Biobanks – collections of biological materials and information

The term ‘biobank’ can refer to many different types of collections of biological materials and information - from plant seed banks, to collections of mouse tissue, to police DNA databases, to collections of cancer biopsy samples in hospitals.

Human biobanks and research

In this consultation we will focus mainly on human biobanks that are used in research. 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).

These biobanks vary in size and purpose. Two common types are disease-based biobanks and population biobanks:

●  The Norwegian Multiple Sclerosis (MS) Registry is an example of a disease-based biobank. It contains samples and information from MS patients and aims to find new treatments for the disease.
●  The new UK Biobank is an example of a population biobank. It aims to collect samples and information from 500 000 British people and to help researchers learn about the complex relationships between genes, lifestyle, environment and disease.

Controversies and disagreements

Biobanks are becoming increasingly valuable in health research. But scientists disagree about which types of collection are best. Geneticists often prefer collections of disease samples, and hope that their research will produce new drugs and treatments. Epidemiologists often need lifestyle information and samples collected regularly from large numbers of individuals throughout their lives – to understand the genetic and environmental causes of disease.

Many researchers agree on one thing – that easier, cheaper, access to samples is needed. But other individuals and organisations have other concerns. The Nuu-chah-nulth First Nations on Vancouver Island became angry in 2000, when they discovered that samples donated for arthritis research had been used for other purposes. Some disease sufferers hope desperately for genomics research to generate drugs and cures; some feel insulted to be called ‘diseased’ or ‘disabled’ at all.

There are fears of discrimination if employers and insurers gain access to people’s genetic profiles. There are questions about who profits financially from donated samples and about the commercialisation of research.  There are concerns about  privacy and civil liberties and about genetic researchers ‘playing God’.

How biological samples and data should be collected, stored, accessed and used is a hot topic!

Why talk about biobanks?  

A discussion about biobanking in British Columbia is long overdue. There are plenty of diverse expert opinions on the subject. But for science to be democratic it must be discussed by, and supported by, the public. Your views are important.

What values should guide biobanking in BC?

Some of the most fundamental questions about biobanking do not require scientific expertise. We hope that you will help us begin answering this one in April….