Medical data and biobanks
In this topic you find information how biological samples donated by you are stored and used in genetic research.
Developments in genomics and in bio-informatics have made it possible to analyse quantities of data and samples that even a few short years ago would have been unimaginable. This large amount of data allows us to examine the relation between genes, and between genetic, environmental and lifestyle factors. This will help to understand common complex diseases (like heart disease, diabetes, cancer and mental health disorders), and to develop targeted therapies to treat and possibly even cure them.
In order to generate the data necessary to undertake this research has led to the establishment of “biobanks” in the public and the private sector around the world. The largest of these may contain tissue samples and data from half a million or more people. It is increasingly likely that patients, families and members of the general public are being asked to volunteer and contribute to a biobank to help medical research.
Potentially sensitive personal information
If you are asked to contribute your tissue and to volunteer potentially sensitive personal information, it is important that it is clear to you what is being asked of you. We assembled a list of questions that have frequently been asked by those thinking about volunteering in a large scale research activity. This will help to clarify the aims and purposes of biobanks, so as to help promote informed engagement by patient and from healthy citizens.