Banking on you? : the level of public awareness of biobanks in Malta

This paper explores the level of awareness of the Maltese general public in relation to the existence and use of biobanks as resources for biomedical and genomic research. Using a quantitative research design, a four question survey was administered face-to-face to a random stratified quota sample (n = 387) of the Maltese population. The survey assessed whether the general public understands what a biobank is, and what the people believe/ think a biobank might be. Results show that the overwhelming majority of the public is not aware of the term `biobank', and when asked to think about what a biobank could be, the majority of these failed to give an accurate answer, with a financial institution being the most frequent suggestion. This said, 26.5% of those who initially claimed that they did not know what a biobank is (or claimed they were not sure) went on to give a legitimate response when asked to speculate about what a biobank could be. Most of these respondents mentioned biobanks which store gametes and/or embryos and biobanks which store blood and organs for the purpose of donation. Whilst gender does not seem to be a significant factor in the outcome as an independant variable, educational achievement did have an influence on the accuracy of the responses. The key finding is that only 2.3% of the Maltese population promptly associated the term `biobank' with a facility for storing tissue for the purpose of biomedical research, while the vast majority believed it referred to a financial institution.peer-reviewe

Dwarna : a blockchain solution for dynamic consent in biobanking

Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna—a web portal for ‘dynamic consent’ that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners’ consent in a blockchain to create an immutable audit trail of research partners’ consent changes. Dwarna’s structure also presents a solution to the European Union’s General Data Protection Regulation’s right to erasure—a right that is seemingly incompatible with the blockchain model. Dwarna’s transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed.peer-reviewe

Mask-wearing during the Covid-19 pandemic in the Maltese context : attitudes, beliefs, perceptions and behaviour

The efficacy of any public health campaign is impacted in important ways by the level of public understanding and cooperation. The measures put in place to limit the spread of SARS-CoV-2 virus in Malta have had important influence on societal relations, with the use of face coverings arguably having the most impact. The aim of our study was to empirically explore the lived experience of wearing a mask - the perceptions, beliefs and attitudes related to the use of face- coverings during the COVID-19 pandemic in the Maltese Islands. A mixed methods research design was used to collect data via an online survey with a convenience, non-probability sample made up of 990 respondents. Quantitative data were collected via closed ended questions supplemented by qualitative data in open text boxes. Our data, collected before the wearing of face coverings was mandatory in all public places, showed how the vast majority of participants chose to wear them, with the predominant choice being facemasks. The vast majority of respondents claimed that the wearing of face masks while interacting in public spaces (both indoor and outdoor) leads to a sense of security, with increased sense of confidence in public safety measures. Data on beliefs and knowledge are significantly associated with level of education and include the mistaken belief that a visor offers as much protection as a facemask, and that wearing a facemask reduces the amount of oxygen available to breathe. Qualitative data highlighted challenges linked to communication, heat, discomfort, anxiety about lack of oxygen, and finding it harder to breathe, besides issues related to condensation on spectacles. The negative impact at work was also flagged, with increased level of irritability, reduced levels of concentration and reduced quality of service described in the data. Though compliance to public health directives was clearly dominant within our sample, the particular challenges highlighted within the study identify areas of potential breakdown of safe practices where focused science communication on a national level would be beneficial.peer-reviewe