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462 A N D R E A B O N N I C K S E N

To look at the community of advocates is to identify alternatives to federal policy when national-level guidance beyond existing regulations is not forthcoming. Identifying the components is only an initial step, however, to be followed by evaluation of the integrity of the emerging expectations and practices and of the deliberations that preceded them. In addition, the enforceability of this decentralized policy is open to question. As a result, more than anything else, this community is a place of ‘softening’ of later more authoritative policy through open discussion and forums for learning and talking about policy proposals. The targets of these repeated deliberations are the general public, the specialized public, and the policy community itself (Kingdon 1984: 135). In this process norms and expectations evolve. As one analyst put it, ‘the more a proposal is discussed, the more seriously it is taken’ (Kingdon 1984: 148).

Several points can be made about future inquiry by policy analysts and commentators. First, a mindset is in order that begins with the assumption that the research will proceed. This shifts what is often a defensive posture about why research should proceed to a more pragmatic orientation about how to proceed ethically. This includes studies that anticipate issues and prepare for their management. Deliberations by the JHU group illustrate this mindset. Looking at ES cell research in general, the members anticipated issues such as justice questions in stem cell banks, discussed them, weighed values, and reached conclusions based in ethical analysis. While this may not please those who prefer not to proceed with ES cell research at all, it is realistic in view of ES cell studies underway.

Second, the ‘patchwork approach’ to stem cell oversight may not be as inchoate as first appears. An important contribution to the literature could be made by conducting a meta-analysis to create the equivalent of a data bank for guidelines. This helps to identify principles of agreement, treat these principles as a policy base, focus on how they can be implemented, and look to other problematic issues. A policy meta-analysis should include position statements and informal policies from the private sector as well as legally binding regulations. The policies should be critically examined for empty verbiage and bland acceptance as well as for creativity and anticipatory problem-solving. The need exists, in short, for an empirical dimension to inquiry to help consolidate and examine the array of commentaries already available.

Third, a meta-analysis should be undertaken with a cosmopolitan perspective. ES cell research is anchored in centers across nations, and it is here where practices can be examined to identify issues and methods of problem solving. The United Kingdom stands out, where ethical principles and codes of practice can guide policy even in nations that do not and never will have a central licensing system for research involving embryos. In addition, the international feature of trade in ES cells raises issues about oversight, conflicting pharmacologic guidelines, and transparency. An international perspective would be a welcome contribution to the

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literature; it depends on a willingness to go beyond national borders to seek policy leadership.

Fourth, given that additional politically volatile technologies are on the horizon, it makes sense to consider science under intense politics as a topic of inquiry in its own right. The usual truisms about science policy do not necessarily apply in the context of heightened politics. How, then, can policy be developed that allows for political intensity, which is a barometer of public values, and also enable effective guidance? In the case of SCNT, Congress provided a forum for political arguments and, in so doing, helped defuse sensationalism and avoid premature legislation. Yet this was a messy process that resulted in stalemate. The experience suggests that attention can be paid to improving the way Congress can deliberate in a reassuring way when new technologies evoke concern. Among the reforms might be to institute a consultative body for Congress to provide reliable and impartial analysis of issues in science and technology (Morgan and Peha 2003b). While the Congressional Research Service provides immediate technical information and the National Research Council is one of several sources for long-term analysis, no body under Congressional auspices provides mid-range studies of approximately a year (Morgan and Peha 2003b). If an office equivalent to the disbanded Office of Technology Assessment were held to be a priority by members of Congress and were instituted and consulted, it would provide an analytic alternative to the information-oriented and sometimes repetitive hearings.

In conclusion, therapeutic SCNT invites innovative analysis about managing science policy in a setting of heightened politics. This case suggests that a step in the analysis is to look critically and with a problem-solving mindset at resources promoted by those who are want to proceed in an ethical and responsible way.

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E R I C T. J U E N G S T

IN 2003 victory was declared by the scientists pursuing the Human Genome Project (Collins et al. 2003). This declaration marked the realization of three scientific goals: (1) the generation of genetic landmark maps of all the human chromosomes; (2) the production of an ordered, overlapping collection of DNA fragments covering the entire human genome; (3) the chemical sequencing of the DNA across the complete collection. Along the way, genome researchers had been identifying the functional coding regions within the genome, and describing an increasing number of correlations between the variant forms of these genes and other human biological traits. With the achievement of what some have called the ‘Holy Grail’ of human biology (Gilbert 1992), genomic science now prepares itself

This chapter was prepared with support from National Institutes of Health grant P50-HG03390 and the Center for Genetic Research Ethics and Law (CGREAL; as in ‘See . . . Grail’!) that it makes possible at Case Western Reserve University.

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