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 twostage 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 socioeconomic 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.
A crucial debate is under way concerning the public's participation in biotechnology decision-making processes. This study, concerning the policy process around xenotransplantation (XTP) in Latvia and Sweden in the period 1970-2004, focuses on how scientific experts and politicians view the public and the public's participation in the process of developing policy regarding XTP. Drawing on interviews with actors involved in XTP in each country, we analyse and explain the inclusion and exclusion of publics in policy decision-making processes. In particular, we highlight the significance of the role of scientists and politicians in generating discourses which exclude the public from participation in policy decision-making. M
Provided in this paper is an examination of mundane mobilities that are central to the production of childcare rhythms. We argue that mundane mobilities are produced in the intersections between family and care providers' locations; in time travelling back and forth to childcare provision and through everyday activities with children. These mobilities are further shaped by a reduction in the formal provision of childcare in post-socialist Latvia.Hence, the shape of childcare has changed in post-socialist Latvia and through the 'morally negotiated' responsibilities in informal childcare, there is the emergence of certain rhythms: care in neighbourhoods, travel routines, and everyday walking with children. This paper draws on 32 face-to-face interviews with mothers and care providers which were carried-out in the period 2015-16. Our theoretical contribution builds on geographical and sociological interpretations of mobilities literature with a focus on care and rhythm-analysis, and everyday life. Our applied contribution supports an understanding of how precarity is experienced, and responsibilities negotiated, in families in post-social societies.
Relational aspects, such as involvement of donor’s relatives or friends in the decision-making on participation in a research biobank, providing relatives’ health data to researchers, or sharing research findings with relatives should be considered when reflecting on ethical aspects of research biobanks. The aim of this paper is to explore what the role of donor’s relatives and friends is in the process of becoming and being a biobank donor and which ethical issues arise in this context. We performed qualitative analysis of 40 qualitative semi-structured interviews with biobank donors and researchers. The results show that relatedness to relatives or other types of close relationships played a significant role in the donors’ motivation to be involved in a biobank, risk-benefit assessment, and decisions on sharing information on research and its results. Interviewees mentioned ethical issues in the context of sharing relatives’ health-related data for research purposes and returning research findings that may affect their relatives. We conclude that the question of what information on family members may be shared with a biobank by research participants without informed consent of those relatives, and when family members become research subjects, lacks a clear answer and detailed guidelines, especially in the context of the introduction of the European Union’s (EU) General Data Protection Regulation. Researchers in Latvia and EU face ethical questions and dilemmas about returning research results and incidental findings to donors’ relatives, and donors need more information on sharing research results with relatives in the informed consent process.
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