In much the same way that genomic technologies are changing the complexion of biomedical research, the issues they generate are changing the agenda of IRBs and research ethics. Many of the biggest challenges facing traditional research ethics today — privacy and confidentiality of research subjects; ownership, control, and sharing of research data; return of results and incidental findings; the relevance of group interests and harms; the scope of informed consent; and the relative importance of the therapeutic misconception — have become (...) important policy issues over the last 20 years because of the ways they have been magnified by genomic research efforts. Research that examines the ethical, legal, and social implications of human genomics research has become a burgeoning international field of scholarship over the last 20 years, thanks in part to its support first by the genome research funding bodies in the U.S. and then by national science agencies in other countries. (shrink)

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)

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)

With so much attention being paid to the development and refinement of appropriate criteria and tests for death, little attention has been given to the broader conceptual issues having to do with its definition or with the relation of a definition to its criterion. The task of selecting the correct criterion is, however, virtually impossible without proper attention to the broader conceptual setting in which the definition operates as the key feature. All of the issues I will discuss arise because (...) of this lack of concern with conceptual matters. Such problems as incorrectly diagnosing a patient as dead prior to the harvesting of his or her organs, defending the idea that death is reversible, and advocating a brainstem criterion of death, are all, I believe, errors that derive from this misplaced emphasis. (shrink)

An important contribution to the foundations of probability theory, statistics and statistical physics has been made by E. T. Jaynes. The recent publication of his collected works provides an appropriate opportunity to attempt an assessment of this contribution.

(1983). Orthodoxie religieuse et sciences humaines suivi de (religious) orthodoxy, rationality and scientific knowledge. History of European Ideas: Vol. 4, No. 3, pp. 346-348.

One of the most recent writers on the early history of Rome has shown that the framework of the traditional story is perhaps to be trusted, even though there are many details, inconsistent and self-contradictory, which are obviously to be rejected. In view of this fact, it might be worth while to reconsider the Coriolanus story, the prevailing opinion concerning which is that vouchsafed by Mommsen many years ago: ‘die Erzählung ist ein spät, in die Annalen eingefügtes, darum in alien (...) Stücken denselben ungleichartiges und widersprechendes Einschiebsel.’ The reasons for arriving at such an opinion are sufficiently obvious to warrant their receiving but the barest recital. First, it is incredible that the Volsci would either choose a renegade Roman to be their general, or, even if they did, allow him at the last minute to rob them of the fruits of victory. Secondly, inconsistencies in the version of the story which we possess induce us to suspect its historicity; for example, Dionysius of Syracuse is made to send corn to the starving Romans'—yet Dionysius lived some hundred years later; a youthful Coriolanus is represented as having considerable influence in the senate—yet in those early days the senate was essentially a gathering of venerable men; the Roman populace learns immediately the gist of Coriolanus' remarks in the senate—yet senate meetings were held in secret; Volsci are allowed to attend the ‘ludi’ and to meet at the Spring of Ferentina—yet in the fifth century none but Latini could do this; the Roman Marcius is given an honorific cognomen, Coriolanus, because of his behaviour at the capture of Corioli—yet such cognomina were not granted until the third century or even later and even then only to the general and not to the subordinate; the plebs is represented as wielding great power in the assembly1—yet we know that in the fifth century it did nothing of the kind. (shrink)

The "gang of four" — Wang Hung-wen, Chang Ch'un-ch'iao, Chiang Ch'ing and Yao Wen-yuan — have created great chaos by confusing the relations between ourselves and the enemy, obliterating the differences between the two kinds of contradiction, wrecking Chairman Mao's policy of uniting with, educating and reforming intellectuals, calling intellectuals the "stinking number nine," smothering the revolutionary initiative of the broad masses of intellectuals, and destroying the ranks of revolutionary intellectuals.