Information for the public
This is a brief outline of the biobanking concept. If you have provided a sample and are looking for contact details, consent forms or how to request registry excerpts, read more here.
What is a biobank?
A biobank is like a safety deposit box for samples taken from the body, such as blood. The biobank offers secure storage until the samples are needed, for example, to compare health status and track biological changes before and after a disease develops. Samples can be collected for biobanking as part of routine healthcare or in the context of a research project.
Stored samples provide a unique opportunity to look back in time and gain insights that may prove valuable for the future treatment of you, your children and your relatives – or of others, through research.
How does it work?
When a sample is stored in a biobank, the Swedish Biobank Act applies. The act aims to protect the integrity and interests of the donors. According to the act, samples must be stored in a safe and secure manner to ensure that unauthorized persons cannot access them or link them to your identity. Moreover, samples may only be used for specific and limited purposes, primarily healthcare and research. For example, they may not be used in criminal investigations.
In a traditional bank, all the safety deposit boxes benefit from the bank’s shared security systems, but the contents of any particular safety deposit box cannot be accessed without the key issued to the holder.
Biobanks work in a similar way; the biobank’s facilities (including freezers, other storage units, and secure data systems) protect the entire collection of samples. Nevertheless, you – the sample donor – have the ultimate say on what happens with your samples. The key, in this case, is your consent, and you may change or withdraw it at any time without justification.
What is the value of using biobank samples for research?
Medical research is often conducted by comparing samples across many different donors, and collecting a sufficient number of samples can take years. Biobanks are a valuable resource, as samples already collected can significantly advance research and speed up the development of improved treatment options. While there is no guarantee that results based on your samples will be implemented in your own care, this type of research saves lives, and the care you receive today was developed through similar contributions by others. Ultimately, it is a way of helping each other.
Also in the context of research, you, as the donor, hold the key to your own safety deposit box. Research projects that are interested in using your samples must be approved in advance by an ethical review authority, and sample donors are invited to participate.