Case study - Biobanking
The following case study highlights some of the issues which can arise when working with data in particular domains.
Biobanks are research projects, often at a national level, that collect and analyse both data and samples that are collected longitudinally over a period of years.
The information held in a biobank is potentially very varied, and can include demographic details, health records, tissue and fluid samples and results of biomedical laboratory analyses.
Issues that may arise:
- Consent is often generic – biobanks are set up so that a range of investigators can use them as a resource to investigate a variety of diseases/processes etc.
- It is not always possible to state exactly what will happen to the information gained, therefore individuals must give broad consent to the use of such information.
- The samples and data held in such banks may need to be transferred across national boundaries to extend and enhance research studies.
A careful balance must exist between maintaining an individual's autonomy and stifling the potential research that could take place as part of the study.
Biobanking has been the focus of much discussion from an ELSI point of view, and whilst careful consideration is required when setting up such a project, a number of large national projects are successfully running across the EU. Research infrastructure projects such as BBMRI-ERIC provide support for these national projects, facilitating access to the materials held within each country whilst also providing guidance on sharing materials and data without comprimising the interests of the participants who provide the material.