Dataset Information

Public awareness of and attitudes towards research biobanks in Latvia.

ABSTRACT: BACKGROUND: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 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. METHODS:We 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. RESULTS:According 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. CONCLUSIONS:Public 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.

SUBMITTER: Mezinska S

PROVIDER: S-EPMC7393882 | biostudies-literature | 2020 Jul

REPOSITORIES: biostudies-literature

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Public awareness of and attitudes towards research biobanks in Latvia.

Mezinska S S Kaleja J J Mileiko I I Santare D D Rovite V V Tzivian L L

BMC medical ethics 20200731 1

<h4>Background</h4>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 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 ...[more]

PMID: 32736554

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Project description:Background: Biobanks have become an increasingly important means of biomedical research and innovation. However, they entail a variety of ethical, social and legal challenges, which need to be publicly discussed and managed collectively. A certain level of public awareness of biobank research is an important prerequisite for the public to form an opinion on the issue at hand and to be willing to participate in public engagement activities. For many countries, including Germany, recent information on the public's awareness of and attitude toward biobanks is scarce. Methods: Therefore, by means of a postal survey in a German urban region, this study updates data from the 2010 Eurobarometer by analyzing (1) the public's awareness of biobanks, (2) their general attitude toward biobanks, and (3) their hypothetical willingness to donate their own biological samples and personal or medical data. Results: Overall, 204 (20.4%) of 998 delivered questionnaires were returned. The majority of survey respondents stated a positive attitude toward medical research (95.5%) and - to a somewhat lower degree - toward genetic research (61.3%). Attitudes toward biobanks were mixed but positive for the majority of respondents: in a question about their spontaneous assessment of biobanks as a means for medical research, 77% showed positive attitudes toward biobanks (36.6% "definitely" and 40.5% "somewhat positive"). This finding is also reflected in a high proportion of individuals willing to participate in biobank research: 70.4% of respondents would be willing to donate biomaterial to a biobank during a hypothetical stay in hospital. In spite of the high overall support respondents show for biobanks (e.g., positive general attitude and willingness to participate), only about one third (30.8%) had previously heard of biobanks. Discussion and Conclusion: The comparison of survey results with prior data from the 2010 Eurobarometer indicates that public awareness of biobanks remains low. A higher level of biobank awareness can be assumed to be one prerequisite for public engagement in future decisions on biobank governance. We therefore argue that to increase public awareness of biobanks and to enable public involvement in biobank governance, publicly available and understandable information must be provided and disseminated.

Project description:BackgroundA growing number of studies show the potential of loyalty card data for use in health research. However, research into public perceptions of using this data is limited. This study aimed to investigate public attitudes towards donating loyalty card data for academic health research, and the safeguards the public would want to see implemented. The way in which participant attitudes varied according to whether loyalty card data would be used for either cancer or COVID-19 research was also examined.MethodsParticipants (N = 40) were recruited via Prolific Academic to take part in semi-structured telephone interviews, with questions focused on data sharing related to either COVID-19 or ovarian/bowel cancer as the proposed health condition to be researched. Content analysis was used to identify sub-themes corresponding to the two a priori themes, attitudes and safeguards.ResultsParticipant attitudes were found to fall into two categories, either rational or emotional. Under rational, most participants were in favour of sharing loyalty card data. Support of health research was seen as an important reason to donate such data, with loyalty card logs being considered as already within the public domain. With increased understanding of research purpose, participants expressed higher willingness to donate data. Within the emotional category, participants shared fears about revealing location information and of third parties obtaining their data. With regards to safeguards, participants described the importance of anonymisation and the level of data detail; the control, convenience and choice they desired in sharing data; and the need for transparency and data security. The change in hypothetical purpose of the data sharing, from Covid-19 to cancer research, had no impact on participants' decision to donate, although did affect their understanding of how loyalty card data could be used.ConclusionsBased on interviews with the public, this study contributes recommendations for those researchers and the wider policy community seeking to obtain loyalty card data for health research. Whilst participants were largely in favour of donating loyalty card data for academic health research, information, choice and appropriate safeguards are all exposed as prerequisites upon which decisions are made.

Project description:Genetic modification of farm animals has not been well accepted by the public. Some modifications have the potential to improve animal welfare. One such example is the use of gene editing (i.e. CRISPR (clustered regularly interspaced short palindromic repeats)) to spread the naturally occurring POLLED gene, as these genetically hornless animals would not need to experience the painful procedures used to remove the horns or horn buds. The aim of the current study was to assess public attitudes regarding the use of GM to produce polled cattle. United States (US) citizens (n = 598), recruited via Amazon Mechanical Turk, were asked "Do you think genetically modifying cows to be hornless would be…", and responded using a 7-point Likert scale (1 = a very bad thing, 4 = neither good nor bad, 7 = a very good thing). Participants were then asked to indicate if they would be willing to consume products from these modified animals. We excluded 164 of the original 598 participants for not completing the survey, failing any of three attention check questions, or providing no or unintelligible qualitative responses. Respondents were then asked to provide a written statement explaining their answers; these reasons were subjected to qualitative analysis. Comparison of Likert scale ratings between two groups was done using the Wilcoxon rank-sum test, and comparisons between more than two groups were done using the Kruskal-Wallis rank test. More people responded that the modification would be good (Likert ≥ 5; 65.7%) than bad (Likert ≤ 3; 23.1%), and that they would be willing to consume products from these animals (Likert ≥ 5; 66.0%) versus not consume these products (Likert ≤ 3; 22.6%). Qualitative analysis of the text responses showed that participant reasoning was based on several themes including animal welfare, uncertainty about the technology, and worker well-being. In conclusion, many participants reported positive attitudes towards GM polled cattle; we suggest that people may be more likely to support GM technologies when these are perceived to benefit the animal.

Dataset Information

Public awareness of and attitudes towards research biobanks in Latvia.

Publications

Public awareness of and attitudes towards research biobanks in Latvia.

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