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)

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.

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.

The view that we are animals -- animalism -- is often misunderstood. It is typically stated in unhelpful or misleading ways. Debates over animalism are often unclear about what question it purports to answer, and what the alternative answers are. The paper tries to state clearly what animalism says and does not say. This enables us to distinguish different versions of animalism.

Mounting evidence suggests that endorsement of psychological continuity and the afterlife increases with age. This developmental change raises questions about the cognitive biases, social representations, and cultural input that may support afterlife beliefs. To what extent is there similarity versus diversity across cultures in how people reason about what happens after death? The objective of this study was to compare beliefs about the continuation of biological and psychological functions after death in Tanna, Vanuatu, and the United States. Children, adolescents, and (...) adults were primed with a story that contained either natural or supernatural cues. Participants were then asked whether or not different biological and psychological processes continue to function after death. We predicted that across cultures individuals would be more likely to endorse the continuation of psychological processes over biological processes and that a theistic prime would increase continuation responses regarding both types of process. Results largely supported predictions; U.S. participants provided more continuation responses for psychological than biological processes following both the theistic and non-theistic primes. Participants in Vanuatu, however, provided more continuation responses for biological than psychological processes following the theistic prime. The data provide evidence for both cultural similarity and variability in afterlife beliefs and demonstrate that individuals use both natural and supernatural explanations to interpret the same events. (shrink)

The pioneering work of Edwin T. Jaynes in the field of statistical physics, quantum optics, and probability theory has had a significant and lasting effect on the study of many physical problems, ranging from fundamental theoretical questions through to practical applications such as optical image restoration. Physics and Probability is a collection of papers in these areas by some of his many colleagues and former students, based largely on lectures given at a symposium celebrating Jaynes' contributions, on the occasion of (...) his seventieth birthday and retirement as Wayman Crow Professor of Physics at Washington University. The collection contains several authoritative overviews of current research on maximum entropy and quantum optics, where Jaynes' work has been particularly influential, as well as reports on a number of related topics. In the concluding paper, Jaynes looks back over his career, and gives encouragement and sound advice to young scientists. All those engaged in research on any of the topics discussed in these papers will find this a useful and fascinating collection, and a fitting tribute to an outstanding and innovative scientist. (shrink)

This article reports on an exploratory study that used metaphoric objects as a therapeutic aid. During Rogerian therapy sessions, a metaphoric object was handed to clients. The metaphoric object was used as a reflection of an aspect of the client's being. The clients were asked to describe the effect the object had on them. The protocols obtained were subjected to a phenomenological analysis. The study indicates that metaphoric objects can be a useful therapeutic aid.

Gendlin proposes experiential concepts as bridges between phenomenology and logical formulation. His method moves back and forth, aiming to increase both natural understanding and logical formulation. On thesubjective side, the concepts requiredirect reference tofelt orimplicit meaning. There is no equivalence between this and the logical side. Rather, in logical explication, the implicit iscarried forward, a relation shown by many functions. The subjective is no inner parallel. It performsspecific functions in language. Once these are located, they also lead to developments on (...) the formulated side.To show some of this, Gendlin modifies Lakoff and Johnson ''s theory of metaphor, and expands it into a theory of all language use. He denies that a metaphor consists of a pattern or image, shared by two situations. There is only one situation — the metaphoric one. The original situation is actually a family of many uses. As in all speech, a word makes sense only as its use-family crosses with an actual situation in the actual spot in a sentence. Subjectively, a metaphor means this crossing. From it, long chains of new similarities and differences can be generated. Ways to study the functions and features of thiscrossing are proposed. (shrink)