Biobanks and Databases: further reading

This activity is centred on the collection of biological samples and genomic information. Biobanks and databases are essential for the development of biomedicine and, thus, fully necessary, but care has to be taken to preserve personal integrity and rights.

A biobank is a type of biorepository used to store biological samples (usually human) for use in research. More and more general biobanks are being organized, with samples and data for large numbers of individuals (or cohorts of individuals) that can be considered the general population. In research, this has been an important step, as these biobanks are open to many different researchers, who thus do not have to collect samples for their own study. Additionally, the information associated with each sample can be used for different studies. However, biobanks give rise to important questions concerning safety, storage, ownership, privacy, consent, rights and biobank governance. They are necessary and constitute a major step forwards in biomedical research, but they have to be very carefully organized and maintained. Because they are a continuous source of new questions and concerns, it is essential to have a strong ethical and legal framework.

The most important general biobank is the UK biobank. A good description can be found at this website.

The information collected by biobanks includes genetic information, which, in some cases, may even include whole genome sequences of individuals and data on RNA expression. But many other studies, not based on biobanks, also involve the collection of samples and production of a huge amount of genomic information for large numbers of individuals. Sometimes, these samples are simply anonymized and labelled as belonging to a population; in other cases, they may include clinical information; and in still others, they may contain more detailed data, including some that is very personal and sensitive. All this information can be turned into a database with varying degrees of information, and both the conditions governing that process and the security of the information have to be properly addressed. This is especially true given that genomic information is unique and may clearly identify an individual.

People take a wide range of positions regarding the disclosure of genomic data. Some are very cautious and call for strict rules; others would like to have open access to as much genomic information as possible. Two very different cases are described below.

• The Personal Genome Project in which participants are invited to publicly share their genomic and trait data in an integrated, publicly-accessible forma. Neither anonymity nor confidentiality of the participants’ identities or data are guaranteed to the research participants.
• deCode genetics a global leader in analysing and understanding the human genome. The company has a fantastic discovery engine that works with a large database of medical and genomic records for a large proportion of the population of Iceland. The ELSI (ethical, legal and social implications) of both biobanks and biomedical databases are under continuous study and a constant topic of debate, as they can change over time and have to be ready for technological developments.

A more detailed view can be found in the [Wikipedia] entry (https://en.wikipedia.org/wiki/Biobank) for Biobank. An overview of the efforts of ELSI committees to coordinate and have a global scope. Finally, a general list of the very heterogeneous biological databases.

Explanation of the UK Biobank. The British Medical Journal has also produced a video explaining it, featuring the UK Biobank director explaining it.