What is a Biobank?

A biobank is a collection of human tissues and blood that can be used for research, criminal investigation, human identification or other purposes. These can contain many different types of biological samples (eg. tissue samples, DNA and blood) and information (eg. health records, diet and lifestyle information, family history of disease, gender, age, ethnicity). Collections of some samples, such as autopsy materials, have been in existence for decades, while others are currently being established for specific purposes or to reflect the genetic makeup of particular populations. Biobanks exist in hospitals, universities, research institutions and private companies and these biobanks vary in size and purpose.

What is Biobanking in BC: A Deliberative Public Consultation about?

Biobanks are vital to health research, helping to improve our knowledge of disease, pinpoint environmental toxins, provide genetic markers for diagnostic tests, and to understand why people respond differently to pharmaceuticals.

Currently, there is no Canadian legislation specific to biobanks and this leaves unresolved serious concerns involving informed consent, confidentiality, secondary use of samples, and information and benefit sharing.

The objective of this research project is to support the development of a governance structure (guidelines, protocols and policies) for the BC BioLibrary that is ethical, trustworthy and politically legitimate.

Do I need to know anything about biobanks to participate?

No. We are not expecting you to have any specialized knowledge about the biobanks. Instead, you will have the opportunity to easily learn everything you need to know to make an informed contribution with the other participants. The research team will provide you with all the information you need and will always be on hand to answer any questions you may have. As a participant, it’s your perspective and experience as a citizen of BC that matters — not your expertise.

Why is my participation important?

Genome research affects everyone, and will become more prevalent in the future. It is important that citizens are aware of this research and contribute their perspective to the development of policies that will set standards for this emerging science. In the course of our research, we’re seeking a diversity of opinions from a wide range of individuals. This includes members of the public with no knowledge of genomics or biobanks, as well as those with a personal, health-related interest.

What is the BC BioLibrary?

The BC BioLibrary is not a biobank and does not perform research. It is a network that compliments current biobanks, maintains stakeholder trust, improves quality and access to human biospecimens for biobanks, research studies and clinical trials, and builds capacity for translational research in BC.

The BC BioLibrary is funded by the Michael Smith Foundation for Health Research. The Foundation supports a broad range of health research applications with a mandate to enhance health research across BC.

What do you mean by a Deliberative Public Engagement?

Many citizens are concerned about the development and regulation of science and technology. In response, social scientists and policy makers are increasingly working to create opportunities where citizens and experts can learn from one another and reach shared conclusions about the best policies and regulations.

Our goal is to inform policy more effectively by seeking input from people from many different backgrounds, and with many different opinions, needs and expectations. By using the knowledge, insight and advice of an informed citizenry to create policy, we can make decisions that reflect social realities and build public awareness and trust for complex medical research.

Deliberation is a respectful discussion in which participants offer views, reasons, and other representations of their views in an attempt to understand each other and determine agreements and disagreements. It is particularly well suited to addressing issues where there may be real and important moral or ethical differences among citizens.

What will happen at the event?

The Biobanking in BC research project takes place over two weekends and involves twenty-five randomly selected citizens from across BC.

The first weekend will include presentations from five or more speakers who provide an introduction to the issue from multiple perspectives. During the second weekend, participants will work in small groups to discuss their values and share opinions concerning biobanks and the regulation of the BC BioLibrary.

There are no tests or trick questions: we are seeking only your opinion, and as such there are no right or wrong answers. A moderator will keep the discussion friendly. To participants it should feel a bit like an extended kitchen table conversation among friends, some of whom will agree and disagree as the conversation unfolds.

The discussions will be audio-recorded, though the confidentiality of all participants is assured.

Who is organizing Biobanking in BC: A deliberative Public Consultation?

Biobanking in BC: A Deliberative Public Consultation is being organized by the Face-to-Face (F2F) research team at the University of British Columbia’s Centre for Applied Ethics and the BC BioLibrary.

The F2F team designs and tests methods to support public involvement in the ethical analysis of issues relating to biotechnology and genomics.

More information about our work is available at: http://gels.ethics.ubc.ca:8213/ge3ls-arch/face-to-face

Members of the research team can be viewed here: research team

Who will get to see the information and what will they get to see?

Only the research team will ever see the data from the event. None of the comments, suggestions or opinions you provide will ever be linked back to you personally. However, this unlinkable information will be retained for further analysis.

The conclusions from the event will be published and sent in report form to policy makers and used to inform the way the BC Biolibrary is managed. You will receive a copy of this report.

We encourage all participants to refrain from disclosing the identity of participants outside of the event. However, despite our promise of confidentiality, we cannot control what other participants do with the information discussed.