Most biobanks are started to support a research program in a specific type of disease or to collect samples from a particular group of donors. However, because the resource requirements are so large, biobanks within an institution usually conglomerate to reduce expenses. A result of this merging is that biobanks often have many kinds of samples and many different types (called “domains”) of data.

In this way, they foresee building a resource that might be useful in the future, as new analysis technologies and computational biology advance into areas that cannot as yet be predicted.

Sample types

Samples can include any kind of tissue, fluid or other material that can be obtained from an individual. Usually, biospecimens in a biobank are blood and blood components, such as serum, and solid tissues, such as small biopsies collected during diagnosis and tumors resected during surgery.

Many other types of materials can be collected as well, including urine, spinal fluid, and stool. In some very large studies that include an environmental component, the materials in the biobank can include such items as nail clippings or hair strands. Another important collection in biobanks are the so-called “normal” samples; that is, the tissue samples that are free of diagnosed disease that can be used as controls in scientific studies.

Data types

The data collected from a donor to accompany the sample can be very extensive and diverse, including:

• General demographic information (e.g., race, gender, and age);
• History of present illness, treatments, and responses (especially prescribed drugs and adverse reactions);
• Longitudinal information (e.g., a timed series of blood tests after tissue collection to test if the disease is progressing); and
• Clinical outcomes (e.g., was the treatment successful, is the donor still living).

In most cases, the data will be much deeper in a particular category that is of specific relevance to the disease research that the biobank is expected to support. For example, in cancer one can expect the data to include in-depth pathology reports that would include microscopic and molecular analysis of tumor material used for the patient’s diagnosis.

It should be noted that biobanks usually do not collect sensitive data, such as information about sexually transmitted diseases, substance abuse, and mental illness, unless it is a requirement of a specific study that the biobank is intended to support. Biobanks also do not generally collect the scientific data generated by researchers in their studies using biological materials. Since the role of the biobank is to act as the “bridge” between the donor and the researcher, the scientific data emerging from the research is usually considered out-of-scope.