Appalachian Americans are an underserved population
with increased risk for diseases having strong genetic
and environmental precursors. The purpose of this study is to
understand the thoughts and perceptions of genetic research of
Appalachian Americans residing in eastern Ohio prior to
conducting a genetic research study with this population. A
genetic survey was developed and completed by 180 participants
from Marietta, Cambridge and East Liverpool, Ohio.
The majority of respondents were Caucasian women with a
median age of 37.5 years. We found that participants had a
high interest in participating in 80 %, allowing their children
to participate in 78 %, and learning more about genetic research
studies (90 %); moreover, they thought that genetic
research studies are useful to society (93 %). When asked
what information would be useful when deciding to participate
in a genetic research study, the following were most
important: how environmental pollutants affect their genes
and their child’s genes (84 %), types of biological specimens
needed for genetic research studies (75 %) and who will have
access to their samples (75 %). Of the 20 % who responded
that they were “unsure” about participating in a genetic research
study, the leading reason was “I don’t have enough
information about genetic research to make a decision”
(56 %). We also asked respondents to choose their preferred
method for receiving genetic information, and the principal
response was to read a brochure (40 %). Findings from this
study will improve community education materials and
dissemination methods that are tailored for underserved populations
engaged in genetic research.