Getting involved
In this section you find information if you want to get involved in medical databases and biobanking. Questions on why you should join, if it is safe, and where you can find biobanks are answered here.
1. Why should I take part in a biobank?
2. Is it safe to join a biobank?
3. Where can I find biobanks?
4. Can I leave a biobank after I have joined one?
5. Why does a biobank need my sample, and samples from so many people?
1. Why should I take part in a biobank?
Donation of a sample to a biobank is almost always voluntary and undertaken for altruistic rather than for monetary motives, namely to help move research along and ultimately make progress in creating better medicines.
Benefit sharing and patient groups
Close links between patient groups and researchers are essential to ensuring that progress in curing genetic disease can continue.
If you belong to a patient group, such links may enable you to find out about new therapies and treatments, and information about future ones that would otherwise be difficult to find out about.
Patient groups also play a crucial role in passing the benefits of research back to those affected by genetic conditions. By existing between between the pharmaceutical industry and patients, patient groups act as a way of transferring benefits, ensuring they reach patients in the most useful and appropriate way.
See the Eurogenguide for more information on Access and Benefit sharing.
2. Is it safe to join a biobank?
There is only a tiny physical risk because sample taking is a very simple procedure. The procedure carries the same risk as, for example, any minor cut which punctures the skin and carries a very small chance of an infection being introduced into the body.
3. Where can I find biobanks?
There are many different types of biobanks, found in different kinds of insitutions depending on what kind of research the organization carries out.
- Some biobanks can be found in places such as university hospitals. Often the collections of material will have grown naturally from samples being taken from patients in the course of treatment.
- Other biobanks are set up by independent research companies or drug companies, who are carrying out research and development into new treatments.
- More recently, several countries have set up national biobanks, holding the biological data of up to several hundred thousand people. These biobanks try to encourage members of the public to donate samples, instead of just taking their samples from patients who are being treated.
- If you have been asked if you would like to donate a DNA sample to a biobank, those asking you will be able to tell you what the purpose of their biobank is.
4. Can I leave a biobank after I have joined one?
This depends on the biobank and on what you agree when you join.
The right to withdraw consent, and the implications of doing so, should be fully explained when you provide a sample for the biobank.
Whilst an individual has the right to withdraw consent, it may be impossible for biobanks that anonymise samples to be able to identify your particular sample in order to destroy it.
Withdrawal is only possible if the anonymization process has not taken place. Also, if analyses have already been performed on your sample, it is likely to be impossible to erase results from databases or reports that may have already been issued.
However, where samples have not been anonymised, you should have the right to withdraw your samples at any point if you wish.
5. Why does a biobank need my sample, and samples from so many people?
This is done in order to ensure the accuracy of results.
The number of samples necessary depends on the research question that scientists seek to answer. All medical research results depend on appropriate statistical analysis. To arrive at conclusions that are reliable and not likely to be a coincidence or due to chance, it is always necessary to examine a number of key samples in each group. This will allow the identification of shared or common characteristics, such as a biomarker that is typical for a disease.
Generally, the more complex a question asked is, the larger the group of research participants will need to be. Commonly, study sizes range from less than 100 to many thousand participants. A biobank that contains samples that will allow a number of such studies to proceed may therefore reach considerable size.