Abstract
Biobanking is a relatively newly recognized and innovative branch of science, which includes the collection of samples and associated data from hospitals, diagnostic centers, and voluntary donations for biomedical and environmental research. It involves diverse stakeholders at the junction of society, science, ethics, law, and politics. A key element in the success of a biobank is the trust and support of public donors, clinicians, and scientists. To achieve trust, it is important to implement strategies that can increase biobank awareness in common people, and different types of communities. Biobank laws and regulations and transparent governance by the biobanks are also crucial to achieving public trust.
Introduction
Biobanking is a foundation for genomic and personalized medicine. Recent advancements in technology and research platforms have greatly expanded the potential of biobanks to identify biomarkers, support the identification of best treatments, and drug discovery. Biobanks are better developed in western countries1,2 and there are many underrepresented populations in research biobanks, including many of Asian descent.
Biobanking is new in developing countries such as India, Indonesia, and Vietnam, and their populations are not as aware of the importance of biobanks. In India, the first tissue biobank was established at 19883; however, most of the other tissue biobanks have been established in past 10 years. 4 Despite many reports on molecular epidemiology studies from Indonesian populations, there have been very few publications on Indonesia's biobank activities (Fachiroh et al., 2019; Karyana et al., 2015).5,6 In Vietnam, biobanking activities have been limited to clinical support of host institutions or hospitals, and very few of them have been reported in the literature. 7 In the biomedical field, the Vietnam Ministry of Health approved the first public tissue bank in 2018 (Viet Duc Tissue Bank) 8 and the first private tissue bank in 2019 (Vinmec Tissue Bank). 9
Biobank donors have a high degree of interpersonal trust in the individual, that is, his/her clinician or person requesting consent for biosamples. Anecdotally, sometimes biobank donors do not give consent as they believe that there would be a hidden extra burden on their treatment. Consent for donation also varies per education level. Less-educated donors do not often ask questions, whereas highly educated ones ask many questions and sometimes withdraw their participation. Awareness, literacy, ethics, direct benefits, misuse of samples, and individual trust are major challenges to building trust in biobanks.
Trust is essential to expand biobank-based research, and trust must be earned, not demanded. Government initiatives to enhance awareness, establishment of ethical oversight committees, and transparency of sample collection and use are the major factors that can improve people's trust in biobanking.
Biobanking and trust issues
Biomedical research has seen tremendous growth over the past decade. The need for quality-annotated samples by researchers is increasing in parallel with this growth, as well as the need for donors from diverse communities.10,11
Biobanks need the support of donors for the collection of biosamples. Biobanks are the custodians of the donated biosamples, while the donors retain the ownership of their biosamples. 12 The research focused on public opinion and understanding has demonstrated that public trust in biobanks fosters research and encourages donation to biobanks.13,14 According to Nooteboom et al., trust is defined as “an expectation that people will not fail us, or the neglect or lack of awareness of the possibility of failure, even if there are perceived opportunities and incentives for it.” 15
Since trust is an uncertainty of the future and placed in another who is not under one's control, building trust is difficult, and there are several challenges in communicating with donors. Trust can only be bestowed by donors based on their awareness16,17 and it cannot be demanded by biobanks. 18 Public trust is influenced by many factors, 19 including awareness, communication and transparency, community involvement, the status of the institution involved, and the type of consent.
Educating communities about the importance of biobank donations, associated risks, and processes adopted by biobanks to minimize this risk may enhance participation in biobanks. Trustworthiness of biobanking also improves by the transparent interaction with donors, clarity about the use of samples, and consistency of organization where biobank is established. The traceability of the biosamples from donation to research results should be communicated to stakeholders by sharing on the biobank website or through publications or newsletters. Furthermore, electronic and web-based transparency may have some limitations for less-educated communities and the lack of technology infrastructure. 20 Advancement in medical research slows without engaging the community in research. 21 Biobankers should be compelled to meet with community leaders to transparently explain the purpose of the biobank and its benefits to the community and individual.
Researchers approach biobanks to provide biosamples and associated data for health research. Biobanks often act as an important bridge between donors and scientists. They can facilitate the supply of high-quality biosamples by safely distributing the needed samples to researchers. Researchers are the second-most important stakeholders of the biobank. Despite the advancement of biobanks, there are still many technical, operational, and ethical hurdles that stand in the way of researchers from using the biosamples stored in biobanks. Limited availability and accessibility of biosamples, lack of high-quality samples, and heterogeneous annotation are major roadblocks for researchers. 22 Harmonization of biobanking practices with quality standards is an important goal for biobanking globally.
This article is based on the view of participants of the roundtable discussion in the ISBER 2021 meeting held on May 13, 2021. The goal of the discussion was to understand how to improve the trust of donors and researchers in biobanks.
Methods
Qualitative discussions on trust were conducted during a roundtable meeting at the ISBER virtual conference in 2021. A total of 18 participants from 9 countries participated in the discussion. The participant countries included—Vietnam, India, Japan, Indonesia, Australia, France, Germany, Canada, and the United States. Coauthors conducted a thematic analysis of the opinions and discussion of “topics.”
As a reference for this discussion, the roundtable leaders reviewed different articles on “Trust,” and they mined some less discussed and burning questions related to the trust of donors and researchers in biobanks. The leaders put together the questions in PowerPoint slides to guide the discussion. Furthermore, an abstract titled “Improving Trust in Biobanking” was submitted to ISBER to organize a roundtable discussion among common interest participants. Selected questions were raised for discussion topics for improving the public trust and the researcher's trust in biobanks.
All participants of the roundtable expressed varying levels of concern about the trust of the public and researchers with biobanks and biobanking. The topics listed hereunder (Table 1), from both “Donor” and “Researcher's point of view,” were listed for discussion. Owing to time constraints and robust conversation, the roundtable participants were only able to discuss the topics related to “Donors.” The authors plan to host an additional discussion focused on the researchers' part in the next roundtable discussion session.
List of Topics for Discussion
Results and Discussion
Based upon the discussion, views of participants from different countries were summarized by the coauthors as summarized below.
Trust Issues Faced by Different Countries
The participants articulated serious concern over the trust of the public and researchers with biobanks. As per the view of Australian participants, “so far, we don't have many trust issues with researchers, but we do have problems seeking acknowledgment from researchers.”
In India, many government and private biobanks have been established over the past 5 years. Public donation of biosamples and the availability of quality biosamples in biobanks for research are not well understood due to the lack of awareness about the value of biobanks among donors, clinicians, and scientists. “The community knowledge and its involvement in the biobank are lacking, and there is no institutional, community, and public initiative to make people aware and to build trust in biobanking,” said Dr. Birendra Yadav, Manager, National Liver Disease Biobank.
Biobanking is a rather new concept in Indonesia. In the frame of medical research, despite growing interest in research and the understanding that statistical power is gained from the analysis of large sample collections, understanding the value of quality and long-term sample collection is limited. There is also a lack of understanding of its nontechnical aspects (ethics, legal, and social issues) that still needs to be understood within Indonesia's own context. Public biosample donation is done through researchers, therefore researchers are the custodians of the biosamples and samples are not typically sent to biobanks.
Measures to address the trust issues
Awareness
The discussion included information about programs/methods that should be implemented to increase the trust of donors toward biobanks.
Wayne Ng, General Manager, Victorian Cancer Biobank said, “According to our experience, it is easier to educate participants/families through a clinical pathway since they trust clinicians most.” Educating the public through health care workers is more effective and may attract more donors to provide biosamples for biobanks.
Participants stressed the usage of social media and search engines to increase biobank awareness and gain trust from the public. Online platforms, with their wide reach, are very effective to make information easily accessible to the public. Biobank websites can also play a vital role in increasing awareness among people. Access to electronic forums, such as a website, may still be a barrier to some underrepresented communities in biobanking awareness.
A dedicated and well-reputed institution or organization may also help in increasing public awareness of biobanking. For example, in India where biobanking culture is very new to the public, a not-for-profit organization named “BioBank India Foundation” has been formed with an aim to work on awareness and growth of biobanking science in India. They conduct various conferences to spread awareness of biobanks and come up with ideas and programs to share information with the public. Since the lay public has trust in such reputed and nonbiased organizations, implementing awareness programs through the foundation is seen as a trusted source. However, in Vietnam, not-for-profit organizations are not the most trusted sources by the lay public. Information is alternatively distributed on the mainstream media, especially national channels, such as Vietnam Television, and are considered to be highly trusted. Also, experts' voices from reputed national institutions are also viewed as highly creditable.
In Japan, the Japan Agency for Medical Research and Development works on the biobank campaign and holds liaison meetings to help make companies and users aware of biobanks. Also, the Japanese Society of Pathology has recently begun to hold a regular seminar on the ways biobanks contribute to molecular pathology and clinical research. Medical professionals have gradually recognized that biobanks are an essential core facility in Japan.
In the United States, surveys on trust in health care and biobanking have shown that awareness and trust in biobanking are complex.23,24 Trust can be built with the public as they become aware and build knowledge of privacy measures in place. Community engagement and consultation efforts are often needed to provide a direct understanding of the goals of biosample collections in research.
Communication and transparency
When potential donors have access to information about how their biosamples will be collected, where and how they may be used, who may gain access to their biosamples and data, who are involved in the studies that use the biosamples, the potential advantages and risks of studies using biosamples, this awareness often increases donor trust in biobanking.
Biobanks can promote transparency by providing clear information of biobank details through their website. For example, information could include the aim(s) of the biobank, the stakeholders, the details of dedicated contact persons, and how researchers can request access to collections. However, in low- and middle-income countries, website access may be limited. In such countries, first-hand access to biobank staff who collect or study the donor biosamples can be beneficial to earn the donor's trust. Almost universally, lay people have more faith in the clinicians who treat them on a regular basis. Clinicians can also play an important role by educating their donors about participation in biobank donations.
It is said that “Seeing is believing.” Biobanks can build trust by arranging donor visits or open house days. For example, In the context of the Universitas Gadjah Mada Biobank Unit, Indonesia, they arranged a biobank visit for people where they could see the biobank infrastructure, talk with the staff, and learn more about the biobank procedures. That one-time event gave a good impression to the lay public that their blood donations are well-kept and will be used for the advancement of science.
Simplifying the consenting process can inform donors and lessen confusion and, therefore, increase trust in biobanks. For instance, standardizing consent documentation using broad consent for all the trials and biobanks within one institution, with detailed individual items for each study, may simplify documentation. Clear and transparent consenting procedures are also important, for example, “Using informed consent in local language and proper explanation will shape trust,” said Daisy Albarran.
Implementing adequate standards for transparency in biobanks governance helps in building the trust of not only current but future donors. All donors stressed the importance of biobank law and regulation to gain public trust. Koh Furuta said, “the biobanks in Japan follow legislation that is similar to European Union General Data Protection Regulation (EU-GDPR), but Japan does not currently have a biobank law.” Wayne Ng applauded the robust biobank legislation in Finland and said Sweden is following a similar model.
Community involvement
Every community has its cultural and religious beliefs. For example, in certain African countries cutting hair is an important event since it is associated with the strength and maturity of that person. 25 Owing to such beliefs, donors might be unwilling to donate their hair to research. In many communities, people respect religious leaders and follow the rules set by their religions. Since biobanking involves the collection of biosamples, which are usually stored long term for various types of research, potential donors may be unsure if the research will comply with their religious beliefs. Clarifying those complex issues through community engagement of religious and community leaders is necessary to ensure the progress of biobanking.
Through discussions with the community and their leaders, researchers may help influence the public's perception of biobanking research. 26 The local leaders, government institutes, and hospitals can run education programs for the public and encourage them to participate in donating to a biobank. As one example, a cancer center in Jordan asked for the help of religious leaders in an awareness program to promote the early detection of cancer 27 (Table 2).
View of the Participant from Different Countries on Donor Trust in Biobanks
UGM, Universitas Gadjah Mada.
Conclusions
All the participants articulated the serious need for the trust of the public and researchers with biobanking. Improving trust will best be achieved through awareness programs, transparency, and community involvement with the public, as well as researchers. Trust would further be increased if the researchers harmonize biobanking through maximizing the quality of the biosamples, annotation, accessibility, as well as by resolving the ethical issues related to the use of residual samples from previous projects.
Trust in biobanking can be improved by engaging potential donors within their trusted health care settings, engaging in community discussions and education efforts on biosample research. These actions could help ensure the use of donor samples and privacy of their data in secure systems. Involvement of underrepresented communities, such as Indigenous peoples on many continents, should be fostered. The trust of these communities is an important topic to increase representation in biobanks. Unfortunately, due to time limitations, this topic will be raised in a future discussion.
Footnotes
Acknowledgment
We thank ISBER for their help and for providing a platform for a roundtable discussion.
Authors' Contributions
B.K.Y., H.V., J.F., T.T., and W.N. are ISBER regional ambassadors in the Indo-Pacific Rim region. M.K.H. is an ISBER regional ambassador in the Americas region. K.F. is Director-at-Large—Indo-Pacific Rim region. L.Z. is ISBER Ped SIG coordinator. S.G. is Biobank Intern at BBIF.
Author Disclosure Statement
The authors hold no conflict of interest with the content of the manuscript.
Funding Information
No funding was received in support of this round table, nor in the preparation of the manuscript.