Genetics and Autism Literacy Survey (GALS)

National Human Genome Research Institute

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Abstract

Genomic research advancements in the last decade have significantly increased the ability to apply genomic information to many facets of health. As clinical and direct-to-consumer genetic testing is integrated into healthcare, the need for patients to make decisions about their own genetic information increases. Genetic literacy, or ones knowledge of genetic principles and their applications, is one measure that assesses a persons ability to apply genetics to their own health. However, genetic literacy is generally low, even among those who have completed secondary education (Chapman et al., 2019). Beyond genetic knowledge is the ability to make decisions about your health using increasingly available genetic information. A survey implemented in 2016 by members of the SBRB at NHGRI found moderate genetic literacy results with 50% of the sample answering all questions correctly. While this higher genetic literacy rate increased participants confidence in their decision-making ability, so did exposure to genetic testing in the media (Abrams et al., 2016). As discussion and availability of direct-to-consumer genetic testing increases, it is imperative to disseminate accurate genetic information to ensure that the public is equipped to make personal health decisions. While previous research has explored genetic literacy rates in the US (Kampourakis, 2016; Krakow et al., 2018), there is a need to update the rates and apply them to a currently unexplained gap in genetic testing for autism spectrum disorder (ASD). Though genetic testing is recommended for families following an ASD diagnosis, as little as a quarter of individuals undergo testing (Cuccaro et al., 2014; Zhao et al., 2019). This discrepancy could be explained by many factors, including low genetic literacy rates in these populations. Prior research has indicated that increased genetic knowledge improves attitudes towards and participation in genetic testing (Krakow et al., 2018). Studies have also demonstrated that racial identifications and cultural values such as religious beliefs affect willingness to participate in genetic testing, for any cause (Luksic et al, 2020). Because genetic testing can prevent unnecessary and potentially painful procedures in those diagnosed with ASD, an increase in genetic literacy is needed (Zhao et al., 2019). Though prior surveys and qualitative studies have investigated families use and perception of genetic testing for ASD, no current surveys have assessed the general populations attitudes towards this issue (Johannessen et al., 2016; Li et al., 2016; Reiff et al., 2017). The present study aims to update current genetic literacy rates and examine its application to genetic testing for ASD. This study will administer the same instrument used in the previous work by the NHGRI's Social and Behavioral Research Branch (Abrams et al, 2015) but will add several scales to measure the relationship of genetic literacy to beliefs about race and control. The number of general population participants will be doubled since the 2015 work, but the proportion of racial/ethnic groups will be kept the same. These additions will enable us to further understand the role of genetic literacy in uptake of genetic testing in the general population, as well as examine the social impact of genetic literacy and its relationship to genetic determinism.