Genetic literacy and awareness of personalized medicine among undergraduates in Hong Kong

Abstract

Background and methods: Personalized medicine describes the use of an individual’s genetic profile to diagnose diseases as well as guide treatments. In a common core undergraduate course with 129 teaching hours at the University of Hong Kong (The World Changed by DNA, https://commoncore.hku.hk/ccst9064/), students were taught on topics surrounding genomics through interaction with patients and guided discussions. During the course students took part in pre- and post-teaching online questionnaires on perceptions of personalized medicine and pharmacogenomics, adopted from Mahmutovic et al. (Human genomics 2018), covering ethical, legal and social aspects of genetic testing. Results: A total of 118 students were enrolled, and the response rate was 70% (n=83). The teaching evaluation reported an above average course effectiveness rating of 78% (mean for the Area of Inquiry: Scientific & Technological Literacy = 70.7%). Pre-teaching, 37% of individuals indicated that they have not heard of personal genome testing before, and 52% reported that they would feel “helpless” or “pessimistic” in case of an unfavorable genetic test result, which reduced to 47% after teaching on the basic concepts of genetics. Overall, 78% would consider having a genetic test done for potential illness that may manifest at a later age, and 78% of the students were aware of the related ethical issues, such as patient privacy and racial issues. Conclusions: Genetic literacy of the general public is an important consideration especially if the Hong Kong Genome project is to be implemented. Over one-third (37%) of undergraduates have not heard of genetic tests prior to the course. Despite that fact that the an course effectiveness rating was above average, and 80% students indicated that our course has enhanced their capability to understand scientific aspects of contemporary issues related to personalized medicine, negative perceptions were only reduced by 5%. Almost half (47%) of the students still indicated that they would feel helpless when faced with an unfavorable result which reflects the need for further input in a real scenario of genetic testing. The risks of a low public awareness in a rapidly growing industry have been raised by experts, and there are increasing concerns for the safety and privacy of such tests. These findings only represent university students, and the impact on the general population is likely to be more exaggerated. Our results emphasize the need to build an educational framework early in nursing or medical schools extending to the wider community. There is also a strong need to couple this effort with professionals such as genetic counsellors and geneticists such that misconceptions and negative impacts cause by this gap in knowledge are minimized.