Scientists are wary of public participation in policy that influences the work of scientific discovery and technological application. In the area of genetic science this is particularly troublesome. The science and its applications are extremely complex. How the public can play a part in guiding the process is not clear. Yet genetic possibilities affect individuals and social groups intimately and the exercise of social responsibility for policies is imperative. A solution lies in effective partnership between scientific experts and the general public within the framework of representative democracy. Goals of education, information transfer, and community building point to methods for public participation. The community meeting approach used in the development of health care priorities in Oregon is highlighted. Obstacles to participation come from our weak sense of community, widespread political alienation, endemic cynicism, and problems of social voice.
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References
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The National Bioethics Advisory Commission was established in 1996 by President Clinton (Executive Order 12975). See the National Bioethics Advisory Commission Web site at http://bioethics.gov.
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See the project Web site at http://www.sph.umich.edu/group/cogs/genome.
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The community dialogues method is described at http://www.sph.umich.edu/group/cogs/genome/dialogues.htm.
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See the Kettering Foundation's Web site, http://www.kettering.org.
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The Oregon Genetic Privacy Act, a Policy Brief of the Oregon Health Policy Institute (Portland, OR: Oregon Health Sciences University, Department of Public Health and Preventive Medicine, February 1997), 2.
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J. S. Hammond , R. L. Keeney, and H. Raiffa, Smart Choices: A Practical Guide to Making Better Decisions (Boston, MA: Harvard Business School Press, 1999). See especially the discussion of objectives where fundamental objectives are distinguished from instrumental objectives, pp. 31-45.
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Prioritization of Health Services, A Report to the Governor and Legislature (Salem, OR: Oregon Health Services Commission, 1991). This report gives a detailed description of the method of setting priorities, including the function of the Oregon Health Decisions community meetings. The full Oregon Health Decisions report submitted to the Commission is included in the report as Appendix F (Health Care in Common, Report of the Oregon Health Decisions Community Meeting Process, April 1990).
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See the full report, R. Hasnain and M. Garland, Health Care in Common, Report of the Oregon Health Decisions Community Meetings Process: Report to the Health Services Commission to Identify Public Values for use in the Health Services Prioritization Process (Portland, OR: Oregon Health Decisions, April 1990). The report includes the script of the slide presentation, the items in the trigger instrument, the values identified by participants, and demographic information about the participants.
11.
Hasnain and Garland, Health Care in Common. The Report lists each value category and gives an indication of its frequency of occurrence, its basic meaning, examples of how people used it, and some interpretive comment by the writers. The value list is as follows: prevention, quality of life, cost effectiveness, ability to function, equity, effectiveness of treatment, benefits many, mental health and chemical dependency, personal choice, community compassion, impact on society, length of life, and personal responsibility.
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Oregon Health Decisions used this approach in its most recent statewide campaign to explore citizens' values about sharing the burden of paying for health care. See, M. Garland, B. Anderson, P. Mostow, J. Thigpen, and M. Luther, Searching for Fairness: A Report on Community Meetings Conducted for the Oregon Health Council and the Office for Oregon Health Plan Policy and Research (Portland, OR: Oregon Health Decisions, September 1998).
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