Genetic literacy and experiential knowledge on sickle cell disease among Canadian- and foreign-born male and female Anglophone and Francophone youth in Canada.

Abstract

Objectives: Growing global human mobility raises concerns about impacts on global health, particularly on the prevalence of sickle cell disease. This research unveiled the level of genetic literacy on sickle cell disease of male and female Anglophone and Francophone youth living in Canada. The research responded to questions about whether the type of information about the disease has been more prevalent among the youth's family, friends, acquaintances and school circles, and the influence of such information on shaping the current youth level of genetic literacy on the disease.

Methods: An online survey hosted by a Canadian university (2019/2020) platform was conducted with youth (n=87, aged 16-29) recruited in their natural, social environments in seven Canadian provinces. Data analysis used descriptive statistics and manual qualitative content analysis.

Results: Youth, mostly Canadian-born, 71.42 % Francophones and 67.12 % Anglophones, descend from parents who had been born in countries at risk for the disease. Results indicated that experiential knowledge is due to the familiarity with the disease occurrence among family members and acquaintances. Participants did not comment about how academic-gained knowledge could influence their own decision on becoming a parent.

Conclusions: Independently of their country of birth, Canadian youth seem to have unmet information needs: a complex challenge requiring creativity and simplicity to deliver information through attractive media.