About the SymposiumOn February 17, 1997, the symposium "The Human Genome Project: What's the public got to do with it?" was convened at the Annual Meeting of the American Association for the Advancement of Science in Seattle, Washington. Nine distinguished speakers presented substantive approaches and strategies for stimulating structured public dialogue on the Human Genome Project. With partial funding provided by the U.S. Department of Energy and the support of AAAS's Scientific Freedom, Responsibility and Law Program, we have produced this Web site to provide access to the various materials and presentations generated on this important and timely topic. Prior to coming to Seattle, the participants engaged in a lively and informative dialogue through a private, e-mail based discussion group. The transcript of this discussion is available as part of this site. In addition, all nine presentations made at the meeting are now available electronically in RealAudio. You can listen to them through the magic of the Internet right in the comfort of your office, classroom, or home. BackgroundThere is a long and continuing history of the public perceptions (or misperceptions) of the nature and implications of modern molecular genetics, including the safety of gene splicing, the release of genetically modified organisms into the environment, human gene therapy, and now the many questions concerning the use of genetic information. Failure to educate and inform citizens--failure to tap into the values, beliefs, and meanings they attach to science and technology--could well result in an errosion of confidence in and support of the scientific community (Science, 6/11/93, p. 1571). Indeed, NSF Director, Neal Lane believes that achieving a "...vibrant 21st-century American dream [of] opportunities, aspirations, and a better quality of life" will only be possible when the science and engineering community carries "...our understanding of science and its value into the lives of all Americans" through a two-way dialogue between the public and scientists (Science, 2/23/96, p. 1037). With its deliberate commitment to identify the ethical, legal, and social implications of its own scientific progress, the Human Genome Project (HGP) can be a powerfully illuminating model for promoting public understanding of contemporary science and technology. We are already seeing a stream of new genetic interventions flow from human genome research. Clinicians are increasingly able to offer more and more diagnoses of defects at the DNA level and therapeutic manipulation of genes that direct human development and disease. As the debate on health reform languishes, these new technologies are entering a health care system sensitive to resource limitations. As a result, proponents of genetic interventions derived from human genome research are being challenged to demonstrate the cost-effectiveness of their products at a level totally unknown to previous health care researchers. This is leading to myriad questions regarding new approaches for setting priorities and values. What genome projects should we focus on first? How should new knowledge be used to distinguish normality from abnormality? Should screening for certain genetic diseases or conditions be mandatory? Who should have access to personal genetic profiles? What consequences should such decisions have on health care, health insurance, life insurance, employment decisions, disability insurance, the law, education, and access to positions of social authority and power? Who can decide such matters? Does the public have a role to play in these decisions? Viewed through the lenses of science, sociology, bioethics, education, religion, public health, industry, and policy making, this full-day session convened at the 1997 Annual Meeting of the American Association for the Advancement of Science explored substantive approaches and strategies for stimulating structured dialogue that produces:
In the process, the symposium attempted to answer the laymen's question, "What has this go to do with me?" At the same time, and equally important, it asked, "Is educating scientists to respond to the concerns of the public an integral part of doing science in the public interest"? The symposium was organized by Gregory Fowler, Professor of Biology and Director, Churchill Honors Program, Southern Oregon University, and Alexander Fowler, Program Associate, Scientific Freedom, Responsibility and Law Program, American Association for the Advancement of Science.
The following nine distinguished speakers participated in the symposium: Glen A. Evans
David Micklos
Celeste Condit
Fatimah Jackson
Eric Juengst
Ronald Cole-Turner
Michael Garland
Mark S. Frankel
Burke K. Zimmerman
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