Abstract

The ELSI Program: Closing the Loop was an interpretive policy study undertaken to identify how the research and the researchers funded through the program to study the ethical, legal, and social implications of mapping the human genome contributed to the construction of a public policy agenda. The stated goals of this federal grant program, known as ELSI and administered through the National Center for Human Genome Research within the National Institutes of Health, was to maximize the benefits and minimize the harms of the genetic information developed as a result of the government supported genomic research. The purpose of the research project was to generate meaning and understanding regarding the social constructions of this community of researchers. Specifically, identifying themes in the process and outcomes of the research activity was intended to inform future public policy actions, thereby, closing the loop on the reflexive activity generated by the ELSI Program. The activities of the sixty-four researchers granted awards between 1990 and 1993 comprised the core sample for the study. The research process was embedded in a constructivist philosophy and the design included participant observation and an analysis of textual materials generated by the grantees. Data included periodical articles, authored and edited books, videos, popular print and visual media materials, conference papers and presentations, forum reports, interviews, and materials generated by the researcher in the process of the research--notes and analytic memos. Data analysis was an interpretive synthesis of a content analysis, contextual analysis, grounded theory coding categories, and the reflexive process of the researcher. ;The phenomena under investigation were the interactional activities of the ELSI group of researchers through which meaning was shaped on the ethical, legal, and social implications of genomic mapping. A theoretical model of the constructions of the researchers as developed included two core categories: "Framing Academic Constructions" and "Institutionalizing the Myth". The ELSI researchers used a variety of strategies, including rhetorical questioning, professional blocking and impersonalizing, plying a trade, and academic time in generating constructions. The research and researchers contributed to institutionalizing a myth of a genome through strategies that included being the expert, narrowing the focus, and marveling. The consequence of these social interactions was a process of "Making Points Not Meaning", participation in symbolic activities that generated few issues for the public policy agenda. The constructions of the policy study were then situated in the context of the discipline of public administration and policy studies. Significant to the impact of the research findings was understanding how the cooptation of these researchers might effect an health care delivery system dominated by commercial interests such as biotechnology and managed care organizations. The study concluded with a discussion of how situated knowledge constructions, social epistemology, interdisciplinarity, and interpretive research methods might contribute to enhanced credibility in public policy actions