Opinions matter: public opinions on data-sharing and how they can shape pathogen genomic surveillance in Canada
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Faculty of Health Sciences, Simon Fraser University, Burnaby, Canada
Nuffield Department of Population Health, University of Oxford, Oxford, United Kingdom
Department of Molecular Biology and Biochemistry, Simon Fraser University, Burnaby, Canada
Department of Human Genetics, McGill University Faculty of Medicine and Health Sciences, Montreal, Canada
Publication date: 2023-04-26
Popul. Med. 2023;5(Supplement):A394
Background and Objective:
Intersections of public health and pathogen genomics have played a vital role in surveilling the Coronavirus Disease-2019 (COVID-19) pandemic and building resilient health systems. Individual-level COVID-19 data collected by Canadian provincial/territorial health authorities is not yet readily available to the public, including researchers. Lack of data-sharing delays or prohibits national data interpretation, harmonization, integration, and surveillance. To inform pathogen genomic-based surveillance practice and research innovation, (e.g. virusseq-dataportal.ca; covarrnet.ca), we explored public opinions on sharing de-identified COVID-19 data publicly in Canada.

In March 2022, a national survey was open to those 18 years or older and currently living in Canada. Opinions on publicly sharing 16 de-identified COVID-19 datatypes (i.e. data removed of identifiable information such as name, birthday, etc.) were assessed.

Of 4,981 participants, 79.7% were supportive of publicly sharing de-identified COVID-19 data, whilst 20.3% were hesitant/averse/unsure. Participants most supported sharing symptoms (83.0% in support), region (82.6%), and COVID-19 vaccination status (81.7%). Participants were most averse to sharing their employment sector (27.4% averse), postal area (26.7%), and international travel history (19.7%). Generally supportive participants were characterized as being age 50 years or older, with higher education, and at-least singly vaccinated against COVID-19. Vaccination status was the most influential predictor of data-sharing opinion. Participants who were ever vaccinated were 4.20 times more likely (95% CI, 3.21-5.48, P<0.000) to be generally supportive of data-sharing than their unvaccinated counterparts.

Our findings suggest the Canadian public is generally favourable to de-identified data-sharing. With rising concerns around privacy and anonymity, such supportive opinions have the power to influence the timeliness and scope of data shared by public health authorities. Given the public’s support, it is essential to improve national data-sharing and harmonization efforts in Canada for both current and future outbreak preparedness and response.