Abstract
BackgroundPublic awareness and engagement are among the main prerequisites for protecting the rights of research participants and for successful and sustainable functioning of research biobanks. The aim of our study was to analyse public awareness and attitudes towards research biobanks in Latvia, and to compare these data with the results of the 2010 Eurobarometer study. We also analysed the influence of awareness and attitudes towards biobanks on willingness to participate in biobank studies and on preferred type of informed consent.MethodsWe developed a 12-question survey repeating seven questions about biobanks from the 2010 Eurobarometer questionnaire and adding five others. After describing the study variables, we performed a two-stage analysis of the results. In the first stage we analysed differences between the answers from 2010 and 2019 and conducted univariate analyses of relationships among particular variables, and between those variables and the socio-demographic characteristics of participants. In the second stage we investigated multivariable associations of willingness to participate and type of consent with awareness, trust and the socio-economic characteristics of participants.ResultsAccording to our study, the general public in Latvia is still not well informed about research biobanks. Fewer respondents have heard about research biobanks than in 2010. At the same time, the number of respondents who are willing to donate biological samples and personal data to a biobank has increased, e.g. the number of respondents who would definitely or probably be willing to provide information about themselves has increased from 25.8.% to 40.7 since 2010. Overall, concerns about the donation of different types of biological samples and data to a biobank have slightly decreased.ConclusionsPublic awareness about biobanks is important for their sustainability. It needs to be increased not only by traditional methods of informing the public, but also by more innovative and participatory approaches, e.g. by citizen science projects. There is a need to strengthen the public visibility and trustworthiness of ethics committees in Latvia in the field of biobanking.
Highlights
Public awareness and engagement are among the main prerequisites for protecting the rights of research participants and for successful and sustainable functioning of research biobanks
The findings of this study showed that “the publics of Europe are heterogeneous in their response to biobanks” [8]; people in Eastern and Southern Europe were less willing to participate in research biobanks and preferred narrow consent [8]
Most earned less than 210 Euro per month per person in the family, had no children, worked in the private sector and lived in cities outside the capital (Table 1)
Summary
Public awareness and engagement are among the main prerequisites for protecting the rights of research participants and for successful and sustainable functioning of research biobanks. Latvia is a European Union (EU) member state with several actively functioning research biobanks. The oldest and one of the most active is the national Genome Database of Latvian Population established in 2003 and currently storing biological samples from more than 35,000 donors (Latvia had 1,919,968 residents in 2019). The integration process started when Latvia was approved as a member of the Biobanking and Biomolecular Resources Research Infrastructure (BBMRI-ERIC) in 2016. An appropriate solution would be to strengthen the legal framework in Latvia by adopting a new law on biobanks, and a national working group established by the Latvian National Node coordinating BBMRI-ERIC activities has started the process of drafting a new Biobank law. The research ethics committee system still needs improvements regarding transparency and procedural clarity of ethical review, conflicts of interest management, composition of committees and motivation of their members [3]
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