Conceptualizations of “Genetic Disease’ Among Undergraduates: How Common are Beliefs in Genetic Exceptionalism, Really?
Capstone Project Committee: Sonja Eubanks, MS, CGC, Marian Gardner, PhD, Terrance McConnell, PhD, Scott Richter, PhD (Statistical Consultant)
Background: Despite a lack of consensus regarding the definition of “genetic disease,” there exists a tendency to label genetic conditions as special, requiring unique primary care and public health attention. Often, this notion rests on the theory of genetic exceptionalism, the controversial idea that in a meaningful way, genetic information is distinct from other medical information. This project aimed to investigate laypersons’ beliefs about genetic disease and genetic exceptionalism, and to assess the impact of a genetics literacy intervention. Methods: A pre-experimental, one-group matched design was used. Identical pre- and post-surveys containing three sections (Demographics, Genetics Literacy, and Applied Scenarios) were administered to students of GN 301 (Genetics in Human Affairs) at North Carolina State University. An online survey to elicit qualitative data was administered following completion of the course. Results: In total, 103 pre- and post-surveys were matched, and 36 online surveys were completed, for response rates of 41% and 14%, respectively. Genetics literacy was high on the pre-survey but increased significantly on the post-survey. Inheritance and causation were identified as the most important factors in determining disease classification. Participants saw a distinction between genetic and infectious diseases with respect to public health approaches but felt that all medical information should be highly protected. A tension identified was the fact that genetic information can be both probabilistic and uniquely definitive. Asked directly about genetic exceptionalism, close to 50% of participants agreed with this theory on both surveys. Conclusions: The impact of the genetics literacy intervention could not be assessed due to the high baseline level of genetics literacy. Distinctions made between genetic and non-genetic disease and medical information did not always have practical implications. Future studies would benefit from studying populations with lower genetics literacy and refining the survey to assess more effectively participants’ complex beliefs.
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