Assessing Models of Public Understanding In ELSI Outreach Materials

Bruce V. Lewenstein, Ph.D. ; Dominique Brossard, Ph.D.

Cornell University

关键词: Elsi;    Genetics Outreach;    99 General And Miscellaneous//Mathematics, Computing, And Information Science;    Ethical, Legal, And Social Issues;    Communication;   

DOI  :  10.2172/876753
RP-ID  :  DOE/ER/63173-1
RP-ID  :  FG02-01ER63173
RP-ID  :  876753

美国|英语

来源: UNT Digital Library

【 摘 要 】

Advances in the science of genetics have implications for individuals and society, and have to be taken into account at the policy level. Studies of ethical, legal and social issues related to genomic research have therefore been integrated in the Human Genome Project (HGP) since the earliest days of the project. Since 1990, three to five percent of the HGP annual budget has been devoted to such studies, under the umbrella of the Ethical, Legal, and Social Implications (ELSI) Programs of the National Human Genome Research Institute of the National Institute of Health, and of the Office of Biological and Environmental Research of the U.S. Department of Energy (DOE). The DOE-ELSI budget has been used to fund a variety of projects that have aimed at ?promoting education and help guide the conduct of genetic research and the development of related medical and public policies? (HGP, 2003). As part of the educational component, a significant portion of DOE-ELSI funds have been dedicated to public outreach projects, with the underlying goal of promoting public awareness and ultimately public discussion of ethical, legal, and social issues surrounding availability of genetic information (Drell, 2002). The essential assumption behind these projects is that greater access to information will lead to more knowledge about ethical, legal and social issues, which in turn will lead to enhanced ability on the part of individuals and communities to deal with these issues when they encounter them. Over the same period of time, new concepts of ?public understanding of science? have emerged in the theoretical realm, moving from a ?deficit? or linear dissemination of popularization, to models stressing lay-knowledge, public engagement and public participation in science policy-making (Lewenstein, 2003). The present project uses the base of DOE-funded ELSI educational project to explore the ways that information about a new and emerging area of science that is intertwined with public issues has been used in educational public settings to affect public understanding of science. After a theoretical background discussion, our approach is three-fold. First, we will provide an overview, a ?map? of DOE-funded of outreach programs within the overall ELSI context to identify the importance of the educational component, and to present the criteria we used to select relevant and representative case studies. Second, we will document the history of the case studies. Finally, we will explore an intertwined set of research questions: (1) To identify what we can expect such projects to accomplish -in other words to determine the goals that can reasonably be achieved by different types of outreach, (2) To point out how the case study approach could be useful for DOE-ELSI outreach as a whole, and (3) To use the case study approach as a basis to test theoretical models of science outreach in order to assess to what extent those models accord with real world outreach activities. For this last goal, we aim at identifying what practices among ELSI outreach activities contribute most to dissemination, or to participation, in other words in which cases outreach materials spark action in terms of public participation in decisions about scientific issues.