Language and literacy practices in personal genetic testing in Hong Kong

Abstract

This study investigates the language and literacy practices (Barton & Hamilton, 2000) of participants (i.e., clients & genetic test providers) involved in the emerging practice of personal genetic testing in Hong Kong amidst transitions brought about by technological advances in genetics and remote communication technologies. Genetic tests with established clinical validity and utility have traditionally been utilized in the context of healthcare services as part of a broader diagnostic procedure or screening programme (Goldsmith, Jackson, O''Connor, & Skirton, 2012; Liu & Pearson, 2008) to facilitate the prevention, diagnosis and treatment of genetic disorders and/or conditions. The rapid advancements of genetic science and decreasing cost of genetic sequencing technologies have been broadening the application of genetic testing beyond traditional clinical settings to the recent commercial offerings of personal genetic tests through direct-to-consumer Internet marketing/sales. What is new with these genetic tests is that they claim to provide individuals with customised genetic risk information for developing multiple common, complex diseases (e.g., cancers, diabetes, cardiovascular diseases, etc.), shifting the rationale for undertaking genetic tests from an attempt to confirm a tentative diagnosis to a desire to predict one’s possible future health (Liu & Pearson, 2008). To investigate the role of language in representing transitions and mediating participants’ transitions experiences, the language and literacy practices among participants of personal genetic testing are examined. In particular, the dissemination of genetic information from genetic test providers to their actual and potential clients as manifested in various digital and print publicizing texts (e.g., websites, information leaflets, social media posts) are examined to study how knowledge emanating from developments in health genetics are represented to the general public; clients’ accounts of experiences about personal genetic testing (e.g., in interviews and online posts) are examined to investigate the discursive processes that individuals employ to manage genetic literacy and its broader sociocultural implications. This study contributes to the growing scholarly and social interest in genetic literacy, providing a non-English dominant and a linguistic perspective on clients’ informed decision-making and public health initiatives about personal genetic testing. References Barton, D., & Hamilton, M. (2000). Literacy practices. In D. Barton, M. Hamilton, & R. Ivanič (Eds.), Situated Literacies: Reading and Writing in Context (pp. 7-14). London and New York: Taylor & Francis e-Library. Goldsmith, L., Jackson, L., O''Connor, A., & Skirton, H. (2012). Direct-to-consumer genomic testing: systematic review of the literature on user perspectives. Eur J Hum Genet, 20(8), 811-816. doi:10.1038/ejhg.2012.18 Liu, Y., & Pearson, Y. E. (2008). Direct-to-consumer marketing of predictive medical genetic tests: Assessment of current practices and policy recommendations. Journal of Public Policy & Marketing, 27(2), 131-148. doi:10.1509/jppm.27.2.131