Portuguese and the biobanks: Profiles and attitudes of the Portuguese population towards biobanks for health research

The success of human population biobanks are dependent on the publics' willingness to participate. This research aimed to determine those factors important in determining the public's intention to donate a biological sample to a publicly funded biobank, and allow that sample to be linked with medical records. A national sample of 1000 Australians was surveyed via telephonic interviews. Questions included the reported likelihood that respondents would participate in biobank research, ratings of trust in biobanks, beliefs that biobank research will lead to improved health care and general ratings of comfort with blood taking and DNA analysis. The sample reported a high level of trust in university biobanks, a strong belief that biobank research will lead to improved health care and a strong willingness to participate in biobank research. Using structural equation modelling, trust in the biobank was found to be the most important determinant of intention to participate in biobank research, followed by general comfort with blood taking and DNA analysis, belief in health-care benefits and higher education. Gender, age, parental status and experience of genetic conditions were not significantly associated with intention to participate. Australians are generally willing to participate in biobank research, and this is strongly determined by trust. While benefit beliefs and comfort with research are also relevant, higher trust was associated with intention regardless of these factors, suggesting reasons other than concern for improved health care are important in determining the publics' willingness to participate in biobank research.

Low levels of public trust in biobanks are perceived to be a deterrent to participation and a threat to their sustainability. Acting in a "trustworthy" manner is seen to be one approach to ensuring public trust in biobanks. Striving to improve public trust in biobanks and prioritizing the need for institutional trustworthiness are both vital endeavors. However, there has been little discussion in the context of biobanking about the meaning of these two concepts, and the relationship between them. In this article, we argue that it is important to examine this, to ensure clarity around their meaning, as well as their relationship with each other as they apply to biobanking. We conclude by making a series of recommendations for biobanks.

BackgroundBiobanks provide an important foundation for genomic and personalised medicine. In order to enhance their scientific power and scope, they are increasingly becoming part of national or international networks. Public trust is essential in fostering public engagement, encouraging donation to, and facilitating public funding for biobanks. Globalisation and networking of biobanking may challenge this trust.MethodsWe report the results of an Australian study examining public attitudes to the networking and globalisation of biobanks. The study used quantitative and qualitative methods in conjunction with bioethical analysis in order to determine factors that may contribute to, and threaten, trust.ResultsOur results indicate a generally high level of trust in biobanks and in medical research more broadly. Key factors that can reduce perceived trustworthiness of biobanks are commercialisation and involvement in global networking.ConclusionsWe conclude that robust ethical oversight and governance standards can both promote trust in global biobanking and ensure that this trust is warranted.

Background: Biobanking practice continues to proliferate in South Africa, yet little is known about how stakeholders engage with social, cultural, and religious considerations in this area of research. This study was undertaken to establish the perspectives of South African stakeholders (researchers, biobankers, clinicians, and research committee members) on sociocultural considerations in biobanking research. Methods: This in-depth exploratory study used semistructured face-to-face or Skype interviews with 25 purposively selected stakeholders involved in the biobanking-related practice. The study sample comprised biobankers, clinicians, researchers, postgraduate students in biobanking research, and research ethics committee members in South Africa. The interview focused on social and cultural challenges facing the biobanking practice in the country. Further probes included stakeholder perspectives on ownership and custodianship of stored biosamples. Thematic analysis was used to analyze the collected data. Results and Discussion: Several themes arose from the data analysis. These included respondents' perceptions of poor understanding of biobanking among research participants and communities; inconsistency in defining ownership and custodianship of biosamples; variability in respondents' understanding of cultural, religious, and social implications of biobanking; the notion of distrust; and building trust in biobanking. There were also inconsistencies in respondents' recognition of social, cultural, and/or religious influences on participant decision-making in biobanking research. Respondents highlighted that a general climate of distrust existed in the biobanking practice in South Africa. Conclusion: There is a need for greater stakeholder awareness of sociocultural considerations in biobanking practice in South Africa. One possible way to achieve this could be through the availability of training programs aimed at improving stakeholder understanding of the sociocultural context for biobanking practice in addition to greater efforts at community engagement with respect to all biobanking activities and research.

Biological samples—such as tissues, blood and cells—are an increasingly important tool for research into human diseases and their genetic and physiological causes. To ease their storage and access, many of these samples are now stored in biobanks. The number of human biological samples in such collections amounted to several hundred million in 1999 in the USA alone—about one sample per US citizen (Eiseman, 2000; Azarow et al , 2003)—and is increasing rapidly. Three‐quarters of the clinical trials that drug companies submit to the US Food and Drug Administration (Rockville, MD, USA) for approval now include a provision for sampling and storing human tissue for future genetic analysis (Abbott, 2003). At the same time, there is a boom of population biobanks, as more and more countries establish new sample collections (Kaiser, 2002). Among the best known are: the Icelandic Health Sector Database; the Estonian Genome Project; the UK Biobank; the CARTaGENE Project in Quebec, Canada; the Banco Nacional de ADN in Spain; the International HapMap Project; and several US biobanks, such as the National Children's Study, the Marshfield Clinic's Personalized Medicine Research Project and the National Health and Nutrition Examinations Surveys. ![][1] This boom of biobanks has spawned a ‘boomlet’ of regulations and guidelines, which has created controversies, particularly about the importance and definition of informed consent. The consent of participants is usually required before biobank samples can be used in research, but the nature of this consent, and how it is obtained, vary widely. Many European guidelines take the view that general consent is acceptable to use samples for future, as yet unspecified, research projects; US and Canadian policy follows a more rigorous standard of consent. Until 2004, both Europe and the USA considered coded and linked anonymized samples—in which a code links the sample to its donor—as identifiable and therefore … [1]: /embed/graphic-1.gif

The International Society for Biological and Environmental Repositories Presents Abstracts from Its Annual Meeting Due North: Aligning Biobanking Practice with Evolving Evidence and Innovation May 9–12, 2017 Toronto, Canada

SummaryModem biobanks should be considered as important structural platforms for sharing samples and data, providing benefits that go beyond those of a single study. To increase the impact of biobanking on feasible strategies to protect and improve peoples’ health, it could be useful to increase awareness about biobank research potential in the scientific community, as well as to promote collaboration among different fields of expertise. The basis for involvement of biobanks in public health has already been partly built up, emphasising the synergy in organising efforts and the openness to infrastructure collaboration, to ensure reliable long-term funding and resource sharing to the benefit of all. To obtain the maximum benefits possible from biobanks, which currently constitute a set of heterogeneous structures, a strategy of coordinated governance is needed, based on harmonisation of different aspects, built on the consensus of all stakeholders involved and society in general. It is important that researchers strive to understand public attitudes in this biobanking involvement so that the relationships between public trust in biobanking, donors’ behaviours and support for public-health involvement in the health-care system can be better understood.

The right to withdraw consent from research is a well-established right of research participants. This paper examines what it means to withdraw consent from biobank research in the European Union (EU) and the European Economic Area (EEA) – where biobank data is regulated by the General Data Protection Regulation (GDPR) – and how the implications of consent withdrawal are communicated to potential sample donors. An analysis of two biobank consent documents, one from Finland and one from Germany, indicates that donors are informed of the right to withdraw but receive potentially misleading information about its consequences. In particular, the documents do not clarify that withdrawal may not prevent further use of data, overstating the right’s practical effect. This communicative strategy risks undermining informed consent and may erode trust in biobanks as research institutions if sample donors come to feel that they have been deceived. To address this issue, it is recommended that biobanks provide clear and accurate information about the legal impact of consent withdrawal on associated data.

BackgroundMedical research to improve health care faces a major problem in the relatively limited availability of adequately annotated and collected biospecimens. This limitation is creating a growing gap between the pace of scientific advances and successful exploitation of this knowledge. Biobanks are an important conduit for transfer of biospecimens (tissues, blood, body fluids) and related health data to research. They have evolved outside of the historical source of tissue biospecimens, clinical pathology archives. Research biobanks have developed advanced standards, protocols, databases, and mechanisms to interface with researchers seeking biospecimens. However, biobanks are often limited in their capacity and ability to ensure quality in the face of increasing demand. Our strategy to enhance both capacity and quality in research biobanking is to create a new framework that repatriates the activity of biospecimen accrual for biobanks to clinical pathology.MethodsThe British Columbia (BC) BioLibrary is a framework to maximize the accrual of high-quality, annotated biospecimens into biobanks. The BC BioLibrary design primarily encompasses: 1) specialized biospecimen collection units embedded within clinical pathology and linked to a biospecimen distribution system that serves biobanks; 2) a systematic process to connect potential donors with biobanks, and to connect biobanks with consented biospecimens; and 3) interdisciplinary governance and oversight informed by public opinion.ResultsThe BC BioLibrary has been embraced by biobanking leaders and translational researchers throughout BC, across multiple health authorities, institutions, and disciplines. An initial pilot network of three Biospecimen Collection Units has been successfully established. In addition, two public deliberation events have been held to obtain input from the public on the BioLibrary and on issues including consent, collection of biospecimens and governance.ConclusionThe BC BioLibrary framework addresses common issues for clinical pathology, biobanking, and translational research across multiple institutions and clinical and research domains. We anticipate that our framework will lead to enhanced biospecimen accrual capacity and quality, reduced competition between biobanks, and a transparent process for donors that enhances public trust in biobanking.

Need for a national oral cancer biobank for cutting-edge translational research in developing countries.

Background: Assessing the public perspectives regarding donation of biospecimens to biobanks would be helpful with the establishment of biobanks in the Arab region.Objective: To develop a biobanking questionnaire in Arabic and assess its psychometric properties.Design: Multicenter cross-sectional study.Methods: We used a two-step process for questionnaire development. First, we decided on the important constructs for a questionnaire followed by development of an item pool through review of the scientific literature and published questionnaires. The questionnaire was refined through cognitive interviews and translation. An expert panel assessed content validity. The final questionnaire included five domains: perceptions; aspects important to participation in biobank research; preferences for type of biobank; attitudes toward biobanking; and willingness to participate in biobank research. Second, we distributed the questionnaire to 250 members of the public from Egypt, Jordan, Sudan, and Morocco to assess the questionnaire's psychometric properties, including reliability (internal consistency and Cronbach's alpha) and construct validity (convergent and divergent validity and exploratory factor analysis [EFA]).Results: Internal consistency yielded a range of Cronbach's alpha for the five domains from 0.62 to 0.80. EFA showed a 12-factorial solution. Kaiser-Meyer-Olkin measure of sampling adequacy was 0.907 and Bartlett's test of sphericity was significant (p < 0.005). Attitudes were positively correlated with willingness to donate (r = 0.30; p < 0.001).Conclusions: The final biobank Arabic language questionnaire showed excellent reliability and acceptable validity parameters. The newly developed Arabic questionnaire is the first psychometrically tested tool that can be used in the Arab region to assess the public perspectives on participation in biobanking research.

Despite the rise of research biobanks in the Middle East, they continue to struggle with the limited number of donors. Although qualified healthcare professionals may address it, the awareness of biobanks among future physicians is low. This paper assesses the attitudes towards research biobanks among Iranian medical students. 459 medical students completed an anonymous self-administered online questionnaire regarding the knowledge and attitudes of future physicians towards biobanking. This study demonstrates that almost half of the students had not heard about biobanks, and one-third had mixed feelings about biobank research. The majority declared a willingness to share their biological material for biobank research and declared altruistic motivation. Students' willingness to donate was influenced by the type of tissues, the purpose of biobank research and trust in biobanks, which influenced their preference for a study-specific consent model. Students expressed concern over biospecimens' unethical or commercial use and data safety. This research shows that promoting knowledge about biobank-based research among future physicians in Iran is crucial.

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.

Biobank research is a new and growing branch in human health sciences. Biobank is acollection of blood or tissue samples – from which DNA is available – and pieces of informationabout the living habits and health of the subjects who have donated samples to thebiobank. The purpose of biobanks is to find out risk genes related to common diseases inthe population, such as cardiovascular or mental diseases and cancer, or primary genescausing a particular disease. Establishment of biobanks is based on achievements in humangenome research that was completed in 2002. We may assume that the prospects of biobankresearch will be great, as the results in human genome research are translated into clinicalwork and health care systems.

This study aims to determine the level of banking soundness to increase public trust in Islamic Commercial Banks in Indonesia, to find out what obstacles are felt by the public in the services provided by the Bank. This study uses a quantitative approach method. The data collection technique and instrument used was purposive sampling. During the observation period it shows that the research data contained in the Risk Profile has a positive effect on public trust. This shows that the higher the Risk Profile, the higher the public's trust. In GCG there is a positive influence on public trust. This shows that the higher the GCG, the more it will affect public trust. There is a positive and significant effect of Earning on public trust. This shows that the higher the Earning, the higher the public's trust. In the Capital Variable there is a positive and significant influence on public trust. This shows that the higher the Capital, the higher the public's trust.