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.
The aim of this article is to analyse the role of metaphors for the infertile body in the context of assisted reproduction, using conceptual metaphor theory as a framework, and to evaluate the moral significance of these metaphors. This sub-study is part of a larger study examining the biosafety practices of new biotechnologies in Latvia. In the sub-study, special attention was paid to metaphors used by assisted reproductive technology users, egg donors and experts. It can be concluded that not only does the infertility experience influence the choice of metaphors, but the use of certain metaphors can also change the infertility experience. In this process the practice of infertility treatment and the meaning of the body are socially and culturally shaped. The main groups of metaphors for the infertile body discovered through interview analysis are: order/disorder, the body as a resource, the body as a container, the body as a project, and anthropomorphization of gametes.keywords assisted reproductive technology, embodiment, infertility, metaphor, reproductive ethics the new bioethics,
This report aims to analyse how people who donate their biological samples and personal information to research biobanks perceive the returning of research results -informing them as individuals and society as a whole. It also serves to promote public discussion on ethical issues regarding research biobanking. The analysis of donors' perspectives is based on data gathered by conducting 20 semi-structured qualitative interviews. The conclusions confirm that donors' perspectives on returning of biobank research results are strongly related to their motivation to participate in these research projects. The motivation often is willingness to gain knowledge about their personal health condition. Consequently, in order to stimulate their motivation to donate samples, there is a need to develop a preferable returning of results, specifically individual results. Furthermore, since donors' perspectives differ, a more detailed informed consent should be organized.
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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