Objective: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this. -/- Methods: We reviewed existing literature on the ethical and policy issues, developed an ethics framework called a “Points to (...) Consider” (P2C) document, and convened a national expert panel to review and critique the P2C. -/- Results: We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions (“Points”) that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care. -/- Discussion: The P2C is intended to clarify whatis at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion. (shrink)

For nearly two decades, the process of reviewing the ethical merit of research involving human subjects has been based on the application of principles initially described in the U.S. National Commission's Belmont Report, and later articulated more fully by Beauchamp and Childress in their Principles of Biomedical Ethics. Recently, the use of ethical principles for deliberating about moral problems in medicine and research, referred to in the pejorative sense as “principlism”, has come under scrutiny. In this paper we argue that (...) these principles can provide a foundation for the source of ethical appraisal of human research, but are not themselves wholly adequate for this purpose. Therefore, we further propose that (1) principles should be understood as heuristics that can be “specified” as described by DeGrazia (1992), and (2) that the principle‐based approach should be supplemented by formally incorporating “sensitivity to context” into the evaluation of clinical trials. (shrink)

As a preliminary step to beginning to assess the usefulness of clinical vignettes to measure ethical sensitivity in undergraduate medical students, five clinical vignettes with seven to nine ethical issues each were created. The ethical issues in the vignettes were discussed and outlined by an expert panel. One randomly selected vignette was presented to first, second and third year students at the University of Toronto as part of another examination. The students were asked to list the issues presented by the (...) patient problem. Responses from 281 students were obtained. These students identified an average of 2.72 ethical issues per vignette. Each response was classified under the domains of autonomy, beneficence and justice. Comparisons were made between classes and between vignettes. There was considerable variation between classes and the responses to different vignettes seem to indicate that different vignettes measure the various domains in different ways. It does appear that the use of vignettes is one way to measure aspects of ethical sensitivity in medical students but more study is required to clarify exactly what is being measured. (shrink)

An instrument to assess 'ethical sensitivity' has been developed. The instrument presents four clinical vignettes and the respondent is asked to list the ethical issues related to each vignette. The responses are classified, post hoc, into the domains of autonomy, beneficence and justice. This instrument was used in 1990 to assess the ethical sensitivity of students in all four medical classes at the University of Toronto. Ethical sensitivity, as measured by this instrument, is not related to age or grade-point average. (...) Sensitivity increases between the 1st and 2nd year and then decreases throughout the rest of undergraduate medical training, such that the 4th-year students identify fewer issues than those entering medical school. Students expressing a career choice of family medicine identify more issues than their peers. Several problems with the use of the instrument and the interpretation of the data were found. Nonetheless, these findings, if reproducible, are important and their meaning needs further discussion. (shrink)

The purpose of the work was to produce a framework to guide the development of meritorious clinical trial proposals. The framework consists of essential features of rigourous methodology, ethical acceptability, and a component referred to as "community context". These three domains were woven together in a checklist format under the headings of general, scientific and ethical considerations. Since texts concerning clinical trial methodology do not integrate ethics criteria and ethics guidelines do not provide detailed scientific criteria in obvious and practical (...) ways, we outline a more contemporary and comprehensive set of guidelines. (shrink)

Scientific developments of the last 20 years have made the transplantation of cadaveric solid organs a viable and expected treatment alternative for patients suffering from various forms of End Stage Organ Disease. Of the number of organs that could be utilized for this, only a small percentage of them are actually made available. North American legislation explicitly categorizes the transfer of cadaveric organs as an anatomical or tissue “gift”. The concept of the gift is mediated by transculturally consistent unwritten, but (...) powerfully felt, rules of conduct. Among the most profound elements of the concept is the obligatory gift-exchange which is central to the gift-relationship. Obviously, neither of these are permitted by the organ transplant scenario. As a result, dissonance is created within the thought process of the individual which cannot be easily resolved, paralyzing many into inaction. We maintain that the present legal framework, designed to facilitate the transfer of organs, clashes with the human phenomenon of giving, and may actually prevent organs from being made available. In a search for a solution to this gift-relationship dilemma, giving organs is contrasted with taking organs as a basis upon which to ground ethically sound public policy. Liberty-limiting principles and the concept of harm are considered within this context. (shrink)

Biobanks are increasingly being created specifically for research purposes. Concomitantly, we are seeing significant and evolving shifts in research ethics in relation to biobanking. Three discrete shifts are identified in this article. The first extends the ethical focus beyond the protection of human subjects to the promotion of broader community benefits of research utilizing biobanked resources, and an expectation that these benefits will be shared. The second involves the evolution of the traditional consent paradigm for future research uses of biobanks (...) resources that are not in contemplation at the time of donation. The third involves a move away from single project management to more dynamic governance accountability to research participants and the public. These shifts may take different local and institutional forms but share common recognizable elements. (shrink)

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)

O espaço ritual constitui-se num locus sagrado de festa. No palco religioso, o sentimento de reconhecer-se cheio do Esp í rito Santo ou incorporado pelas Entidades reescreve, no pr ó prio corpo do sujeito, a autenticidade de sua tradiçã o mitol ó gica. Simultaneamente, a experi ê ncia religiosa reatualiza o poder dessa tradiçã o. E s ã o v á rias as formas em que a narrativa m í tica emerge, vindo à tona e tornando-se tang ível à percep (...) çã o e à emo ção. E, neste sentido, a cultura desempenha um papel fundamental: ela é o elo a promover o encontro entre as verdades da crença e as experi ê ncias religiosas. Michel Meslin assinala que a religiã o só alcan ça o homem atrav é s das mediações culturais de seu tempo. Entre essas tamb é m variadas “ media ções culturais ” está a mú sica, com seus g ê neros, ritmos e uma forç a simb ó lica capaz de funcionar como chave, abrindo as portas das sensibilidades. Para al é m dos c â nticos – mas a eles conexos –, a experi ê ncia do transe ritual é um dispositivo de mediação cultural ainda mais poderoso: um d í namo de emoções liturgicamente sacralizadas. Este sentimento religioso de alegria tem suas bases na estrutura do sistema de crenças, e, assim, at é a cantiga que coadjuva e complementa os ritos, consubstancia seu status sagrado. Musicalizando o Sagrado, essa arte expressiva de f é e també m de cultura potencializa ainda mais o sentimento social de pertenç a à comunidade religiosa do indiv íduo, que também v ê alimentada sua esperança de vida. Este trabalho se envereda na trilha da experi ê ncia religiosa, em seus percalços sinuosos. Nesse caminho, a intençã o é compreender um pouco o funcionamento das engrenagens simb ó licas que conferem sentido à s manifesta çõ es performá ticas vividas por pentecostais e umbandistas, em dois grupos religiosos espec í ficos. E, ao analisar a relação entre a din â mica ritual desses cultos e a produção de sentidos operada nas linguagens gestuais dos sujeitos da crença, refletimos sobre os di á logos sem â nticos rituais que, construindo experi ê ncias de espiritualidade, reconstroem tamb é m experi ê ncias de vida. É quando a diverg ê ncia das cosmovisõ es sucumbe à convergê ncia dos significados religiosos. (shrink)

Can there be such a thing as moral science, or a science of morality? And if so, what sense has the word science in such a connection? In the middle of the last century such a question would probably have seemed superfluous. Utilitarians, Comtists, and not a few “evolutionists” would all have claimed to be moralists, with this advantage over the metaphysical or theological moralists of an earlier day that their own moral doctrines were “scientific”.

David Ricardo was a hugely influential British political economist and stock trader. This volume, first published in 1923, contains five important pamphlets published by him, edited and with an overarching introductory essay by E. C. K. Gonner. Each essay relates either to monetary and financial subjects - including the high price of Bullion, monetary theory and the position of the Bank of England - or to the agricultural conditions of Britain and proposed solutions to the problems discussed. This is a (...) fascinating and detailed work, which will be of great value to those with an interest in Ricardo’s theories and British economic history. (shrink)

Tsc question of the date of Ctesibius has been much obscured of late years by those German scholars1 who assert that Ctesibius the pneumatic and hydraulic engineer mentioned by Vitruvius IX. 8. 2 is distinct and separate from Κτησίβιος Κτησίβιος μηΧανικός who is mentioned by Athenaeus Mechanicus , Philo of Byzantium , and Hedylus ap. Athenaeum Naucratitam Deipn. XI., p. 497, d-e = Anthologia Graeca ed. Cougny, Paris , 1890, Vol. III., p. 298, n. 67.

The crisis of western civilization is a crisis of public philosophy. This is the charge of Public Philosophy and Political Science, a stunning new collection of essays edited by E. Robert Statham Jr. Vividly cataloging the decay of the moral and intellectual foundations of civic liberty, the book portrays a generation of Americans alienated from institutions built on public philosophy. The work exposes the failure of America's political scientists to acknowledge and understand this alarming crisis in the American body politic. (...) The distinguished contributors examine the evolution of public philosophy; the inextricable relationship between politics and philosophy; and the interplay between public philosophy, the constitution, natural law, and government. They reveal the dire threat to deliberative democracy and the fundamental order of constitutional society posed by public philosophy's waning power to refine, cultivate, and civilize. The work is an indictment of a society which has discarded a way of life rooted in natural law, democracy and the traditions of civility; and is a denunciation of an educated elite that has divorced itself from the standards upon which public philosophy rests. It is essential reading for philosophers and political and social scientists seeking to resurrect the standards of American public life. (shrink)

Robert E. Butts (1928-1997) was a philosopher and historian of science whose central concerns were the distinction between the rational and the irrational. He viewed scientific rationality as our major defence against the various conditions that encourage witch hunts and similar outbursts of irrationality, with all their attendant pain and terror. Butts saw himself as a pragmatic realist, combining what he took to be the best aspects of logical empiricism with a historically informed pragmatism, deeply appreciative of the methods of (...) science, trying to describe a kind of rationality essential in the struggle to preserve human values. This volume gathers previously unpublished essays and lectures with some previously published, thematically related essays. It includes essays and lectures on philosophical aspects of the European witch hunt, on scientific rationality and methodology, and on the relationships between science and philosophy exhibited in the writings of such historically significant figures as Leibniz, D'Alembert, Hume, Kant, Carnap and Kuhn. (shrink)