The Center is committed to facilitating dialogue between the public, scientists, and policy makers in an effort to fully realize the benefits of advances in human genetics while avoiding potential pitfalls. It is important to uncover and address the areas of public concern - and optimism - about genetic research and its applications. The Center's aim is to inform the public conversation on genetics programs and policies with detailed information about the public's views.

The Center's initial work in public consultation focused on reproductive genetic technologies. Soon after its founding in 2002, the Center conducted an initial random digit dialing telephone survey of 1,211 members of the general public to assess awareness of and attitudes toward reproductive genetic technologies. The survey also explored views about privacy and disclosure of genetic information.

Informed by these survey findings, the Center conducted 21 focus groups in spring 2003 in order to gain a more nuanced understanding of Americans' underlying beliefs and attitudes about reproductive genetic technologies and the values that shape them. The groups focused on technologies including carrier testing, preimplantation genetic diagnosis (PGD), prenatal genetic testing, and genetic modification. The Center also conducted a series of interviews with individuals who have had more direct experiences with reproductive technologies, including patients and providers. The Center then used themes emerging from the focus groups and interviews to guide the development of a second survey, in 2004, of public attitudes about reproductive genetic technologies. A component of this survey of 4,834 Americans was to assess the relationship between views on the moral status of human embryos and opinions about technologies that involve embry destruction.

The Center also engaged more than 100 stakeholder and expert organizations in a conversation about the uses of reproductive genetic technologies. The Center met, individually or in groups, with community organizations, consumer advocacy groups, disability rights groups, faith-based advocacy / policy groups, government agencies and advisory boards, health care professional organizations, law / ethics / policy organizations, patient advocates, the private sector, religious organizations, science and research professional organizations, health care service providers, PGD serivce providers, and women's rights / health advocacy groups. As a result of these conversations, several organizations sought additional information, some initiated work on reproductive genetics issues, and others developed specific policy positions as a result of interactions with the Center.

One of the criticisms of traditional qualitative and quantitative approaches to assessing attitudes, especially about complex technologies, is that individuals are asked to give opinions about issues they may have little previous knowledge of or experience with. Therefore, using a public engagement approach known as deliberative democracy, the Center held six Genetic Town Halls across the country on reproductive genetic testing. Each forum gathered a diverse cross-section of citizens and community leaders to discuss reproductive genetic testing. Participants learned about the rapid advances in reproductive genetic testing, heard experts debate some of the challenging questions these capabilities raise, and deliberated with fellow participants about how society should address these issues. What are acceptable uses of reproductive gentetic testing? Should we set limits? If so, who should set them and how can they be enforced? Are we doing all we can to ensure that reproductive genetic tests are safe and effective? What is the impact on individuals, families and society? A similar dialogue was initiated online with 15 discussion groups.

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.