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Licensed Unlicensed Requires Authentication Published by De Gruyter October 31, 2023

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

  • Margareth Santos Zanchetta ORCID logo EMAIL logo , Anita Sarpong , Juliet Osei-Boateng , Alessar Nazzal , Maria Teixeira , Agnès Lainé and Marlene Rémy-Thélusma



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.


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.


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.


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.

Corresponding author: Margareth Santos Zanchetta, PhD, RN, Associate Professor, Daphne Cockwell School of Nursing, Toronto Metropolitan University, Toronto, Canada, E-mail:

Funding source: 2017 Work & Learn Research Assistant Program, Toronto Metropolitan University (formerly Ryerson University) and Faculty of Community Services – 2021 Publication Grant.

Award Identifier / Grant number: n/a


The authors thanks Bukola Salami, Tofi Ajibolade, Cherrie James, Mark Kocsis, Milena Oliva, Anel Hared, Andreanne Boisjoli, Shant Ketenjian, as well as many other anonymous individuals for the support for the community recruitment of youth in churches, mosques, and other social circles. Special “Obrigada” to Stéphanie Pedrotti who helped with the literature review. To Michael LaPointe for editing the manuscript.

  1. Research ethics: The research was conducted according to the guidelines of the Declaration of Helsinki and approved by the Ryerson (formerly) University Research Ethics Board (REB# 2018-113) and Comité d’éthique de la recherche of the Collège Boréal (CEP # 2018-09-01) both located in the city of Toronto, province of Ontario, Canada.

  2. Informed consent: Explicit online informed consent was obtained from all individuals involved in the research.

  3. Author contributions: Conceptualization: MSZ, AL, MT, MR-T. Investigation: MSZ, AS. Methodology: MSZ, AS, AL, MT. Formal Analysis: MSZ, AS, JO-B. Writing – Original Draft Preparation: MSZ, AS, JO-B, AN. Project Administration: MSZ. Supervision: MSZ. Writing Review: MSZ, AL, MT, MR-T. Funding Acquisition: MSZ, AS.

  4. Competing interests: Authors state no conflict of interest.

  5. Research funding: This work was supported by the 2017 Work & Learn Research Assistant Program, Toronto Metropolitan University (formerly Ryerson University) earned by the first and second authors and Faculty of Community Services – 2021 Publication Grant.

  6. Data availability: Not applicable.


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Received: 2022-11-11
Accepted: 2023-10-04
Published Online: 2023-10-31

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