Public Engagement & Participation
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Print this pageThe Center's initial work in public consultation focused on reproductive genetic technologies. During this project the Center used a variety of approaches and methodologies to assess awareness of and attitudes about reproductive genetic technologies including carrier testing, preimplantation genetic diagnosis (PGD), prenatal testing, and genetic modification. Through two general population surveys in 2002 and 2004, focus groups, interviews with key informants, and town halls, the Center sought to understand peoples' perspectives about acceptable uses of reproductive technologies, the safety of tests, and the impact of testing on families, children, and society.
More recently, GPPC has expanded its public consultation activities to address other genetic technologies. In September 2005 the Center conducted a survey of 2,122 Americans using a Web-based tool to explore public attitudes about human embryonic stem cell (ESC) research. This survey assessed public understanding of the technologies, preferences for U.S. policy governing ESC research, and how various scientific scenarios might affect attitudes. Building on the 2004 survey, this survey included a refined tool for assessing views toward the moral status of human embryos that was used to evaluate the correlation between views of embryos and attitudes toward embryo research. In addition, the survey assessed the effect of language on attitudes by using either the term somatic cell nuclear transfer (SCNT) or cloning to describe the technique of deriving stem cells from embryos.
Early in 2007 the Center surveyed 1,199 adults on their views about genetic privacy and discrimination, examining public acceptance of the use of genetic testing for medical and non-medical purposes, whom Americans do and do not trust with their genetic information, and whether support exists for laws that would protect them from some forms of genetic discrimination.
One current public consultation project is "Making Every Voice Count: Public Consultation on Genetics, Environment, and Health," a pilot study funded under a cooperative agreement with the National Human Genome Research Institute. The goals of the project are to understand public attitudes about a proposed large-scale study involving hundreds of thousands of Americans who would be followed for up to 10 years in order to evaluate the complex interactions of genetics, environment, and lifestyle underlying common diseases. The consultation project is also piloting a community engagement model that might be used if a large-scale genes-environment study is initiated. The consultation project includes a nationwide survey plus focus groups, community leader interviews, and town hall meetings in and around Jackson, Miss.; the Kansas City area; Middletown and Philadelphia, Pa; Phoenix, Ariz.; and Portland, Ore.
The Center is also engaging veterans who receive their health care through the Veterans Administration to assess their attitudes toward genetic research and genomic medicine. During this one-year project, the Center will explore issues through focus groups with members of Veterans Service Organizations, as well as with veterans receiving care at several VA medical centers, community-based outpatient clinics, or readjustment counseling centers. The findings obtained from these focus groups will then be tested through a survey of veterans.
The high-quality data these projects generate are critical to informing conversations among policy makers, private organizations, industry, and the public about what the future of genetics and medicine should look like, and how best to achieve that vision.
