Biobanking has become a global activity of growing relevance to research. The African continent is part of this global effort to collect, store and re-use samples and data. International research and capacity development efforts such as the Human Health and Heredity Africa project seek to empower African researchers and research participants alike. Given that African genetic diversity is a unique global resource, retaining samples and data on the continent is critical to building trust in communities who have been historically exploited (...) in the name of research. Diverse and multiple stakeholders are involved in biobanking. Engaging authentically with these various stakeholder groups is a pre-requisite to building trust. Likewise, establishing legitimacy of biobanks also contributes to development of trust in communities. This paper reflects on the concepts of trust, legitimacy and stakeholder engagement. Empirical research conducted on researchers in South Africa as well as on research participants and Community Advisory Board members is briefly presented. The development of educational pamphlets on genetics, genomics and biobanking and an educational video on biobanking in conjunction with CAB members is described. These tools were used to engage research participants and CAB members in discussions around biobanking. Establishing biobanks in African settings is challenging. However, efforts must be made to engage with relevant stakeholders on the basis of mutual respect and trust. (shrink)

Background A biobank is a structure which collects and manages biological samples and their associated data. The collected samples will then be made available for various uses. The sharing of those samples raised ethical questions which have been answered through specific rules. Thus, a Biobank functioning under tight ethical rules would be immensely valuable from a scientific and an economic view point. In 2009, Côte d’Ivoire established a biobank, which has been chosen to house the regional biobank of Economic Community (...) of West African States countries in 2018. To ensure optimal and efficient use of this biobank, the scientific community must be aware of its existence and its role. It was therefore necessary to evaluate the knowledge of laboratories staff on the role and activities of a biobank. Methods This descriptive study was done by questioning staff from laboratories working on human’s health, animals or plants. The laboratories were located in southern Côte d’Ivoire. Results A total of 205 people completed the questionnaire. Of these 205 people, 34.63% were biologists, 7.32% engineers, 48.78% technicians and 9.27% PhD students. The average length of work experience was 10.11 ± 7.83 years. In this study, 43.41% of the participants had never heard of biobanking. Only 48.78% of participants had a good understanding of the role of a biobank. Technicians and PhD students were less educated on the notion of biobank. Conclusion The level of knowledge of laboratory staff about biobanking needs to be improved. Training on the role, activities and interests of the biobank is important. (shrink)

Biobanks and biospecimen collections are becoming a primary means of delivering personalized diagnostics and tailoring individualized therapeutics. This shift towards precision medicine requires interactions among a variety of stakeholders, including the public, patients, healthcare providers, government, and donors. Very few studies have investigated the role of healthcare students in biobanking and biospecimen donations. The main aims of this study were to evaluate the knowledge of senior healthcare students about biobanks and to assess the students’ willingness to donate biospecimens and the (...) factors influencing their attitudes. A cross-sectional study was conducted among senior healthcare students at King Abdulaziz University, Saudi Arabia. The data were obtained using a self-administered questionnaire in English. In addition to the respondents’ biographical data section, the questionnaire assessed the respondents’ general knowledge about biobanking, the factors influencing their willingness to donate biospecimens to biobanks and their general attitudes towards biomedical research. A total of 597 senior healthcare students were included in the study. The general knowledge score was 3.2 out of 7. Only approximately 44% and 27% of students were aware of the terms “Human Genome Project” and “biobank,” respectively. The majority of the students were willing to donate biospecimens to biobanks. Multiple factors were significantly associated with their willingness to donate, including their perceived general health, past experience with both tissue testing and tissue donation, biobanking knowledge score and biomedical research attitude score. The main reasons for students’ willingness to donate were advancement of medical research and societal benefits, whereas misuse of biospecimens and confidentiality breaches were the main reasons for a reluctance to donate. Despite their strong willingness to donate biospecimens, students exhibited a notable lack of knowledge about biobanking and the HGP. To expedite the transition towards PM, it is highly recommended to enhance healthcare curricula by including more educational and awareness programmes to familiarize students with OMICs technologies in addition to the scope of research and clinical applications. (shrink)

Background Protecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of privacy as well as the situations in the research setting that require privacy protections. The aim of this study was to explore the views of research professionals from Arab countries regarding concepts and scope of privacy that occur in clinical research. Methods We adopted an exploratory qualitative approach by the use (...) of focus group discussions. We recruited individuals involved in research from Egypt and Morocco. We analyzed focus group data via a constant comparison approach, which consisted of close reading of the transcribed interviews followed by coding and then determining themes and subthemes. Results Between August 2016 and July 2018, we conducted nine focus group discussions. Respondents discussed several privacy issues that occurred before the research began ; during research, and after the research. Respondents revealed their perspectives of patients towards privacy in the clinical and research settings and mentioned that patients are more likely to permit access to their privacy in the clinical setting compared with research setting due to the existence of benefits and trust in clinical care. Respondents also recommended training regarding data protections for individuals involved in research. Conclusions Our study shows that research professionals discussed a range of privacy issues that are present during the different stages of research. We recommend 1) development of standards regarding privacy protections during recruitment efforts; 2) additional training for individuals involved in research regarding best practices with data security in secondary research; 3) a quantitative study involving investigators and REC members to determine their knowledge, attitudes and practices regarding privacy issues that occur in research; and 4) a quantitative study involving patients to elicit their views regarding their privacy concerns in research. (shrink)

Current policy approaches to social and ethical issues surrounding biobanks manifest lack of public information given by researchers and government, despite the evidence that Italian citizens are well informed about technical and other public perspectives of biotechnologies. For this reason, the focus of our survey was to interview our University’s students on these aspects. The sample consisted of Padua University students, who were administered a questionnaire comprising eight questions covering their knowledge about biobanks, their perception of the related benefits and (...) risks, their willingness to donate samples to a biobank for research purposes, their attitude to having their own DNA profile included in a forensic DNA database, and the reasons behind their answers. The vast majority of the students invited to take part in the survey completed the questionnaire, and the number of participants sufficed to be considered representative of the target population. Despite the respondents’ unfamiliarity with the topics explored, suggested by the huge group of respondents answering “I don’t know” to the questions regarding Itaian regulation and reality, their answers demonstrate a general agreement to participate in a biobanking scheme for research purposes, as expressed by the 91% of respondents who were reportedly willing to donate their samples. As for the idea of a forensic DNA database, 35% of respondents said they would agree to having their profile included in such a database, even if they were not fully aware of the benefits and risks of such action. This study shows that Italian people with a higher education take a generally positive attitude to the idea of donating biological samples. It contributes to empirical evidence of what Italy’s citizens understand about biobanking, and of their willingness to donate samples for research purposes, and also to have their genetic profiles included in a national forensic DNA database. Our findings may have clear implications for the policy discussion on biobanks in Italy, in particular it is important to take into account the Italian population’s poor consciousness of forensic DNA database, in order to ensure a better interaction between policy makers and citizens and to make them more aware of the need to balance the individual’s rights and the security of society. (shrink)

The establishment of MyCohort in 2005 showed that there is a growing interest on the part of the Malaysian government in the creation of biobanks in the country. This project can be considered as the biggest and most comprehensive cohort study in Malaysia, where hundreds of thousands of human samples are stored for epidemiological and biomedical research. However, little is known about the current issues or the situation related to biobank research in Malaysia. There are pressing issues that need answers (...) such as the governance of the national biobank as well as other privately owned biobanks in the nation, the public perspectives and perceptions regarding biobanks, and other matters such as the ethical, legal, and social issues related to biobank research. This article will highlight the status and issues related to biobank research in Malaysia and provide suggestions on future research practices that we feel need to be seriously considered. These suggestions are designed to advance and enlighten researchers’ knowledge, as well as provide the public with information on issues associated to biobanking. Good governance increases public knowledge and trust, and religious acceptance of biobank research and accountability can lead to increased participation in biobank research. The direct implications of the discussion about the ethical, legal, and social issues of biobanks are pertinent for the foundation of knowledge relating to biobanks, as well as the forward gestures for future medicine for mankind. (shrink)