Online Training as a Means to Improve the Understanding of Ethical,Legal,and Social Aspects of Biobanking Research: Stakeholder Perspectives from South Africa

Abstract

Introduction:

The proliferation of biobanking activities demand a review of current training opportunities for service providers and researchers, specifically related to the ethical, legal, and social issues (ELSI) of biobanking research. Such information could be useful for planning and developing an educational course. However, it is equally important to explore the platform for offering such a course.

Aim and Objectives:

This study explored stakeholder perspectives on training needs in biobanking research and the use of an online training platform for such educational purposes.

Methods:

An exploratory study design using qualitative data was used. The study sample comprised selected stakeholders (n = 25) including biobankers, clinicians, researchers, postgraduate students, and research ethics committee members. Semi-structured in-person or Skype interviews were conducted and all ethical considerations were upheld. The interview focused on participants' perspectives on the accessibility and applicability of current available courses, and advantages and disadvantages of online biobanking courses. Data were analyzed using thematic analysis.

Results and Discussion:

The following themes arose from data analysis: inadequate availability of online courses, and advantages and disadvantages of online courses and opportunities for a successful training course. There was general consensus regarding the limited availability of context-specific training opportunities on the ELSI of biobanking. The majority of participants were previously self-taught and therefore relied on existing literature and collaborations with international biobanking groups for ongoing learning. Some respondents indicated that the costs of such available training courses were exorbitant. Some respondents also felt that available courses were not tailored to the specific needs of a diverse audience in biobanking. Apart from access, respondents reported possible challenges with internet connectivity and availability of data.

Conclusion:

Respondents expressed a need for affordable and focused online educational opportunities in biobanking, but highlighted that these courses need to be contextualized and integrated into other learning activities.

Introduction

The rich genetic diversity in Africa makes collection and transfer of samples particularly appealing to researchers. However, biobanking research has gained notoriety owing to the unidirectional transfer of biological samples off the continent with vague benefit sharing results for communities. The rationale for this movement of samples from Africa to other wealthier countries is often ascribed to a lack of local expertise in the handling, storage, and analysis of these samples; yet, there is very little published evidence to support efforts for capacity building in biobanking research.^1–4 At a continental level, these concerns have generated ethical, legal, and social debates around biobanking.

These debates include lack of clearly defined country-level legislative frameworks for the transfer of biosamples, respect for participant rights, privacy, interests, and more.^3,5–8

Another aspect to consider is the role of culture, social norms, and values that could influence individual and community understanding and engagement with biobanking practice.^7–9 Cultural interpretation of blood and the human body in African and other indigenous communities across the globe differs significantly from a Eurocentric monotheistic approach to religion and belief systems. Extracted biosamples are linked to the person that provided the human biological material, even beyond the affected person's death.¹⁰ Thus the notion of land, ancestors, culture, and biological material are intertwined with the belief systems of indigenous communities across Alaska, South Asia, New Zealand, and Australia, to name a few.¹¹

Such belief systems could come into conflict with worldviews of researchers and other stakeholders. Such disconnection could increase the divide between communities and biobanking researchers while fueling further distrust that could have an impact on community participation in biobanking research. This is a particularly important consideration in vulnerable communities and populations. Some of the known challenges that have contributed to community distrust in biobanking include researcher conduct, lack of transparency, inconsistency, inadequate individual and community engagement, and poorly articulated legislative and policy processes to regulate biobanking practice.^3,11 Public distrust in biobanking could unavoidably impact on the viability of the biobank, because individual and community participation could be low.

Although the H3Africa project was intended to increase local capacity development on the continent, it had the paradoxical effect of raising further concerns around the continued movement of samples, although in a more “legitimate” guise, out of Africa.⁹

In South Africa, like other countries in Africa, the collection, storage and sharing of biospecimens through biobanking provides exciting opportunities for scientific advancement,^2,12,13 yet many ethical, legal, and social issues (ELSI) remain unresolved. Although evidence suggests that setting up a biobank in South Africa does include the need for continuous staff skills development,^1,14,15 the reality is that informal biorepositing (ad hoc collection and storage of biospecimens) is also occurring in clinical and other settings. Although this is not unique to South Africa, the extent to which the service providers have been exposed to ongoing training, education, and skills development, is largely undocumented. We know little about the training opportunities and challenges experienced by researchers and other biobanking professionals in building capacity.¹⁶

The ELSI of biobanking practice, such as loss of participant privacy, possible commercialization of biosamples, exploitation of individuals and communities, and inadequate governance processes underscore the need for ongoing continuing education and skills development for those involved in biobanking research.^9,17 Given the specialized nature of biobanking, the extent to which the context-specific training needs on the ELSI of biobanking research are addressed in training programs, remains unclear.

At the same time, the COVID-19 pandemic has brought into sharp focus the value of biobanking^18–20 and the necessity of online learning as a means to ensure ongoing skills development for stakeholders.^21,22 The pandemic has inadvertently created new challenges for biosample collection, storage, and sharing^23–25 and online learning provides a plausible way of ensuring skills development and sharing of best practices for ethical research involving use of biosamples taken from COVID-19 patients. This is particularly relevant given the evolving nature of our understanding of COVID-19, and the challenges posed by national lockdowns, restricted movement, and social distancing measures. Biobanking research requires an increase in global collaboration, and solidarity²⁶ in sample sharing and the availability of appropriate online training courses. Taken all together, these steps can help to foster a global community with a shared vision toward positive health outcomes for all countries.

Some of the internationally available educational training initiatives include those by the International Society for Biological and Environmental Repositories (ISBER),²⁷ the U.S. National Cancer Institute (NCI),²⁸ Organisation for Economic Co-operation and Development (OECD),²⁹ and European Commission (EC). The OECD Principles and Guidelines for Access to Research Data from Public Funding²⁹ and the OECD Guidelines for Human Biobanks and Genetic Research.³⁰

In addition, the NCI Best Practices for Biospecimen Resources, published in 2016,²⁸ provided further training support together with the College of American Pathologists Biorepository Accreditation Program.²¹ ISBER formed partnerships with the Biobanking and Biomolecular Resources Research Infrastructure (BBMRI-ERIC); Canadian Tissue Repository Network (CTRNET); International Standardization Organization (ISO)/TC 276 and Public Responsibility in Medicine and Research (PRIM&R), to name a few,³¹ to drive global initiatives in developing best practices that included education opportunities. Other educational opportunities include short courses on biobanking such as Introduction to Biobanking Course³²; UBCx Biospecimen Research Methods Course³³; and degree programs such as a Master of Science (MSc) in Biobanking³⁴ and The MSc in Biobanks and Complex Data Management.³⁵

However, despite the availability of these educational opportunities, there is a paucity of data to illustrate the extent to which these offerings are actually utilized by the biobanking community in South Africa.

This article reports on a study designed to explore perspectives of South African stakeholders involved in biobanking research (researchers, biobankers, clinicians, postgraduate students, and research ethics committee [REC] members) regarding use of an online platform for the delivery of training needs. To date, there is no published empirical research on stakeholder perspectives on the value, challenges, or limitations of online training, as a possible mode of delivery for biobanking research in South Africa. This study forms part of a larger research project that explores the development of an online course on the ELSI of biobanking practice in South Africa.

The proposed training course can be compared with similar offerings on ethical considerations for the protection of human subjects in health research such as Ethics and Human Subject Protection: A Refresher Course³⁶; Research Ethics Training Curriculum—Second Edition;³⁷ and those offered by the Collaborative Institutional Training Initiative (CITI Program) on standards in research, ethics, and compliance training.³⁸ However, the proposed training course goes beyond these current offerings in that it is focused on the ELSI of biobanking, with particular emphasis on the contextual influences and challenges facing biobanking practice at a local level.

Materials and Methods

This exploratory study used qualitative data to determine stakeholder perspectives on training needs on the ELSI of biobanking practice in South Africa. The study comprised purposively selected stakeholders (n = 25), including biobankers, clinicians, researchers from a variety of backgrounds related to the field of biobanking, and REC members (Table 1). All were involved in the collection, operationalization, and/or oversight of managing stored biological material or in the ethics review of such related research. None of these selected study participants reported any involvement with external organizations in providing biobank training related to the ELSI of biobanking. The study sample was drawn from the four leading universities in the country that have known academic biobanks for research purposes. The study excluded other stakeholders such as policy makers, funders or community members.³⁹

Table 1.

List of Respondents

Interviewee	Position/experience
1	Researcher in biobanking, biobanker, REC member University A
2	Researcher in biobanking, biobanker, University B
3	Clinician, researcher in biobanking, University B
4	REC member, ethics teaching, University B
5	Clinician, researcher in biobanking, biobanker, University B
6	Researcher in biobanking, biobanker, University B
7	Retired: REC member. University D
8	Clinician, researcher in biobanking, biobanker, University B
9	Researcher in bioethics, REC member, University B
10	Researcher in pharmacology, REC member, University A
11	Retired: Researcher in bioethics, REC member, University A
12	Clinician, researcher in biobanking, biobanker, University B
13	Clinician, researcher in emergency medicine, REC member, University A
14	Researcher in genetics, REC member, University A
15	Researcher in bioethics, REC member, University A
16	Researcher in community-based and clinical trials, REC member, University A
17	Researcher in clinical and biobanking research, postgraduate student, University A
18	Researcher in biobanking, biobanker, University A
19	Researcher in clinical and biobanking research, postgraduate student, University C
20	Researcher in clinical and biobanking research, postgraduate student, University A
21	Researcher in bioethics, University D
22	REC member, University D
23	Researcher in bioethics, University D
24	Researcher in bioethics, REC member, University D
25	Researcher in biobanking, biobanker, University C

REC, research ethics committee.

Ethical clearance for the study was obtained from the Stellenbosch University (Health Research Ethics Committee 2 HREC Reference: S18/05/091). Potential participants were emailed information about the study along with an invitation to be interviewed. For those willing to participate, informed consent was obtained before the semi-structured interview. Interviews were conducted either in-person or via Skype based on the participant's availability. Interviews lasted approximately 30–60 minutes and were recorded digitally. Participant privacy and confidentiality were maintained.

The interview focused on participants' perspectives on the following topics: accessibility and applicability of current available courses; advantages and disadvantages of online biobanking courses; and recommendations for improving an online training course.

Data analysis commenced with a descriptive narrative of each participant's response to the questions posed during the interview. Data were then organized into groups based on the topics used in the interview and emergent themes were further analyzed to identify patterns and linkages between the themes. The emergent themes from data analysis were compared with the available literature. Data analysis was conducted by two researchers and themes were identified independently and then compared and agreed upon. Member verification was conducted on the transcripts before data analysis.³⁹

Results

The following themes arose: inadequate availability of online courses, advantages and disadvantages of online courses, and opportunities for a successful training course.

Inadequate availability of online courses

There was general consensus among all study participants on the limited availability of context- specific training opportunities in South Africa. The majority of participants (including those involved in setting up biobanks) indicated being self-taught in biobanking and were guided by existing literature or through interactions with international biobanking collaborative groups. As one participant commented:

When I started, there were no educational tools available in South Africa, much less biobanks in South Africa, especially at research institutions. So, I am basically going to say I am self-taught (2).

Training was seen as being hands-on; learning occurred through exposure to biobanking practices. Although this type of training could yield valuable dividends in terms of understanding and responding to context-specific needs, the counter-argument could be that this creates a climate of inconsistency in biobanking practice. Although there are agreed upon international standards on best practices and quality control systems, the implications are that these are not uniformly applied in local settings.

There was inconsistency among respondents on the value and relevance of available courses on biobanking. Courses that were available generally originated from higher income countries and the cost of these courses was often prohibitive. Respondents also indicated that some of the available courses were applicable mainly to scientists; thus, the value and relevance of these courses were questionable. One respondent noted:

These courses were not widely accessible to the public in the sense that [these] were organized by scientists (9).

Accessibility of online courses was seen as an important consideration for the development of any training course in biobanking.

Advantages of online courses

Increasing access

Some respondents felt that technology-assisted learning allowed opportunities for flexible learning without interruptions in the workplace. The accessibility of an online training course was perceived to target a wider audience, thus creating opportunities to integrate learning with work responsibilities as noted by one respondent.

Many lab technicians are currently inundated with their current duties. So, to leave office for a three-to-four-day course could be not feasible. An online module that teaches them the basics that they can do at their own time and get a certificate is very valuable (1).

Respondents also pointed out that online training courses in biobanking had potential for continuing professional development. Certification and accreditation of such courses by the relevant accrediting authority were also seen to increase the credibility of the training opportunities.

Disadvantages of online training courses

Respondents noted four main disadvantages of online training courses for biobanking. These included: unethical online practices, challenges with access, learning challenges, and assessing learner competencies, each of which are discussed in more detail hereunder.

Unethical online practice

Respondents pointed out that the online platform offered little to no oversight monitoring to confirm that the person completing the course was actually the person enrolled in the course. There is a need to ensure that the person given credit for the course actually learned that material and has acquired the associated knowledge. The possibility of unscrupulous and unethical online behavior could defeat the goal of knowledge requirement as illustrated hereunder:

I have recently heard from quite a senior person who was under pressure to get a certificate, that the person … got their PhD student to do it for them (17).

Although the need for ensuring ethical behavior was important, it was impractical to constantly monitor online behavior. The focus was therefore on building a strong ethical culture, including the need for individual researchers and other stakeholders to engage in self-reflection for personal ethical conduct.

Respondents also asserted that the costs of online courses could be viewed as a means of commercialization for the service providers. Online courses were viewed as a commodity to provide income for the service providers without there being any value for the learner. This was particularly true in the case of poorly designed courses that did not meet the learner's needs.

Challenges with access

Although online courses could increase access to learning, the opposite held true when there were reported challenges with internet and WIFI connectivity, broadband width, access to data or availability of laptops, computers, or smartphones. Some of the recommendations to overcome this challenge included the following:

Maybe not having massive files that take up a lot of data or downloading that people should be able to read pdf files online or that if you have videos, you also have transcripts so that if people don't have data, they can read the transcripts (4).

Learning challenges

Some respondents pointed out that the online platform could create a sense of individual isolation, where there is little space for peer-assisted support.

People may misinterpret information and questions and then there isn't someone to assist them (12).

For some people, they want a face-to-face interaction (7).

Misinterpretation of learning material was viewed as having serious ethical and legal consequences that could challenge the validity of training in biobanking practice. Furthermore, language proficiency was also seen as presenting challenges in understanding concepts and practices in biobanking. Course developers needed to understand the learning styles of online learners to build appropriate support for learning. This could include opportunities for feedback such as online chat rooms and discussion boards to enhance online interactive learning.

Some respondents also pointed out that online training could be part of a “hybrid” approach where a predominately online training course has opportunities for in-person interaction and perhaps a field trip to a model biobank.

The online platform was seen as having potential to reach a diverse audience with different levels of prior learning, therefore different learning needs. The challenge was to tailor a course that could meet all individual training needs.

I think you would have to tailor your content to be relevant to the different constituencies [stakeholder needs] (25).

Challenges with assessing learning competency

Respondents pointed out that assessment questions such as multiple-choice or true/false, do not contribute to deep learning experiences such as self-reflection. Thus, learning was seen to be superficial.

They [learners] could be just merely filling in answers just for the idea [purpose] of getting a certificate but not learning much (1).

These were important factors to consider when developing an online course and the challenge was to stimulate deep learning within a technology-assisted learning environment. These noted challenges in online learning were important considerations; however, respondents also outlined possible ways of optimizing the online platform to increase learning and networking.

Opportunities for a successful training course

Respondents welcomed any new initiative that could increase understanding and participation in biobanking practice. Online training platforms could provide opportunities for interactive learning, support, sharing of ideas and understanding country-specific laws and regulations.

Grow an online community base where professionals can actually form relationships with each other and form cohorts with each other … a group that can bounce questions off each other and debate ethical issues, update each other in different developments in their own countries or areas (16).

There was also a need for proper marketing of the course to increase awareness of the training program. In addition, conducting a “pilot-test” of the course could help determine its relevance and acceptability within the target audience.

Sustainability of the training course

Respondents suggested long- term integration of the course as part of a curriculum as opposed to an online module or course. Respondents also suggested the need for such courses to be made compulsory.

There has to be some other compulsory component to it. People are not going to do this out of interest (8).

The overall consensus reached by respondents was the need for sustained exposure that is reflected at multiple levels of learning so that the learner is sensitized to understanding the nature and context of biobanking practice. A suggestion to maintain interest and competence in biobanking is illustrated hereunder.

Keep a good standard and to keep up with changing laws or regulations or movement in the field, update your course materials (16).

Availability of resources

Respondents pointed out that a training course alone cannot improve biobanking practice. The availability of necessary resources is equally important to ensure optimal biobanking practice.

Feasibility is always mainly finance and computer skills, particularly those that will require some form of a website to maintain, obviously requires a host. Feasibility and sustainability to a certain extent depends on IT quality, IT facilities, IT knowledge. (14).

In addition, the sustainability of the course will be dependent on the availability of resources such as funding and staffing, which in turn could determine the success of the training program. Funding is required for setting up and maintaining the website. At the same time, the availability of administrators and course facilitators are critical to ensure that onsite support is provided for the learner.

Discussion

The limited availability of training opportunities, specifically in relation to the ELSI of biobanking is not unique to South Africa. Mayne et al. also indicated limited training opportunities in biobanking throughout Africa.³ Similarly, Castellanos-Uribe highlighted that previously, biobanking knowledge and skills acquisition occurred mainly through self-education and ad hoc training before efforts were made by ISBER and others to formalize such practices.²²

Study participants highlighted the need for ongoing educational opportunities. This was consistent with other studies in that formal training was seen as adding legitimacy to biobanking practice⁴⁰ in addition to building researcher capacity and public confidence in biobanking research.^9,15,16 Yakubu et al. added that capacity building was necessary, especially among junior researchers.^41(p5)

Respondents in this study suggested that the proposed training course be integrated into the existing curricula. Thus, there is a need to advocate for the course to be included as part of ethics training requirements, for ethical clearance related to biobanking research, particularly in the identified four universities. At the same time, the course could assist in creating greater stakeholder (researcher, clinician, biobanker, and REC member) awareness of the ethical, legal, and social issues of biobanking. Such training opportunities could bring together the different role players in biobanking through a shared platform that in turn could also provide opportunities to share best practices. Such educational efforts can thus go beyond knowledge acquisition in that the confluence of role-players in biobanking could also collectively influence aspects such as the governance of biobanks both nationally and internationally.

It could, however, be further argued that formal ethics training does not necessarily guarantee ethical and professional behavior.^42(p1023) Respondents in this study were also concerned with the verification of enrolled learners: This finding is supported by Appanna who postulated that “the instructor must have a way of checking that each student is actively participating.”⁴³

Some possible ways of verifying the learner could be through digital identifications; however, such technologies require the use of devices that support these services. This reiterated the need for building a stronger culture of scientific integrity, where issues of trust and honesty in online learning engagements lie with the individual. A policing approach would impractical. There is a need for individual accountability and ownership for wayward actions.

The study findings indicated that an online course on the ELSI of biobanking research could assist in addressing the knowledge gap but that there was a need for such a course to be integrated into other capacity development efforts. The value of online learning versus traditional classroom-based learning is also supported by other studies.^44–47 Some of the advantages are that online courses could be integrated into activities such as face-to-face meetings, workshops, practical field trips to a biobank, and ongoing networking and support.⁴⁸ This is particularly relevant in the context of the COVID-19 pandemic, given the new challenges and the need for ongoing capacity building.⁴⁹ Thus, a hybrid or blended learning approach comprising a combination of online training with face-to-face contact sessions, coupled with visits to a biobank could be more plausible in ensuring that the learner has a holistic learning experience.

This finding is consistent with other educational offerings that use a blended learning approach such as the Annual Blended Diploma Course in Informed Consent and Foundations of Modern Bioethics offered by the Center for Bioethics and Research in Nigeria.⁵⁰

Such educational offerings need to also highlight the importance of committed and ongoing community and other stakeholder engagement efforts so that trainees are aware of the multiple complexities in the ELSI of biobanking, as described earlier. Ultimately, educational offerings could add both legitimacy to biobanking practice and contribute to building public trust and confidence in this field. This is particularly important to consider when dealing with vulnerable communities.

Respondents in this study highlighted a number of limitations with online learning. The most significant was access to internet connectivity and availability of cellular data, computers, and smartphones. Understanding the digital divide in South Africa and in other low- and- middle-income countries is an important consideration when developing any online training course. There is thus a need for greater investments to support online engagement, including the platforms for online learning. These findings are supported by Appanna who added that possible limitations of online courses could include costs for the initial start-up of the course.⁴³

Although funding would be necessary to ensure sustainability of the training initiative and thus justify the need to charge the prospective learner, these costs should not be so prohibitively high that they limit access to online learning.

At the same time, the study findings highlighted the need to ensure that training courses are updated regularly and that these are relevant, dynamic, and responsive to the changing climate of biobanking practice. To overcome some of the possible technical challenges previously described, it is crucial that the course be designed in such a way that the downloading of information is unnecessary. There should also be dedicated onsite support that goes beyond the administrative aspects. Discussion fora and space for Q&A (questions and answers) in real time should be considered. Other options for online interaction could include videoconferencing tools/technology such as Zoom, Skype, Microsoft Teams, Face Time, and Google Meet.

However, some of these tools/technologies could require more bandwidth that others, thus some are more suitable for places with low internet strength than others. The limitations in the use of these technologies must be considered in light of the challenges raised by study participants, namely, interruptions in internet connectivity and inadequate data depending on where the trainee could be accessing the course (whether from home or the workplace).

Apart from ensuring the availability of such training courses, there is a need to measure the impact of such education on functioning and management of the biobank.²²

Limitations of the study

Although the study provided valuable insight into stakeholder perspectives on the use of an online platform for educational training related to the ELSI of biobanking, some limitations are noted. The study focused only on stakeholders involved in the operationalization and oversight of biobanking or in the ethics review of such research. More research is required to elicit perspectives from other stakeholders such as communities, regulatory bodies, and policy makers on the use of online training to build educational capacity. Civil society could provide perspectives on the content of certain aspects of the course such as ethical, social, and cultural issues and community engagement. The study also only focused on stakeholders in biobanking practice in South Africa, thus its generalizability may be limited to similar low- and middle- income settings.

Conclusion

The results of this study indicated that respondents were generally in favor of educational opportunities in biobanking research given the current paucity of available courses. The value of online education should be weighed in light of potential learners' ability to access such platforms.

Ethics Approval and Consent to Participate

Written informed consent was obtained from all participations before commencement of the study. Institutions have been anonymized to preserve confidentiality.

The study was approved by the Stellenbosch University (Health Research Ethics Committee 2, HREC Reference: S18/05/091).

Footnotes

Author Disclosure Statement

No conflicting financial interests exist.

Funding Information

This study was funded by the following: NIH Fogarty grant: D43 TW01511-01—Advancing Research Ethics Training in Southern Africa (ARESA): Leadership Program and National Human Genome Research Institute of National Institutes of Health. Award number UO1HG008222; U01 HG008222-02—Community Engagement for H3Africa Biobanking Research: The Tygerberg Model. The funding body had no role in the design of the study, collection and analysis of data, or in the interpretation of the data and report writing.

References

Soo

, Mukomana

, Hazelhurst

, Ramsay

. Establishing an academic biobank in a resource-challenged environment. S Afr Med J, 2017; 107:486–492.

Abayomi

, Christoffels

, Grewal

, et al. Challenges of biobanking in South Africa to facilitate indigenous research in an environment burdened with human immunodeficiency virus, tuberculosis, and emerging noncommunicable diseases. Biopreserv Biobank, 2013; 11:347–354.

Mayne

, Croxton

, Abimiku

, et al. Genes for life: Biobanking for genetic research in Africa. Biopreserv Biobank, 2017; 15:93–94.

Matandika

, Ngóngóla

, Mita

, et al. A qualitative study exploring stakeholder perspectives on the use of biological samples for future unspecified research in Malawi. BMC Med Ethics, 2020; 21:1–10.

Akintola

Legal implications of data sharing in biobanking research in low-income settings: The Nigerian experience. S Afr J Bioeth Law, 2018; 11:15–19.

Mahomed

Human biobanking in developed and developing countries: An ethico-legal comparative analysis of the frameworks in the United Kingdom, Australia, Uganda, and South Africa. Cambridge Q Healthc Ethics, 2020; 30:146–160.

Matimba

, Chimatira

, Kuguyo

, et al. Understanding ethical, legal and societal issues (ELSIs) in human biobanking and genomics for research and healthcare in Zimbabwe: The Genomics Inheritance Law Ethics and Society (GILES) initiative [version 2; peer review: 2 approved]. AAS Open Res, 2019; 2:1.

Moodley

, Beyer

. Tygerberg research Ubuntu-Inspired community engagement model: Integrating community engagement into genomic biobanking. Biopreserv Biobank, 2019; 00:1–12.

Moodley

Legitimacy, trust and stakeholder engagement: Biobanking in South Africa. Asian Bioeth Rev, 2017; 9:325–334.

10.

Jegede

Culture and genetic screening in Africa. Dev World Bioeth, 2009; 29:128–137.

11.

Aramoana

, Koea

, CommNETS

Collaboration

. An integrative review of the barriers to indigenous peoples participation in biobanking and genomic research. JCO Glob Oncol, 2020; 6:83–91.

12.

Moodley

, Sibanda

, February

, Rossouw

. “Its my blood”: Ethical complexities in the use, storage and export of biological samples: Perspectives from South African research participants. BMC Med Ethics, 2014; 15:1–7.

13.

Dhai

, Mahomed

. Biobank research: Time for discussion and debate. SAMJ, 2013; 103:225–227.

14.

Schneider

, Sanderson

, Geiger

, Nokta

, Silver

. A biobank to support HIV malignancy research for sub-Saharan Africa. S Afr Med J, 2016; 106:867–869.

15.

Merdad

, Aldakhil

, Gadi

. Assessment of knowledge about biobanking among healthcare students and their willingness to donate biospecimens. BMC Med Ethics, 2017; 18:32.

16.

Hartung

, Baber

, Herpel

, et al. Harmonization of biobank education for biobank technicians: Identification of learning objectives. BioTech, 2021; 10:1–13.

17.

Labuschaigne

, Dhai

, Mahomed

, et al. Protecting participants in health research: The South African Material Transfer Agreement. S Afr Med J, 2019; 109:353–356.

18.

Vaught

Biobanking during the COVID-19 pandemic. Biopreserv Biobank, 2020; 18:1–2.

19.

Hull

, Berkman

Re-purposing research samples during a pandemic: Bridging public health ethics and research ethics frameworks. Webinar sponsored by the Division of Cancer Control and Population Sciences (DCCPS) and the Division of Cancer Treatment and Diagnosis (DCTD) 2020. https://www.youtube.com/watch?v=090Z7tS4EcE.

20.

Paul

, Chatterjee

. Data sharing solutions for biobanks for the COVID-19 pandemic. Biopreserv Biobank, 2020; 18:581–586.

21.

Kinkorová

Education for future biobankers—The state-of-the-art and outlook. EPMA J, 2021; 12:15–21.

22.

Castellanos-Uribe

, Gormally

, Zhou

, Matzke

, Watson

. Biobanking education. Biopreserv Biobank, 2020; 18:1–3.

23.

Moodley

, Allwood

, Rossouw

. Consent for critical care research after death from COVID-19: Arguments for a waiver. S Afr Med J, 2020; 110:629–634.

24.

Dutfield

Coronavirus: It is morally indefensible for a nation to keep life-saving drugs for itself. The Conversation 2020.

25.

Simeon-Dubach

, Henderson

. Opportunities and risks for research biobanks in the COVID-19 era and beyond. Biopreserv Biobank, 2020; 18:503–510.

26.

Bekker

, Mizrahi

. COVID-19 research in Africa. Science (80-), 2020; 368:918–919.

27.

International Society for Biological and Environmental Repositories (ISBER). The ISBER best practices: Recommendations for repositories fourth edition. https://cdn.ymaws.com/www.isber.org/resource/resmgr/best_practices_4th_edition/isber_best_practices_recomme.pdf (accessed June 16, 2021).

28.

National Cancer Institute (NCI). Best practices for biospecimen resources. 2016. https://biospecimens.cancer.gov/bestpractices/2016-NCIBestPractices.pdf (accessed June 16, 2021).

29.

Organisation for Economic Cooperation and Development (OECD). OECD principles and guidelines for access to research data from public funding. Paris: OECD Publishing; 2007.

30.

Organisation for Economic Cooperation and Development (OECD). OECD guidelines on human biobanks and genetic research databases. Eur J Heal Law, 2010; 17:191–204.

31.

International Society for Biological and Environmental Repositories (ISBER). Introducing ISBER'S affiliates and associate partners. 2020. https://www.isber.org/news/521651/Introducing-ISBERs-Affiliate-and-Associate-Partners.htm (accessed June 16, 2021).

32.

O'Donoghue

, Matzke

, Watson

. ISBER best practice-based education: ISBER-Canadian Tissue Repository Network introduction to biobanking. Biopreserv Biobank, 2018; 16:13–15.

33.

Matzke

, O'Donoghue

, Watson

UBCx “Biospecimen research methods course.” Biopreserv Biobank 2020;18:4–6.

34.

Medical University of Graz. Biobanking. 2021. https://postgraduate-school.medunigraz.at/en/science-and-research/biobanking (accessed June 20, 2021).

35.

Université Côte d'Azur. MSc in biobanks and complex data management. 2021. https://www.masterstudies.co.za/MSc-in-Biobanks-and-Complex-Data-Management/France/Université-Côte-d'Azur-(UCA) (accessed June 20, 2021).

36.

The Association of Clinical Research Professionals. Ethics and human subject protection: A refresher course. 2021. https://acrpnet.org/courses/ethics-and-human-subject-protection-a-refresher-course (accessed June 20, 2021).

37.

Fhi360. Research ethics training curriculum—Second edition. 2011. https://www.fhi360.org/sites/all/libraries/webpages/fhi-retc2/RETCTraditional/intro.html (accessed June 16, 2021).

38.

The Collaborative Institutional Training

Initiative

. The Trusted Standard in

Research

, Ethics, and Compliance

Training

. 2021. https://about.citiprogram.org/ (accessed June 25, 2021).

39.

Singh

, Moodley

. Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa. BMC Med Ethics, 2021; 22:84.

40.

Matzke

, O'Donoghue S

. Barnes R, et al. Certification for biobanks: The program developed by the Canadian Tumour Repository Network (CTRNet). Biopreserv Biobank, 2012; 10:426–432.

41.

Yakubu

, Tindana

, Matimba

, et al. Model framework for governance of genomic research and biobanking in Africa—A content description [version 2; peer review: 3 approved]. AAS Open Res, 2018; 1:1–18.

42.

Wolpe

Reasons scientists avoid thinking about ethics. Cell, 2006; 125:1023–1025.

43.

Appanna

A review of benefits and limitations of online learning in the context of the student, the instructor, and the tenured faculty. Int J E-Learning, 2008; 7:5–22.

44.

Gopal

, Singh

, Aggarwal

. Impact of online classes on the satisfaction and performance of students during the pandemic period of COVID 19. Educ Inf Technol, 2021; 26:6923–6947.

45.

Elfaki

, Abdulraheem

, Abdulrahim

. Impact of E-learning vs traditional learning on student's performance and attitude. Int J Med Res Health Sci, 2019; 81:76–82.

46.

Curran

, Fleet

. A review of evaluation outcomes of web-based continuing medical education. Med Educ, 2005; 39:561–567.

47.

George

, Papachristou

, Belisario

, et al. Online eLearning for undergraduates in health professions: A systematic review of the impact on knowledge, skills, attitudes and satisfaction. J Glob Heal, 2014; 4:010406.

48.

Sehovic

, Gwede

, Meade

, Sodeke

, Pentz

, Quinn

. A web-based platform for educating researchers about bioethics and biobanking. J Cancer Educ, 2016; 31:397–404.

49.

Henderson

, Kozlakidis

, Fachiroh

, et al. The responses of biobanks to COVID-19. Biopreserv Biobank, 2020; 18:483–491.

50.

Center for Bioethics and Research Nigeria. Annual blended diploma course in informed consent and foundations of modern bioethics. 2021. https://bioethicscenter.net/cbr-blended-diploma-course (accessed June 20, 2021).