's dreams. It seems worth while to call attention to the Abstrusa gloss ,‘Vicorum et cistifer nomina sunt metallorum’ There seems to be no doubt that the first (...) word should be uiocurus ; and in theNotae Tironianae uiocurus and cistifer stand thus in succession at the end ofa list of officials. Heraeus thinks the author of the gloss must have confused the words with cistophorus and uictoriatus; but would he be likely to write metallorum for ‘coins’ ? For this last word in the gloss magistratuum has been proposed, a somewhat violent change even in a glossary. I suggest metatorum; cf.Abstr. 116, 17,‘Metatores: mansionum praeparatores.’ Was cistifer perhaps the title of a low-grade official who had something to do on the staff of a quartermaster? (shrink)

The struggles in the first half of 1471 in which Edward IV recovered the throne produced various pieces of historical writing. It is generally assumed that the basic work is the chronicle written in the official interest, called the Historie of the Arrivall of Edward IV, which was edited by John Bruce for the Camden Society in 1838 from the British Museum manuscript Harleian 543, a copy by John Stow from the book of Master Fleetwood, the Recorder of London. This (...) chronicle was used, though in a more complete version that that of Stow's transscript, by the Flemish chronicler Jean Wavrin, and there is also a shorter French narrative, which Bruce considered an abridgement of the fuller text, and which C. L. Kingsford in his major study of English fifteenth-century chronicles regarded as of no importance. A text of the shorter version seems to have been one source of the account of Edward's recovery of the crown in Thomas Basin's History of Louis XI, though he does not use all of it and must have had additional material. (shrink)

κάτοπτρον, which is in all the manuscripts, was emended by Canter to κάτοπτον, and this emendation, or Headlam's κατόπτην, has been received by subsequent editors. Those who read κάτοπτον have been in the habit of taking the word to mean here ‘looking down upon’, and in support of this interpretation they sometimes adduce a scholium in M, κατόψιον. This does seem to prove that the scholar, whose note is copied in our scholium, found κάτοπτον in his text. Presumably he took (...) Σαρωνικο πορθμο κάτοπτον to signify ‘descried from the Saronic gulf’, having very possibly in his mind the phrase in Euripides, Hippolytus 30, where the temple of Cypris is said to be κατόψιον γς τσδε, visible from Troezen. At least we ought not without proof to lay to his account what appears to be the solecism of regarding κάτοπτον as if it meant ‘looking down upon’. Headlam's κατόπτην has at least an active force, but I cannot find that it means ‘one who looks down upon’, if that is the sense desired; it is a ‘spy’ or an ‘inspector’. And, at the end of all discussion, when one asks what in fact is this peak or headland that ‘looks down upon the Saronic crossing’, then commentators take refuge in silence or tend to contradict one another. An emendation that nobody can be sure he understands can hardly be regarded as satisfactory. It may be feared that what has happened is this. In order to get rid of κάτοπτρον, which appeared to them devoid of meaning, editors have introduced into the text a word which does not mean what they want it to mean, and which, if it had that meaning, would still present us with a picture which no man can recognize. (shrink)

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both (...) distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19. (shrink)