Public Information

The Biobanking & Biospecimen Research Services (BBRS) 

The BBRS provides advice and support services for basic translational and clinical researchers in BC and beyond. Its active biobank is under the custodianship of Dr. Peter Watson and it collects and, stores researchers human samples (for example: tissue, blood, fluids), and health information connected to these samples. Researchers who are looking for new ways to detect, treat and prevent cancer, can apply to access the samples and information that are stored to conduct their own studies. The BBRS supports many types of research studies. It is thanks to the generosity of our biobank participants that researchers can access the human samples and data they need for their research. More than 90% of patients asked to contribute their samples and health information to the biobank generously consent. To date more than 6000 participants with different cancers have contributed to the biobank.  

Canadian Tissue Repository Network (CTRNet) 

CTRNet operates as a not-for-profit association of leading provincial tumour banks and programs that furthers Canadian health research. CTRNet provides interested researchers with a streamlined process to obtain quality human tissue and human tissue products from member tumour banks. The BBRS hosts the BC node and coordination center for the network. More Info

Biobank

Collection of human biospecimens and associated data compiled for research purposes. Biobanks may be independent or part of a network or part of a research project (e.g., a study or clinical trial). (adapted BRC glossary)

Biospecimens

A biological specimen from the human body including tissue, blood, blood components, cell lines, saliva and urine. (adapted BRC glossary)

Confidentiality

 An ethical and/or legal responsibility of individuals or organizations to safeguard information entrusted to them, from unauthorized access, use, disclosure, modification, loss or theft (TCPS 2, 2018).

Custodianship

Responsibility for safe keeping of biospecimens and associated data and control of their use and eventual disposal in accordance with the terms of the consent given by the participant and as regulated by the Research Ethics Board. Custodianship implies some rights to decide how the biospecimens are used and by whom, and also responsibility for safeguarding the interests of participants. (adapted BRC glossary)

De-identified biospecimens or data

Biospecimens/data that have the direct identifiers removed and replaced with a code or number. Depending on access to the code, it may be possible to re-identify specific participants (e.g. the principal investigator retains a list that links the participants’ code names with their actual name so data can be re-linked if necessary). Also known as coded information (adapted from TCPS 2, 2010). (adapted BRC glossary)

Governance

The processes and structures used to set the objectives for an entity, appoint the management whose responsibility it is to achieve these objectives and to oversee the operation (staff and processes) in its pursuit of these objectives. Governance mechanisms also provide internal controls and risk management systems. Management is accountable to the governance bodies that in turn are accountable to those who have appointed them (adapted from OECD Guidelines on Human Biobanks and Genetic Research Databases, 2009). This includes:

• External governance: External requirements for which the biobank has no authority but must fulfill).

• Internal governance: Mechanisms created by the biobank to fulfill certain requirements or roles.

(adapted BRC glossary)

Incidental Findings

Unanticipated discoveries made in the course of research that are outside the scope of the research. (adapted BRC glossary)

Informed and Voluntary Consent

A process by which an individual freely and voluntarily confirms his or her willingness to participate in the biobank, after having been informed of all aspects of the research that are relevant to the their decision to participate. Informed consent is documented by means of a written, signed and dated informed consent form. (adapted BRC glossary)

Participant

An individual (patient or healthy volunteer, if applicable) who is the source of the biospecimen or data. Also sometimes referred to with the terms, ‘subject’, ‘donor’, or ‘case’. (adapted BRC glossary)

Precision medicine

Precision medicine is "an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person." This approach will allow doctors and researchers to predict more accurately which treatment and prevention strategies for a particular disease will work in which groups of people. (NIH – National Library of Medicine)

Research

A disciplined inquiry or systematic investigation, including research development, testing, and evaluation, undertaken to extend knowledge. Human health research includes research aimed at extending knowledge.on our understanding of the structure, function and disorders of the human body. (adapted BRC glossary)

Research Ethics Boards

An independent body (a review board or a committee, institutional, regional, national or supranational) constituted of medical and scientific professionals and non-medical members) established by an institution to review the ethical acceptability of all research involving humans conducted within the institution’s jurisdiction or under its auspices. (adapted BRC glossary)

Tri-Council Policy Statement - Ethical Conduct for Research Involving Humans (TCPS2)

The official human research ethics policy of three Canadian Agencies, the Canadian Institutes of Health Research (CIHR), the Natural Sciences and Engineering Research Council (NSERC) and the Social Sciences and Humanities Research Council (SSHRC). (adapted BRC glossary)

Withdrawal

The situation that arises when an individual has consented to participate in a biobank and then at a later time communicates to the biobank that they wish to reverse this consent decision. The biobank must irreversibly destroy all remaining biospecimens and all identifiable data relating to the individual and biospecimens. In the case that biospecimens or data were released to a researcher prior to the revocation, the biobank should retain an anonymized record of the biospecimen release (biospecimen code number and who received those biospecimens). (adapted BRC glossary)

All research involving humans and human samples/information is reviewed and approved by an ethics committee.  

The BBRS is committed to ensuring:

• That the collection of tissue and blood samples does not interfere with patient medical care. 
• That Informed and voluntary consent is obtained from all participants. 
• That participant confidentiality is maintained.

The BBRS takes many steps to protect the privacy of its participants including:

• Removing identifiers such as name and date of birth from tissue and blood samples and storing and releasing them with coded numbers. 
• Health information and research data is kept on secure computers, in permission controlled files and is accessed using passwords or encryption. Paper files are kept in secure areas. 
• Not giving out information that identifies participants, except when required by law.

All team members of the BBRS complete education related to ethical conduct of human research, privacy and confidentiality and sign a confidentiality agreement.