The Genetic Town Hall: Making Every Voice Count
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Date
2004
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Publisher
GENETICS & PUBLIC POLICY CENTER
Abstract
In six American cities during the summer of 2004, a unique information exchange took
place. From students to seniors, from medical professionals to people with disabilities,
from the homeless to the well-to-do, people with all types of perspectives convened
at Genetic Town Halls to learn more about a matter that aff ects the present and future
generations — reproductive genetic testing.
Reproductive genetic testing, which will touch millions of people, give parents more
options in having healthy babies, but they also raise troubling questions about future uses.
Today, it is possible to test for serious genetic disorders; tomorrow, it may be possible to
test for genetic contributions to characteristics such as intelligence.
Th e policy debate about these issues is oft en framed in the extremes. Yet the views of
most Americans tend to be 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 has undertaken extensive pubic opinion research through
surveys, focus groups and interviews. A diffi culty with these approaches, however, is that
individuals are sometimes asked to comment on issues involving complex technologies
about which they may have had little opportunity to consider in depth. Th us, the
Center undertook a project to obtain more informed, refl ective opinions by providing
an opportunity for individuals to learn more about reproductive genetic testing, hear
diff erent perspectives about the issues and engage in discussions with fellow citizens.
Th e six Genetic Town Halls: Making Every Voice Count provided a setting for informed
debate and discussion about the benefi ts and potential drawbacks of reproductive
genetic testing. Th e Town Halls went beyond simple focus groups designed to harvest
initial impressions; they instead set a process in motion, aimed at generating continued
engagement and discussion about the complex issues surrounding reproductive genetic
testing. From advance media coverage to personal conversations with family and friends
aft erward, the forums raised awareness and knowledge levels in the six communities
involved.
Information about reproductive genetic testing and the range of issues it raises was
provided at each forum in the form of videos prepared by the Genetics and Public
Policy Center. Computer animation sequences off ered an accessible grounding in the
science, with an overview of the types of reproductive genetic testing: carrier testing,
preimplantation genetic diagnosis and prenatal testing. Th rough interview footage,
the videos also off ered viewpoints about reproductive genetic testing from a variety of
experts in fi elds ranging from medicine to theology. In addition, participants could ask
experts on site to clarify issues or further explain the technologies at any point during the
discussions.
Participants also had an opportunity to hear from members and leaders of their own
communities. Th eologians and clergy, parents with fi rsthand experience of reproductive
genetic testing, medical professionals, community activists, elected offi cials and those in
the biotech industry gathered as local expert resources for the forums in each community
and shared their views with the audience during panel discussions.
Preface
4 The Genetic Town Hall: Making Every Voice Count
As participants learned, debated and deliberated during the 3.5-hour sessions, they
registered their opinions through a series of polling questions and during facilitated smalland
large-group discussions.
Th e forums, free and open to the public, were supported by a grant from Th e Pew
Charitable Trusts. All viewpoints were welcomed and sought. Outreach in each
community emphasized attracting participants from all walks of life, all neighborhoods
and all demographics. Some participants brought a blank slate and others, profound
personal experiences with genetic testing or genetic disorders.
At the Town Halls, participants made it clear that they wanted information, discussion
and input in the way these technologies are developed and implemented. Many expressed
concern that with the dramatic advances in knowledge and technology in genetics, the
Town Hall was not only critical, but on the edge of being too late. Th ey pointed out that
with rapid changes in the fi eld, such discussions must be ongoing and widespread.
Th is report summarizes the issues brought up by the participants in the six Town Halls
and their responses to questions posed. It looks at general trends, brings out points of
agreement and presents issues about 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, these reports off er an indication of the eff ectiveness
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 this summer will not end with the change of season, but that participants will
expand these activities in their own communities and throughout the nation.
Description
Keywords
genetics, public opinion