ISBER 2021 Virtual Symposium

How Community Engagement Can Shape Biobanking Governance
Facilitators: Carol Weil, National Institute of Health, USA, Helena Ellis, Biobanking Without Borders, USA

Community engagement is a vital component of biobank governance, the set of policies, infrastructure, and procedures collectively guiding the ethical and operational decisions of a biobank. Biobanks worldwide increasingly recognize the importance of engaging community on key issues of governance. For example, participants consistently express their desire to receive clinically actionable health results after they’ve participated in a research project, and to hear about study findings in terms they can easily understand.

Other governance issues that require the engagement of community include, but are not limited to: Informed consent process; Data protection; Retention and distribution of samples and data; Transparency, trust and communication.

There isn’t a “one size fits all” approach to this challenge, as the nature of “community” and the resources available to conduct outreach will vary depending on the purpose and infrastructure of the biobank (population, disease, institutional, networked, etc.).

At this roundtable, we want to hear how your community engagement efforts have informed biobank governance issues. We are especially interested in how biobanks around the world have engaged under-resourced communities and have worked to ensure that vulnerable populations are able to benefit from the research the biobank makes possible.

What would you like to know about the Qualification in Biorepository Science ( QBRS ) Exam
Facilitator: Brent Schacter, CancerCare Manitoba, Canada

Well-trained biorepository staff are essential to assure high quality research specimens. ISBER and ASCP BOC ( American Society for Clinical Pathology Board of Certification) have developed an online qualification examination through which individuals may earn a biorepository qualification credential, the Qualification in Biorepository Science ( QBRS).

In this roundtable we will provide participants with information and entertain questions about the background of the QBRS exam, the format and content of the exam, details of the application process, why the exam is important for credentialing biobank professionals, and how applicants have received the exam.

Community Voices Needed! Be Part of Building a Bridge Between the ISBER Best Practices 4th and 5th Editions!
Facilitators: Clare Allocca, National Institute for Standards and Technology, USA, Emma Snapes, BioConsulting, Ireland

ISBER has begun to revise the Best Practices, and we need your help. No matter the domain you work in, or your experience in biobanking, we believe you are well positioned to identify gaps / issues in the 4th Edition. It would, of course, be best if you have already downloaded and read the 4th Edition (please!)! In order for the Best Practices 5th Edition to best serve the entire biobanking community, we want to hear your experiences and needs. We would very much appreciate your input regarding any improvements you deem beneficial, whether through improving existing content or adding new sections.

Welcome Address
Piper Mullins, ISBER President 2021-2022
Neil Fleshner, University Health Network

Daily Briefing
Heidi Wagner, Program Committee Chair

Keynote Lecture: Biorepositories as the Optimal Nexus of Key Innovation Vectors
Sam Salman, MiR Scientific LLC, USA

Biorepositories are positioned to transform their operations to remain relevant by accommodating key vectors of innovation in Biomolecular Profiling, Big Data, Precision Medicine, and Population & Health Equity. As this happens, biorepositories offering, fair and ethical collections equalize the competitive landscape for researchers and startups by uniquely enabling cost-effective data generation needed for their progress milestones. For multinationals, biorepositories can emerge as a keystone upon which major initiatives in machine learning using EMR data from hospital and population record systems and could be grounded in biological evidence needed to interject new insights unknown at the time of chart entries.

Biobanking and Artificial Intelligence (AI) from an International Perpsective
Zisis Kozlakidis, International Agency for Research on Cancer/World Health Organization, France

Artificial Intelligence (AI) is gradually changing medical practice. With recent progress in digitized data acquisition, machine learning and computing infrastructure, AI applications are expanding into areas that were previously thought to be the exclusive domain of human experts. One such area is biobanking, which forms a natural extension for AI-driven activities, both because biobanking is a foundational activity for downstream precision medical research, as well as because biobanking can increasingly accommodate high-throughput sample-, image- and data-handling operational models. The increasing AI-driven appetite for higher volumes of data and images often necessitates the cross-border collaboration of biobanks; likely to develop to one of the major forces dictating the international biobanking collaboration in the near future.

Implementing a Biorepository Quality Management System
Dominika Ryba, Ann & Robert H. Lurie Children’s Hospital of Chicago, USA

Biospecimen collection is fundamental to both diagnostics and research studies. Results of analyses of biological samples can be influenced by conditions to which samples have been exposed during sampling, processing, and storage. Investigators need to ensure that samples used for research are of good quality. Having a Quality Management System (QMS) ensures that high-quality samples are stored and could later be used for biomedical research especially in the pediatric population. That is why implementing and maintaining a QMS is important for a biorepository.

Socio-Cultural Considerations for Biobanking in South Africa
Keymanthri Moodley, Stellenbosch University, South Africa

Biobanks are precariously situated at the intersection of science, genetics, genomics, society, ethics, the law and politics. This multi-disciplinarity has given rise to a new discourse in health research involving diverse stakeholders. Each stakeholder is embedded in a unique context and articulates his/her biobanking activities differently. To researchers, biobanks carry enormous transformative potential in terms of advancing scientific discovery and knowledge. However, in the context of power asymmetries in Africa and a distrust of science born out of historical exploitation, researchers must balance the scientific imperative of collecting, storing and sharing high quality biological samples with obligations to donors/participants, communities, international collaborators, regulatory and ethics authorities. A host of ethical considerations add complexity to the biobanking process: informed consent, confidentiality, ownership, benefit-sharing and commercialisation. These challenges must be viewed with a socio-cultural lens in South African communities.

Join us in the poster hall to peruse the latest research in biobanking and connect directly with the poster presenters. All poster presenters will be available within their poster booth to chat with delegates.

How Biobanking Can Help Bridge Health Disparities

Biobanks have been crucial in the development of novel research by providing a central location for access to high-quality samples and data. How do biobanks ensure their samples and data are truly representative of diverse populations and ethnicities? Can biobanking reduce health disparities adversely affecting groups based on racial or ethnic origins, or those experiencing social and/or economic obstacles?

By creating pathways for biobanks to engage and collect valuable data and samples from underrepresented populations, biorepositories can help drive new research and targeted therapies centred towards addressing health challenges faced by underserved populations.

Join our experts in discussing the challenges, successes and lessons learned in reconciling health disparities.

Moderated by: Karen Kippen, Henry Ford Medical Group, USA

Panelists:

• Arjun Manrai, Harvard Medical School, USA
• Helen Morrin, University of Otago Christchurch, New Zealand
• Dave Chesla, Spectrum Health, USA

Putting ISO 20387 into Context: A World of Tool and Resource Possibilities
Facilitators: Clare Allocca, National Institute for Standards and Technology, USA, Emma Snapes, BioConsulting, Ireland

Now that ISO 20387 General requirements for biobanking, the world's first international biobanking standard, has arrived and is in use, how is it positioned within the world of tools and resources? With so many tools at my fingertips, how do I assemble my personal biobank toolbox? You might begin by assessing your biobank's mission, objectives, and priorities. Then ask yourself: what tool would I wish for to address my greatest challenge(s)? This RoundTable discussion will explore some possibilities, particularly those that apply to ISO 20387. We invite you to share your experiences and desires in tool development and application.

Consenting in the Digital Era
Facilitators: Paul Macpherson, Phyllis Billia, University Health Network, Canada

Digitalizing the consent process is a topic that many biobanks and institutions are looking to explore, including programs at the University Health Network (UHN). In this roundtable, we will provide the opportunity for delagates to discuss some of the challenges faced during the consent process, and how digitlization can help create a more dynamic and efficient way of reaching potential participants. Join our experts in discussing the challenges, successes and tools used to bring the consent process to the digital era.

What is the fiduciary duty of biobanks to return research results back to patients?

Biobanks are crucial resources for the conduct of biomedical research and advancing science. Through the years, biobanks have faced ethical, legal, and social dilemmas that arise in the context of the return of results and incidental findings to patients and their families. Challenges include determining the scope of findings to return, and facilitating the resources and expertise needed to provide meaningful disclosure, including genetic counseling as appropriate. Ethical questions arise, such as: Do biobanks have a responsibility to protect participants from poorly validated information? What is the duty to disclose variants of unknown significance?

Through a series of cases, based on real-life occurrences, a diverse group of world-renowned clinicians and biobank experts will explore these issues and consider the fiduciary duty, ethical responsibility and challenges surrounding the return of research results to patients.

Moderated by: Carol Weil, National Institute of Health, USA

Participants:

• Neil Fleshner, Princess Margaret Cancer Centre - University Health Network, Canada
• Yvonne Bombard, Unity Health Toronto, Canada
• Birendra Kumar Yadav, National Liver Disease Biobank, India

Objective Quality Assessment of Nucleic Acid Samples: Considerations and Solutions for Biobank Laboratories
Ashok Manickaraj, Agilent Technlogies

Expand the Future Use of Biobank Samples Using NMR-Based Clinical Research Solutions
Roland Leiminger, Bruker BioSpin

Discovering Samples Across UHN’s Biobanks Using TECHNA's Biospecimen Portal
Sharon Narine, Kevin Wang, Techna Institute

Anatomy of a Cryogenic Freezer, Alarm Preparation and Response
Lelie Gallagher, Core Cryolab

Adopting and Adapting to the New e-Health World: Value Shift for Clinical Research and Biobanking Practices
Alejandro Berlin, Princess Margaret Cancer Centre - University Health Network, Canada

We will review how e-Health is becoming part of the fabric of routine care, generating a pressing need for clinical research and biobanking to evolve.Through examples and ideas this talk should stimulate thinking, discussion and hopefully an 'out of the box' mindset to move the field forward.

Data Sharing: From Big Initiatives to Local Impact

The need for global sharing of genomic and health-related data is becoming imperative as the fight for improving the health of individuals, communities, and populations gather ground. It has increasingly become clear that access to widely dispersed data is the need of the hour for carrying out research. Biobanks are a key to the biomedical research infrastructure and are well poised to lend support.

In this workshop we will explore how the worldwide data deluge is leading to major developments in national and international data infrastructure of biobanks. We will then dive into with the associated governance principles and then consider how these impact biobanking operations on a day-to-day basis. Participants will engage in discussions with their colleagues and experts in the field to learn how biobanks are fundamental contributors for data sharing and how to maximize contributions to the effective and efficient applications of biospecimen-derived data to clinical settings, patient management and public engagement.

Chairs:

• Daniel Catchpoole, Kids Research, The Children's Hospital at Westmead, Australia
• Shonali Paul, Cloudlims.com, India

Presenters:

• Francesco Florindi, Thermo Fisher Scientific, Belgium
• Asif Gill, University of Technology Sydney, Australia
• Rita Lawlor, ARC - NET Centre for Applied Research on Cancer, Italy
• Charles Wang, Shanghai Xinhua Hospital, Shanghai Jiao Tong University School of Medicine, China