The Genetic Town Hall: Making Every Voice Count
Advances in reproductive genetic technologies today offer prospective parents an increasing array of options to help them have healthy babies. But these same advances also can raise troubling questions about the extent to which parents can or should choose the characteristics of their children.
Parents today can be tested to see if they carry a mutation in a gene that puts them at risk to have a child with a serious genetic disorder. Parents who are at risk can test embryos created through in vitro fertilization and select which embryos to transfer to the mother's womb, or test a fetus during pregnancy to see if it is affected. Today we test for serious genetic disorders. In the future, as we learn more about genes, it may be possible to test for less serious disorders, or even characteristics such as behavior and intelligence.
While public debate about these issues often is framed by positions at the far ends of the policy spectrum, the views of most Americans are more nuanced. To better understand American opinions and attitudes about reproductive genetic testing and the values that shape them, the Genetics and Public Policy Center - with funding from The Pew Charitable Trusts - has conducted extensive public opinion research through surveys, focus groups and interviews as described in the Center's report Reproductive Genetic Testing: What America Thinks. Although this report reveals a wealth of information about public attitudes towards reproductive genetic technologies, one difficulty with these approaches is that individuals are asked to comment on issues involving complex technologies about which they may have had little opportunity to become informed or consider in depth. Thus, the Center undertook a complementary project to obtain more informed, reflective opinions by providing an opportunity for individuals to learn more about reproductive genetic testing, hear different perspectives about the issues and engage in discussions with fellow citizens.
The six Genetic Town Halls provided a setting for informed debate and discussion about the benefits and potential drawbacks of reproductive genetic testing. The Town Halls went beyond simple focus groups designed to harvest initial impressions; they instead were aimed at generating continued engagement and discussion about complex issues surrounding reproductive genetic testing in the six communities involved.
Genetic Town Halls were held in Sacramento, California on June 29, 2004; Seattle, Washington on July 1, 2004; Kalamazoo, Michigan on July 19, 2004; Fort Worth, Texas on July 31, 2004; New York City on August 2, 2004; and Nashville, Tennessee on August 4, 2004. The Town Halls were free and open to the public. Each forum gathered a diverse cross-section of citizens and community leaders to engage in in-depth dialogue about 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 we as a society should address these issues. What are acceptable uses of reproductive genetic 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?
The report The Genetic Town Hall: Making Every Voice Count summarizes the six Town Halls. It looks at general trends, identifies points of agreement and presents issues over which individuals were divided. Also included are individual reports from each forum that allow for a glimpse at the attitudes and opinions in each of the six cities.
As a whole, the Genetic Town Halls offer an indication of the effectiveness of engaging the public in the policy debate about advances in genetics and a picture of the public's values and policy preferences for guiding the future use of these potent tests. It is the hope of the Genetics and Public Policy Center that the informed discussion begun the summer of 2004 will not end, but that participants will expand these activities in their own communities and throughout the nation.
Pew is no longer active in this line of work, but for more information, visit the Genetics & Public Policy Center Web site or visit the Genetics and Public Policy Centeron PewHealth.org.
